Saturday, February 28, 2009

Day 2

Day-13 Health Score 80

The collection yesterday harvested about 1.1 million stem cells. Their goal is 5 million. I was on the machine again today for 4 hours and will have another collection tomorrow. Hopefully the last. It did give me a chance to re-read one of my favorite books, "The Ministry of Fear" by Graham Greene. It is a great psychological thriller. Graham Greene also wrote the screenplay for "The Third Man", a 'must see' post world war II thriller with Joseph Cotton and Orson Welles.
I am always impressed by writers that have the narrative ability to paint a scene or a mood that makes you feel like you are actually there. You can really feel the surreal grittiness of war-torn London during the Blitzkrieg with the same uncertainty that the author must have felt with no knowledge of how the war would end. Writing a story, not knowing how it will end, lends it a certain aire of authenticity.

It will be good to go home tomorrow.


Friday, February 27, 2009

Collection day

I arrived Wednesday night around 8:30 pm.  Kevin and I were glad to see each other, but walking into another Residence Inn brought back a flood of memories.  We stayed at the Residence Inn in Rochester and the Residence Inn in Santa Clara.  Not all the good memories came back, those ones are always with me.  But the ones you put way back in your mind; the ones you prefer to forget.  Yesterday was a harder day for me.  To be in the hotel again and think about what is to come.  I felt much better after giving myself a little time to process the next few months.  I enjoyed our walk in the sequoias and today while waiting for Kevin's room we walked around the Stanford campus.  They have a beautiful collection of Rodin in an outside courtyard and a gorgeous campus.  Around 2 pm the room was ready and after some time, Kevin was hooked up and ready for collection. 

While he read and napped I worked on my term paper for organic chemistry.  It seems appropriate that my topic is "Amyloidosis - the misfolded protein with heart involvement."  It's kind of strange for Kevin and I to discuss it as a disease not related to us personally.  And then we stop and are aware again of the closeness of it all.  

I arrived in the hotel room tonight and will be here again tomorrow night.  Just as I was leaving Kevin's room the nurse came in and stated that not enough stem cells were collected so they will be collecting again tomorrow.  Hopefully we will be able to leave Sunday morning.  

My bedtime reading tonight: Autogolous Blood and Marrow Transplant Guidebook.  



Day -14 Health Score 82
Today I underwent my 1st apheresis. This is a process by which my stem cells are removed from my blood and then frozen. They will be given back to me on March 13 after my bone marrow has been wiped out. The goal is to harvest at least 2,000,000 cells. I am not sure exactly how the machine does this, but I imagine it is like when you put your loose change into a coin sorter; as it spins the coins drop according to their size. Whole blood is pumped out of me through one of the ports of my Hickman catheter. The machine then runs it through a centrifuge which separates the cells by size and collects just the stem cells. The remaining blood is is then returned through the other port. Because I have amyloidosis, it is their protocol to also monitor my heart because of potential fluid shifts that would stress the heart. (although, with a heart transplant, that risk is low).
As the nurse began today, I sensed that they were having some trouble with the machine. The one nurse kept saying, "The interface is labile." This sounded more like something you would hear on Star Trek as Scotty calls up to the bridge exclaiming, "Captain, we can't hold on much longer; the interface is labile!!" I assume is was nothing as the next fourhours of collection were uneventful. Soon they will let us know the count to see if another collection tomorrow is necessary.

Thursday, February 26, 2009


Day -15 Health Score 85

The sequoia is the largest tree in the world. California is home to a number of sequoia groves. Most of the remaining groves are in the Sierras. For years uncontrolled deforestation annihilated most of the coastal groves. However, a few remain. I grew up in Marin County, just north of San Francisco. There is a grove of sequoia nestled into the north slope of Mt Tamalpais not far from Stinson Beach. Muir Woods is named after the naturalist, John Muir, and aptly so. He spent his life to preserve the natural beauties of California. As a child and young adult, I would return again and again to the majesty of Muir Woods; trees, 2000 years old, wider than a Chevy Suburban, lined the needle strewn path. It seemed as if these gargantuan sentinels quietly observed as 2 millenia of human history passed beneath them.

