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.

The 3-day walk is legendary.... I've seen books dedicated to the race, and have read only encouraging, inspiring things about it.

Today I received an email from Brandi which ended with the following: Just to let you know, my walk team is having t-shirts made up and on one of the days for the walk we will wear them. They will say "I am walking for her - Joan Grady"....

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.

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:

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.... :-)

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!

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.


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.)

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.