Fourth of July Plans

Back in January I spent several hours on my computer trying to purchase tickets to see James Taylor on the fourth of July at Tanglewood, fireworks and all. I scored 4 tickets and was very excited to be going with our friends Lisa and Michael.  But then as the plans for the stem cell transplant fell into place I quickly realized that I would not be spending the holiday weekend as I had planned.

It’s not quite as dramatic as the Mike Tyson quote (I knew there was a quote about plans I needed for this, and the fact that Mike Tyson had one that could fit just cracked me up).
The infection control restrictions post SCT are basically this, I can’t go out to public places. I can go outside. I can go for walks with company, I have come to refer to this as “walking me”. I can go to the beach, I can even swim in the ocean. I can have visitors, healthy visitors, who must wash their hands when they arrive. I have been foregoing hugging or kissing greetings as this just seems prudent at this stage. The only public places I can go to are my medical appointments and when I go I have to wear a mask and gloves. I have gotten approval to visit a couple of friends at their homes who are on the water as long as I don’t go inside their houses.
Additionally, Scot has to clean the bathrooms and the kitchen – every day. And I have to wash my hands every time I pet Minka.I have had to abandon my hatred of paper towel usage and put away all my dish towels. This apparently is not a time to “be green”.
Food restrictions include:
  • No raw fruits or vegetables. This does not include thick-skinned fruits such as melons, citrus or avocados. It does include fresh uncooked herbs (like all of the basil,mint, parsley, dill, and cilantro in our gardens) and even uncooked black pepper.
  • No restaurant food, this includes take-out, pizza, Starbucks coffee.
  • No baked goods from a bakery, has to be store bought, packaged and processed.

I am struggling a bit this first week home with fatigue, nausea and lack of appetite. The nausea comes and goes. I found myself saying to my local oncologist yesterday that I was trying to be brave and not take the nausea meds.  He asked “Why would you do that?” I said, “Well, not brave really, I am trying to be positive and look forward and wish the nausea away with this positive thinking.” Moments like these remind me of being in therapy, where you can’t always understand what you are thinking until you say it aloud, and then it all becomes clear. As it was yesterday, he said nothing and I added, ‘That’s dumb, should I go back to taking zofran prophylactically?” And so it goes.

They say that exercise can help with your fatigue. I did a tiny little mini portion of my old workout routine, something like a third of a half of it twice this week.  The second time was this morning. I can walk at less then my normal pace for 15 minutes without feeling the effects. The plan is to add a bit to that every day, even a minute at a time.

The lack of appetite is lingering as well. I only feel like eating certain things and when I do, I can only eat a little bit of it before I am full or no longer have interest. This feeling is FAR outside how I normally feel about food and eating! I have lost 16 lbs. since I went into the hospital almost 3 weeks ago and I now weigh 5 lbs. more than I did when I got married – and haven’t seen this weight since that time (1983!).

So I am spending a lot of time on the couch watching t.v. If I do anything, emptying the dishwasher for instance, I do a portion of it and then go and rest and then do a little more and then go rest. etc.

But, this is the first week, and it should improve over time even if it is slowly. And I am not going to see James Taylor tomorrow, but I do see some lobster and corn on the cob in my future!

A million details and yet in some ways simplifying

Things are moving along full speed ahead for my stem cell transplant starting the end of this month.

Last week I spent a full day at Dana Farber for tests and “training”. They had already sent me a 3 inch binder full of instructions and materials, a powerpoint, a calendar and the dental package. But it was very informative because they pared it all down and clarified some important items.

First the tests: echo cardiogram, full skeletal survey (xrays, 18 of them), blood draw (19 vials!), pulmonary function test, EKG and my third bone marrow biopsy.  We were scheduled form 7:00 am until 5:00 pm.

The  training session was with the two nurses who are the stem cell transplant coordinators and another one with a social worker. They gave us details about what each step of the process would be like.  As I write this I am realizing I really need to listen to the appointment again (I record most of my appointments on my cell phone – thanks for the tip Laura!). But here are a few of the takeaways:

  • Minka does not need to leave the house when I am discharged from the hospital (the binder said your dog cannot sleep on your bed, and Minka sleeps under the covers!). The nurses clarified that she needs to be groomed, have flea & tick treatment and no face-kissing and I can’t kiss her feet (how did they know I kiss her feet!?!?!).
  • I learned how the neupogen shots I will be giving myself (2 per day) work. They stimulate your bone marrow to produce stem cells. Taking the shots daily for 10 days in a row causes one to produce so many stem cells that they start to sptill out of your bone marrow into your blood stream where they can be collected, I also learned that those overfull bones can be a bit painful.
  • Something I am going to be on (here is where I need to listen to the appointment again!) increases migraines, so I have to make a visit to yet another physician and see my neurologists for some migraine meds  because my current drugs of choice, two tylenol and two advil (thanks Lynn!), will not be available to me as I cannot have any NSAIDS.
  • I was told that I would have to stop drinking alcohol two weeks before the mobilization chemotherapy, and then that that was that day!  One of the nurses gave me that evening to drink my last drink (It could be 4-7 months before I can imbibe again). And I did, well, I had my last few, a little bit of everything, finishing with a Herradura Tequila on the rocks with lime.

herradura

There is more, but now I’ll move on to the schedule. Although I had a copy of the schedule sent to me I could not fully absorb it without the details they gave me. here are the highlights:

May 28: Full day of mobilization chemotherapy at Dana Farber. I will go home that night and plan in going to work the following day.
June 2: The last day I can physically go to work. After that they do not want me to risk getting sick and my counts will be down. I plan to work from home June 3-5.
June 8: Stem cell harvesting begins in the early morning hours at Dana Farber and will continue for anywhere from 2-5 days until they have harvested the 8 million stem cells they need (enough for two transplants, one for now and one in the bank). Harvesting is done outpatient, but are long boring days of being hooked up to machines. I will get to go home for at least a couple of nights afterwards.June 13: My inpatient stay at Brigham & Women’s starts.
June 14: This is called Day -2, first day of the chemotherapy for the stem cell transplant.
June15: Day -1, second day of chemotherapy.
June 16: DAY 0, I get my stem cells back.

And so on, until Day +14, June 30th, that is my “potential discharge date”.

At home I will have 30 days of food restrictions and 90 days of house restrictions. More details on those to follow.

But a quick touch on the simplifying. It is oddly freeing to not be able to make any plans, have no place to go, not need any new clothes, no trips to even consider planning.  Just treatment and healing for 4 months. I go through my inbox and delete all the sale emails, all the Groupons and Living Social deals (I won’t be able to go to restaurants), the Broadway Box offers, the Travelocity sales – delete, delete, delete.

I am counting down the days left that I have to dress for work (7!).

And I have download two different meditation apps to my phone – that I will have time for.