I have previously mentioned my affinity for trees. I have always avoided cutting them down (I refer to the ones in our yard). However, at times, this is necessary. They become diseased, overgrown, or present a danger to the house or power lines. But I have probably planted more than I have hewn. However, the deciding factor on the location of the lot we chose to build our house was the view of the natural oaks present there. In Connecticut, I had grown accustomed to the view of the forest from the kitchen window, every morning, as I ate my Lucky Charms.

Today, feeling the need to escape the hotel again, we headed for Big Basin State Park. Prior to today, I had never heard of it. Like Muir Woods, it is a grove of old world sequoia, hidden and spared. It is in the Santa Cruz mountain range, just west of Saratoga. One again I stood in awe of the immensity and longevity of these symbols of life. Sequoia are adapted to thrive through adversity. Storms make their roots stronger; fire is an essential part of their life cycle. Fire both clears the underbrush while allowing more light to reach their branches. Many sequoia survive multiple fires in their lifetime. The scars of the fire remain, but they continue to grow. Aren't we the same. Challenges in our lives unclutter and unencumber us from the banalities of daily living while enlightening us through greater clarity and acceptance of those things that really do matter. The memories remain, but not the pain.

Fire also promotes new growth of sequoia offspring. It is common to see a circle or ring of sequoia around an empty space where a giant sequoia used to stand and is now dead. Its death allowing new trees to grow in its place. They forever circle the spot, and almost enshrine it, in quiet reverence to their fallen progenitor. Reminding us that some must die to allow others to live.
I know that my heart donors family has planted a sequoia tree to honor his memory. Soon I will go and visit this tree, also to reverence the life he gave so that I could live.


Wednesday, February 25, 2009


Day -16 Health Score 79
Today was a little tougher. I don't know if it is the Neupogen; I don't think so. I am just quite fatigued. I also think I'm down because I spent the day alone. However, I just spoke to Barbie and she is going to battle the rain and drive down here tonight. She feels good about her test but said that it was very hard. Our communication has become quite organic. For people that don't drink, we talk incessantly about alcohols.
I also am beginning long-term disability, hence the need for much paperwork and many phone calls. But I can't complain; Kaiser has been very good to me. To distract myself, I drove to Half Moon Bay today (a beach town about 25 miles from Mountain View) to ambulate on the beach (Doctors never use a one syllable word when a three or four-syllable will suffice). The waves were massive and I knew they would be great for boogey-boarding, but it is cold and I can't get my Hickman catheter wet.
I feel better this evening, probably because I will soon see my sweetheart.


Amyloidosis Video

The following is a video produced by the Amyloidosis Foundation. It is meant to increase awareness of the disease.

Amyloidosis Awareness from Cartoon Medicine on Vimeo.


Tuesday, February 24, 2009

Study and sleep and, oh yes, eat.

Tomorrow is my second Organic Chemistry exam.  I have been crazily studying all day except for the time I spent with Kevin for lunch, a surprise since I didn't think he would be done so soon today.  I feel ready - we'll see.  I felt a little sad when he left Monday morning and I couldn't go with him to his first day of the treatment process.  Fortunately, his mom was available to be with him since the sedation would prevent him from driving.  He is alone now but I will join him tomorrow after my exam.  It's not until the afternoon so I will get there as soon as I can.  

As much as I could do without all the necessary studying, I really am enjoying all that I am learning in O-Chem.  The class is so time consuming that my Nutrition class seems so easy.   I do count down the weeks when my time can be more focused on Kevin, and my children (even married ones) and my house (it's getting a little disorganized).   Oh, well.  A few piles never hurt anyone, right?


Day -17 Health Score 81
Last night I was very tired from the drugs and my neck was very sore, especially over the site where the Hickman catheter is tunneled under the skin. However, today it is much improved. It does not hurt to turn my neck. Of course, the advantage is that my frequent blood samples can be taken directly from the catheter. I drove my mom home this morning. I the had lunch with Barbie and drove back. I was feeling a bit pensive, so I went to the beach in Pacifica to watch the sunset. I love the sound of waves crashing on the beach. It made for a pleasant evening.


