I suppose I should begin this post with an apology....
The idea of getting a blood transfusion is so "normal" to me, that I didn't realize people would be so concerned about me during and/or afterward. I should have posted an "I'm alright" update after the transfusion on Friday, but I am a "no news is good news" kind of gal. Many people have asked how I am doing (probably many more wonder but are too shy to ask), so I apologize now for not giving a quicker update!
The transfusion itself went fine. It was done as an out-patient procedure at the Infusion Center at the Midland hospital. The only complaint that I have about the process is that I was there from 9:30 a.m. until 4:30 p.m.. The transfusion itself only took about 4 hours -- most of the other time was spent waiting...
The Infusion Center is set up so that each person has their own private area (separated by curtains) for treatment. Each chair faces a serene, wooded area (very pretty with the new snow), and each chair also has a portable television for your viewing pleasure. This is all wonderful when you are getting treatment. The downside is that your back is always to the nursing staff, so you have to work to make eye contact and to get their attention to remind them that you are still waiting for treatment. I didn't mind the waiting in the morning, but as afternoon drew near (and I had commitments with my kids), then I became more impatient.
The infusion did make me feel better. Not immediately, but today (Monday) I can tell a difference. I can climb a single flight of stairs without feeling like my heart will pound out of my chest. Generally speaking, I feel more energetic and more like myself.
My next blood draw will be this Thursday, December 18. I am hopeful the blood numbers will reflect how much better I am feeling.
I also want to clarify that a problem with my blood (i.e. leukemia or the like) is a possibility, not a given. Again an apology if I scared with you with that bit of news....
It is something I mentioned for prayer support, but I have not been diagnosed with anything new.
My Beaumont doctor does not think I have a blood problem, and his opinion is very reassuring. His observation is that my body has had to put energy into rebuilding my platelet count (which is normal now and, according to him, is the most important component of blood health) such that I have not had the energy to rebuild the red and white blood cells (which, he says, always take longer to return to normal).
So, I am "realistically worried" -- not moping about it day to day, but definitely will feel better in the next few months to see my blood levels return and stay at normal range.
The New Year is approaching and I will be GLAD to say good-bye to 2008. It has had its good moments (a family trip to Orlando, Shane/Tyler going to Montana with church), but overall it has been a stressful, worrisome year. Here is to looking forward to a much more healthy and peaceful 2009!
Monday, December 15, 2008
Friday, December 12, 2008
Blood Work -- A See Saw
Yesterday (Thurday) I had my blood count check. Platelets are back in the normal range (yea!), but white blood count (wbc) and hemoglobin are still very low. The wbc has remained the same, and the hemoglobin has dropped from 7.0 to 6.6. There are multiple theories/concerns about this scenario:
Please pray for healthy, restored marrow at the end of all of this. I trust the experience of my Beaumont doctor, and believe that he has a better understanding of my health history. I don't want to have to have a bone marrow biopsy down the road. That would certainly be out of my comfort zone.
- My Beaumont doctor's theory is that my blood work is down because of amount of chemotherapy I've had over the course of the last two years. This is why we stopped the chemotherapy a couple of weeks ago. As for my blood levels today, he says my body has been working so hard to get the platelets into a normal range that it has not had energy/time to work on wbc and hemoglobin. He maintains that platelets are the most critical units of blood of health, and their gain is a good sign. Hemoglobin apparently always takes longer to rebuild, and he thinks it would rebuild on its own in 3-6 weeks. In the meantime though, he maintains that I'll feel weak and tired -- "miserable through Christmas." He wants me to have a blood transfusion.
- The Midland doctor is much more concerned with the possibility of a bone marrow problem, caused by the amount of chemotherapy that I've been exposed to. He would like to hold off on doing a blood transfusion, do a bone marrow biopsy, and see if I have disease of the bone marrow (i.e. leukemia, other).
- A third, almost unspoken possibility is that my cancer has moved into my spine or bone marrow. Again, a bone marrow biopsy has to be used to confirm this.
Oh what I would do to have
The kind of faith it takes
To climb out of this boat I'm in
Onto the crashing waves
To step out of my comfort zone
Into the realm of the unknown where Jesus is
And He's holding out His hand
But the waves are calling out my name
And they laugh at me
Reminding me of all the times
I've tried before and failed
The waves they keep on telling me
Time and time again. "Boy, you'll never win!"
"You'll never win!"
Chorus:
But the voice of truth tells me a different story
The voice of truth says, "Do not be afraid!"
The voice of truth says, "This is for My glory"
Out of all the voices calling out to me
I will choose to listen and believe the voice of truth
Please pray for healthy, restored marrow at the end of all of this. I trust the experience of my Beaumont doctor, and believe that he has a better understanding of my health history. I don't want to have to have a bone marrow biopsy down the road. That would certainly be out of my comfort zone.
Friday, December 5, 2008
Friday's Update
More blood work today... Platelets (responsible for blood clotting) have doubled from 24K to 48K. The normal range is 140-400, but they are moving in the right direction (without a transfusion) so that is good.
My white blood cell count has remained low all week at 1.6; the normal range is 4.1-10.9. Doctor wants me to avoid crowds as much as possible.
I added a new doctor to my care today -- Dr. Maksoud in Midland. He is an oncologist, and has already had conversations with my Beaumont doctor. Between the two, my care can be more easily managed in Midland. I will still see my Beaumont doctor as my primary cancer physician, but if something unexpected happens (like the infection I had in October), it will be much easier to manage it with two doctors who speak the same med-language.
All of my treatment is finished for this cancer. The plan for now is a "wait and watch," via bone scans, CAT scans, etc. I'll have these about every 3-6 months. It is time to move on with my life -- out of the treatment phase to the survivor phase.
Many people have talked about celebrating this... It is a milestone, and I do want to acknowledge it. But, I read a book that likened being a cancer survivor to the character PigPen from Charlie Brown -- for a long time afterward, you always feel like a cloud is over your head.
Here's to clear skies!
My white blood cell count has remained low all week at 1.6; the normal range is 4.1-10.9. Doctor wants me to avoid crowds as much as possible.
I added a new doctor to my care today -- Dr. Maksoud in Midland. He is an oncologist, and has already had conversations with my Beaumont doctor. Between the two, my care can be more easily managed in Midland. I will still see my Beaumont doctor as my primary cancer physician, but if something unexpected happens (like the infection I had in October), it will be much easier to manage it with two doctors who speak the same med-language.
All of my treatment is finished for this cancer. The plan for now is a "wait and watch," via bone scans, CAT scans, etc. I'll have these about every 3-6 months. It is time to move on with my life -- out of the treatment phase to the survivor phase.
Many people have talked about celebrating this... It is a milestone, and I do want to acknowledge it. But, I read a book that likened being a cancer survivor to the character PigPen from Charlie Brown -- for a long time afterward, you always feel like a cloud is over your head.
Here's to clear skies!
Wednesday, December 3, 2008
Blood Work is Holding Steady
Just a quick update... my blood work is holding steady, so I am not getting any transfusions.
My next blood check will be on Friday. The hope is that we'll see a big jump in my blood counts, and that I'll avoid a transfusion completely.
I've taken the week off from the library to rest more at home. I feel stronger each day, but still can tell that my energy level is not where it should be.
One day at a time.... ! :-)
My next blood check will be on Friday. The hope is that we'll see a big jump in my blood counts, and that I'll avoid a transfusion completely.
I've taken the week off from the library to rest more at home. I feel stronger each day, but still can tell that my energy level is not where it should be.
One day at a time.... ! :-)
Tuesday, December 2, 2008
No More Chemo....
"No more chemo," says my oncologist. My body is saying, "Enough." That was his decision yesterday after reviewing my blood work.
The normal routine for a chemo visit is to have a blood draw, followed by a quick chat with the oncologist, and then off to what I affectionately call "the chair" for chemo drugs. It is a predictable routine. But yesterday, I was called back for a second blood draw -- it seemed that all of my blood levels were low, and they wanted to do a recheck before I saw the doctor.
The second draw was consistent with the first -- my blood is once again in crash mode: hemoglobin, red blood cells, white blood cells, and platelets were all below acceptable levels. Even for an oncologist! This is what happened in October when I was hospitalized, but to a much less urgent degree. It confirms that carboplatin is most certainly what caused my problems then, and that it is not a good chemotherapy for me. (And that is too bad, because it is an effective and widely used chemotherapy).
The good news is that we are aware of my blood counts, and can monitor them before they become critical. Today, I am to get another complete blood count (CBC). If my numbers are on the rise, then the doctor will let me be and will have me checked again on Friday. The thinking in this case is that my body is building itself back up, and with time will recover on its own. If the blood count numbers are going down, then I'm definitely looking at a platelet infusion. Hopefully not a hospitalization again, but it is possible. I'm not sure if transfusions can be given on an out-patient basis?
Paul put the situation to words very accurately when he said it felt "unfinished" to just quit the chemotherapy altogether. My oncologist had originally wanted 4 doses of carboplatin for me, and we haven't even had 2 complete doses. My oncologist said that he views this as my body saying that it has had too much, and it is time to stop. He reiterated that I've been on chemo since June, and that I'm just not strong enough to continue.
It is important to remember that I've been on chemo all summer to fight the possibility of a cancer in my body. It would be much worse news to stop chemotherapy if I had a definitive tumor that we were fighting. I don't even think my oncologist would stop if cancer existed elsewhere in my body. But in my situation, he has an option -- one is to literally tear down my body with the chemo to fight something that might be there. The other is to respect my body's signals and acquiesce to "Enough is enough." He has chosen the latter. We have to find peace with that decision.
And to be honest, I am at peace. I am relieved to be off this merry-go-round of drugs, fatigue and worry. Being on chemotherapy makes me feel like a sick person. Like a patient. Like a victim. Now, I feel more empowered that I can be in control of what happens to my body. But it will mean major life style changes, and I won't accomplish them on my own. Old habits die hard.
First and foremost, cancer feeds on sugar. Sugar is to a cancer patient like beer or wine is to an alcoholic. I've read many understandable explanations of this point, but can't find one just now (when I need it!). But, trust me, it is true. And I LOVE sugar. To the point that avoiding it is one of the hardest life style changes I'll have to make. So, if you see me reaching for a dessert or a candy, please help me stick to this goal of giving up sugary foods.
Next, a link between obesity and a high fat diet with breast cancer (recurrence) has been found. Research further suggests that triple negative breast cancer patients who are obese and eat a high fat diet are at even a higher risk of recurrence. Guess what folks -- according to the body mass index (BMI), I am an obese adult. And a high fat diet? With kids living in the house? You betcha. Another life style change....
Normal, healthy cells need oxygen to thrive. Cancer cells, in comparison, hate oxygen. So, once my blood levels are good and healthy again, I'll need to get moving again. We have a treadmill that I used regularly before my cancer recurrence. It'll be hard to get back on the first few days, but I have learned from past experience that your body almost begins to crave exercise. One thing I have learned through my cancer experience is that our bodies are smart. And our bodies want to heal. Once we start to get rid of the junk in our lives (sugar, high fat foods, couch hugging), then our bodies begin to wake up and shout out to us, "Yes! More!"
I also have heard that meditation and stress reduction is important for cancer survivors, but I have more to learn about this.... Something to blog about in the future....
Finally (although it should be firstly), I know that I can accomplish none of this on my own strength. As I consider "life style changes," I need to get back in the habit of a daily quiet time and Bible reading. I did this pretty faithfully over the summer, and was so blessed by it. The week that I met with Dr. Miller (who gave me such a grim prognosis), Psalm 112:7 was stuck in my mind... It reads: He will have no fear of bad news; his heart is steadfast, trusting the Lord. I believe that God "gave" me that verse for that moment in my life -- He knew the news that Dr. Miller would have for me. But he wanted to remind me that my future is secure in Him, not in the prognosis of a doctor or a statistic. God has the right lifestyle plan for me. I don't believe that I can find it apart from Him.
So... "No more chemo." To me, that means closure for my treatment and freedom to take charge of my health. It does not mean that I am free of cancer. "Good people" die early just as much as "bad people" live long lives. There is no guarantee of tomorrow. Just a chance (a choice) to make the best of today. Choose wisely, my friend.
The normal routine for a chemo visit is to have a blood draw, followed by a quick chat with the oncologist, and then off to what I affectionately call "the chair" for chemo drugs. It is a predictable routine. But yesterday, I was called back for a second blood draw -- it seemed that all of my blood levels were low, and they wanted to do a recheck before I saw the doctor.
The second draw was consistent with the first -- my blood is once again in crash mode: hemoglobin, red blood cells, white blood cells, and platelets were all below acceptable levels. Even for an oncologist! This is what happened in October when I was hospitalized, but to a much less urgent degree. It confirms that carboplatin is most certainly what caused my problems then, and that it is not a good chemotherapy for me. (And that is too bad, because it is an effective and widely used chemotherapy).
The good news is that we are aware of my blood counts, and can monitor them before they become critical. Today, I am to get another complete blood count (CBC). If my numbers are on the rise, then the doctor will let me be and will have me checked again on Friday. The thinking in this case is that my body is building itself back up, and with time will recover on its own. If the blood count numbers are going down, then I'm definitely looking at a platelet infusion. Hopefully not a hospitalization again, but it is possible. I'm not sure if transfusions can be given on an out-patient basis?
Paul put the situation to words very accurately when he said it felt "unfinished" to just quit the chemotherapy altogether. My oncologist had originally wanted 4 doses of carboplatin for me, and we haven't even had 2 complete doses. My oncologist said that he views this as my body saying that it has had too much, and it is time to stop. He reiterated that I've been on chemo since June, and that I'm just not strong enough to continue.
It is important to remember that I've been on chemo all summer to fight the possibility of a cancer in my body. It would be much worse news to stop chemotherapy if I had a definitive tumor that we were fighting. I don't even think my oncologist would stop if cancer existed elsewhere in my body. But in my situation, he has an option -- one is to literally tear down my body with the chemo to fight something that might be there. The other is to respect my body's signals and acquiesce to "Enough is enough." He has chosen the latter. We have to find peace with that decision.
And to be honest, I am at peace. I am relieved to be off this merry-go-round of drugs, fatigue and worry. Being on chemotherapy makes me feel like a sick person. Like a patient. Like a victim. Now, I feel more empowered that I can be in control of what happens to my body. But it will mean major life style changes, and I won't accomplish them on my own. Old habits die hard.
First and foremost, cancer feeds on sugar. Sugar is to a cancer patient like beer or wine is to an alcoholic. I've read many understandable explanations of this point, but can't find one just now (when I need it!). But, trust me, it is true. And I LOVE sugar. To the point that avoiding it is one of the hardest life style changes I'll have to make. So, if you see me reaching for a dessert or a candy, please help me stick to this goal of giving up sugary foods.
