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!

Home Again

I am home and adjusting to my new energy level and all of my restrictions.

When I got home Sunday evening I had to stop to rest halfway up the stairs both times I went up.

Monday I was feeling much more energetic, unpacking, reading my mail, opening mail order packages (I swear I’m going to stop shopping!) and dealing with some prescription and appointment issues (it’s always something!). Sarah came over in the morning and picked up my prescriptions for me. Of course the one that was most essential was not there, mephron. Mephron is the antibiotic I need to take to keep from getting pneumonia. It is by far the most disgusting medication I have ever taken. It looks like something they would have made for Nickelodeon, it is a neon yellow, thick oral suspension (why not a pill? why?!?!) that tastes like banana-flavored paint thinner.  This is not an exaggeration, that is EXACTLY what it tastes like. So in my “it takes a village fashion” after several phone calls (the pharmacy in Boston, the unit where I was inpatient, CVS locally, etc.) and several hours later my mom had to go out to a different pharmacy and bring me the mephron.

Later in the afternoon Sarah “walked” me. I am supposed to walk daily, but not alone. (I will go over all/most of the restrictions at a later date, I don’t have the energy for it yet. But suffice it to say that any of them taken alone don’t seem onerous, but once you start layering them – oy vey!) Yesterday we went to the beach in East Haven, very manageable. But I insisted on collecting shells. Squatting down, getting back up, over and over again. After a while I realized that I shouldn’t be doing that and stopped.

This brings us to this morning. I felt like I had been run over by a truck. I had to rest in between the tiny steps of whatever I was doing. My legs were sore. I was totally exhausted. Sarah came to take me to an appointment I had at Smilow for a blood draw and if needed, a transfusion of blood products (platelets or red blood cells).  I was sure I would need red blood cells.  Well, let’s say I was sure that I needed a transfusion, or I did too much on Monday or a combination of the two. So, I probably did too much – no transfusions needed – which is actually good news!

Sarah and I headed to Trumbull to pick up Minka and made a quick pit stop at my sister-in-law Lynn’s summer rental on the beach in Milford to drop off a plate that had been at my house.  Great to see her and a bonus as my mother-in-law Lillian and other sister-in-law Tobi stopped by too!

It is so good to have Minka home (of course there are more rules and restrictions connected with her). There is nothing like a sleepy dog as your partner in crime while you are supposed to be resting.

Day +11

I’m coming home tomorrow (Sunday)!

My WBC count multiplied by 6 up to 1.45. And my absolute neutrophil count (ANC) which had been non-existent and needed to be 500 for me to leave was 1200 this morning!

There is a little bit of a glitch with my home medications but everyone here is doing everything they can to work it out. 

I just had another reiki session and I’m waiting on the arrival of my mom and my brother for their visit. Scot comes tomorrow morning to take me home two days early!!

I am also anxiously awaiting the Hickman line removal. 

I have some more “training” to do before I can leave. It is a tiny bit frustrating because there are some inconsistencies between sources of information in regard to the long list of limitations I will have for the next 30 and also the next 90 days. But never fear I will get it all sorted out, with the assistance and of course the nagging of my great care team at home. 

10 Million Stem Cells

I ended up with a grand total of slightly more than 10 million stem cells collected.

They have sent me home where I’ll rest up for the upcoming treatment (I get admitted this Saturday).  The additional specific instructions are “to eat all the salad, raw fruits & vegetables and raw fish I can!” It will be almost two months before I can have those again and one year for the raw fish.