Monday, January 30, 2012

11/15/10 – 02/02/11: The Process Begins

It has taken me a long time to find the courage to sit down and write about the “dash” between the above dates.  Before it began, I thought I would write periodically about the hoops I was jumping through during the transplant.  However, I could never bring myself to start recording the difficult process.  Now, I am ready . . .

Chemo at the U of W
From November 15 through November 19, I underwent around the clock chemotherapy at the University of Washington Medical Center.  It was frightening, but I got through it pretty well.  I had one day of terrible acid reflux, but no nausea or vomiting.  On about the third day, I woke up feeling like a beached whale from all the fluids they were pumping into me.  My entire body was bloated and I gained at least 10 or 12 pounds, maybe more.  On November 20, I was released and we went to our apartment.  


With my immune system dropping, I had daily clinic visits and blood draws and they began giving me neupogen shots in my stomach each day to mobilize my stem cells.  Fortunately, the shots were not painful and I didn’t mind them at all.  I asked one of the nurses how many days it would take to mobilize and she said it averaged about ten days.  My cells were in a hurry!  They began harvesting my stem cells (apheresis) on the sixth day.  It was a four hour process each day for two days.  They drew blood from one side my Hickman line and put it through a centrifuge and collected the stem cells before returning the blood back through the other side of the Hickman line. After the two days, they had collected over 10 million cells (yes, 10 million!) which was enough for two transplants.  It was a painless process.  

No Hair / Beautiful Hats
My hair started to fall out around this time and when that happened, I went into the bathroom and shaved my head with the help of my husband, Brent.  It wasn’t too upsetting and we even had a few laughs about what we were doing.   I was surprised at myself for accepting it so easily.   A dear friend had gone through breast cancer and hair loss and she advised me to shave it off when it started to fall out and I think that was very good advice.  Instead of dealing with my hair falling out over several days, I got it over with in a few minutes.

I do admit that I got very tired of my bald head and it seemed to take forever for my hair to grow back.  However, I have a lifelong family friend who is an expert knitter and she made me several very beautiful hats.  One was made of purple angora!  I was stylin' in my hats!

Sunday, January 29, 2012

Good News and Not so Good News

Good news:  The breast biopsy was benign and I smoked the treadmill test!  My cardiologist and his assistant were amazed at how well I did.  I scored 30% higher than active people and 50% higher than inactive people.

My data review conference  with my doctor at  Seattle Cancer Care Alliance (SCCA) went well and I am in pretty good shape after tons of tests  He started by saying that the goal was to get me into long-term remission and I liked hearing that. The only news that wasn’t so good was the bone marrow biopsy showed 20% plasma cells which is higher than they like for beginning a transplant.  This is partly due to not having chemo for the last few weeks.  My doctor said they will give me very strong chemotherapy, which will involve a combination of drugs, to beat the plasma cells back down.  I enter the University of Washington Medical Center on Monday morning to begin four days (96 hours) of round the clock chemotherapy.   I am NOT looking forward to that.

We have our apartment at Pete Gross House, which is housing for SCCA, and will be moving in today.  We are on the top floor with a stunning panoramic view of Lake Union.  The apartment is small but cozy. I have always dreamed of living in downtown Seattle, but living there for this reason was never part of the dream!  This morning while drinking coffee and reading the paper in our family room, I felt quite sad and tearful to think I would be leaving home today and not be back for about three months except to visit for a day or two.  I am just sick about leaving my beautiful cat and loyal nurse, Lily.

Although there is no certainty about what lies ahead, people live with the hope that all will go well for them. It is impossible to fulfill our life when we are utterly discouraged. But if we manage to keep our hopes in the future alive, we will be able to overcome all sorts of difficulties and go on living.
 – Dalai Lama       

Friday, January 27, 2012

The Tests Have Ended…For Now

It has been a long three weeks of driving to Seattle each day for blood draws, tests, x-rays, MRIs and just about every other kind of test.  I was very worried about having an MRI after my nightmare experience in the hospital last January.  I do realize that my mind was affected by pain killers at the time.  However, the thought of having another one and hearing all the crazy loud noises was unsettling, but  I have learned that having an MRI with a clear mind is not so bad.  

I have had two setbacks during all of this. The first was a heart sonogram that showed that I had a thickening of the wall of one chamber of my heart.  This sent me to see a University of Washington cardiologist.  What a brilliant doctor!  He said my condition could be genetic or it could be caused by the cancer giving off proteins that were building up in the heart.  After a heart MRI complete with headphones and Mozart, the diagnosis was hypertrophic cardiomyopathy and it is genetic.  It was very good news that it wasn’t caused by the cancer.  As I write this, I have on a 24 hour heart monitor and will see the doctor again on Friday and have a stress test.  He has been in consultation with my team doctors because they need to know exactly everything about my heart.  I am sure they don't want any surprises.