Monday, February 23, 2009

Straight for the jugular

Day -18 Health Score 83
Every institution has its own style. University hospitals move at a certain pace because of their size and hierarchical complexity. Private hospitals tend to market their flexibility and efficiency. Kaiser has superior integration and collegiality. The VA moves by the weight of it own inertia carrying a gravitational field relative to the behemoth that it is. The Mayo Clinic is unique in its ability to fast track a diagnostic work up while greeting you with a sport coat, tie and smile at every visit. What is not unique is the caliber of physicians and nurses at each of these institutions. There are great doctors everywhere (just as there are those with poor bed-side manners equally distributed) One should not judge the quality of medical care by how long you wait or whether the front desk just sees you as another warm body.
We waited a lot today. But that's OK.
I picked up my mom at 4:00 AM to drive to Stanford.
I received my first Neupogen shot this morning and then went to the ATP (Ambulatory Treatment and Procedures) Once finally in the fluoroscopy room, the nurse asked what style of music I wanted. He programmed Coldplay into Then he gave me some wonderful chemicals Fentanyl and Versed. I felt just fine as they tunneled the 12 French Hickman catheter over my right clavicle and into the internal jugular vein. The doctor had a little trouble getting into the inferior vena cava due to the distortion of the anatomy where my donated heart is connected to my native IVC. But, alas, the 0.035 angled glide wire with the 'magic' Terumo tip one again saves the day. (This is what I rely on to get past obstructed stones in the ureter). Also, I am so happy when MD's buffer their lidocaine with sodium bicarb. It doesn't burn so much. Now I have this catheter hanging out of me for the next few months (Banned from the hot tub).

I am staying at yet another Residence Inn here in Mountain View. They have experience with BMT patients and their strict precautions. Overall, today went fine; I am just left with a sore stiff neck. (No longer hard-hearted, now just stiff-necked).


Friday, February 20, 2009

Moving Forward

Day -20 Health Score 86

Today I met with Dr Arai one final time before starting stem cell stimulation. This was to review all of the results from the re-staging process. Everything looks fine, so we will proceed on Monday. I also saw a specialist from infectious disease who will assist in the effort to avoid or treat infections. They take everything seriously. I mentioned the mild congestion that I have, which is common this time of year which then led to a nasal swab to rule out a viral upper respiratory infection. I am not complaining. I fully support their vigilance. The 300 mile drive (round trip), however, is wearing me out. Time for bed.


Thursday, February 19, 2009

Be Patient

Day -22 Health Score 87

I had decided to do daily entries on the days that I am receiving treatment and preparing for the stem cell transplant. I believe you get a more honest sense of what is happening if it is not filtered through the 'retrospectoscope'. Day 0 is March 13th, the day I get the transplant. I feel this might help someone going through the same process to know what to expect. The health score is how I am feeling on any given day (physically, emotionally etc...) This is quite subjective. The scale is from 1 - 100 with 1 being dead and 100 signifying perfect health. For instance, if I were severely nauseated and unable to eat, but could still get around, drive and function; that would be 50-60
If I were in bed, unmotivated to do anything, with no energy; that would be 40-50. (However, one must subtract 8 points for unbridled optimism). If I were able to boogy board, bicycle 100 km, backpack 8 miles or do a ureteroscopic Holmium laser lithotripsy, that would put me at 100. So 87 is pretty good.

The day began well as I drove down Sierra College Blvd on my 150 mile trip to Stanford. As I looked eastward over the town of Loomis, the sun was just coming over the Sierras, the broken clouds being illuminated with a myriad of colors: multiple shades of grey, blue, peach and pink. The cherry blossoms adding a responding cloud of pink from below. It felt like a glorious Spring morning right after rain. Californians take Spring for granted. A Spring day can occur here any time of the year. In Connecticut, Spring doesn't arrive until May, making it highly anticipated. The trees and ground cover are bare in New England from November through April. The green is replaced by gray, black and brown. People flock to New England to see the colors of Fall; which are spectacular. But few outsiders realize that the colors of Spring are equally vibrant and diverse; and much more appreciated. They signify the new life arising after months of dreariness. Becoming well, after months (or year) of illness, is similar to the feeling that Spring gives; a new beginning, a new hope.

