Fourth Chemo & A Family Visit

Today was my fourth chemo -- a short one. We left home just after 8:30 a.m., dropped our puppy and kids off at Paul's sister house (where they swam in her pool all morning), and then Paul and I headed to the hospital for my 11:00 oncology appointment.

We had a good talk with the oncologist. He brought up the study that questions one of the meds I'm taking. He said he knew that less than satisfactory results have been found in the study, but he believes the study focused on breast cancer patients in general. My specific cancer (triple negative) is a particularly aggressive and tricky one to treat -- he still thinks it reasonable to use the med for my treatment. I expected this would be the attitude he would take, but I appreciated that he brought up the information first. He was forthcoming about the study and about his rationale for still using the med. Needless to say, I received the chemo today and will continue to do so as we have originally planned.

Then we talked about my visit to Dr. Kathy Miller next week. He expressed his support of having another doctor's opinion, and emphasized that it didn't bother him to have me going to visit her. It was almost like he could read my mind and knew what words I needed to hear. The power of prayer? I gotta believe to some to extent... At any rate, he even asked me to ask about her about a specific medication which is her expertise. If she thinks it is a good/reasonable med for me, then he will plan to add it to my vast cocktail of drugs. He admitted that he just wasn't sure how affective this drug is for my BC and treatment.

Finally, my doc told me specifically what information Dr. Miller would need to make a good assessment of my case, and we left the hospital with complete path reports and "slides" to take to her next Wednesday.

Our meeting today was not rushed, and was a good, open exchange. Paul was able to ask questions that he has had, and I walked away feeling really good about things. My blood counts were low again (white blood count and hemoglobin). I'll get a shot tomorrow for the white blood count, and he's asked me to start taking iron supplements while I'm on chemo. The shot is not 100% necessary, but he said he'd feel better that I have a boost while traveling next week. Better safe than sorry where an infection and subsequent hospital could happen.

After my chemo, Paul and I went back to his sister's house. She and his parents had dinner for us, Liam played more pool volleyball with Karen and Paul, and then we headed home. A long day, but a good one. During my first round of chemo last year, my parents were up to stay with the kids often. That time was good bonding time for them, as our families live 7 hours apart. The same is happening with the kids and Paul's side of the family this summer. One silver lining of cancer -- improved family relationships! You really start to talk about some of the important things of life, and you make more of an effort to be together and make the best of the time together. At least, that is what I have been finding.

Cancer complicates life, but life still goes on. We leave for my parents house on Friday morning, but we still have so many practical things to take care of before then -- tomorrow I'll call around and eventually get two new tires put on our van.... end of the month is coming, which means I'll spend time paying bills.... we have a window being replaced in the entry of our home on Thursday... Shane has an orthodontist visit on Thursday, Tyler has a follow up to his wisdom teeth surgery early Friday morning.... Paul (and someone else?) needs to run up to our cottage in Manistee before the weekend (long story)....

Life does not stop for chemo or for cancer. How much of this to-do list will be accomplished before Friday morning? All of it in some shape or form. It helps out tremendously that Shane can drive. And, I'm counting on a couple of good post-chemo days to get this all done. As much of it as possible tomorrow, just in case Thursday is a bad day for me. I will not over do, and will pace myself. I promise.

Also, this will probably be the last post for several days -- once I'm in Indiana, I doubt I'll have great Internet access. And my parents will be visiting August 8-10. Shane has his wisdom teeth removed August 8. Things may not likely slow down until after my next chemo on August 11 -- look for an update sometime between now and then. Or soon thereafter.... I think life will be on a slower, even pace by then! :-)

It Must Be Time for an Update.... :-)

I have heard from three friends this weekend (in person, via cell phone and by email) -- all three wanting to know how I am doing.... It seems I haven't been updating this blog, and people haven't seen me out and about. They're worried that means I'm not feeling well?

Actually, the good news, is that I have been feeling surprising well! I had my "big" chemo on Monday, and expected to feel badly by Friday. And, sure enough, Friday afternoon I did have some achiness in my legs, but I took Tylenol right away (which I didn't do the first time), and the pain was much, much more manageable. In fact, our family went up north this weekend and did some much needed work on the cottage. The weekend tired me out, but I was able to help with some of the light work, and felt like I was contributing. It seems that (1) my body has learned to deal with this chemo and/or (2) I've learned to treat it before it gets too far out of hand. Which ever it is, I am relieved!