Next, a link between obesity and a high fat diet with breast cancer (recurrence) has been found. Research further suggests that triple negative breast cancer patients who are obese and eat a high fat diet are at even a higher risk of recurrence. Guess what folks -- according to the body mass index (BMI), I am an obese adult. And a high fat diet? With kids living in the house? You betcha. Another life style change....
Normal, healthy cells need oxygen to thrive. Cancer cells, in comparison, hate oxygen. So, once my blood levels are good and healthy again, I'll need to get moving again. We have a treadmill that I used regularly before my cancer recurrence. It'll be hard to get back on the first few days, but I have learned from past experience that your body almost begins to crave exercise. One thing I have learned through my cancer experience is that our bodies are smart. And our bodies want to heal. Once we start to get rid of the junk in our lives (sugar, high fat foods, couch hugging), then our bodies begin to wake up and shout out to us, "Yes! More!"
I also have heard that meditation and stress reduction is important for cancer survivors, but I have more to learn about this.... Something to blog about in the future....
Finally (although it should be firstly), I know that I can accomplish none of this on my own strength. As I consider "life style changes," I need to get back in the habit of a daily quiet time and Bible reading. I did this pretty faithfully over the summer, and was so blessed by it. The week that I met with Dr. Miller (who gave me such a grim prognosis), Psalm 112:7 was stuck in my mind... It reads: He will have no fear of bad news; his heart is steadfast, trusting the Lord. I believe that God "gave" me that verse for that moment in my life -- He knew the news that Dr. Miller would have for me. But he wanted to remind me that my future is secure in Him, not in the prognosis of a doctor or a statistic. God has the right lifestyle plan for me. I don't believe that I can find it apart from Him.
So... "No more chemo." To me, that means closure for my treatment and freedom to take charge of my health. It does not mean that I am free of cancer. "Good people" die early just as much as "bad people" live long lives. There is no guarantee of tomorrow. Just a chance (a choice) to make the best of today. Choose wisely, my friend.
Monday, December 1, 2008
We're Headed Down State....
Paul has been out snow blowing, and he doesn't think the drive down-state for my chemotherapy will be unreasonable. We talked about trying to get my chemo done here in Midland, but with my health history, he prefers to work directly with my own doctor. I do, too.
Liam is going to go with us (he can go to Paul's parents house), and Shane and Tyler are staying home. They're just as happy to do that anyway.
Please pray for safe travel to and from Royal Oak. Paul is a good driver, and doesn't take unreasonable risks. I'm "good" with his decision. The hardest part of the trip will be putting myself together in the next 15 minutes -- I slept in thinking we surely would not be heading down state today! (smile)
Liam is going to go with us (he can go to Paul's parents house), and Shane and Tyler are staying home. They're just as happy to do that anyway.
Please pray for safe travel to and from Royal Oak. Paul is a good driver, and doesn't take unreasonable risks. I'm "good" with his decision. The hardest part of the trip will be putting myself together in the next 15 minutes -- I slept in thinking we surely would not be heading down state today! (smile)
Friday, November 21, 2008
Had a Good Week
Well, it is Friday and I'm still standing!
I had a very good week. The library had me scheduled to work each day, and I was worried that I'd have a hard time making it through the week. I'll admit -- Thursday evening I sat down at home, and essentially didn't get up again until bedtime -- I was very tired... But, I had a good night's rest, and worked today (everyday) without any problem.
Tomorrow there is no work and minimal running with the kids. A day I'm looking forward to.
Shane got his driver's license on Wednesday... We still need to add him to our insurance. That is the only stall tactic we have left! :-)
Liam has a hockey game tonight. Right now Shane is having dinner with the hockey team, and Tyler is at swim practice.
Life is beginning to return to a comfortable rhythm -- where the activities of our family are taking precedence over mom's treatment. That is the desire of any cancer patient.
My next treatment will be Monday, December 1. My final treatment will be on December 22. For everyone who gets stressed out to hear that there are only 33 days until Christmas.... that is MUSIC TO MY EARS -- only 30 days until my final chemotherapy! I personally celebrate every time I hear a countdown!
Merry Christmas....
Saturday, November 15, 2008
From One Busy Week to Another....
As I write this, I am fighting a bad cold. On Wednesday, I had a killer sore throat, and called in sick to work at the library. Paul asked me to go to the doctor, and she confirmed that I do not have strep (she took a swab) and that it is just drainage from a cold. The sore throat is gone, but now I have the cold in my head -- the kind that makes you feel really wiped out and tired, if you know the feeling. Add to that chemo on Monday, and it is a nice mix. Not... I'm not a football fan, but today, sitting and watching the games in front of a nice fire sounds like a great idea...
Shane passed the final part of his driver's training tests today -- now he can go and get his license. I don't think I have seen him smile as big as he did today in a long time! He was very relieved to have passed it on the first try. He needn't have been too worried -- he is a good driver. He is just young... I had initially wanted Paul to go on the driver's test with him, but I'm glad that I got to go -- it is a milestone in his life that we got to share.
As I deal with the "what-ifs" of my cancer, it is important to me that the boys learn to stand on their own two feet. Today was a very positive experience for Shane -- that he can set his mind to something and accomplish it. He, especially, needs that kind of reinforcement. I will not forget the smile on his face for a very long time!
This coming week is a busy one, and I'm already worried about how to manage it. I work every day, and have activities/responsibilities each day besides work. Plus, I have this cold. If I let myself worry today about mid-next, it becomes overwhelming. So, I'm trying to take in stride, and take each day at a time. I've been reminding myself over and over about the verse: Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34
Shane passed the final part of his driver's training tests today -- now he can go and get his license. I don't think I have seen him smile as big as he did today in a long time! He was very relieved to have passed it on the first try. He needn't have been too worried -- he is a good driver. He is just young... I had initially wanted Paul to go on the driver's test with him, but I'm glad that I got to go -- it is a milestone in his life that we got to share.
As I deal with the "what-ifs" of my cancer, it is important to me that the boys learn to stand on their own two feet. Today was a very positive experience for Shane -- that he can set his mind to something and accomplish it. He, especially, needs that kind of reinforcement. I will not forget the smile on his face for a very long time!
This coming week is a busy one, and I'm already worried about how to manage it. I work every day, and have activities/responsibilities each day besides work. Plus, I have this cold. If I let myself worry today about mid-next, it becomes overwhelming. So, I'm trying to take in stride, and take each day at a time. I've been reminding myself over and over about the verse: Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34
Tuesday, November 11, 2008
For My Friend, Kim R.
I had my chemo yesterday (Carboplatin). He gave me a reduced-dose, and said I should get a blood count mid-week, next week. If that looks good, then we can assume that my health problems last month were not due to the chemotherapy. Otherwise, we have to rethink the current chemo plan. Time will tell.
Yesterday I was reading Lynn Eib's When God and Cancer Meet. I cheated and went to the last chapter, where she describes her point of view about living now as a cancer survior. Her comments about chemo therapy appointments hit me "right where I was" in the moment. And today, I read a blog of sister triple-negtive BC patient (Kim) who is feeling the same way. So, if you're reading this Kim, I've included Ms. Eib's comments here -- I hope they are helpful to you as they were to me:
"I believe getting through treatments is a lot like athletic training. I started jogging the summer of 1998.... I was 44 at the time, and had never jogged in my adult life... I am not a morning person, but I got up at 6:30 every other day and ran two miles.... I don't really like running; the only part that feels good is when I stop... All along the way I have to talk myself into not quitting. See that telephone pole up there? You can make it, I say. You've done this before, you can do it again. Remember you get tomorrow off; you don't have to do this again right away.
It's the same way I talked myself into going in for a chemo treatment every week for six months: You've done this before; you can do it again.... Remember, afterward you have six days off... Forget about all the times still to come... Don't look at the big hill... Just focus on what you're doing right now.
As long as I kept my mind in the present, focused on that goal, I had peace." pp 175-175, When God and Cancer Meet, by Lynn Eib.
So Kim, if you're reading this -- hang in there until January 27! You will get through this, and I will get through mine. We're not super women. We're not stronger than anyone else. We've just been challenged with cancer, so we've had to learn how to be strong. How to persevere. With God's help, we both will get through this and be better, stronger women for it!
Yesterday I was reading Lynn Eib's When God and Cancer Meet. I cheated and went to the last chapter, where she describes her point of view about living now as a cancer survior. Her comments about chemo therapy appointments hit me "right where I was" in the moment. And today, I read a blog of sister triple-negtive BC patient (Kim) who is feeling the same way. So, if you're reading this Kim, I've included Ms. Eib's comments here -- I hope they are helpful to you as they were to me:
"I believe getting through treatments is a lot like athletic training. I started jogging the summer of 1998.... I was 44 at the time, and had never jogged in my adult life... I am not a morning person, but I got up at 6:30 every other day and ran two miles.... I don't really like running; the only part that feels good is when I stop... All along the way I have to talk myself into not quitting. See that telephone pole up there? You can make it, I say. You've done this before, you can do it again. Remember you get tomorrow off; you don't have to do this again right away.
It's the same way I talked myself into going in for a chemo treatment every week for six months: You've done this before; you can do it again.... Remember, afterward you have six days off... Forget about all the times still to come... Don't look at the big hill... Just focus on what you're doing right now.
As long as I kept my mind in the present, focused on that goal, I had peace." pp 175-175, When God and Cancer Meet, by Lynn Eib.
So Kim, if you're reading this -- hang in there until January 27! You will get through this, and I will get through mine. We're not super women. We're not stronger than anyone else. We've just been challenged with cancer, so we've had to learn how to be strong. How to persevere. With God's help, we both will get through this and be better, stronger women for it!
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. James 1:2-3
Thursday, November 6, 2008
Back 2 Work
I went back to work at the library yesterday, Wednesday Nov. 5.
I was nervous about getting too tired, but so far it has been fine. Instead of tiring me out, it has almost energized me.
The last couple of days have been slow (not many people in the library), and that is good because I have cobwebs in my brain! People come up and ask a variety of questions, and I have to remind myself how or where to find the answers. This is not like riding a bike -- it takes a while to relearn everything again!
But everyone has been very supportive and patient. I'm getting back into the swing of things, and am glad to be back.
This week I have worked 10:00 a.m. to 2:00 p.m. It has worked out wonderfully because I leave work and swing by Shane and Tyler's school to pick them up at 2:30 p.m. Tyler has swim (Dolphins) at Northwood University. We do a loop through the school, and then take Business US-10 to drop Shane off at the hockey arena. He is the team manager for Dow's hockey team. The downside of being a goalie -- a team only needs so many...
Life goes on, but everything still cycles around cancer treatment... My next appointment is Monday, November 10, and I should get a chemotherapy then. I compare a chemotherapy appointment with scheduling the flu -- you know you're going to feel badly for a few days, so you work beforehand to get as much done as possible.
These next few months -- chemotherapy with Thanksgiving and Christmas mixed in -- are going to pass by so quickly. Again, I worry about having the energy to keep up. This year is the first year we didn't do pumpkins for Halloween -- I imagine that some other traditions will go by the wayside with the holidays, as well. Everything is focused on getting through treatment with only the really important holiday traditions taking center stage. That is just the way it will have to be this year.
My hair is starting to grow back, but not enough that I can go without a hat or a scarf. This new chemo is not supposed to make my hair fall out, but it will make it thin.
Everyone has an opinion about the election results. My only observation is that I hope and pray to be around (and well) to vote in then next one. It is not something that I take for granted.
I was nervous about getting too tired, but so far it has been fine. Instead of tiring me out, it has almost energized me.
The last couple of days have been slow (not many people in the library), and that is good because I have cobwebs in my brain! People come up and ask a variety of questions, and I have to remind myself how or where to find the answers. This is not like riding a bike -- it takes a while to relearn everything again!
But everyone has been very supportive and patient. I'm getting back into the swing of things, and am glad to be back.
This week I have worked 10:00 a.m. to 2:00 p.m. It has worked out wonderfully because I leave work and swing by Shane and Tyler's school to pick them up at 2:30 p.m. Tyler has swim (Dolphins) at Northwood University. We do a loop through the school, and then take Business US-10 to drop Shane off at the hockey arena. He is the team manager for Dow's hockey team. The downside of being a goalie -- a team only needs so many...
Life goes on, but everything still cycles around cancer treatment... My next appointment is Monday, November 10, and I should get a chemotherapy then. I compare a chemotherapy appointment with scheduling the flu -- you know you're going to feel badly for a few days, so you work beforehand to get as much done as possible.
These next few months -- chemotherapy with Thanksgiving and Christmas mixed in -- are going to pass by so quickly. Again, I worry about having the energy to keep up. This year is the first year we didn't do pumpkins for Halloween -- I imagine that some other traditions will go by the wayside with the holidays, as well. Everything is focused on getting through treatment with only the really important holiday traditions taking center stage. That is just the way it will have to be this year.
My hair is starting to grow back, but not enough that I can go without a hat or a scarf. This new chemo is not supposed to make my hair fall out, but it will make it thin.
Everyone has an opinion about the election results. My only observation is that I hope and pray to be around (and well) to vote in then next one. It is not something that I take for granted.
Friday, October 31, 2008
A Halloween Treat?
Today I had my mammogram. I'm not a doctor, but I've seen an oodles of mammograms in the last two years -- this one looked beautiful! I'll not officially celebrate until I read the radiologist's report, but I'm pretty comfortable that the report will come back normal. Praise God!
One afterthought -- as I was waiting for the digital image of my mammogram to come up on the computer today, I wondered for a split second how I would react if I saw something that didn't look healthy/normal? I would have fallen apart right then and there, I'm sure. Lesson learned ===> the next time I go in for a mammogram, I'll not ask to see the image. I'm thankful for the (unofficial) results of today, but I would not have been prepared to handle anything but good news in that moment. Please don't follow my reckless example, ladies! (But do get your mammograms!!)
Have you noticed that the background color of my blog has changed? I had it pink in October for Breast Cancer Awareness Month (pink is not my color; I'm glad the month has come and gone!). Now, for today, the background color is orange for Halloween.
I've been thinking about Halloween, and some regrets/wishes that I have:
Happy Halloween.... hope it is all full of treats, and no tricks!
One afterthought -- as I was waiting for the digital image of my mammogram to come up on the computer today, I wondered for a split second how I would react if I saw something that didn't look healthy/normal? I would have fallen apart right then and there, I'm sure. Lesson learned ===> the next time I go in for a mammogram, I'll not ask to see the image. I'm thankful for the (unofficial) results of today, but I would not have been prepared to handle anything but good news in that moment. Please don't follow my reckless example, ladies! (But do get your mammograms!!)
