Monday, December 15, 2008

I Forget How "Un-Normal" Cancer Treatment Is

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!

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:
  1. 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.
  2. 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).
  3. 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.
All very unsettling news. I went to the library after talking some of this through with my doctor yesterday -- better to be there than to be home and worried. As I drove home, I asked God to help direct/comfort me. Any of you who have followed this blog know that the story of Peter walking on the water has been the "theme" of my second battle with breast cancer. After I finished praying, the song "Voice of Truth" by Casting Crowns came on the radio. Videos of this song are posted on my blog. Some of the lyrics are:

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

I'm not reading anything into this except that God was (and is) nearby. I've consistently had friends (and Paul) say to have the blood transfusion. For today, this is what I am going to do.

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!

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.... ! :-)

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.

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)