Day 13 – Packed and Ready To Go   October 19th, 2011

I managed to eat a whole thigh and drumstick’s worth of chicken from the rotisserie chicken we had last night. Could not eat the skin because it was too spicy, but still a major achievement.

It was a pretty decent night too – only one wake-up for vitals and blood draws. I slept pretty solidly from around 11:30pm to 8:30am this morning. Using Toothelle Mouth Moisturizer to lubricate my mouth before going to sleep was a key part of the better rest I got. It’s a new thing one of my nurses suggested, and I’m glad she did!

I woke to learn that my neutrophils and white blood count had continued to increase since yesterday (not much, but a bit, since I was now off the Neupogen booster shots). Other than a slight deficiency in my potassium and magnesium (cured with pills in the former case, and my final IV infusion for the latter), everything looked good, even with my platelets, which had naturally increased from 21,000 yesterday to 29,000 today. That means my body is starting to heal properly!

Shortly after the magnesium IV infusion ended, my doctor came in to remove my dual-lumen Hickman catheter port. She was unable to just pull it out as my body had already started to form scar tissue around the cuff that’s part of the tubing (and is supposed to let the body’s tissues form a tight, integrated seal, both to reduce the chance of infection as well as to provide additional security from accidental tugs). So I got injected with lidocaine, and she then used a scalpel to free the cuff. The actual removal of the plastic tubing was a non-event after that. The tubing looked shorter than I expect. Krystyana and Linda observed the whole process, but Bas averted his gaze – he’s not into blood or sharp things penetrating human skin. In any case I now have a small bandage covering the original port site, which I will be able to remove in a couple of days. And no more port!

The process, however minor, did tire me out, and I have a little bit of pain at the exit site when I move my arm in certain ways. That apparently frees me from heavy lifting with luggage tomorrow or any other sort of overexertion involving my right arm and upper body. Time for Bas to earn his keep, I think :-)

Our TIL friend Jamie and her husband Jeff swung by to say hi – Jamie was having her one-month scans done this afternoon to see how the TIL with IL-12 treatment she received worked. It’s still a bit early to see definitive results, but we know she will be NED before long!

I managed a low-carb protein shake for a late breakfast, and then for a late lunch, wandered down to one of the cafeterias here at the clinical center. I managed to put down most of a Salisbury steak (which I had the grill master throw back on the grill for me to ensure it was hot enough), and Vitamin Water Zero (which only had a bit of flavor, but was refreshing nonetheless).

After that I was exhausted, and napped with Bas for over an hour and a half. Good snuggles and a good nap.

The girls had gone to the lodge to pack themselves up so they could be ready to go tomorrow, and then came back to pack me up. I sure have a lot of crap stuff here! Fortunately we are flying back on Delta to Boston tomorrow, where Linda, Krystyana, and I all have elite status, which means at least two free bags up to 70 pounds each per person (the benefit rubs off on Bas too). We need it, apparently :-)

Dinner was a daring experience – Chinese Food. I kept it simple, yet experimental, with foods that should all qualify as neutropenic based on their recent cooking temperatures): Egg drop soup (went down pretty well, although a bit thick), Crab Rangoon (went down best with the sweet sauce), boneless spare-ribs (were a bit spicy on the tongue, and had no real flavor to me – needed the sweet sauce too), and fried dumplings (couldn’t manage the dough, but the meat blob on the inside went down well with the soy-based dipping sauce). I only had a small bit of everything, and noticed how off the flavors were from my expectations due to my tongue situation. I tried a bit of hoisin sauce that Linda got with her moo-shu dish – the hoisin had real hoisin flavor to me, but also was a bit too spicy on my tongue. It was good to be able to experiment a bit though, as well as eat more solid foods than I was able to manage only a few days ago. I expect what I can taste and eat will be expanding every few days as my body continues to heal and mend.

I will add that Jamie and Jeff dropped off some mini-cheesecakes. I was able to enjoy several bites of those before becoming full. In retrospect they were the best (and most flavorful) part of my meal, and I should have started with them!

My sleep tonight should be uninterrupted as I no longer need my vitals taken, and won’t have any blood drawn. That will be awesome!

And tomorrow – my destination is my steam shower in Boston (it’s not really a steam shower, per se, but the water it produces is strong and hot, and can steam up the whole bathroom easily)!

Good night all, and thank you for all your support and words of encouragement and love – they have definitely helped me through the last three challenging weeks here!

Virtual hugs to you all!

 

Day 11 – Closer to Release   October 17th, 2011

My immune system continues to mend itself, thanks in part to nightly injections of filgrastim/Neupogen – the same drug administered to me to boost my white blood cell counts as part of my stem cell harvest. I have been getting these shots for over a week now. Nice to see they are finally making an impact.