Have you noticed that the background color of my blog has changed? I had it pink in October for Breast Cancer Awareness Month (pink is not my color; I'm glad the month has come and gone!). Now, for today, the background color is orange for Halloween.
I've been thinking about Halloween, and some regrets/wishes that I have:
- I regret that I took Halloween so seriously (anti-Christian and all that) and didn't have more fun with the holiday. Don't get me wrong -- my Christian belief is first and foremost in my life -- but I believe it is possible to have fun with Halloween and not get caught up in the darkness of it all.
- I wish, especially when the kids were younger, that I had taken more time to create costumes, paint faces and enjoy the holiday. Halloween always felt like something that "had to be done," and not something that I enjoyed. My loss, I can accept that. But, have I taught my kids that mindset?
- I wish we were the family who stopped and smelled the roses more often. Halloween would be one great time to do that. "Rose smelling" is something I want to work on more for our family. It will have to wait until my treatment is finished (and my energy is back), but I've learned in the past couple of years that it is vitally important.
Happy Halloween.... hope it is all full of treats, and no tricks!
Tuesday, October 28, 2008
Doctors Know Best
Yesterday we had follow-up appointments with my plastic surgeon and my oncologist.
The plastic surgeon is pleased with how I am healing. He said (without chemotherapy) he thought everything would be healed within a couple of weeks. He was speaking most specifically about the wound that has not healed since my surgery in May (my surgery incision from two weeks ago is fine).
The plastic surgeon said that trace amounts (he used the word "rare") of the pseudomonas bacteria were found in the fluid from my surgery, two weeks ago. It apparently took several days for the bacteria to grow in the lab, but finding them confirms that we did the right thing by having the spacer removed.
Next we met with my oncologist. He has decided to put off chemotherapy for a couple of weeks, to give me a chance to really heal. Part of me is really disappointed -- I wanted to get back on track with my treatment. Another part of me is also glad -- this is a chance to get some "rest" and to enjoy feeling good for another couple of weeks.
I have permission to be out-and-about more (hockey games, etc.), and I can return to work in November, as was planned. All good news. If everything stays on schedule, I should be finished with chemotherapy (and hence, all of my treatment?) by December 22. A Merry Christmas, indeed!
We also got our dog, Oreo, back from Pauls' parents yesterday. A couple of weeks with his parents have done wonders for her -- she is so much more calm now!? I didn't grow up with dogs in the house, so I am not sure how they "trained" her to behave, but she is like a completely different dog. She used to be a real nuisance to get into everything for attention. I sure hope that her new calmness is here to stay!?
The plastic surgeon is pleased with how I am healing. He said (without chemotherapy) he thought everything would be healed within a couple of weeks. He was speaking most specifically about the wound that has not healed since my surgery in May (my surgery incision from two weeks ago is fine).
The plastic surgeon said that trace amounts (he used the word "rare") of the pseudomonas bacteria were found in the fluid from my surgery, two weeks ago. It apparently took several days for the bacteria to grow in the lab, but finding them confirms that we did the right thing by having the spacer removed.
Next we met with my oncologist. He has decided to put off chemotherapy for a couple of weeks, to give me a chance to really heal. Part of me is really disappointed -- I wanted to get back on track with my treatment. Another part of me is also glad -- this is a chance to get some "rest" and to enjoy feeling good for another couple of weeks.
I have permission to be out-and-about more (hockey games, etc.), and I can return to work in November, as was planned. All good news. If everything stays on schedule, I should be finished with chemotherapy (and hence, all of my treatment?) by December 22. A Merry Christmas, indeed!
We also got our dog, Oreo, back from Pauls' parents yesterday. A couple of weeks with his parents have done wonders for her -- she is so much more calm now!? I didn't grow up with dogs in the house, so I am not sure how they "trained" her to behave, but she is like a completely different dog. She used to be a real nuisance to get into everything for attention. I sure hope that her new calmness is here to stay!?
Wednesday, October 22, 2008
A Little Better Each Day
The visiting nurse came yesterday (Tuesday), and her first comment to me was that I was looking better -- specifically that I had more color in my cheeks than when she visited last Thursday. I don't know if she was just trying to be nice (encourage me?), but I can tell that I am stronger each day.
My mom stayed on to help me for an extra week, and she will probably be here through Friday. She has been a great help -- keeping up with shopping, meals and laundry! And I've been so blessed with meals, prayers, cards, phone calls and flowers -- all reminders that many people care for me and are wishing for my full recovery. Thank you, thank you, thank you!
I am taking antibiotics through Tuesday, October 28. One antibiotic is a pill, the other is an IV that Paul gives me with each morning and evening. My blood was checked last Thursday, and will be checked again this Thursday. We see my oncologist on Monday (lots of questions for him!), but he has said that I can begin chemotherapy Monday afternoon. That is a good indication that he is satisfied that I am progressing/improving.
I have stayed close to home all this week -- only going out to shuttle kids from one location to another. No grocery stores, library, hockey arena, church or anything public. I am hopeful that that restriction will be lifted on Monday, as well.
Having gone through breast cancer twice, I can honestly say that these two experiences have been "night and day." I got through my first treatment with really no problems at all. This second time has more than made up for the ease of my first treatment. It has challenged me physically, emotionally and spiritually. My reservoir feels empty. The doctors can help improve the physical issues. The emotional and spiritual ones rest on my shoulder.
I have not been able to find a "purpose" of having to go through BC a second time, and especially having to endure so many set backs. To be honest, I have given up this search for the time being. My attitude now is just to get through the treatment and to pace myself, physically. God and I will have to work through some of the details later...
My mom stayed on to help me for an extra week, and she will probably be here through Friday. She has been a great help -- keeping up with shopping, meals and laundry! And I've been so blessed with meals, prayers, cards, phone calls and flowers -- all reminders that many people care for me and are wishing for my full recovery. Thank you, thank you, thank you!
I am taking antibiotics through Tuesday, October 28. One antibiotic is a pill, the other is an IV that Paul gives me with each morning and evening. My blood was checked last Thursday, and will be checked again this Thursday. We see my oncologist on Monday (lots of questions for him!), but he has said that I can begin chemotherapy Monday afternoon. That is a good indication that he is satisfied that I am progressing/improving.
I have stayed close to home all this week -- only going out to shuttle kids from one location to another. No grocery stores, library, hockey arena, church or anything public. I am hopeful that that restriction will be lifted on Monday, as well.
Having gone through breast cancer twice, I can honestly say that these two experiences have been "night and day." I got through my first treatment with really no problems at all. This second time has more than made up for the ease of my first treatment. It has challenged me physically, emotionally and spiritually. My reservoir feels empty. The doctors can help improve the physical issues. The emotional and spiritual ones rest on my shoulder.
I have not been able to find a "purpose" of having to go through BC a second time, and especially having to endure so many set backs. To be honest, I have given up this search for the time being. My attitude now is just to get through the treatment and to pace myself, physically. God and I will have to work through some of the details later...
Thursday, October 16, 2008
No News is not always Good News...
It has been a hard couple of weeks, so I will try to bring everyone up to date...
Wednesday, October 1: My oncologist suspected an infection in my implant/spacer, and told me to go to the Midland ER to start IV antibiotics. At the ER, they cultured my blood for infection and took a culture from the wound that still has not healed from my May 2008 surgery. They did blood work, which showed a slightly lowered hemoglobin (7.7 range), but my blood work was good otherwise.
Thur-Friday: We learned that my blood cultures came back negative (a good thing!), but that they had found pseudomonas aeruginosa bacteria in my wound. My meds were changed to ones which would specifically attack this bacteria, and we were set up with home-care infusion so that Paul could give me the IV antibiotics in our home.
Saturday-Sunday: I felt increasingly worse over the weekend -- sleeping all the time, barely able to get up our stairs at home. Just no energy at all.
Monday, Oct. 6: We kept an appointment with my plastic surgeon at Troy, MI. He was ready to send me home after an exam, but I felt so bad that I said I wanted to go the hospital. I was admitted to Beaumont Troy, where he does most of his surgeries. It took all day, but by evening they ran blood work and found my problem -- hemoglobin (i.e. blood volume) was 1/3 of a healthy person and my platelets (for clotting blood) were about 13-14; a healthy range is 200+. That night they gave me blood and platelet transfusions. My hemoglobin was improved but my platelets were unchanged. We decided that I would transfer to Beaumont Royal Oak so my oncologist could treat me at "his" hospital.
Tuesday, Oct 7: I transferred to Beaumont Royal Oak. They did a slew of blood tests on me. All of which (over time) came back negative. Possibly the new chemotherapy sent my platelets dropping, but my oncologist said he has never seen a response like mine. I told Paul that new chemotherapy combined with an infection and antibiotics made a "perfect storm." We might never have a definitive answer as to why I had such a life threatening reaction?
Good news.... on Wednesday, Oct 8 I was given one unit of platelets "just to see" what would happen. My platelet levels inched upward, and each day showed a little bit of improvement. By Friday, October 10, they were able to aspirate (take some fluid) from around the implant/expander to culture it.
Since I had been on antibiotics for more than a week, we were warned ahead of time that the fluid might show no sign of infection; it would be "sterile" fluid. The doctors were right about that, so we had a judgement call to make -- leave the spacer/implant and hope that the infection would go away completely on its own, or take out the spacer/implant and drastically increase my chances of beating the infection. Needless to say, we took the former option.
I was in the hospital over the weekend, receiving the IV antibiotics, watching my blood and waiting for my blood numbers to improve. The surgery was performed on Tuesday, October 14, and I came home later that evening.
For now, I am to be on the antibiotics for two weeks, until September 28. I feel more tired than usual, but my body has lots of healing to do. I can rest or eat and then feel immediately better. It is a manageable "tiredness." My blood is checked each week, and soon I should find out when I can receive my next chemotherapy. I missed my regularly scheduled dose this past Monday, and still have three doses left.
Paul's parents stayed with our boys all last week. Paul's sister was at the hospital almost constantly, and she was a great source of help and comfort to us both. But I think especially to Paul -- I didn't learn how worried he was until our drive home Tuesday evening....
My parents are here now, and they will stay for as long as we need them.
Wednesday, October 1: My oncologist suspected an infection in my implant/spacer, and told me to go to the Midland ER to start IV antibiotics. At the ER, they cultured my blood for infection and took a culture from the wound that still has not healed from my May 2008 surgery. They did blood work, which showed a slightly lowered hemoglobin (7.7 range), but my blood work was good otherwise.
Thur-Friday: We learned that my blood cultures came back negative (a good thing!), but that they had found pseudomonas aeruginosa bacteria in my wound. My meds were changed to ones which would specifically attack this bacteria, and we were set up with home-care infusion so that Paul could give me the IV antibiotics in our home.
Saturday-Sunday: I felt increasingly worse over the weekend -- sleeping all the time, barely able to get up our stairs at home. Just no energy at all.
Monday, Oct. 6: We kept an appointment with my plastic surgeon at Troy, MI. He was ready to send me home after an exam, but I felt so bad that I said I wanted to go the hospital. I was admitted to Beaumont Troy, where he does most of his surgeries. It took all day, but by evening they ran blood work and found my problem -- hemoglobin (i.e. blood volume) was 1/3 of a healthy person and my platelets (for clotting blood) were about 13-14; a healthy range is 200+. That night they gave me blood and platelet transfusions. My hemoglobin was improved but my platelets were unchanged. We decided that I would transfer to Beaumont Royal Oak so my oncologist could treat me at "his" hospital.
Tuesday, Oct 7: I transferred to Beaumont Royal Oak. They did a slew of blood tests on me. All of which (over time) came back negative. Possibly the new chemotherapy sent my platelets dropping, but my oncologist said he has never seen a response like mine. I told Paul that new chemotherapy combined with an infection and antibiotics made a "perfect storm." We might never have a definitive answer as to why I had such a life threatening reaction?
Good news.... on Wednesday, Oct 8 I was given one unit of platelets "just to see" what would happen. My platelet levels inched upward, and each day showed a little bit of improvement. By Friday, October 10, they were able to aspirate (take some fluid) from around the implant/expander to culture it.
Since I had been on antibiotics for more than a week, we were warned ahead of time that the fluid might show no sign of infection; it would be "sterile" fluid. The doctors were right about that, so we had a judgement call to make -- leave the spacer/implant and hope that the infection would go away completely on its own, or take out the spacer/implant and drastically increase my chances of beating the infection. Needless to say, we took the former option.
I was in the hospital over the weekend, receiving the IV antibiotics, watching my blood and waiting for my blood numbers to improve. The surgery was performed on Tuesday, October 14, and I came home later that evening.
For now, I am to be on the antibiotics for two weeks, until September 28. I feel more tired than usual, but my body has lots of healing to do. I can rest or eat and then feel immediately better. It is a manageable "tiredness." My blood is checked each week, and soon I should find out when I can receive my next chemotherapy. I missed my regularly scheduled dose this past Monday, and still have three doses left.
Paul's parents stayed with our boys all last week. Paul's sister was at the hospital almost constantly, and she was a great source of help and comfort to us both. But I think especially to Paul -- I didn't learn how worried he was until our drive home Tuesday evening....
My parents are here now, and they will stay for as long as we need them.
Saturday, October 4, 2008
Two Steps Forward. One Step Back?
Two steps forward, one step back.... that is not a completely accurate description of my situation, but it is kind of on the mark. I guess my point is that I'm feeling much, much better (the 2 steps forward), but things still are not as they should be and I might still have to have a surgery (the one step back).
Since Wednesday, it is fair to say that this has been one of the busiest, most emotional weeks I have had in a long time. And it is only Saturday.
Without going into details, my family practice doctor did not understand the urgency of me having the IV antibiotics on a daily basis. I did get them each day, but I had to be very "persistent." I lost my spot on his office's "favorite patient" list.
Thursday was the hardest day. As the afternoon dragged out, it became clear to me that IV meds were not going to happen in Midland. My next option was to drive to Beaumont for the evening and get the meds down there. In situations like this, I make an effort to look for God. What is He doing? What do I need to be doing?
Part of that meant forgiving the doctor's office staff, and particularly one individual who was very insensitive and who played "gate keeper" between me and the doctor. I have decided to talk to the doctor on Monday about her comments toward me. That does not mean I have not forgiven her. Forgiveness is a choice we make. It is a heart decision. But the doctor needs to know how I was treated and by whom. I can talk to him in a non-vindictive way about his staff. I think that is being forgiving but also responsible.