Then I arrived at Stanford and became the patient. First I went to the BMT unit on E1 in the main hospital to sign all of my consents. Informed consent is the process where all of the possible bad things that can happen are explained in detail. Everyone signs, assuming it won't happen to them. And then some patients are shocked and angry when bad things do occur. Complications don't bother me as long as I know that they are expected and I can overcome them. I repeat my mantra to myself 'prepare for the worst, hope for the best'. With BMT nausea, fatigue, hair loss and painful mouth sores are common. The most feared complication is infection which can be fatal. Many precautions are taken to prevent infections.

I then went to a class for training on the care of the Hickman Catheter that will be placed on Monday. My appointment was for 2:00 PM. At 3:00 I asked the receptionist what the delay was and he said that they were very busy and that no rooms were available. At 3:15 the assistant took me in the back hallway to get my vital signs (for a class?) and had me watch a video. I asked if she was going to put me in a room and she said it was being cleaned. The nurse came to begin teaching at 3:45. I asked if we were going to a room for teaching and she informed me (with some irony, I thought) that someone else had taken the room. I share this because I know that thousands of patients experience this every day. Some days things don't go as planned; that's why we're called patients.

When some serious surgical mishap is investigated, often the root cause is a series of simultaneous mistakes. The system is built with enough backup to handle two maybe three simultaneous mistakes, but on the rare occasion that 4 or 5 occur, there is a bad outcome. The opposite can also occur. Four or five fortuitous events can simultaneously occur causing an equally rare but beneficial outcome. The benefit to me being the recipient of a healthy new heart. (The odds were stacked against me). Therefore, I will be patient and not complain about minor bumps in the road. Getting angry only hurts oneself. All concern left me as I drove home to witness an equally beautiful California sunset and was reminded that every new day is a new day to get it right.


Wednesday, February 18, 2009

laugh out loud

O.K. so now I am a little shy at all the attention I got from my last entry.  Never meant to sound so deep, but sometimes it just comes out.  Thank you for the good wishes, the uplifting comments and the joke.  (Keep them coming, Brian!).  They make me smile and lol.  I used to think that meant 'lots of love' when I first started texting my girls.  They could never figure out why I was lol'ing' at the end of every entry.  We had a good laugh when they told me that it meant 'laugh out loud'.  The only joke I know and sometimes mess up is the one I learned when I was pregnant with Jeremy and Samuel.  It goes like this.  

What did the mexican fireman name his twin boys?  

Jose and Hose B.  

I bet you wonder how I could mess that up, but I do.  

We're gearing up emotionally and logistically for next week.  It's all going to be fine.  My next exam in Organic Chem is one week away.  Ugh...there is so much to remember!!!
I felt a little guilty last night that I wasn't going with Kevin today to Stanford for an appointment and Hickman Catheter care class  I only felt guilty until I stepped into Nutrition and Chem and quickly moved into student mode where the outside world shuts off for the day.  Monday Kevin will leave on his own for Stanford and I will join him on Wednesday night or Thurs morning.  He'll be in a hotel during the Neupogen in Apheresis stage (monday - friday) and then he will be admitted on Friday night for stem cell collection. 

Kevin keeps me going...there isn't anything he doesn't think I can do.  


Monday, February 16, 2009

Six Months

August 16, 2008
Valentines Day, February 14, 2009

Today marks six months since I received an new heart and a new life. Fittingly, my favorite candy bar is Rocky Road and there clearly have been a few bumps along this path, but overall, I feel wonderful. When the decision was made a few weeks ago to proceed with the stem cell transplant, I knew that there would be much to do to prepare for this new challenge. Tests, blood-work, education, logistical planning for Barbie and Caitlin and getting myself psychologically prepared. After considering this daunting task, I exclaimed to the family, "We're going to Disneyland". Since I will be down for at least the next three months, I figured there is no time better than the present.