My neutrophils are at a whopping 1960 (compared to yesterday’s 500), and my white blood cell counts are at 2700. Major increase in both, and these are based on 2am blood draws, undoubtably they are even higher now. Unless something goes awry, I will be discharged on Thursday or Friday, most likely (might be even sooner, but I’m not counting on it). Woohoo!

The other good news related to elevated neutrophil countsis that while I will still be more susceptible to germs and need to wear a face mask in confined places, I will no longer be neutropenic, meaning lots more real hugs from Linda and the kids (instead of the half-hugs we were settling for to avoid infection). Also, once I’m determined to officially be no longer neutropenic (three days of neutrophils above 1000 or one day above 5000), I will be taken off most the drugs I am still on, including the two IV antibiotics. Will make for more restful days.

It was otherwise a (good) boring day. I had extra infusions of magnesium and potassium, but nothing else extra. My platelets were at 20 as of this morning, so there is a likelihood of a platelet infusion tomorrow if it drops below with tomorrow morning’s early blood draw and analysis.

The girls spent the day out in DC, at the Newseum, with lunch next door at The Source. I was able to surprise them (under the masterful direction and help of our AMEX concierge goddess and friend, Tara) with special desserts on which the dessert chef wrote a message in chocolate telling them both how I loved them. Krystyana will have to share the pictures she took when she has a chance.

Bas spent the day with me, and we managed to get in three episodes from the first season of the sci-fi series Farscape (thanks to Amazon Prime Free TV), as well as another wonderful walk outside in the sun.

The dry mouth is still here but I find sores my mouth and tongue have started to heal, and indication that my system is slowly returning to some level of normalcy.

A good afternoon nap provided necessary balance, and I now find myself ready to be a day closer to heading back to Boston – a vision that is now finally within grasp.

 

Day 3 – Slow Recovery   October 9th, 2011

After Linda and the kids left last night, my plans for a restful night kind of came to a close with the introduction of a high fever and chills. The fever lasted most of the night and finally broke this morning. I kept telling myself that fever was a sign of the on-going battle of TIL vs. evil cancer cells, so in a way it was a good thing. And my doctors later confirmed that probably was the cause too.

However, it should be noted that the TIL attack is something that goes on for weeks, and it’s generally not clear until the second of post-treatment scans (which would be early December) of how well the treatment works. So feeling tumors from the outside to see if they have gotten smaller is something of a pointless exercise, at least this soon after the TIL was administered.

From the comments that Linda’s post received yesterday it might not have been clear that the 5kg of water weight I needed to drop was to ensure proper organ function, as much of that weight was in my organs (such as my lungs), and not any sort of vanity. I’m close to half-way there, and my lung capacity seems to reflect that.

The other side-effect of treatment that has been increasingly frustrating is that I have “dry mouth“, meaning that my salivary glands simply don’t turn on. So, to eat most things that don’t have a thin gravy of their own, I have to keep my mouth lubricated with water in between bites, and sometimes combine the two. That turns something like a protein bar into mushy cereal – not a great texture sensation.

A related symptom of this whole dry mouth situation is that my ability to taste has gotten terribly screwed up. Certain foods have no flavor (like Chef Boyardee single-pack macaroni and cheese – though Linda says it doesn’t have much flavor to start with), foods that should have quite a bit of flavor (Chef Boyardee single-pack Beef-a-Roni) are bland, while for other foods, even a few flakes of black pepper can make the dish inedible. I can taste sweetness to some extent though, so I’m thinking once I’m back in Boston I may have to work my way through Ben & Jerry’s collection if it looks like ice cream is edible to me.

I also learned that the carbonation from carbonated beverages is actually painful to my mouth.

I have some various dry mouth rinses, gels, and sprays – all of which work, but only temporarily, and being a mouth breather, things get dried out pretty quickly.

Hopefully my salivary system and tongue will heal up soon enough (it could be months) and I can start enjoying food again as opposed to having it be a torturous necessity for survival.

Perhaps I should be glad that this is the only side-effect from treatment that has clearly manifested itself, as I’ve had virtually no nausea (although in part that could be contributed to by the thrice daily infusions I get of Zofran), and while my energy levels are low (lots of naps), I don’t seem to actually be suffering from extreme fatigue (again, knock on wood). This may still change, but I’m hoping it doesn’t.

Today has been mostly spent connected to my IV drip system, first getting potassium phosphate to replenish my electrolytes (a four hour drip), then followed by two units of blood (two hours each – just finishing my second unit now) to boost my hemocrit and hemoglobin counts. I may also get more platelets tomorrow.

The family was with me most of the day, and during the points I wasn’t napping we took advantage of the rather decent WiFi connection here to watch a couple of streaming TV shows from Amazon (and yes, I have an Amazon Fire on order :-) ).

They (the nurses here) expect I will be under their care for another ten days or so, so my immune system can get built up enough that I can safely (with face mask on) travel back to Boston for a couple of weeks before coming back down for my first post-treatment scans in early November.

One ambling day at a time…