The second "God finding" was the knowledge that God knew I needed the antibiotics and He knew the best way for me to get them. Even if that meant driving to Beaumont for the evening. It was a matter of turning the situation over to Him, and trusting Him for the outcome. Not easy to do when you are in a panic mode, but everything did work just fine. In fact, my Thursday meds were delivered in a new unit of the Midland hospital (Observation Unit) which was quiet and relaxing (only 2 patients), and I got to follow up with an old nursing friend, Joni. As it turned out, it was just what I needed that evening! Paul came by for part of the time (in between Liam's open house at school and Shane's hockey game). We both literally slept for about 30 minutes, the ward was so quiet and relaxing....
So, long story short.... the ER doctors "cultured" my blood and the area of the breast that has not been healing Wednesday night when we were there. We now know that my blood came back negative for bacteria (a very good thing!) and we know (to some extent) the bacteria that is causing my problem. They are doing further "sensitivity tests" to get more information about the bacteria.
I am now on one oral antibiotic and one IV antibiotic that is given two times per day. The IV antibiotic (and related equipment) have been delivered to our home, and the visiting nurse came this morning to train Paul. She'll come back tonight and perhaps tomorrow to train him further. As she was training Paul, I couldn't help wondering why he and I are having to go through this, and how God might someday use the experience? In the meantime, I've decided that at-home chemo is the only way to go!
Now the real issue is whether we can "save" my implant or whether I will need to have surgery to remove it (i.e. the infection cannot be defeated). I still have pain and swelling, but significantly less than when this all first started. That indicates that the antibiotics are doing some good, but we are not sure they will be able to do enough.
I don't really pray anymore for God to work situations out in a particular way; I've been disappointed too many times since the cancer became a reality. Now, I tend to pray for wisdom and strength in a given situation. I will be vigilant about my meds, hope for the best, but accept the outcome as things progress.
Since Wednesday, it is fair to say that this has been one of the busiest, most emotional weeks I have had in a long time. And it is only Saturday.
Without going into details, my family practice doctor did not understand the urgency of me having the IV antibiotics on a daily basis. I did get them each day, but I had to be very "persistent." I lost my spot on his office's "favorite patient" list.
Thursday was the hardest day. As the afternoon dragged out, it became clear to me that IV meds were not going to happen in Midland. My next option was to drive to Beaumont for the evening and get the meds down there. In situations like this, I make an effort to look for God. What is He doing? What do I need to be doing?
Part of that meant forgiving the doctor's office staff, and particularly one individual who was very insensitive and who played "gate keeper" between me and the doctor. I have decided to talk to the doctor on Monday about her comments toward me. That does not mean I have not forgiven her. Forgiveness is a choice we make. It is a heart decision. But the doctor needs to know how I was treated and by whom. I can talk to him in a non-vindictive way about his staff. I think that is being forgiving but also responsible.
The second "God finding" was the knowledge that God knew I needed the antibiotics and He knew the best way for me to get them. Even if that meant driving to Beaumont for the evening. It was a matter of turning the situation over to Him, and trusting Him for the outcome. Not easy to do when you are in a panic mode, but everything did work just fine. In fact, my Thursday meds were delivered in a new unit of the Midland hospital (Observation Unit) which was quiet and relaxing (only 2 patients), and I got to follow up with an old nursing friend, Joni. As it turned out, it was just what I needed that evening! Paul came by for part of the time (in between Liam's open house at school and Shane's hockey game). We both literally slept for about 30 minutes, the ward was so quiet and relaxing....
So, long story short.... the ER doctors "cultured" my blood and the area of the breast that has not been healing Wednesday night when we were there. We now know that my blood came back negative for bacteria (a very good thing!) and we know (to some extent) the bacteria that is causing my problem. They are doing further "sensitivity tests" to get more information about the bacteria.
I am now on one oral antibiotic and one IV antibiotic that is given two times per day. The IV antibiotic (and related equipment) have been delivered to our home, and the visiting nurse came this morning to train Paul. She'll come back tonight and perhaps tomorrow to train him further. As she was training Paul, I couldn't help wondering why he and I are having to go through this, and how God might someday use the experience? In the meantime, I've decided that at-home chemo is the only way to go!
Now the real issue is whether we can "save" my implant or whether I will need to have surgery to remove it (i.e. the infection cannot be defeated). I still have pain and swelling, but significantly less than when this all first started. That indicates that the antibiotics are doing some good, but we are not sure they will be able to do enough.
I don't really pray anymore for God to work situations out in a particular way; I've been disappointed too many times since the cancer became a reality. Now, I tend to pray for wisdom and strength in a given situation. I will be vigilant about my meds, hope for the best, but accept the outcome as things progress.
Thursday, October 2, 2008
Another curve ball
After reading my most recent post, my sister-in-law telephoned me and made me promise to call my doctors right away. This was last night (Wednesday), and I needed her phone call because I knew I had a real problem but I just didn't want to deal with it... (Ignore it, it might go away, right? Wrong.).
So, I called my plastic surgeon first because the bulk of my problem was related to the spacer/implant he has put in. He was unimpressed with my symptoms, and said to keep taking the oral antibiotics he had prescribed. He also said to keep my oncologist in the loop, so I called him next.
My oncologist was also unimpressed with the fever, but as soon as I mentioned the breast pain/tenderness, his whole demeanor changed. He said I was to go to the ER in Midland asap, have the attending doctor call him, and he would order IV antibiotics. Long story short, Paul and I were at the hospital from about 9:00 p.m. until 1:00 a.m.
This morning I feel better, so I know the emotional upheaval of last night was worth it. Now, I'm looking at 4-5 more days of IV antibiotics, hopefully to be given in our home through the Visiting Nurses. They say they can do this, and I have to believe it will be cheaper and more convenient than a lengthy hospital stay. I still have a few phone calls outstanding; things are still subject to change.
The big question is whether the implant is infected and needs to come out (not a good option!), or if the antibiotics can work their magic and kick any infection that is there. If you're the praying type, please pray for the latter! :-)
A big hug to Karen for her push to call the doctor last night... It was a hard phone call to make because I pretty much could guess the outcome (hospital, IVs, etc), but it was also one that made a big difference in how I'm feeling today. And hopefully, in how effectively this infection will be cured!
I have no doubt that if Karen had not called last night that I would have done nothing last night, and would be home today feeling lousy and trying to "wish away" this problem...
So, I called my plastic surgeon first because the bulk of my problem was related to the spacer/implant he has put in. He was unimpressed with my symptoms, and said to keep taking the oral antibiotics he had prescribed. He also said to keep my oncologist in the loop, so I called him next.
My oncologist was also unimpressed with the fever, but as soon as I mentioned the breast pain/tenderness, his whole demeanor changed. He said I was to go to the ER in Midland asap, have the attending doctor call him, and he would order IV antibiotics. Long story short, Paul and I were at the hospital from about 9:00 p.m. until 1:00 a.m.
This morning I feel better, so I know the emotional upheaval of last night was worth it. Now, I'm looking at 4-5 more days of IV antibiotics, hopefully to be given in our home through the Visiting Nurses. They say they can do this, and I have to believe it will be cheaper and more convenient than a lengthy hospital stay. I still have a few phone calls outstanding; things are still subject to change.
The big question is whether the implant is infected and needs to come out (not a good option!), or if the antibiotics can work their magic and kick any infection that is there. If you're the praying type, please pray for the latter! :-)
A big hug to Karen for her push to call the doctor last night... It was a hard phone call to make because I pretty much could guess the outcome (hospital, IVs, etc), but it was also one that made a big difference in how I'm feeling today. And hopefully, in how effectively this infection will be cured!
I have no doubt that if Karen had not called last night that I would have done nothing last night, and would be home today feeling lousy and trying to "wish away" this problem...
Tuesday, September 30, 2008
Took It For Granted....
Well, life has a way of throwing a curve ball your way now and then, and that is exactly what happened to me this weekend -- I went to bed on Sunday night fully expecting to head up north on Monday morning, but instead I developed a 100.4 degree fever during the night!?
Except to go to the hospital to have blood drawn (my numbers were all good, thank goodness!), I was essentially in bed from Sunday morning until today (Tuesday afternoon). And, I'm not sure why, but my left arm and chest are very sore -- to the point that I cannot lift my arm above my head, and I have to really want to move (i.e. turn over in bed) to put up with the discomfort that that creates.
I am hoping that it is just a complication of the fever, or that I used muscles more than I'm used to doing, or ______ (fill in the blank).
My plastic surgeon has me on "just in case" antibiotics, and I really hope a visit to his office (2 hours from home) is not called for. I'll give it a few days and see how I feel. Some times I think it is getting better. Other times I think it is just wishful thinking...
So for now... I am keeping appointments on a daily basis. I picked the boys up from school (to deliver hockey equipment for Shane and drop Tyler off for swimming), and Paul went and picked them up afterward.
One day at a time for a while. Trying to take nothihg for granted. :)
Except to go to the hospital to have blood drawn (my numbers were all good, thank goodness!), I was essentially in bed from Sunday morning until today (Tuesday afternoon). And, I'm not sure why, but my left arm and chest are very sore -- to the point that I cannot lift my arm above my head, and I have to really want to move (i.e. turn over in bed) to put up with the discomfort that that creates.
I am hoping that it is just a complication of the fever, or that I used muscles more than I'm used to doing, or ______ (fill in the blank).
My plastic surgeon has me on "just in case" antibiotics, and I really hope a visit to his office (2 hours from home) is not called for. I'll give it a few days and see how I feel. Some times I think it is getting better. Other times I think it is just wishful thinking...
So for now... I am keeping appointments on a daily basis. I picked the boys up from school (to deliver hockey equipment for Shane and drop Tyler off for swimming), and Paul went and picked them up afterward.
One day at a time for a while. Trying to take nothihg for granted. :)
Saturday, September 27, 2008
Saturday Evening
It has been almost a week since my first Carboplatin treatment. It was pretty tolerable, except that it made me more tired than usual and my stomach was continuously upset. Not to the point that I could not function, but I did rest/sleep a lot this week. And I found that eating smaller meals and more brothy soups helped my stomach. The effects seem to have worn off now; guess it will be bad for about a week, and then go away.
Dow High has their homecoming dance tonight. Tyler went, Shane did not. Shane went last year. He knows what he is missing (or not).
Monday our kids do not have school, so we are hoping to run up north to our cottage. We want to finish staining the deck, maybe do some indoor painting, and I suspect Paul and the boys will do some fishing. This is a nice time of year -- warm enough to enjoy the days, but not so hot.
Wednesday, September 24, 2008
A Quick Update
Monday (9/22) I had my first Carboplatin chemotherapy. It was quicker than I had expected -- took only about an hour and a half. That is nice, because I was expecting the infusion to last about 3 hours. The only new thing about Carbo is that is very hard on the kidneys. I'm to drink as much water as I possibly can, and avoid caffeine or sodium. I felt pretty good since the infusion, except yesterday I felt feverish and by evening I was completely worn out. Today I am starting to bounce back, but I'm still not 100%.
Kim drove down with me -- it was nice to have her along for company. We used to get together a lot when Liam and Ethan were toddlers, but we have gotten out of that habit. Life has gotten busy, you know? We had lots of talk time on the way down and back, and she is an avid reader so she was content to wait around for me with doctors appointments. Thanks, Kim!
My oncologist was in a talkative mood.... we discussed exercise (yes, I can do that now) and weight loss (no, not yet). I told him about a vaccine trial that I found for triple negative breast cancer. The doctor in charge of that trial is trying to get funding, and said to call back the first of 2009. My doctor said that vaccine trials are the way to go -- vaccines will either be a big hit (good news!) or totally benign. The medical community just will not know until the they test them. He said he'll call this doctor around January to touch base and discuss my eligibility for the vaccine.
I have to have a mammogram in October. That makes me nervous.
The plastic surgeon was pleased with the amount of healing he saw since my last visit. "Packing" the wound instead of dressing it seems to help.
Life around our home is busier... Shane has started league hockey (about 3x per week) and also has practice for high school hockey two nights a week after school. Tyler has started swimming with Dolphins to prepare for the high school swim team. I'm glad for both of them to be involved, but it means I am at the high school 2, sometimes 3, times each day. Neither of the boys say they know anyone to carpool with. Shane has been pushing for his license and a car. This might be the time to start seriously thinking about that?
Kim drove down with me -- it was nice to have her along for company. We used to get together a lot when Liam and Ethan were toddlers, but we have gotten out of that habit. Life has gotten busy, you know? We had lots of talk time on the way down and back, and she is an avid reader so she was content to wait around for me with doctors appointments. Thanks, Kim!
My oncologist was in a talkative mood.... we discussed exercise (yes, I can do that now) and weight loss (no, not yet). I told him about a vaccine trial that I found for triple negative breast cancer. The doctor in charge of that trial is trying to get funding, and said to call back the first of 2009. My doctor said that vaccine trials are the way to go -- vaccines will either be a big hit (good news!) or totally benign. The medical community just will not know until the they test them. He said he'll call this doctor around January to touch base and discuss my eligibility for the vaccine.
I have to have a mammogram in October. That makes me nervous.
The plastic surgeon was pleased with the amount of healing he saw since my last visit. "Packing" the wound instead of dressing it seems to help.
Life around our home is busier... Shane has started league hockey (about 3x per week) and also has practice for high school hockey two nights a week after school. Tyler has started swimming with Dolphins to prepare for the high school swim team. I'm glad for both of them to be involved, but it means I am at the high school 2, sometimes 3, times each day. Neither of the boys say they know anyone to carpool with. Shane has been pushing for his license and a car. This might be the time to start seriously thinking about that?
Saturday, September 20, 2008
Two Years and Counting...
Today is my two year anniversary as a cancer survivor.
Two years might not sound like very long to some, but in the last two years we've brought home our puppy, Oreo.... we took a whirlwind vacation in Orlando... I started working at the library... Paul and Shane went with scouts to Boundary Waters.... Shane and Tyler have been on two mission trips.... Liam has learned to read and the older boys are both high school... and we've started, and almost finished, our cottage up north....
That is a lot of good living in the past two years, despite the trials of battling breast cancer. People comment on the positive attitude I seem to have, even with the cancer. But I look back on the last two years and consider what a shame it would be to waste them on feeling bitter or constantly upset. There are ups and downs of cancer treatment -- some physical and some emotional. There is no way to escape that. But at the same time, I believe that life has more blessings than curses, and that we sometimes have to make an intentional decision to find the good in life.
