Progress

Thanks for all the thoughts and prayers. Hit a fee bumps in the road, but the stem cell transplant worked so I go to Dodd Rehab hospital for 2-3 weeks to regain strength...like being able to walk unassisted. :/

Keep the thoughts and prayers coming!! Love you!

Back among the living for now

It's been along time getting back to feeling okay mostly because of chemo and a lot of weight gain. My skin is reallytrsmofm. yellow from the bilirubin. not been processed and still really really tired. I had a blood transfusion last night of platelets and so they say that that should help a bit.
While the hair continues its days are numbered. I need help soon!!

Chemo done, cells tomorrow

Pretty rough last few days. Fluids they gave with chemo added another 8 pounds of water weight so moving is tough. On oxygen now.

Got a shower in today and slept away the rest of it.

Transplant tomorrow. That's when it gets real.

Need lots of prayers & positive thought that these cells do their work!

Loooong day 1

I didn't sleep well last night and came into the day tired. Everything went well. Central line placed with no problem...conscious sedation is a wonderful thing. I was able to eat a little dinner.

Al brought Claire in for a visit which was nice. My nurse today, Tom, was so diligent about explaining what will happen and ideas about how I can do well through this mentally as well as physically.

He shared this video

http://www.youtube.com/watch?v=uOj0zjPzg-c&sns=em

and said the reason the runner, Billy Mills, was able to recover from the other runner's interference is because he had visualized so many times how he would perform at the end of the race that his mind willed his body to do it.

When things get bad next week, Tom encouraged me to keep my focus on what I'm hoping to achieve and to remember that a small step forward is better than standing still or going backward.

I had my chemo at 8 and the protocol is to eat ice for 6 hours to prevent mouth sores. the last thing I need is anything interfering with my ability to take in calories. So, here I am, watching the NCAA Championship game and chewing ice until 2 am...and trying to stay awake.

"The Fastest Way Out Is Always Through"

That quote from Rober Frost has always been one of my favorites but has taken on new meaning as I face the stem cell transplant.  Between the side effects from the high dose chemo I get on Monday and Tuesday...


• Nausea
• Vomiting
• Diarrhea
• Stomach pain/cramps
• Heartburn
• Mouth sores (oral mucositis)
• Painful or difficult swallowing
• Skin rash
• Hair loss

And the side effects from the stem cell transplantation I get on Thursday,

• Nausea and vomiting 

• Abdominal cramping 

• Chilling 

• An unusual odor 

• Taste of garlic
it's going to be a rough ride to get through.  Except for the garlic taste.  I haven't felt like eating garlic in a long time so maybe I'll just eat only food that I like with garlic and let the side effect do its magic.

The weeks of fatigue following the transplant will be a real challenge for me but, over the last few weeks, I've really learned to not over do it and have a better ability to know my energy level and set my activities accordingly.

This past week was hard as I tried to enjoy my last few days "on the outside" but had so much bloating and kidney issues, it was really tough.  But I did make it to the Fleetwood Mac concert with my daughter and son-in-law, and friends Allyn and Jasper.

And I had a great visit with my friends who came up from Virginia for the show.  Allyn has always been my example of a true friend and this time was no exception.  She brought food for us and cooked all the meals while she was here,  gave me a greeting card to open each day during the next month and offered to come and stay for as long as I needed.  Her husband Jasper went above and beyond by doing our federal and state income taxes.  I normally do our taxes and wasn't sure I'd be able to get them done this year.  Jasper, who does taxes for many of his family members, graciously prepared ours...and found that we could lower our tax bill by $900 if we contributed an additional $2200 to our HSA.  Its not like we won't use it.

My neighbor Erin came over Saturday evening and hung out with me while I sprawled in bed and Alan was working.  We talked about how uncomfortable I was from the abdominal bloating and how I looked about 8-9 months pregnant.  Erin mentioned how a maternity support band helped her toward the end of her last pregnancy.  She went out today and bought one for me and it did help me stay upright for longer periods of time.  Maybe now I can walk into the hospital.

Friends have been so generous with offers to help while I'm in the hospital.  Its so comforting to know there are so many people ready and willing to help if we need them.

So, Monday, April 8 10:30 AM this $hit gets real.  I know God will be there with me through all of this.  May I remember to look for his strength and courage and remember Jesus' words, "My grace is sufficient."

Words for next week

Limits

I've really been upbeat and positive in describing my health here on the blog because, in the grand scheme of Amyloidosis patients, I'm in a pretty good spot.*  However, that doesn't mean the disease hasn't impacted me.

Probably the worst part is the water retention that has occurred.  I've watched my weight steadily rise over the last few weeks due only to water.  And it's not the simple water retention that diuretics will fix.  It's due to swelling of my internal organs and water retention in the lining of my intestines, stomach, etc.  I asked Al if it would help if I swallowed a few Sham-Wows to let them do their magic but he didn't think that would create the physiological outcome I was looking for.

I've gotten over the vanity of looking 8 months pregnant but carting around this additional water weight is exhausting.  By my calculations, I now have an additional 28 pounds of water I'm carrying around.  I usually weigh about 128-130 pounds but I know I've lost a few pounds in mass because I haven't been able to eat much.  So let's say my true body weight is 126 pounds.  I've been averaging around 144 pounds before the stem cell harvest.  However, they have to give me a lot of fluids to go through the process and I've felt even more miserable and bloated since that started.  This morning, I weighed myself and it showed 154.6 pounds--10 lbs just from the stem cell harvesting.