Caitlin, Rebecca, Barbie and I drove down on Thursday and stayed at the Hilton Suites in Anaheim (I love to Priceline; we got a great deal) We had a wonderful time. It did rain on Friday, but cleared by Friday evening. Everyone was cold and tired by 4:00 PM so we went back to the hotel. I kept saying that I was going to go back to Disneyland that night, but they all thought that I was joking. I assumed they knew I was going back after I dropped them off after dinner, but they just thought I was slow getting back to the room. After looking for me for 45 minutes, a very concerned Barbie tried to call me, but I was on the Indiana Jones ride and couldn't hear a thing. Finally, I got the message and called to reassure her that I was alright.

Saturday, Valentines Day, the weather was clear and we took it a little slower. I did, however, go on California Screamin' three times. (A seriously awesome roller coaster). Not having nerves to my transplant has the advantage that by the time my heart realized that it was moving upside-down at 60 MPH, the ride was over. My heart-rate never went up.

I am not done making memories. There is so much left to learn. The last six months has taught me things that I could not have learned any other way. While I was on the ride called 'Soarin' Over California' a flood of memories came over me in a wash of emotion as I realized that I have been every place depicted on the screen. Whether it be backpacking through Yosemite as a Boy Scout or surfing in La Jolla during medical school, I have a lifetime of vivid memories that I can checkout, like a favorite book from the library, and re-experience the joy anew.

This weekend reminded me of the three words that continuously weave themselves through my consciousness: Gratitude, Hope and Joy. Gratitude for gifts and experiences of my past that have shaped whom I have become, hope for the future that lies ahead and joy in the beauty that surrounds and fills me in every moment.


Thursday, February 12, 2009

My Sweetheart

Barbie has been a real sweetheart this week. The heart part being that Valentines Day is Saturday and sweet because she is up to her ears in organic chemistry studying sugars. Ask her about glucose, she can tell you everything you want to know. However, she was disappointed to learn that the consumption of a 'reducing' sugar does not promote weight loss. For homework we have been sampling different compounds containing sucrose and theobromine. Her favorites are Ghiradelli semi-sweet chocolate and See's Candy dark chocolate walnuts. Hmm, I wonder what I should get her for Valentines Day?
Today we will drive down to LA to go to Disneyland. We need to get away while we can. I am ready for The Tower of Terror and Space Mountain. It was clear that we need to do this now as next week we begin the marathon. Soon I will be the tower of nausea and space mountain will indicate the vacant lot on my scalp ready for hair to move back in.
Generally, I feel great. On a scale from 1-100, where 100 is completely healthy and 1 is dead, I am running between 73 and 84 this week. (This is good, as the 2nd day after velcade and decadron I am usually a 52.)
I have had numerous labs and studies in preparation for the BMT. Overall, things look good. Even though my circulating kappa light chain levels are still high. The light chain level and protein in the urine has dropped significantly. In addition, the degree of plasma cells and specifically amyloid deposits in my bone marrow has improved. The velcade and decadron must have done some good.
My heart continues beat regularly reminding me every moment how grateful I am for more moments.

Happy Valentines Day; may your heart be full of love and joy.


Friday, February 6, 2009

Where Have I Been?

I know it has been forever since I have written and for my own personal reasons I kept most of my feelings to myself.  My sister-in law, Darlene told me once that when things get really hard to write a letter to myself and then destroy it.  I wrote privately for awhile, but I have not destroyed them yet.  I feel that my private writings will help me later somehow.  I wrote privately for myself mainly because i was embarrassed and tired of complaining openly to the blogging world. 