It has not been easy to deal with my cancer, twice in the past two years even. Just last week I sat in front of Dow High waiting for Shane, and I was quietly jealous of the moms who seemed to be so carefree in comparison to what I have to deal with. The ones who can sign up to volunteer at prom time, without wondering how they'll be feeling then. Etc., etc., etc. Those feelings are real, and I try to balance them. To let myself feel them for them a while, but then to pull myself back and focus -- to make a real effort to listen to what my kids and husband are saying, to focus on the blessings of the day at hand, to be grateful. It is a choice.
Paul deserves credit for keeping the boys' lives so much on track. When I was originally diagnosed, I wanted to pull them out of all of their activities. With both of us healthy and able, it was already hard for us to keep up with all of their activities. Knowing that I had chemo and surgery ahead, I couldn't see any way that we'd keep up at all. But Paul was adamant that their lives should be impacted as little as possible. With his determination and the support of family and friends, we were able to sustain the activities that are most important to each boy. Looking back on that decision, I see it as very wise and beneficial for our boys.
Cancer has helped Paul and I communicate better. Not perfectly, but better. I realize that we (I) have put too much emphasis on making our boys' lives happy/comfortable/memorable, and that our own relationship has often been neglected. That is a lesson that I think most couples learn much later in life, probably as "empty nesters." Paul and I have a strong relationship, but the cancer has caused us to cherish it more, and to begin to nurture it better. That is a good effect of a very bad disease.
Two years and counting... I'm looking forward to two more good years, and to many more after that. This is not a battle that I fight on my own -- I have many family and friends who love and support me. An encouraging and able medical team. And most importantly, I have my faith which sustains me. As the verse says: I can do all things through Christ, who strengthens me.
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness."
Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 2 Corinthians 12:9
Two years might not sound like very long to some, but in the last two years we've brought home our puppy, Oreo.... we took a whirlwind vacation in Orlando... I started working at the library... Paul and Shane went with scouts to Boundary Waters.... Shane and Tyler have been on two mission trips.... Liam has learned to read and the older boys are both high school... and we've started, and almost finished, our cottage up north....
That is a lot of good living in the past two years, despite the trials of battling breast cancer. People comment on the positive attitude I seem to have, even with the cancer. But I look back on the last two years and consider what a shame it would be to waste them on feeling bitter or constantly upset. There are ups and downs of cancer treatment -- some physical and some emotional. There is no way to escape that. But at the same time, I believe that life has more blessings than curses, and that we sometimes have to make an intentional decision to find the good in life.
It has not been easy to deal with my cancer, twice in the past two years even. Just last week I sat in front of Dow High waiting for Shane, and I was quietly jealous of the moms who seemed to be so carefree in comparison to what I have to deal with. The ones who can sign up to volunteer at prom time, without wondering how they'll be feeling then. Etc., etc., etc. Those feelings are real, and I try to balance them. To let myself feel them for them a while, but then to pull myself back and focus -- to make a real effort to listen to what my kids and husband are saying, to focus on the blessings of the day at hand, to be grateful. It is a choice.
Paul deserves credit for keeping the boys' lives so much on track. When I was originally diagnosed, I wanted to pull them out of all of their activities. With both of us healthy and able, it was already hard for us to keep up with all of their activities. Knowing that I had chemo and surgery ahead, I couldn't see any way that we'd keep up at all. But Paul was adamant that their lives should be impacted as little as possible. With his determination and the support of family and friends, we were able to sustain the activities that are most important to each boy. Looking back on that decision, I see it as very wise and beneficial for our boys.
Cancer has helped Paul and I communicate better. Not perfectly, but better. I realize that we (I) have put too much emphasis on making our boys' lives happy/comfortable/memorable, and that our own relationship has often been neglected. That is a lesson that I think most couples learn much later in life, probably as "empty nesters." Paul and I have a strong relationship, but the cancer has caused us to cherish it more, and to begin to nurture it better. That is a good effect of a very bad disease.
Two years and counting... I'm looking forward to two more good years, and to many more after that. This is not a battle that I fight on my own -- I have many family and friends who love and support me. An encouraging and able medical team. And most importantly, I have my faith which sustains me. As the verse says: I can do all things through Christ, who strengthens me.
But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness."
Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 2 Corinthians 12:9
Wednesday, September 17, 2008
Taking a Break....
Whew! The first two weeks of school were a blur --that was Labor Day weekend, the start of school, two of the boys had birthdays, I had two chemos... Those two weeks were literally just one thing after another. The bright side of last week were lots of breakfasts, lunches or dinners with friends -- God has truly blessed me with many people who care and encourage me.
This past week has been much easier. Quieter, with the boys being in school all day. I've gotten some scrapbooking done and some cleaning around the house. A friend introduced me to www.flylady.net. I love this website -- "Kelly's missions" take the guess work out of what am I going to do today??, and her suggestions generally only take 30 minutes or so. Brilliant!
Monday(9/22) is my next chemo... This is with the new drug, carboplatin. My oncologist thinks I will tolerate this well. He has scheduled 4 doses, every weeks. My very last chemo will be the Monday before Thanksgiving -- something to truly to be thankful for!! Paul cannot go with me, so my good friend Kim has taken the day off work to go with me. We'll have at least 4 hours of talk time on the drive there and back....
Shane and Liam have started hockey.... Shane had a game last night, and they won 10-1. That is exciting for him, but his games are over so late -- it was almost 11:00 p.m. by the time he and Paul got home last night. The school bus leaves our house around 7:00 a.m., so he got very little sleep last night...
This past week has been much easier. Quieter, with the boys being in school all day. I've gotten some scrapbooking done and some cleaning around the house. A friend introduced me to www.flylady.net. I love this website -- "Kelly's missions" take the guess work out of what am I going to do today??, and her suggestions generally only take 30 minutes or so. Brilliant!
Monday(9/22) is my next chemo... This is with the new drug, carboplatin. My oncologist thinks I will tolerate this well. He has scheduled 4 doses, every weeks. My very last chemo will be the Monday before Thanksgiving -- something to truly to be thankful for!! Paul cannot go with me, so my good friend Kim has taken the day off work to go with me. We'll have at least 4 hours of talk time on the drive there and back....
Shane and Liam have started hockey.... Shane had a game last night, and they won 10-1. That is exciting for him, but his games are over so late -- it was almost 11:00 p.m. by the time he and Paul got home last night. The school bus leaves our house around 7:00 a.m., so he got very little sleep last night...
Tuesday, September 9, 2008
Read this Post... Learn a New Word (I Did!)
Yesterday (Monday) I had my third and final "short" chemo. I affectionately call this chemo my "wired but tired" chemo, because the meds give me a "caffeine high" that make it hard to sleep even though my physical body is tired. I did sleep some tonight, but woke up, and now it is almost 4:00 a.m. I went to sleep reading a new book that I purchased, but I'll write more about that in a moment. First, the stats:
My chemo was fine. Like clockwork. I will have the Neulasta shot tomorrow (Tuesday). My hemoglobin (iron) is steady at 9.7. My oncologist is happy with this, so I am happy with this. I will continue with supplements and try to be good with my diet. The new chemo (carboplatin) starts September 22. I'll have that every three weeks for 4 times. Sounds like it will be easy to tolerate. Carbo causes hair to "thin," not to fall out. The nurse said I might start to get some hair growth back, but I think she was only trying to be nice. I'm not counting on it for a while.
I also met with my plastic surgeon -- I have a quarter size wound that will not heal (a complication of damaged, radiated skin and poor healing from current chemo). My doctor is satisfied that I have no (and probably will not develop) any infection, but we probably will not do anything more related to reconstruction surgery until after my chemotherapy is finished. Bummer -- this is no fun to doctor every day. But, you gotta do what you gotta do...
So, for the book I found... before I tell you the title, you have to promise not to freak out. Not to email or telephone me. Not to read anything into the title, or to worry that I'm becoming morbid. I'm not. Even at 4:00 a.m., I'm perfectly in my right mind and not upset about life....
The book is titled On Death and Dying, by Elisabeth Kubler-Ross, M.D. Dr. Ross is a medical doctor, psychiatrist and (here's your new word for the day) a thanatoligst. This is a profession that I didn't even know existed... Pretty interesting, really.
Dr. Kubler-Ross's book seems to be written for doctors/nurses/clergy -- to help them help their patients/families address the issue of death, whether imminent or not. I already like her book for Chapter 1 where she talks about death from a child's point of view (p 20). I profoundly appreciate any thought process that makes me more aware and sensitive to what my children (or spouse, parents, siblings, others) might be feeling but not saying.
It has me thinking about things unsaid, and that time with my family and friends is very precious. That message is loud and clear when you are first diagnosed, but it does tend to fade. I needed the reminder and am already thinking of ways to spend better time with my kids. Liam, (who is 8 and never stops moving) would love for me to suggest a 20-minute game of Wii with him each day... Tyler, who often walks our dog after school, has so much each to say about school -- a daily walk with him (and the dog) would be good for all of us. And Shane... thankfully is willing to drive anywhere with me; I already know that is good talk time.
Reading this book also got me thinking about my childhood experiences with death. I was 6 when my paternal grandmother died. Looking back, I can see my experience was similar (not exact) to what Dr. Ross describes in her book. Describing death to a 6 year old is tough business.
My paternal grandfather lived less than 5 miles from us, and he lived for many years after my grandma died. I have almost as many memories of being at his home as of being at my own, and I mainly recall that he always had time for me and my younger brother and cousin. He was the kind of grandpa who would take you to lunch and let you order ice cream as the main meal. He loved to tell stories outside in his yard (I credit him with my BSF story telling skills), and he almost always played checkers with me before dinner at our house in the evening. I also remember every Saturday night (when I often stayed with him) that he would get his Bible out and read silently to himself. I have no clue what he read -- he never tried to push or preach to me -- but I can see him on his couch, silently reading with just his lips moving to the words. I know he was getting ready for church the next morning, but that is all I know.
As I became a teenager, I became involved in my own life, and moved to college 2 hours away. He died while I was there, and the drive home for his funeral was one of the longest of my life -- I hadn't had anyone die since I was 6 years old, and I worried about what to say or do. What would be the right or wrong thing to do?
My mom handled it wonderfully. My two most vivid memories are in the funeral itself (which was hard; we loved him very much) and later in our kitchen just talking about him. What we missed about him, what we remembered about him, the details of his last days. I'll never know how hard (or comforting?) it was for my mom to talk to us kids like that, but it was such a comfort to me. Nothing was taboo, and the atmosphere immediately cleared the air for me. I knew that we could talk about him again, whenever I wanted. We did not have to avoid uncomfortable details about his death or pretend. His life and his death were real, and both had had an impact on our family. That was the message.
When my maternal grandmother died (my grandfather passed before I was born), I was an adult and living in Brussels. I had just been home a few months prior, and had had a good visit with her, so my mom said that coming home for the funeral was not necessary. I was comfortable with this, and I still appreciate her understanding of the situation (we had 2 toddlers at the time and of course lived so far away). The one regret I have is that I was not home to help my mom get through that time in her life.
Looking back, I see that death has gone full circle for me -- I experienced it as a small child, but did not understand it. I accepted and made "peace" with it as a teenager. And I learned that hard decisions sometimes have to be made as an adult. No doubt, those experiences, at three critical points in my life, have helped shape my attitude today.
Now trust me, I am NOT glamorizing death or looking for it to happen. Human nature is to hope and survive and LIVE whatever the odds, and that is what I am fighting to do. Honest! I am hoping and planning to live for another 40 years!
But I had heard about this book a long time ago, and I was interested.
When you hear the word cancer, you think the word death. It is just inevitable. Just like "up" goes with "down, or"in" goes with "out."
The relationship is automatically there. Only, no wants to talk about it.
So, for me, this book has been a comfort -- it addresses feelings and emotions that others can't or won't. If it gets to morbid, I promise to put it down. For now, it is nice to have emotions unsaid be validated.
If you work closely with people... this is a book that I would suggest. It has interviews and conversations with terminal patients, and discusses the five stages of grief/death in detail (I think; I'm not that far yet). It seems to be written with sensitivity and honesty.
Jesus said to her, "I am the resurrection and the life. He who believes in me will live, even though he dies. John 11:25
My chemo was fine. Like clockwork. I will have the Neulasta shot tomorrow (Tuesday). My hemoglobin (iron) is steady at 9.7. My oncologist is happy with this, so I am happy with this. I will continue with supplements and try to be good with my diet. The new chemo (carboplatin) starts September 22. I'll have that every three weeks for 4 times. Sounds like it will be easy to tolerate. Carbo causes hair to "thin," not to fall out. The nurse said I might start to get some hair growth back, but I think she was only trying to be nice. I'm not counting on it for a while.
I also met with my plastic surgeon -- I have a quarter size wound that will not heal (a complication of damaged, radiated skin and poor healing from current chemo). My doctor is satisfied that I have no (and probably will not develop) any infection, but we probably will not do anything more related to reconstruction surgery until after my chemotherapy is finished. Bummer -- this is no fun to doctor every day. But, you gotta do what you gotta do...
So, for the book I found... before I tell you the title, you have to promise not to freak out. Not to email or telephone me. Not to read anything into the title, or to worry that I'm becoming morbid. I'm not. Even at 4:00 a.m., I'm perfectly in my right mind and not upset about life....
The book is titled On Death and Dying, by Elisabeth Kubler-Ross, M.D. Dr. Ross is a medical doctor, psychiatrist and (here's your new word for the day) a thanatoligst. This is a profession that I didn't even know existed... Pretty interesting, really.
Dr. Kubler-Ross's book seems to be written for doctors/nurses/clergy -- to help them help their patients/families address the issue of death, whether imminent or not. I already like her book for Chapter 1 where she talks about death from a child's point of view (p 20). I profoundly appreciate any thought process that makes me more aware and sensitive to what my children (or spouse, parents, siblings, others) might be feeling but not saying.
It has me thinking about things unsaid, and that time with my family and friends is very precious. That message is loud and clear when you are first diagnosed, but it does tend to fade. I needed the reminder and am already thinking of ways to spend better time with my kids. Liam, (who is 8 and never stops moving) would love for me to suggest a 20-minute game of Wii with him each day... Tyler, who often walks our dog after school, has so much each to say about school -- a daily walk with him (and the dog) would be good for all of us. And Shane... thankfully is willing to drive anywhere with me; I already know that is good talk time.
Reading this book also got me thinking about my childhood experiences with death. I was 6 when my paternal grandmother died. Looking back, I can see my experience was similar (not exact) to what Dr. Ross describes in her book. Describing death to a 6 year old is tough business.