In fairness to people who visit this blog, I promise to start updating it at least once a week. Whether I'm feeling good or bad. It is just kind of awkward at this point -- at the beginning of my treatment, things were changing so quickly, and the blog was a good way to keep people up to date. Now, my life is just kind of humming along, and it feels kind of vain to update this blog. It is all about me.... And, I realize that everyone reading this has something in his or her life that they could just as easily blog about. We all have something -- that is the reality of life. It is just that those of us with cancer have been give permission to be "in your face" about the ups and downs of our lives. So okay... I promise to update this blog often if you, as my friend/family, promise to share with me what you would like to blog about and why. Via email... via comments... over lunch! :-)

Here is a 60-second update on things at our house: Tyler had all 4 wisdom teeth taken out on Thursday. He is doing fine now, but had a rough weekend, and is still on squishy foods! Joan had an echo cardiogram on Thursday. This is in anticipation of chemotherapy that I'll be starting after Labor Day. According to the technician, I have a very strong heart (even though she was not supposed to tell me that!). Joan's next chemo is on Tuesday. It is a one hour chemo, BUT, we recently found an article that strongly implies that this medication has been found to be insignificant in the treatment of breast cancer. The article was published by the American Society of Clinical Oncology, so it is not a quack article. If I had had this information before starting chemo, I think it is reasonable that we might not have ever started this medication. Hundred-thousand dollar question: will my oncologist back pedal and take me off the medication now?? Joan and family are traveling to Indiana on Friday to visit with Joan's family and to see Dr. Kathy Miller @ IUPUI Med Center on Wednesday. We'll be back the following Thursday. when Shane gets his wisdom teeth taken out on August 8.

2nd Round of Chemo on Monday

Some of you know that I was sick on Thursday -- I felt fine in the morning, but by the afternoon I had no energy and was running a fever. Any fever higher than 101 is always a worry with a chemotherapy patient because it can indicate an internal infection of some kind. My fever was 100.8, so I called my oncologist and he sent me to the hospital for a complete blood count (CBC).

Two hours later, good news.... all of my blood counts came back very high! That meant no internal infection, no need for an IV-antibiotic (or a hospital stay to have this done), and no delay in my chemotherapy schedule! I was so glad to have "just a virus!" Thanks to everyone who prayed while I was waiting for the CBC results -- I am sorry to have worried you, but I definitely appreciated having friends and family close by to turn to for support!

My hopes of having my hair "just thin out" have been dashed -- essentially all of my hair is gone now. Liam (my 8 year old) was a delighted a few days ago that he could pull my hair and end up with a handful. He thought that was just the funniest thing.... I wasn't nearly as amused.

Tomorrow is my second round of chemotherapy. It is a long session -- a 4 hour chemo. Paul is not able to go down with me, but we have many friends and family supporting us: Sue andVicki are riding down to Beaumont with me, Heidi is bringing our family a meal, and Paul's parents are coming to spend the day at the house with the boys. We also have meals for our family through the next couple of weeks, until we go to Indiana to visit with my family. I cannot say how much we appreciate the love and support of so many people! Whether meals, cards, or prayers -- each is special and each provides healing.

People have been asking about my chemo schedule, so I thought I'd post the dates of the chemos that are coming up:

1. Monday, July 21: this is the 4-hour chemo (2 medications)
2. Tuesday, July 29: a 1-hour chemo (one medication)
3. Monday, August 11: a 4-hour chemo
4. Tuesday, August 19: a 1-hour chemo
5. Tuesday, September 2: a 4-hour chemo (last one)
6. Wed/Thur? Sept 10 or 11: a 1-hour chemo (last one)

My understanding is that once these chemos are finished, that I'll start another round (new medicines) about two weeks afterward.

For now, I have an idea of how this "cycle" of chemo affects me. And, I've learned that I'll not call the doctor quite so quickly -- I'll still be careful and pay attention to fevers and symptoms, but maybe let them ride out a little longer before calling the doctor. And, I'll need to be more diligent about avoiding public places that might expose me to viruses or illness. A bummer, because I enjoy being out and about. Guess God has a quieter game plan in mind?

Third Time is the Charm....

