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. :)

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.

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?

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

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...

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

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!

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....

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....