I am going to be open now of what has been happening here and in my perspective.   
I'll start with Rebecca first.  Just after Christmas Rebecca's new husband, Corey decided that mormon life and married life was not for him.  It was only a few weeks later that we moved Rebecca home and realized the marriage was over.  We will never know exactly what happened in his heart, but we do know that Rebecca did all she could to try and save the marriage.  Corey has made a decision and in his heart I believe he feels he is doing right for Rebecca.  For the few weeks of early January we watched Rebecca torn; she was still in love with him and hoped he would change his mind, while other moments she was angry at what he did to her.   As time went by her heart healed and she wished as we did that he would find happiness in his life.  Some days I miss him, but mostly I wonder why. She is strong now and happy and will be heading back to BYU for Spring term to continue her degree in Advertising.  We have loved having her back home with us.  She brings laughter and playfulness to our home.  Caitlin is also enjoying having her sister around.  

Now, about Kevin.  He is my love and will always be.  Does this mean I am good at being a sensitive and loving caregiver?  No.  I am good some of the time and other times my selfishness comes through and I am tired of him being sick.  I miss the easier life we seemed to have, but am grateful for the outcome of every trial that has come our way this year.  Without the love and knowledge of God, I would not be so calm.  I look forward to him going back to work.  Not because I want him out of the house, but because it will be good for him and will give us both the sense of normalcy again.  I am truly scared of what is ahead with the SCT, more so than the heart transplant.  My fears have little to do with it being successful, but my ability to care for him in all that is required.  I must sterilize his water.  Make everything from scratch.  Keep him away from public places.  Drive him everywhere.  He will be on a Microbial diet because of his immunosuppressive drugs.  This means he also can't have fresh fruits, vegetables, deli meats, open breads, yogurt and many other specifics.  He is not allowed in the kitchen or allowed to clean in any way.  And all this will be in a hotel again in Stanford.  I know, it sounds like I am complaining again.  Sorry.  I'm just stating facts.  With Rebecca home until March, she will be able to help out at home with Caitlin.  Once she heads back, we'll figure things out again.  

Now about me. I have started taking prerequisites for Dental Hygiene school.  I am taking Organic Chemistry and Nutrition.  It has been a good distraction, but also extremely time consuming.  I have classes all day M&W.  I know that when the SCT process starts in a couple of weeks it will be hard to keep up with classes and if I fail, I fail and can repeat them.  If I need to drop, I will drop them.  We are grateful and will call upon family and friends who have offered to help when he needs 24hr. care in the hotel and I am in class.  Some may wonder why I would even think to start these classes now and not wait until things were easier.  As Kevin puts it, "things may never get that much easier" and honestly we both felt it was the right thing to do.  He knows me and I know me better than anyone.  

My way of coping now in my life is to work through today and plan for tomorrow, not the "future" tomorrow, but just the next day tomorrow.   
I am happy, healthy, love learning about carbons, (REALLY...)and I might add, tired.  But because of my faith in God, I know that only he can carry my burden and make it light.


Wednesday, February 4, 2009

Marrow to my bones

Hematopoiesis (click to enlarge)
Idea: Kill bad plasma cells downstream and replace with good stem cells (new plasma cells will be good ones)

I received the schedule for the stem cell transplant. I begin stem cell stimulation on February 23 and the apheresis or harvesting will take place on February 28th. I will then have a week off, (fortunately when Caitlin is off from school as well) and receive the conditioning with Melphalan on March 10 and 11th. March 12th is when Barbie, Caitlin and Rebecca will go to San Francisco to see Wicked. March 13th is the day that my new bone marrow will be born. Which is fitting as that is Samuel and Jeremy's birthday. The pattern must continue since the anniversary of my new heart is the day Samuel and Michelle got married.

Today was my last dose of Velcade and Decadron ( and I hope last means last.) I also had a bone marrow biopsy by Dr Sardar, with Laura, his MA, assisting. This one was even less painful than the last two because 'Phil's good'. Tomorrow I will do a skeletal survey, which does not refer to the mapping of a cemetery. All of this is in preparation for the transplant.