I was able to reschedule my appointment with Dr. Kathy Miller (much to her secretary's dismay) for Wednesday morning, August 6. So, that is good news.

Paul will not be able to go to the appointment with me, but, my sister Diane (who is a nurse) has agreed to go with me. And today she had the genius idea of setting up a conference call so that Paul can participate in the meeting with us on the morning of the 6th. I'm such a housewife -- something like that wouldn't have come to my mind in a million years!

This is an "off" week for my chemotherapy, so I'm feeling well. This morning I walked our dog around "the block" for the first time since my May 19 surgery. That is progress. And, the bruising and tenderness in my legs is gone. It's so weird to me how something like that just comes and goes?

Today I had lunch with some friends, and then went to JoAnn Fabrics to find material for scarves -- a lady @ the American Cancer Society suggested that to me: instead of paying top dollar for scarves marketed to cancer patients, take in a scarf size that you know will work for you, and buy material that you like. With a simple straight stitch on a sewing machine, I can make as many scarves as I like for about $5 each! My hair is thinning out, but I think I will let it thin for a little while before shaving it. It is amazing to me how many hairs I can pull loose, but at the same time how many hairs are still left on my head!? Makes me think of the verse And even the very hairs of your head are all numbered. (Matthew 10:30).

Never a Dull Moment.....

Well, the saga with Dr. Kathy Miller continues. Initially, I had an appointment set up for Wednesday, July 23. I rescheduled this to July 30 to better accommodate Paul's work schedule. But tonight, my mom talked me through the fact that the 30th is right after a chemo day for me, and she is worried that chemo and a 5-6 hour drive all in one day will make me exhausted for a meeting with Dr. Miller the next day. She's right, of course. So, Monday I'll call and see if I can reschedule for Wednesday or Thursday of the next week. That will be a "rest week" for my chemo anyway, so it will probably be better in the long run.

Yesterday (Friday) I had a small trip to the Emergency Room. I woke up Thursday morning with bruising all along my leg, between the knee and ankle. That part of my legs had been very tender because of the chemo, so I had been careful not to put any pressure on my legs there. Not even crossing my ankles when sitting in a lounge chair, or anything like that. So the bruising was a surprise/worry. Paul encouraged me to call my doctor to check on this Friday morning, and when we didn't get a call back by evening, he said I should call the doctor on-call. That doctor has never met and doesn't know my history, so he said to go to the ER for a complete blood count (CBC). He suspected a problem with my platelets because of the chemo.

I don't know if you've had experience with Midland ER, but I can't sing their praises high enough! The nurse who registered me refused to check me in as a normal patient -- "You'll be here all night," was her explanation. Instead, she arranged for me to sit in the ER quiet room, completely away from all the other people in the ER waiting area, and had the laboratory cart come to me in the waiting room.

We waited until about 8:30 p.m., at which time they hand delivered me the lab results AND my actual oncologist called me back. He apparently had been making patient phone calls all evening, and was just getting to me by about that point. I have to believe that God was in the timing of it all -- how coincidental is it to have lab results and my oncologist phone call within 2-3 minutes of each other?

At any rate, he confirmed that my platelet count was low, but not low enough to be alarming. He said he would have expected the bruising and tenderness that I had, and he apologized that his colleague had suggested the ER. I think he would have talked me through it more as a normal side affect, and not something that had to be checked immediately. I was just so happy that I didn't have to stay in the hospital for a transfusion of any kind!

And I feel sorry for my doctor for still having phone calls at 8:30 p.m. on a Friday night...

A Second Opinion for a Second Time

Paul and I are finding ourselves at another "fork in the road" related to my treatment. We both have had the nagging feeling that we need to do more... research more... for my treatment. We talked about this at lunch today, and we are moving forward.

We trust my oncologist, but we also realize he is not a breast cancer specialist; nor does he specialize in triple negative breast cancer. There are doctors in the field who are that specialized, and we're to the point where we want to see one of them. If only to confirm that the course of treatment that I am currently on is a good one for me.

Seeking a second opinion makes me feel disloyal to my current oncologist. It worries me that it will strain the relationship that we have with him, and I don't want that. But, it is reckless to ignore that doctors specialize in my specific kind of cancer. To have access to them and to not pursue them would be unbearable if my cancer progresses.