That's why I've been so miserable and tired.  I have to make some hard choices about what I have the physical strength to do...simple things like going to Claire's lacrosse games--I've missed them all.  So I spend most of my time in bed...keeping my legs elevated and conserving energy.  That is so not me.  But when you're weakened already, hauling an additional 30 pounds around requires tough choices.  My pre-illness attitude of "push yourself and test your limits" has been replaced by "conserve your energy and know your limits."  That's as hard emotionally as it it physically.

But, Monday is the first step in my recovery.  I report to the hospital at 10:30 to have my central venous line placed.  This gives the staff one place to easily put stuff into my bloodstream (chemo and other drugs) and take blood out for tests which will happen multiple times a day.

After that, I go up to the unit and meet with the Bone Marrow Transplant physician and nurse practitioner who will be managing my care during my stay and the primary RN responsible for the day to day care.  In addition, I'll meet with the dietician and social worker.   Gotta figure out when I can squeeze time in for Tami to come give me a buzz cut so I don't have a lot of hair to fall out.

The high dose chemo happens on Monday and Tuesday. The chemo agent I will be getting is Melphalan (which reminds me of the antagonist Maleficent from Sleeping Beauty) and is designed to wipe out the bone marrow in my body.  The transplant should happen on Thursday which, according to stem cell transplant tradition, becomes my new birthday....but I like to think of it as my additional birthday. :)

After that, its make it through the first 2 weeks after the transplant and watch my white counts climb showing the cells are engrafting and starting to do their job.

So, prayers/positive thoughts, etc. over the next 2 weeks that the chemo works with few complications, the stem cells engraft properly and the new bone marrow doesn't produce the amyloid protein.

Thanks to every one who has reached out with kind words and actions.  I owe so many people thank you notes I don't know if I'll ever catch up.  Just now that your love and support is what keeps me going.

*Yes, compared to many others I am in a good spot. However, I can't help but think if this had been diagnosed sooner how much stronger I would have been going into the transplant. If only my primary care practitioner had ordered a urinalysis when I came in on 12/18 due to edema rather than chalking it up to me eating too much salt. The proteinuria probably would have been seen on 12/20 instead of 2/22. Referring me to a nephrologist at that point could have put me 2 months ahead of the game. Yes, I know primary care docs can't go ordering every test under the sun but it would seem reasonable to order an $11 test in that situation. --rant over--

Day 2

Spending another day with my stem cell robot I've affectionately dubbed "Sucka".

Not as bad as I was anticipating last night

Stem Cells for Easter

No, its not traditionally what the Easter Bunny brings in the baskets for children at Easter, but for me, stem cells and the Easter season will be inexorably linked.  While most folks may think Easter ended on Sunday, those of us in traditional churches, such as the Episcopal church of which I am a member, know that Easter is a season of 50 days.

The Easter season commemorates the time that Jesus walked on the earth following his resurrection and ends on Pentecost.  That was the day that Jesus appeared among the 12 disciples, hiding in a locked room because of their fear of arrest and punishment due to their association with Jesus.

So, what does this have to do with stem cells? As I've pondered how I can ensure this process can be used for God's purposes, the timing of the transplant and its physical and emotional challenges, I first thought that this was an extra season of Lent this year--"Lent 2 2013:  This time He REALLY means it.".  Lent recalls the period of time that Jesus wandered the desert for 40 days, fasting and being tempted by the Devil.  In modern church practice, the faithful are called into a period of penance, reflection, sacrifice and good works to prepare for the coming of Christ at Easter.

But, as I've prayed and pondered, I really believe that my process through the transplant is much more aligned with the Easter season than the Lenten season.   The Easter season is the time that Jesus appeared to the disciples and instructed them on how to transition from how they expected things to be, to how things really turned out.  And that's exactly what I need during this transplant time.

I had my expectations of a long, healthy life, a steadily progressing career, and the strength and stamina to do whatever I desired.  While my diagnosis may not prevent that, it has made it much less certain than I expected.  So, as I go through this transplant period during the Easter season, I will think about the risen Jesus appearing to his disciples and showing them the way forward.  It may not be the way I had planned but I trust it will be the way that will lead me to the place, and person, God wants me to be.  And, ultimately, that's the best place to be.

Tomorrow I go back for my second day of stem cell harvesting.  You wouldn't think lying in a bed hooked up to a machine for 6 hours would be tiring, but it is.  It's also very uncomfortable because you have to keep the "output" arm totally straight and squeeze a ball like you do when giving blood....but for 6 hours.  There are also a lot of chemicals that get mixed with the blood before its returned that made me feel really strange.  I'm NOT looking forward to tomorrow.

But, as Amy reminded me, there are many diagnosed with this illness that don't have the option of a stem cell transplant and the hope of full remission that comes with it.  Tomorrow's harvesting is another necessary step that puts me one step closer to that remission.  So, its time to suck it up and move ahead.

As Robert Frost said, "The best way out is always through."

Harvest time

In for stem cell harvesting today. Pray that these cells will be healthy and strong and will not produce those stupid proteins.

4-6 hours hooked up to the Apheresis machine today and probably tomorrow. Glad my sister-in-law Karen is coming to hang out with me.