My second setback was needing a breast biopsy.  This nearly sent me into a tailspin.  After my mammogram, I knew there was some calcification and that they were going to request my records from  my local clinic.  When I didn’t hear any more, I thought everything was fine.  Monday evening I had a call from my team PA to say I needed a breast biopsy.    The delay was caused by the clinic sending my last CT scan instead of my last mammogram.  It had to be reordered and, thus, the delay.  I was very upset about this and had a minor meltdown. Yesterday, I had the biopsy.  They don’t really think it is anything, but they have to know for sure.  I don’t have the results, yet.  It has really felt like my physical body is at war with my soul lately.

My Hickman Line was placed today. It is a central line that has two lines hanging out of the chest and it will be used throughout the transplant process for blood draws, chemo infusions, and harvesting  and transplanting the stem cells.  I broke down when the sedation nurse was explaining it. This is the first time I have shed a tear, except at home, since this all began last January.  I have dreaded having this Hickman Line and seeing it every day dangling from my chest. Not only will it be an ugly sight, it will be a complete reality check and reminder of the gravity of my situation.  It was just too much for me today after my setbacks.  The nurse was wonderfully supportive and the doctor was compassionate and empathetic.   With their expert care, I got through it pretty well.

I will enter the University of Washington Medical Center  on Monday and begin the chemo…………

Thursday, January 26, 2012

And it Begins . . .

“Today is the first day of the rest of your life.”  How many times have we heard that somewhat worn out cliché?  Well, today it takes on a significant meaning for me. Today is my first appointment as I begin the stem cell transplant process – a process that may take until the end of January. This transplant  may well be the determining factor in how long the “rest of my life” is. I hope for success and a chance to return to some kind of normalcy in my life for a few years. I am nervous and frightened about all that I will go through during this process. I am comforted in knowing that many, many people have gone before me and done well. I hope to be one of those people someday.

Wednesday, January 25, 2012

Flaming Hoops

When I was WA State President of Alpha Delta Kappa, International Honorary Organization for Women Educators, a friend and past state president gave me a bit of very good advice that I have passed on many times.  She told me that it was important to focus on one step at a time instead of always looking at the whole picture.  She told me that you can only do one thing at a time and she was so right.  It can be overwhelming when you look at all that needs to be done, but just looking at what needs to be done right now and doing it is not so overwhelming.  

A stem cell transplant is a daunting procedure.  I will follow my friend’s advice as I navigate through it.  A few days ago, I began thinking of the process as jumping through hoops and I can visualize a long line hoops stretching out before me.  I know that some of the hoops are going to be flaming, but not all of them will be like that.  I also know that the flaming hoops will not last through the whole procedure.  Once I have made it through a flaming hoop and the misery that will go with it, I will move on and I can hope that the next hoop might not be on fire.

I feel like my physical body is at war 
with my soul.

I have thought about writing about my multiple myeloma diagnosis for quite some time, but didn’t know where to start.  In fact, many times when I thought about it, I wondered, “Do I really want to start?”  Then I would be compelled to face the situation squarely and accept it.  I think I have accepted it now and I realize that it is my new reality and my life will never be the same.  My life as I knew it is gone and a new one is taking shape……I don’t like it but it is the truth and it is somewhat of a relief to be at this point.

This morning in the shower, I thought about how surreal this all is.  It is hard to think of your own body working against you. That is when this thought crossed my mind:  I feel like my physical body is at war with my soul.  I think this sums up how I feel about this terrible disease.

I feel fortunate that I was able to get through about four months of chemo with few side effects and feeling pretty well most of the time.  I do have my days when I don’t feel well and I can get really tired. My oncologist calls them my “splat” days – a perfect term to describe how I feel on those days.

On October 19, I will begin the stem cell transplant process at Seattle Cancer Care Alliance (Fred Hutchinson Cancer Research Center/University of Washington Medical Center/Children’s Hospital).  It is a daunting procedure and one that will require us to live in Seattle near the clinic from about Nov. 1 to the end of January.  This is usually my favorite time of year with Halloween, Thanksgiving and Christmas.  I love decorating for all the holidays and I like our house best at this time.  It is hard to think of spending the holidays away from home, especially since I have usually been the one to cook Thanksgiving dinner and do Christmas gatherings.  I guess in the scheme of life those things are not very important right now.  I have high risk myeloma and I don’t have a choice but to do the transplant.  I would have no future without it.  Even with it, I won’t be cured but it should gain me some time.  

The doctors have suggested the possibility of doing a second transplant from a donor after the autologous transplant using my own stem cells.  The donor transplant is riskier, but shows some promise for better results and maybe even a cure.  I really can’t believe I am talking about myself ………….I pray for courage and strength to get through this.