My paternal grandfather lived less than 5 miles from us, and he lived for many years after my grandma died. I have almost as many memories of being at his home as of being at my own, and I mainly recall that he always had time for me and my younger brother and cousin. He was the kind of grandpa who would take you to lunch and let you order ice cream as the main meal. He loved to tell stories outside in his yard (I credit him with my BSF story telling skills), and he almost always played checkers with me before dinner at our house in the evening. I also remember every Saturday night (when I often stayed with him) that he would get his Bible out and read silently to himself. I have no clue what he read -- he never tried to push or preach to me -- but I can see him on his couch, silently reading with just his lips moving to the words. I know he was getting ready for church the next morning, but that is all I know.
As I became a teenager, I became involved in my own life, and moved to college 2 hours away. He died while I was there, and the drive home for his funeral was one of the longest of my life -- I hadn't had anyone die since I was 6 years old, and I worried about what to say or do. What would be the right or wrong thing to do?
My mom handled it wonderfully. My two most vivid memories are in the funeral itself (which was hard; we loved him very much) and later in our kitchen just talking about him. What we missed about him, what we remembered about him, the details of his last days. I'll never know how hard (or comforting?) it was for my mom to talk to us kids like that, but it was such a comfort to me. Nothing was taboo, and the atmosphere immediately cleared the air for me. I knew that we could talk about him again, whenever I wanted. We did not have to avoid uncomfortable details about his death or pretend. His life and his death were real, and both had had an impact on our family. That was the message.
When my maternal grandmother died (my grandfather passed before I was born), I was an adult and living in Brussels. I had just been home a few months prior, and had had a good visit with her, so my mom said that coming home for the funeral was not necessary. I was comfortable with this, and I still appreciate her understanding of the situation (we had 2 toddlers at the time and of course lived so far away). The one regret I have is that I was not home to help my mom get through that time in her life.
Looking back, I see that death has gone full circle for me -- I experienced it as a small child, but did not understand it. I accepted and made "peace" with it as a teenager. And I learned that hard decisions sometimes have to be made as an adult. No doubt, those experiences, at three critical points in my life, have helped shape my attitude today.
Now trust me, I am NOT glamorizing death or looking for it to happen. Human nature is to hope and survive and LIVE whatever the odds, and that is what I am fighting to do. Honest! I am hoping and planning to live for another 40 years!
But I had heard about this book a long time ago, and I was interested.
When you hear the word cancer, you think the word death. It is just inevitable. Just like "up" goes with "down, or"in" goes with "out."
The relationship is automatically there. Only, no wants to talk about it.
So, for me, this book has been a comfort -- it addresses feelings and emotions that others can't or won't. If it gets to morbid, I promise to put it down. For now, it is nice to have emotions unsaid be validated.
If you work closely with people... this is a book that I would suggest. It has interviews and conversations with terminal patients, and discusses the five stages of grief/death in detail (I think; I'm not that far yet). It seems to be written with sensitivity and honesty.
Jesus said to her, "I am the resurrection and the life. He who believes in me will live, even though he dies. John 11:25
Wednesday, September 3, 2008
This is Another Technical One....
Before I start writing anything more, I want to tell you that my hemoglobin count (iron) went up this week from 2 weeks ago! The normal range for hemoglobin is 10-12; my count went up from 9.3 to 9.7. This still puts me on the low end of normal, but it is a move in the right direction! Thank you to those of you have been praying about this and/or have made food suggestions! It is definitely a praise issue, and I apologize that I forgot to mention it in the earlier posting.
The real reason for my post today.... I've been thinking about my doctor's suggestion for the drug carboplatin, and I've decided that I don't need to do much research about this. It is a good recommendation. For several reasons.
Understandably, I have been praying about a right treatment decision from my oncologist. I have a sense that God really answered that prayer yesterday. First (and I admit, subjectively), my oncologist's demeanor about a treatment decision has really changed. For several weeks he's gone back and forth with options, and has been open that he is not sure what is best. Yesterday he was confident and direct. He said with no hesitation, "I've made my decision, and it's carbo." He said it in a way that implied the final decision is still mine, but clearly this is his recommendation.
Later in the conversation, he indirectly explained why.... Cancer has a language all its own. In chat rooms, women talk about mets (short for metastasis, or the spread of cancer within the body) or about NED, No Evidence of Disease.
Within the clinical setting, researchers use terms like DFS (Disease Free Survival) and OS (Overall Survival). One that took me a while to figure out is pCR, which means "pathological complete response." This describes a tumor that completely shrinks, literally melts completely away, because of the effects of chemo.
Three weeks ago, my oncologist finished treating a triple negative patient with the drugs he used on me in 2006 (TAC) and the carboplatin at the same time -- she has a pCR. A complete response to the chemo. Her tumor went completely away! This is "shout from the roof-top" type of news!
I believe my doctor saw the success of this drug for her, and has decided that it can have benefit for me as well. Each person is different -- her tumor may have been smaller than mine?; and she is BRAC1 positive wherease I am negative for this breast cancer gene -- but any measure of success in one person is hope for success in another!
Also, carboplatin is one of the drugs Kathy Miller suggested for me if I were to continue chemo. It just seems that many things point to this drug as being a reasonable choice.
Carbo has a "sister drug" (cisplatin) that my doctor told Paul about in July, and said then that he would chose cisplatin. Now my doctor has completely changed his opinion, and this has Paul understandably concerned. We asked the doctor about this yesterday. He said that carboplatin (the drug he is recommending now) is much more easily tolerated than the other. And he has seen the carboplatin work on his own patient -- no doubt, that is affecting his recommendation.
So nothing has been 100% decided, but I am warming up to the idea of carboplatin. It seems like a reasonable choice, and will hopefully be the last chemo I'll ever need to consider. That is a big wish, but God is big enough. I just keep telling myself that!
The real reason for my post today.... I've been thinking about my doctor's suggestion for the drug carboplatin, and I've decided that I don't need to do much research about this. It is a good recommendation. For several reasons.
Understandably, I have been praying about a right treatment decision from my oncologist. I have a sense that God really answered that prayer yesterday. First (and I admit, subjectively), my oncologist's demeanor about a treatment decision has really changed. For several weeks he's gone back and forth with options, and has been open that he is not sure what is best. Yesterday he was confident and direct. He said with no hesitation, "I've made my decision, and it's carbo." He said it in a way that implied the final decision is still mine, but clearly this is his recommendation.
Later in the conversation, he indirectly explained why.... Cancer has a language all its own. In chat rooms, women talk about mets (short for metastasis, or the spread of cancer within the body) or about NED, No Evidence of Disease.
Within the clinical setting, researchers use terms like DFS (Disease Free Survival) and OS (Overall Survival). One that took me a while to figure out is pCR, which means "pathological complete response." This describes a tumor that completely shrinks, literally melts completely away, because of the effects of chemo.
Three weeks ago, my oncologist finished treating a triple negative patient with the drugs he used on me in 2006 (TAC) and the carboplatin at the same time -- she has a pCR. A complete response to the chemo. Her tumor went completely away! This is "shout from the roof-top" type of news!
I believe my doctor saw the success of this drug for her, and has decided that it can have benefit for me as well. Each person is different -- her tumor may have been smaller than mine?; and she is BRAC1 positive wherease I am negative for this breast cancer gene -- but any measure of success in one person is hope for success in another!
Also, carboplatin is one of the drugs Kathy Miller suggested for me if I were to continue chemo. It just seems that many things point to this drug as being a reasonable choice.
Carbo has a "sister drug" (cisplatin) that my doctor told Paul about in July, and said then that he would chose cisplatin. Now my doctor has completely changed his opinion, and this has Paul understandably concerned. We asked the doctor about this yesterday. He said that carboplatin (the drug he is recommending now) is much more easily tolerated than the other. And he has seen the carboplatin work on his own patient -- no doubt, that is affecting his recommendation.
So nothing has been 100% decided, but I am warming up to the idea of carboplatin. It seems like a reasonable choice, and will hopefully be the last chemo I'll ever need to consider. That is a big wish, but God is big enough. I just keep telling myself that!
Tuesday, September 2, 2008
We're Home
We are home. It was a long day -- Paul and I got the boys off to school, and left for Beaumont at 9:00 a.m. We were home at 7:00 p.m. It was a long day, but today was my last big chemo. That is something to be thankful for!
This is an evening where I wish we had a guest room -- after this chemo I am tired and want to rest (in contrast to the short chemos where I am wired and wide awake), but I will not sleep well. I'll more like toss and turn, and worry about keeping Paul awake...
My doctor wants to put me on a drug called carboplatin after I am finished with this series of treatments. He wants me to do 4 rounds of the drug, spaced out every three weeks. Over the course of the next week, Paul and I will be researching this drug. Also, the American Society of Clinical Oncologists (ASCO) is having a meeting this weekend, and one afternoon is dedicated to triple negative BC. In fact, one of the topics is "The Best Chemotherapy for Triple Negative BC." It is perfect timing, God's timing. I'll be checking out that website over the weekend. Many of the presentations are put on-line after the fact.
A couple of days ago, my son Tyler commented that I do more than most people who do not have cancer. I repeated this today in my consultation with my oncologist. Without skipping a beat, he corrected me and said, "... had cancer. You don't have cancer; you had cancer." Something to keep reminding myself of each day....
All three boys had a good start to school. We still are not on track for getting to bed early, but this morning went fine. Little steps....
This is an evening where I wish we had a guest room -- after this chemo I am tired and want to rest (in contrast to the short chemos where I am wired and wide awake), but I will not sleep well. I'll more like toss and turn, and worry about keeping Paul awake...
My doctor wants to put me on a drug called carboplatin after I am finished with this series of treatments. He wants me to do 4 rounds of the drug, spaced out every three weeks. Over the course of the next week, Paul and I will be researching this drug. Also, the American Society of Clinical Oncologists (ASCO) is having a meeting this weekend, and one afternoon is dedicated to triple negative BC. In fact, one of the topics is "The Best Chemotherapy for Triple Negative BC." It is perfect timing, God's timing. I'll be checking out that website over the weekend. Many of the presentations are put on-line after the fact.
A couple of days ago, my son Tyler commented that I do more than most people who do not have cancer. I repeated this today in my consultation with my oncologist. Without skipping a beat, he corrected me and said, "... had cancer. You don't have cancer; you had cancer." Something to keep reminding myself of each day....
All three boys had a good start to school. We still are not on track for getting to bed early, but this morning went fine. Little steps....
Monday, September 1, 2008
It is late, almost 9:00 p.m., so I am going to try to write this posting quickly.... Labor Day weekend is a memory, and the first day of school comes tomorrow.
We had a busy, but good, weekend. We spent part of the weekend at the home we're building in Manistee, MI, and the second part at Paul's parents cottage in Oscoda, MI. That's right -- both big lakes in one weekend. We're nuts! But, we had great weather, got good work done at our place, and were able to relax in Oscoda. It was a good weekend. Tyler turned 14 on Sunday, so I know he was excited for the weekend!
But being back at home brings everything back to reality. Today there were items to unpack, grass to mow, groceries to purchase, and things to be done before school starts for the first day tomorrow.
To add to the list, I have a long chemo tomorrow. It is a bummer in many respects to have to go back to Beaumont again. In a word, Paul and I are both weary of making the trip; of spending the time driving there and back (as well as treatment time). There are so many other ways that we'd rather be spending our time, and on the end of a busy weekend, it is just that much harder to gear ourselves up for the trip.
But, of course, we will make the trip, and whatever has to wait around the house (weekend laundry, etc.) will still be there on Wednesday. Cancer is costly in many respects -- but lost time for treatment is a great paradox of the disease. You deliberately spend time on treatment, hoping and praying it will buy you more living time in the long run.
So, here's to the first day of school for my boys, and hopefully my last "long" chemo. Part of that will depend on the treatment decision my oncologist makes after next week. Much of it will depend upon my response the treatment over the course of the next months and years.
With fingers crossed....
We had a busy, but good, weekend. We spent part of the weekend at the home we're building in Manistee, MI, and the second part at Paul's parents cottage in Oscoda, MI. That's right -- both big lakes in one weekend. We're nuts! But, we had great weather, got good work done at our place, and were able to relax in Oscoda. It was a good weekend. Tyler turned 14 on Sunday, so I know he was excited for the weekend!
But being back at home brings everything back to reality. Today there were items to unpack, grass to mow, groceries to purchase, and things to be done before school starts for the first day tomorrow.
To add to the list, I have a long chemo tomorrow. It is a bummer in many respects to have to go back to Beaumont again. In a word, Paul and I are both weary of making the trip; of spending the time driving there and back (as well as treatment time). There are so many other ways that we'd rather be spending our time, and on the end of a busy weekend, it is just that much harder to gear ourselves up for the trip.
But, of course, we will make the trip, and whatever has to wait around the house (weekend laundry, etc.) will still be there on Wednesday. Cancer is costly in many respects -- but lost time for treatment is a great paradox of the disease. You deliberately spend time on treatment, hoping and praying it will buy you more living time in the long run.
So, here's to the first day of school for my boys, and hopefully my last "long" chemo. Part of that will depend on the treatment decision my oncologist makes after next week. Much of it will depend upon my response the treatment over the course of the next months and years.
With fingers crossed....
Sunday, August 24, 2008
Komen's 3-Day Walk
I have a friend from the library, Brandi, who is walking in the Komen's 3-Day Walk for breast cancer, September 26-28. Brandi is walking with her aunt and her mother. They'll walk 15-22 miles for three days (60 miles total), and will sleep in tents each night.
This is a fund raising event for Susan G. Komen for the Cure (85% of monies raised is used for breast cancer research, etc.). Fifteen percent of the money goes to the National Philanthropic Trust Breast Cancer Fund to provide endowment funds for research.
I am beyond touched by this. To say "Thank You," seems so inadequate.
Brandi is still collecting funds for her walk -- each person has to raise $2,200 to participate in the race. If you would like to support Brandi's walk, her website is here. I know that we both say "Thank you!"
This is a fund raising event for Susan G. Komen for the Cure (85% of monies raised is used for breast cancer research, etc.). Fifteen percent of the money goes to the National Philanthropic Trust Breast Cancer Fund to provide endowment funds for research.
The 3-day walk is legendary.... I've seen books dedicated to the race, and have read only encouraging, inspiring things about it.
I am beyond touched by this. To say "Thank You," seems so inadequate.
Brandi is still collecting funds for her walk -- each person has to raise $2,200 to participate in the race. If you would like to support Brandi's walk, her website is here. I know that we both say "Thank you!"
Friday, August 22, 2008
We All Play the Game
Yesterday I took Tyler to Dow High for his ninth grade orientation. It was an opportunity for both of us to see people we hadn't seen all summer. Which brings me to my latest rant...
I had a number of people look me square in the eye -- with my scarf wrapped around my head in traditional chemo style -- and ask me point blank, "So, have you had a nice summer?"
The first time, this just stunned me.