So... the name that keeps coming to mind is Dr. Kathy Miller, at the IU Med Center in Indianapolis. She has extensively written/researched triple negative breast cancer. My current oncologist actually referenced one of her studies as rationale for the chemotherapy that I am using now. And, conveniently, her office is within a couple of hours of my parent's house in Indiana.

So, after lunch I got on the internet and found the telephone number for the IU Med Center Oncology office. I asked if anyone in their office specialized in triple negative breast cancer, and I was stunned to hear her say it would be Kathy Miller and that I could set up a consultation -- I thought for sure that Dr. Miller would be "too high up" to take on new patients. But, her nurse is supposed to be calling me back to take a history and set up the next step. Every time the phone rings I have jumped at it, just like a teenager!

It boggles my mind that the potential for expert opinion on my case has been only a phone call away.... That I made the idea of calling another doctor something so "big" in my mind that I wasn't even sure how to do it. I guess in a way, this phone call was a little bit of "water walking" for me -- I wasn't sure I could do it, but God has at least made the path a straight one for me: to know about this doctor, and to have her specifically recommended to me after the first phone call -- the road does not get any straighter than that.

I'll write again once I hear back from her office and know more. Please continue to pray for direction and wisdom. I think this is a potential turning point for my treatment.

Second Chemo.... Low Blood Counts

Paul and I got up this morning at 3:40 a.m. to drive to Beaumont (I had to be there at 6:00 a.m.) to have my medi-port surgically installed. We had more waiting than we would have liked (surgery didn't actually start until 8:00 a.m.... ), but it went very well. The nurse found a vein on the first try (yea!), and the port made my chemo today much, much easier.

The chemo I got today was a "short" one -- only the medication Gemzar. The oncology nurses affectionately call Gemzar "bee sting" medication. That's because as the medication goes in through a vein (without a port), your whole arm feels sore and tense like it is being stung by a bee. That is the feeling I had last Monday as the medication went through my vein. This week, as the medication went through my medi-port, I felt nothing! (Smile, Smile, Smile)

But... my oncologist said that my white blood count and my red blood count are both way too low. If I have a fever, he has mentioned putting me in a hospital. I don't think it will come to that for me, but I know he was trying to make a point with me. He succeeded.

Today he gave me medication for the red blood count and tomorrow I have to a Neulasta shot. Not a big deal in the scheme of things; we just hadn't anticipated any shots during this stage of the chemo.

But, I recognize that I have been through an emotional and physical roller coaster in the last two months. I feel whipped, and am not surprised that my body is physically responding in a similar way. My next chemo is two weeks away -- that gives me time to Rest, Eat Well, and Rest....

First Chemo -- So Far, So Good

I had my first chemo on Monday, and today is Thursday... I have felt surprisingly good -- a little more tired than usual in the evenings, but I am able to rest at night and I wake up reasonably alert. I still anticipate losing my hair in the next couple of weeks. I think that is inevitable?

Yesterday I met Paul for lunch, and then I went to Best Buy and Meijer. That was enough for me, but it was good to be able to get out and do those things on my own strength. It helps a lot that all three boys are gone right now -- the house is nice and quiet. But, overall, I think this chemo will be reasonably manageable for the summer, and I am relieved.

After Labor Day I'll start a new regime (AC) -- two drugs that I took the first time around. We suspect those are the drugs that really knocked me out the first time around, and caused the chemo fog and other problems that I remember. With those drugs, I will definitely need more rest, but by then the boys will be back in school all day. I'll have the house to myself. As much as I hate the schedule, I guess God's timing is working out.

On Monday, I'll have my medi-port installed. This is a short surgery, only about 20 minutes? It takes longer to be prepped and to recover than to actually do the surgery! My oncologist moved my Tuesday to chemo to Monday -- I can have the medi-port put in and receive the chemo in one trip. Paul is most likely not able to go with me to this appointment. We are going to try to work it out that his parents or sister can help me -- I'll have to be at the hospital around 6:00 am, and will need a driver since I'll be sedated. His family is great, so I know this will work out one way or the other.

One lingering concern... My surgery is now 6 weeks past, and I still have an open wound that will not heal. It is just being stubborn. My doctor is watching it, but the more time that passes the more of a concern it is. Chemo slows down any healing process as well, so that adds to the issue.