Preparation for all of this began a very long time ago. When Joseph Smith received the revelation from God in 1833 called "The Word of Wisdom", the saints were instructed on issues of health, both spiritual and physical. I have followed this guidance all of my life. I have never smoked, I have never tasted alcohol or drank coffee. I have tried to eat healthy. At the end of this revelation, the following promise is given:

Doctrine and Covenants: Section 89
18 And all saints who remember to keep and do these sayings, walking in obedience to the commandments, ashall receive bhealth in their navel and marrow to their bones;
19 And shall afind bwisdom and great ctreasures of dknowledge, even hidden treasures;
20 And shall arun and not be bweary, and shall walk and not faint.
21 And I, the Lord, give unto them a promise, that the adestroying angel shall bpass by them, as the children of Israel, and not slay them. Amen

With my new heart I can walk and not faint, now all I'm waiting for is the healthy marrow in my bones.


Monday, February 2, 2009

Groundhog Day

Today I saw my shadow which means, like Bill Murray, I will need to stick around until I get it right. I am always struck how different every day can be. I get the chemotherapy (Velcade and Deexamethasone) every Wednesday. By Friday I feel like 'Death and all his friends' are visiting. It consists of that very uncomfortable feeling where, on the one hand you are hoping for reverse peristalsis (euphemism for vomiting) and simultaneously holding on to avoid the mess. At least it is predictable. I know that no matter how bad I feel on Friday, I will survive and Saturday will see my appetite return. By Monday I'm ready for anything. I know that in life we must have opposition in all things, but I am often struck by its immediacy.

I would have liked to stay home on Friday, but we had our intial appoinments with the Bone Marrow Transplant (BMT) Team at Stanford. Dr Arai, the BMT specialist, oulined what we would be facing in the coming months. I was very pleased that she had been in communication with Dr Lacy and the Mayo Clinic team. They discussed the nuances of my case with regard to the heart transplant and immunosupressive drugs. Then the nurse coordinator, Zoe, listed all of the studies that I would need in preparation for the transplant: Bone marrow biopsy, pulmonary function tests, labs, heart biopsy and an echocadiogram. This was then communicated with Dr Sardar, my oncologist in Roseville and the cardiovascular transplant team at Kaiser in Santa Clara.
When I was in Junior High School, I dreaded P.E. This was because whenever teams were chosen, I was always the last one standing on the sidelines (the irony of being 6' 2" and unable to dribble.) What a difference now, with all of this new-found coordination among all of these teams, this now elevates me as a first round draft pick. I guess I'll be playing for Stanford.

The gameplan will begin, after the preliminary workup, with 4-5 days of stem cell stimulation with a hormone called G-CSF (granulocyte colony stimulating factor). A Hickman catheter (semi-permanant IV) will be placed into my right subclavian vein and and after 5 days the stem cells will be harvested in a process called apheresis. My blood is run through a machine which magically pulls out the stem-cells and puts everything else back, (just like my daughters picking their favorites from a box of See's Candy.) These cells are then frozen. A few days later, I will get a drug called Melphalan which will kill my bone marrow, including the plasma cells responsible for my amyloidosis. Two days later, the stem cells will be reinfused to 'reboot the hard-drive' to a clean, unaffected state. It will take some time, however, for my red blood cells (RBCs), white blood cells (WBCs) and platelets to return to normal. During this 2-4 week period I will be anemic, prone to infections and bleeding. This will also be componded by the fact that I am on immunosuppressive drugs for my heart. Bring it on!

But that is all tomorrow. Today was beautiful; California, in the dead of Winter. It is 70 degrees outside and I went for a bike ride. I rode 5 miles on highway 193 into downtown Lincoln. I felt great. But my atrophied chicken-bone legs were yelling up to my brain, "What the heck is going on here?" Meanwhile my heart was querying, "Are we exercising? No one tells me anything, always out of the loop." My adrenals just rolled over and went back to sleep.

I remember the day after my heart transplant, I realized that I would be able to ride my bike again. I decided to set a goal to ride in the Foxy's Fall bike ride out of Davis, CA in October. I would do the metric century (100 km) instead of the century (1oo miles). I feel compelled to do this to raise awareness for the metric system (and amyloidosis as well) both of which are equally obscure in America. I figure, if I survive the BMT, I will then begin to train for this. I really think I can do it. It is important to have something to look forward to.