I'm sorry -- are you missing the obvious CANCER hints?
Like my head wrapped in a scarf? No one does that for fashion....
One dear friend (at least she's dear to me now!) was astute enough to stop and simply ask, "So what are you dealing with?" It turns out she had breast cancer herself three years ago. She knew enough to be pointed in asking what I was dealing with and to listen. She and I talked for a long time in the hallway of Dow High.
But I digress.... As much as I wanted to be outraged by the people who could only muster the courage to ask about my summer vacation, I have to admit that I played the same game all afternoon -- instead of being truthful about my summer (which has not been all bad, I have to admit), I simply smiled and said "Oh fine... How about your summer?" At which point the conversations became awkward and shallow. It was a very long afternoon...
Thankfully, today, I finally got it right. A neighbor asked about my summer, and I started to smile and say that it had been "fine." But then I just couldn't do it.... As politely as possible, I straightened my scarf and answered, "Its been fine, but it's been tough. I've been battling breast cancer." That completely opened up the conversation. It was a relief to her to have her question answered, and to me to not have to pretend that all is well. She and I had a good talk after that.
So here's my point... If you see someone who is going through an obviously difficult time, like cancer, please do not ignore it. I don't know what the "right" question is to ask, but ignoring the obvious only makes a person feel more alienated.
And for as much as I should have spoken up and answered the unspoken questions yesterday, I sometimes feel angry that my role is to make everyone else around me feel more "comfortable" with my cancer. If I had a cast on my leg, no one would think twice about asking how a broken leg happened. But for some reason, cancer is off limits? Granted, it is more serious than something like a broken leg, but it is also obvious and real. Don't ignore the obvious.
Yesterday, I kept quiet and remained polite. But on the inside I felt angered and slighted for the better part of the afternoon. Those are understandable emotions -- I don't think anyone would fault me for feeling them. But my reluctance to speak up was costly -- I'll never know the depth of conversations that might have taken place if I had answered honestly about my summer vacation. I regret that now -- that someone might have had a need to discuss something "real," and I just played the game.
Life is very short. It is not a game.
Speak to others tactfully and with compassion, but honestly. I hate that I have cancer, but I have it. I believe that nothing comes to us that God does not allow or control; we get the good with the bad. By trying to hide or ignore my cancer yesterday, I probably missed out on something very special.
I had a number of people look me square in the eye -- with my scarf wrapped around my head in traditional chemo style -- and ask me point blank, "So, have you had a nice summer?"
The first time, this just stunned me.
I'm sorry -- are you missing the obvious CANCER hints?
Like my head wrapped in a scarf? No one does that for fashion....
One dear friend (at least she's dear to me now!) was astute enough to stop and simply ask, "So what are you dealing with?" It turns out she had breast cancer herself three years ago. She knew enough to be pointed in asking what I was dealing with and to listen. She and I talked for a long time in the hallway of Dow High.
But I digress.... As much as I wanted to be outraged by the people who could only muster the courage to ask about my summer vacation, I have to admit that I played the same game all afternoon -- instead of being truthful about my summer (which has not been all bad, I have to admit), I simply smiled and said "Oh fine... How about your summer?" At which point the conversations became awkward and shallow. It was a very long afternoon...
Thankfully, today, I finally got it right. A neighbor asked about my summer, and I started to smile and say that it had been "fine." But then I just couldn't do it.... As politely as possible, I straightened my scarf and answered, "Its been fine, but it's been tough. I've been battling breast cancer." That completely opened up the conversation. It was a relief to her to have her question answered, and to me to not have to pretend that all is well. She and I had a good talk after that.
So here's my point... If you see someone who is going through an obviously difficult time, like cancer, please do not ignore it. I don't know what the "right" question is to ask, but ignoring the obvious only makes a person feel more alienated.
And for as much as I should have spoken up and answered the unspoken questions yesterday, I sometimes feel angry that my role is to make everyone else around me feel more "comfortable" with my cancer. If I had a cast on my leg, no one would think twice about asking how a broken leg happened. But for some reason, cancer is off limits? Granted, it is more serious than something like a broken leg, but it is also obvious and real. Don't ignore the obvious.
Yesterday, I kept quiet and remained polite. But on the inside I felt angered and slighted for the better part of the afternoon. Those are understandable emotions -- I don't think anyone would fault me for feeling them. But my reluctance to speak up was costly -- I'll never know the depth of conversations that might have taken place if I had answered honestly about my summer vacation. I regret that now -- that someone might have had a need to discuss something "real," and I just played the game.
Life is very short. It is not a game.
Speak to others tactfully and with compassion, but honestly. I hate that I have cancer, but I have it. I believe that nothing comes to us that God does not allow or control; we get the good with the bad. By trying to hide or ignore my cancer yesterday, I probably missed out on something very special.
Tuesday, August 19, 2008
Finally, some GOOD news about Triple Negative BC
One of the side affects of my short chemo is that I don't sleep well afterwards. They must give me some medication (or it is the Gemzar) that keeps me really alert, because the last two times I had this treatment I tossed and turned all night.
So tonight, even though it is around 1:30 a.m., I'm wide awake, and am using the time to do some research. One of the more credible sites that I like to browse is the American Society of Clinical Oncology (ASCO). It is a resource that my oncologist respects, and I have to believe that the folks who present at their symposiums are some of the most respected in their field. Tonight, I found two reports of good prognosis related to triple negative cancer
They conclude:
This is very hopeful information, and completely inconsistent with the information presented to me by Kathy Miller. She is a very well respected doctor in her field -- I don't want to misrepresent that on this blog. She is considered one of the best of the best. But neither she (nor anyone) cannot predict the future with the clarity she presented a couple of weeks ago. There are too many variables, and these reports are both clinical evidence of HOPE for triple negative patients.
Consistently, the most important factor in prognosis is lymph node and blood vessel involvement of the cancer. I had lymph node involvement with my first breast cancer (we just aren't sure how much?), but pathology showed no blood vessel involvement with either of my cancers. The degree to which the lymph node involvement will play in my overall health is an unknown for me, and I have to believe that is meant to be. God knows those details. Even though I might want that information, I don't need that information.
This is the first encouraging news I've seen about triple negative breast cancer in a while... triple negative is hard to beat, but not unbeatable! I am very encouraged to find such positive news from a credible organization!
Now seems like a good time to try to get some sleep....
So tonight, even though it is around 1:30 a.m., I'm wide awake, and am using the time to do some research. One of the more credible sites that I like to browse is the American Society of Clinical Oncology (ASCO). It is a resource that my oncologist respects, and I have to believe that the folks who present at their symposiums are some of the most respected in their field. Tonight, I found two reports of good prognosis related to triple negative cancer
They conclude:
Conclusions: Not all of these Triple Negative Breast Cancer patients had poor prognosis as mentioned in literature. Both the overall survival and disease free survival are almost similar to those with (other types of breast cancer). Effective treatment strategies can only be implemented with increased understanding of the biology of this distinct breast cancer subtype.
The distant metastasis-free rate after 5 years was 85% (Kathy Miller only gave me a 5% chance for the next 2 years!?) . Conclusions: Triple negative subtype could be a predictor of relapse rate compared with the rest of the group. However there was no significant difference in 5 year survival between triple negative and the rest of the patients.This is very hopeful information, and completely inconsistent with the information presented to me by Kathy Miller. She is a very well respected doctor in her field -- I don't want to misrepresent that on this blog. She is considered one of the best of the best. But neither she (nor anyone) cannot predict the future with the clarity she presented a couple of weeks ago. There are too many variables, and these reports are both clinical evidence of HOPE for triple negative patients.
Consistently, the most important factor in prognosis is lymph node and blood vessel involvement of the cancer. I had lymph node involvement with my first breast cancer (we just aren't sure how much?), but pathology showed no blood vessel involvement with either of my cancers. The degree to which the lymph node involvement will play in my overall health is an unknown for me, and I have to believe that is meant to be. God knows those details. Even though I might want that information, I don't need that information.
This is the first encouraging news I've seen about triple negative breast cancer in a while... triple negative is hard to beat, but not unbeatable! I am very encouraged to find such positive news from a credible organization!
Now seems like a good time to try to get some sleep....
There and Back Again!
Well, Liam and I made it to Detroit and back, just fine. Paul and his sister gave me great directions, and I generally knew where I was going. I only got turned around one time -- I'm relieved and proud of myself both! I still prefer to have Paul go with me for his company. And sometimes I have appointments where I need him (or someone) to drive me afterward. But, it is also good to know that I can manage myself on easier appointments and not make Paul miss work (a full day, driving there and back) each time on almost a weekly basis. This is a good balance for all of us.
My doctor visit and chemo went well.... My doctor was agreeable to test my pathology for one of the tests that I wanted (EGFR), but said he could not do the other test (P63/P73) at their hospital, and even then was not sure how the test results would affect a treatment decision. I'm going to get the results back from first test; if it is negative, I'll push harder for the second test.
Shane and Tyler are still not home from their youth overnighter, and Paul has a business dinner tonight (global meetings for his department all week). Liam and I are going to go out for dinner. My doc says that I'm still anemic (have been for a while, actually), and he can't give me meds that he used to do for anemia (long story -- pharmacuetuical companies, insurance and FDA warnings... ). So, despite trying to eat less red meat, I think a big, juicy steak might be in order for the evening. I'll search the web for other iron building foods tomorrow.... :-)
My doctor visit and chemo went well.... My doctor was agreeable to test my pathology for one of the tests that I wanted (EGFR), but said he could not do the other test (P63/P73) at their hospital, and even then was not sure how the test results would affect a treatment decision. I'm going to get the results back from first test; if it is negative, I'll push harder for the second test.
Shane and Tyler are still not home from their youth overnighter, and Paul has a business dinner tonight (global meetings for his department all week). Liam and I are going to go out for dinner. My doc says that I'm still anemic (have been for a while, actually), and he can't give me meds that he used to do for anemia (long story -- pharmacuetuical companies, insurance and FDA warnings... ). So, despite trying to eat less red meat, I think a big, juicy steak might be in order for the evening. I'll search the web for other iron building foods tomorrow.... :-)
Monday, August 18, 2008
Happy Anniversary
Some days merit special recognition -- holidays and birthdays, and today is our 18th wedding anniversary!
We plan to celebrate at home -- we have a curry chicken recipe that we enjoy but our kids will not touch! So it is a special dinner when we get to have it. I do the prep work and Paul does the cooking; a true joint effort. And for tonight, I'm also making a curried carrot soup. It is a recipe that Paul has wanted to try for a long time, and I figure it must be loaded with antioxidants. A win-win situation for us both!
As luck would have it, the two older boys are at a youth all-nighter tonight. Liam will be home, but I kind of like the idea of having him hang out with us. One of my favorite anniversary memories is being at dinner in Frankfort, MI with Paul and the two older boys -- it was just one of those memorable nights when everyone was in a good mood and all was well with the world. It sounds corny, but we talked and laughed and had a great time. I actually remember sitting in the restaurant thinking to myself, "It just doesn't get any better than this." I am very thankful to God for moments like those! They keep me going....
Tomorrow is another chemo day for me -- a short one. I have pointed questions for my oncologist -- I would like him to do some very specific tests on my pathology slides to (possibly) help us pin point chemos that will be most beneficial for me. I don't know how open he will be to doing some of the tests I want? They are not "standard" for breast cancer. He has been very supportive thus far, so I am hopeful for a good conversation.
I'm also a bit nervous about tomorrow because I'll be driving down by myself. The chemo does not bother me -- this one is an easy treatment. But navigating my way to my sister-in-law's house to drop off Liam, and then from her house to the hospital is another story. Years ago, Paul nicknamed me Magellan, but not because of my keen sense of direction! (smile). But, I choose to see it as yet another challenge to be met... That's the interesting part of having had something like cancer -- you tend to thrive on little challenges like this.
For now, my focus is on enjoying tonight. It is an appropriate night for one of my favorite Bible verses: Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. (Matthew 6:34). Amen, and amen!
We plan to celebrate at home -- we have a curry chicken recipe that we enjoy but our kids will not touch! So it is a special dinner when we get to have it. I do the prep work and Paul does the cooking; a true joint effort. And for tonight, I'm also making a curried carrot soup. It is a recipe that Paul has wanted to try for a long time, and I figure it must be loaded with antioxidants. A win-win situation for us both!
As luck would have it, the two older boys are at a youth all-nighter tonight. Liam will be home, but I kind of like the idea of having him hang out with us. One of my favorite anniversary memories is being at dinner in Frankfort, MI with Paul and the two older boys -- it was just one of those memorable nights when everyone was in a good mood and all was well with the world. It sounds corny, but we talked and laughed and had a great time. I actually remember sitting in the restaurant thinking to myself, "It just doesn't get any better than this." I am very thankful to God for moments like those! They keep me going....
Tomorrow is another chemo day for me -- a short one. I have pointed questions for my oncologist -- I would like him to do some very specific tests on my pathology slides to (possibly) help us pin point chemos that will be most beneficial for me. I don't know how open he will be to doing some of the tests I want? They are not "standard" for breast cancer. He has been very supportive thus far, so I am hopeful for a good conversation.
I'm also a bit nervous about tomorrow because I'll be driving down by myself. The chemo does not bother me -- this one is an easy treatment. But navigating my way to my sister-in-law's house to drop off Liam, and then from her house to the hospital is another story. Years ago, Paul nicknamed me Magellan, but not because of my keen sense of direction! (smile). But, I choose to see it as yet another challenge to be met... That's the interesting part of having had something like cancer -- you tend to thrive on little challenges like this.
For now, my focus is on enjoying tonight. It is an appropriate night for one of my favorite Bible verses: Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. (Matthew 6:34). Amen, and amen!
Wednesday, August 13, 2008
Lots of Questions... Kind of Technical Answers
I'm sensing that a lot of people have more questions about my cancer and prognosis than are comfortable saying out loud. I will try to explain my situation as clearly as I understand it, with links to technical terms in case you want more information/detail. It does get to be overwhelming.
First, it is safe to say that my doctors agree that this second episode of cancer is not a new cancer. Rather, they think this cancer was always present, but was too small to be seen on mammograms or MRIs and too immature to respond to the chemotherapy or radiation.
Most people realize that the first thing to determine in a cancer diagnosis is the amount of disease with which you are dealing. This is done by "sizing" the original tumor that has been found, doing body and bone scans to look for cancer spread, and checking the lymph nodes and blood vessels. Based upon my tumor size and lymph node involvement, my original cancer (October 2006) was staged 2b -- on the very boundary between early and late stage cancer.
Some good news..... my original (and recent) bone and body scans have all came back with no signs of cancer elsewhere in my body. That is very encouraging. The more time that passes with clean scans, the better my prognosis.