Paul is golfing this morning, and this is my last day without the boys. I'm going to work on my scrapbooking -- try to find the top of my desk so it is easy to pop downstairs and do a page now and then! Tonight we are going to go out -- I'm feeling good, and we haven't had the kids all three gone in a very long time. Take care, and have a blessed 4th of July weekend!

Chemo, Chemo and More Chemo...

Well, I understand now why my oncologist didn't want to review a chemotherapy schedule with me over the phone on Friday -- the regime he has me on is very aggressive and very long.

We talked about this "new" cancer before we talked about chemo options. We all are pretty much in agreement that this cancer was in the breast (but undetected) the first time that I had treatment. We had theorized this on our own, but the Harvard pathologist said the "new" cancer showed signs of previous systematic treatment (chemotherapy/radiation), and this led him to believe it could have been there two years ago.

Mammograms and MRIs are NOT perfect...

The size of my cancer keeps growing -- thankfully it is out of my body and now just a discussion on path reports.... When the cancer was first found in April, they said it was "nothing" -- precancer, Stage 0. After my surgery, the surgeon said they found "about" a 1 cm amount of real cancer. She and I were both stunned. This report didn't satisfy my oncologist -- he had it sent back within his hospital path department for a second review, who concluded "about" 2 cm. Finally, it went to Harvard, who said the exact amount could be "anywhere around" 2-4 cm. At some point, all this discussion becomes academic. The bottom line is that this cancer has to be treated (chemo), and it has to be hit fast and hard!

So... we discussed chemo options. A brand new drug, specific for triple negatives, has come out in the last year (Ixempra). It shows promise, but it is not "proven" enough in my oncologists mind and he was hesitant to use it. Had I stayed at the 1 cm size for the cancer, he said he probably would have gone ahead with the new drug. Given what we know about the size of my cancer, and that my previous cancer had a "partial" response (sounds bad, but its actually a good thing) to the previous chemo regime, he recommended repeating what I had done a couple of years ago. With some tweaking.

So... I will get 4 doses of two drugs (Taxol and Gemzar) every 3 weeks. In between doses, I'll get a single dose of just Gemzar. After these drugs are finished (around Labor Day weekend), I'll start a second combination of drugs (Adriamycian and Cytoxan) that will be given 3-4 times every 2 weeks. This will end sometime mid-October.

So... yesterday, I had my first treatment of Taxol/Gemzar. It has to be given through an IV in my arm, since my "medi-port" was removed in November. Unfortunately, we have decided that I should have a port put in again (this makes given the chemo drugs sooo much easier) because my veins are so hard to find (it took them half-an-hour), and because two of the drugs (Gemzar and Adriamycian) are so hard on my veins. The tough part will be keeping my white blood counts high enough for me to get through a surgery.

This sounds complicated, but it is amazingly "normal" to me. I've been living cancer in some fashion for almost the last two years. What bugs me about the treatments is how much TIME they rob from my life. And there is no eloquent way to say that it really stinks that I'll lose my hair again! And, I hate not being at work -- I really enjoy my job at the library. I could possibly work on my "good" days, but I don't know how reliable I'll be during chemo and I also don't want to be exposed to every patron's potential virus or illness. I need to be focused on getting better. It will take a lot of time already -- making myself sicker in the process is just detrimental in the long run.

So, it looks like my life (and my family's life) is a little more on hold again. It will be different this time around... Shane is driving, so that will be helpful. Some of the treatment can be done in Midland instead of only at Royal Oak, so that helps. And, until the kids are back in school, we have some flexibility in our schedule with them. We have more options for leaving the older boys at home and finding friends for Liam is not a problem. Having meals again would be helpful, like we did last time. I'll add some information on my webpage about that.

Neither Paul nor I understand this at all. I've kept up with some of breast cancer histories, so I know that I'm not really that unusual to have a recurrence and that I'm lucky it didn't come somewhere like bone, liver or lungs. In all practical terms, it didn't really come back -- it was just never taken away. We just both thought we were moving on, and now this brings life back to an almost-screeching halt again. He is really feeling the brunt of it all -- it is manageable to support a person through a first round of cancer, but then when it's over you are so relieved. To have it come back again is just overwhelming. For me, as the patient, all of my responsibilities have essentially stopped. For him, as the main parent, all of his responsibilities are just that much more critical. If you say prayers for me, please always remember a couple for him, too...