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!

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...

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.

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.)

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.

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.