My lymph nodes were checked in October 2006. The standard way to check for lymph node involvement is with a sentinel node biopsy. The surgeon removes up to three lymph nodes, and the nodes are checked right in the surgery unit for signs of cancer. If the lymph nodes show cancer, then all of them are removed and are evaluated to measure the spread of the cancer. In my case, the three lymph nodes were negative in the surgery unit -- no sign of cancer could be found on the first look. So, the surgeon left my remaining nodes in place, and I started chemotherapy later that same day. Unfortunately, in the lab, the pathologist found that 2/3 of my lymph nodes were positive for cancer. In an ideal world, all of the lymph nodes would have been removed for immediate evaluation. But, since I had already started chemotherapy, that was not an option -- surgery and chemo do not mix well as the risk of surgical infection and poor healing is a complication of chemotherapy. We will never know the extent to which my lymph nodes were infected (or not) with cancer. This makes it hard to evaluate the likelihood that cancer might have spread to other parts of my body. Clean body scans are excellent signs, but the question will always be up in the air.
So, this brings me closer to Dr. Miller's thinking : if cancer could exist in my breast -- undetected and unresponsive to chemotherapy and radiation -- then it is likely that a similar, resistant cancer could exist elsewhere in my body. My oncologist is treating me with similar drugs this time as before -- Dr. Miller's opinion is that those drugs were ineffective against the second cancer in my breast, so it is futile to think they will be effective against other cancers that might be elsewhere in my body.
My oncologist has approached my chemotherapy with a 2-stage approach: I am using Taxol and Gemzar through Labor Day, and then will start another combination of drugs after that. If anything good has come from my discussion with Dr. Miller is that my current oncologist and I are having more open discussions about drug options. But, the research with triple negative breast cancer is incomplete, and a variety of drug options exist. Two of the newest ones, Ixmepra and Avastin, are relatively new and still not well studied yet for adverse side affects. The side affects that are known (liver toxicity and uncontrolled bleeding) are not appealing. Avastin was initially rejected by the FDA as treatment for breast cancer in December 2007 , but by February 2008, the drug company had won its approval. A treatment victory for breast cancer patients, or the persistence of drug lobbyist and professionals?
My oncologist has tried to stay away from some of these newer drugs for me because of their toxicity and side affects -- for a patient who is showing no sign of cancer spread outside of the breast, why risk the other problems? Stick with "tried and true" chemotherapies. The problem is that those might not be the most effective. It's also possible that they might not be needed at all -- perhaps the cancer has always been only in the breast, and the mastectomy has treated it. We just don't know.
Finally, I will explain my cancer like I explain it to my boys --with a gardening analogy. Any good gardener knows that you weed your flower beds, and you spread Preen Weed Preventer to discourage new weeds from growing. Well, breast cancer cells are like the weeds. Most of them respond to the Preen (or drugs like Tamoxifen or Herceptin or Tykerb, if we are talking about breast cancer). But my cancer, triple negative, will not respond to any of these drugs. They are completely ineffective.
So, just as a gardener has to constantly tend to the garden looking for and pulling the stubborn weeds, my doctors have to constantly evaluate me and look for signs of new disease. Surgery is my "weed pulling," and chemotherapy is my Round-Up Weed Killer. But, it requires constant evaluation and diligence to react to the new weeds (i.e cancer). Diet and exercise help, much like mulch helps in a garden to suppress new weeds, but they are ultimately ineffective against the most aggressive and determined weeds (cancers).
The reality is that only time will tell if my cancer is cured. The longer a triple negative patient goes without a recurrence, the better her prognosis. That begs the question of my current situation -- is it a true recurrence, or just a "surgery failure"? Only time will tell, and only God knows. This is the best I can do for the moment to try to make my situation more understandable...
Sunday, August 10, 2008
Walking on Water.... still
This morning in church -- we haven't been there in several weeks -- the guest minister referenced the story of Peter walking on the water from Matthew 14. That is an important story for me; it is the "theme" for this blog and a source of encouragement for me. I feel a bit like Peter in the story, when he sees the waves and becomes afraid:
Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, "Lord, save me!" (v. 29-30)
As soon as Peter took his eyes off Jesus, he saw his circumstances and he became afraid. He started to sink. My prognosis and the words of Kathy Miller are my wind. If I dwell on them for too long, I can feel myself start to sink emotionally. Literally. So, it is important for me to remember Jesus' response:
Immediately Jesus reached out his hand and caught him. You of little faith," he said, "why did you doubt?" And when they climbed into the boat, the wind died down. (v. 31-32).
Do I believe that Jesus is nearby and able to reach out his hand to catch me? I do.... I just hope and pray that he does it soon -- I am ready for my wind to die down. Literally.
Today after church we told our older boys what Dr. Miller had said in her consultation last Wednesday. They continue to react to information in a very consistent way -- Shane is forever the fact finder, asking questions and trying to process all of the information. It is hard to tell how upset he is about the news. He puts on a strong front, and does not show his emotions very openly. Tyler had some questions, but he pretty much wears his heart on his sleeve. He needed more reassurance and encouragement. He liked Psalm 112:7, the Bible verse that I had read before the consultation with Kathy Miller.
Dr. Miller might think she was being compassionate by being so "realistic" about my prognosis, but I really and truly resent the information she gave me -- it is a defeatist attitude that has caused my family much grief. She has past experience and statistics to back up her point of view, but no one knows anyone's outcome over the next two years or beyond. I think my anger is what keeps me from spiraling out of control -- I am determined to prove her wrong and to LIVE a full, long life.
And so my fight goes on -- tomorrow is my next chemo date. It is a 4-hour chemo, and after this one I'll be more than half way through the first round of chemo. Another batch of drugs start after Labor Day. My oncologist continues to be optimistic, and I rely on his optimism. It is much better than anything Dr. Miller had to offer me. Perhaps my oncologist knows that the best "chemo" available is hope.
Then Peter got down out of the boat, walked on the water and came toward Jesus. But when he saw the wind, he was afraid and, beginning to sink, cried out, "Lord, save me!" (v. 29-30)
As soon as Peter took his eyes off Jesus, he saw his circumstances and he became afraid. He started to sink. My prognosis and the words of Kathy Miller are my wind. If I dwell on them for too long, I can feel myself start to sink emotionally. Literally. So, it is important for me to remember Jesus' response:
Immediately Jesus reached out his hand and caught him. You of little faith," he said, "why did you doubt?" And when they climbed into the boat, the wind died down. (v. 31-32).
Do I believe that Jesus is nearby and able to reach out his hand to catch me? I do.... I just hope and pray that he does it soon -- I am ready for my wind to die down. Literally.
Today after church we told our older boys what Dr. Miller had said in her consultation last Wednesday. They continue to react to information in a very consistent way -- Shane is forever the fact finder, asking questions and trying to process all of the information. It is hard to tell how upset he is about the news. He puts on a strong front, and does not show his emotions very openly. Tyler had some questions, but he pretty much wears his heart on his sleeve. He needed more reassurance and encouragement. He liked Psalm 112:7, the Bible verse that I had read before the consultation with Kathy Miller.
Dr. Miller might think she was being compassionate by being so "realistic" about my prognosis, but I really and truly resent the information she gave me -- it is a defeatist attitude that has caused my family much grief. She has past experience and statistics to back up her point of view, but no one knows anyone's outcome over the next two years or beyond. I think my anger is what keeps me from spiraling out of control -- I am determined to prove her wrong and to LIVE a full, long life.
And so my fight goes on -- tomorrow is my next chemo date. It is a 4-hour chemo, and after this one I'll be more than half way through the first round of chemo. Another batch of drugs start after Labor Day. My oncologist continues to be optimistic, and I rely on his optimism. It is much better than anything Dr. Miller had to offer me. Perhaps my oncologist knows that the best "chemo" available is hope.
Saturday, August 9, 2008
Good Article on Diet & Breast Cancer
I came across this article today -- much of the information that I have read in the past, but need to start living out on a more regular basis.
Low fat... Vegetarian.... Low fat... Lots of fruits and veggies. Low fat?
Also, a link between breast cancer and insulin. The need for low glycemic foods. Which, coincidently, are low fat!
(Update: Jan2014 -- the article was originally linked to this post, but it is no longer available?. Since the description of the article content still seemed helpful, I have deleted the article link but kept the post as-is.)
Low fat... Vegetarian.... Low fat... Lots of fruits and veggies. Low fat?
Also, a link between breast cancer and insulin. The need for low glycemic foods. Which, coincidently, are low fat!
(Update: Jan2014 -- the article was originally linked to this post, but it is no longer available?. Since the description of the article content still seemed helpful, I have deleted the article link but kept the post as-is.)
Thursday, August 7, 2008
He Says, She Says....
Just before my surgery in May, I found a prayer journal in our local Christian bookshop. I use it each week, moving new requests from last week to on-going requests for next week. The journal has a place for answered prayers and praises, and, just on my own, I've been collecting encouraging Bible verses and quotations that I come across. This is the first time in my life I've been intentional about keeping track of prayer requests and answers to prayer. It has been a really interesting activity. One of the Bible verses that I've written in this week's journal is Psalm 112:7:
He will have no fear of bad news;
his heart is steadfast, trusting in the LORD.
This is surely a verse that God knew I would need for my consultation with Dr. Kathy Miller on Wednesday morning. Both of my sisters went with me, and Paul was able to listen to the doctor's comments via my cell phone. She spent probably about 45 minutes with me, and essentially told me to give up chemotherapy now because she was 95% certain that I would develop metastatic (incurable) cancer within the next 1-2 years. I shouldn't "waste" my good time now feeling badly from unnecessary and unhelpful chemo. She was kind and compassionate as she offered this news, but definite. In her mind, my future is short and it is grim.
Wow... Somehow my sisters and I were able to eat lunch afterward. Each bite was a heavy one. We discussed how in the world I would break this news to the rest of my family and to our boys?? Paul left his office, and went home to telephone his family and regroup. I also called my Beaumont oncologist to let him know that Dr. Miller would be calling him, and that her "treatment plan" was radically different than his. If he could talk to her before our appointment with him on Monday, that would be great.
He called me at my parents home that same night.
God bless him -- he was as upbeat and hopeful as she was grim.
By the time he called me, he had already talked to Dr. Miller, and he said he completely disagreed with her assessment. Her job is deal with metastatic (incurable) disease, and his job is to do whatever necessary to make sure his patients do not progress that far. He said he felt "strongly" that the chemo drugs I am on now are a good strategy and that we should stay the course. I said I would continue the chemo that has already started. He also suggested (to Paul in a separate phone call) that I buy a stack of post cards -- presumably to mail out one each year to Kathy Miller!
So, who is right and who is wrong? Only time will tell. Only God knows.
But I'm not the kind of person who is just willing to lay down and die. To end chemo now because it might not work seems like a defeatist attitude. One of my favorite quotes is from the Introduction of a book by Sue Buchanan entitled I'm Alive and the Doctor's Dead:
"The computer (or statistics or expert doctor or...) doesn't know you. It doesn't know how often you laugh or cry or that you have spunk. It doesn't know about the support of your family and friends and how well you're loved; whether or not you're prayed for isn't taking into consideration by the statisticians. And no matter how many mega-giga-humonga-bytes-bits-RAM the computer may contain, it simply isn't capable of computing the fact that -- are you ready for this? -- the God of the universe has a timetable for your life and mine! Yea! Rah! Cheers! Maybe a hallelujah or two!"
My future is unknown to me, but it is secure in God's hands. That is what He wanted me to remember with Psalm 112:7. I'm not unrealistic -- my time with my family might be very short. I might never see my kids graduate or hold my grandchildren. God forbid, Paul might retire as a widow. But I am also not giving up -- I'll continue with a doctor who has hope and who gives me hope. I can make better diet/exercise choices. I'll try to live each day fully and completely. It is all in God's hands. He is the true expert.
He will have no fear of bad news;
his heart is steadfast, trusting in the LORD.
This is surely a verse that God knew I would need for my consultation with Dr. Kathy Miller on Wednesday morning. Both of my sisters went with me, and Paul was able to listen to the doctor's comments via my cell phone. She spent probably about 45 minutes with me, and essentially told me to give up chemotherapy now because she was 95% certain that I would develop metastatic (incurable) cancer within the next 1-2 years. I shouldn't "waste" my good time now feeling badly from unnecessary and unhelpful chemo. She was kind and compassionate as she offered this news, but definite. In her mind, my future is short and it is grim.
Wow... Somehow my sisters and I were able to eat lunch afterward. Each bite was a heavy one. We discussed how in the world I would break this news to the rest of my family and to our boys?? Paul left his office, and went home to telephone his family and regroup. I also called my Beaumont oncologist to let him know that Dr. Miller would be calling him, and that her "treatment plan" was radically different than his. If he could talk to her before our appointment with him on Monday, that would be great.
He called me at my parents home that same night.
God bless him -- he was as upbeat and hopeful as she was grim.
By the time he called me, he had already talked to Dr. Miller, and he said he completely disagreed with her assessment. Her job is deal with metastatic (incurable) disease, and his job is to do whatever necessary to make sure his patients do not progress that far. He said he felt "strongly" that the chemo drugs I am on now are a good strategy and that we should stay the course. I said I would continue the chemo that has already started. He also suggested (to Paul in a separate phone call) that I buy a stack of post cards -- presumably to mail out one each year to Kathy Miller!
So, who is right and who is wrong? Only time will tell. Only God knows.
But I'm not the kind of person who is just willing to lay down and die. To end chemo now because it might not work seems like a defeatist attitude. One of my favorite quotes is from the Introduction of a book by Sue Buchanan entitled I'm Alive and the Doctor's Dead:
"The computer (or statistics or expert doctor or...) doesn't know you. It doesn't know how often you laugh or cry or that you have spunk. It doesn't know about the support of your family and friends and how well you're loved; whether or not you're prayed for isn't taking into consideration by the statisticians. And no matter how many mega-giga-humonga-bytes-bits-RAM the computer may contain, it simply isn't capable of computing the fact that -- are you ready for this? -- the God of the universe has a timetable for your life and mine! Yea! Rah! Cheers! Maybe a hallelujah or two!"
My future is unknown to me, but it is secure in God's hands. That is what He wanted me to remember with Psalm 112:7. I'm not unrealistic -- my time with my family might be very short. I might never see my kids graduate or hold my grandchildren. God forbid, Paul might retire as a widow. But I am also not giving up -- I'll continue with a doctor who has hope and who gives me hope. I can make better diet/exercise choices. I'll try to live each day fully and completely. It is all in God's hands. He is the true expert.
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