Quick Update   May 9th, 2012

From Linda…

As you may know from the last blog entry, Jake’s daily intake of steriods was
reduced at his last doctor’s appointment. We had been warned that it might cause
some weakness and we should keep in touch with the doctor with any symptoms that
might develop. Jake has recently been feeling weaker and uncoordinated so we
contacted Dr. Flaherty today to see about raising Jake’s steriod level back up to
relieve the symptoms and get Jake moving better. The doctor readily agreed that
raising the steriods back up would be a good idea. It will likely take a couple days
to see some improvements.

Jake had tried acupuncture before and found some relief from cancer treatment side
effects but we had problems locating another practitioner in Boston when his moved
away. Now that we are in Chester, Linda found an acupuncturist in nearby Hampstead.
Jake has had a couple treatments so far and is looking forward to more at the
Merrimack Valley Acupuncture. Jake has also had some reflexology massages at spa as
well as nightly leg massages from Linda to get some relief from lymphademia in his
right leg (a side effect from lymphadectomy surgery a year ago).

Our Softub spa is finally up and running with the last part, the bench surround,
arriving today. We still have not convinced Bas to give it a try, although the rest
of us have had a dip or two.

As promised, Jake has increased his daily PT in preparation for traveling. Krystyana
and Linda take turns running him through his exercises 2-3 times per day. Our travel
plans take us to Minneapolis, Indianapolis (and Columbus), and ending in Cincinnati
during the second half of May.

 

Eating Well and Touching Myself   November 5th, 2011

Okay, so maybe the title is a bit provocative, but enough time has gone by, with enough changes, that I thought I should post an update.

On the recovery side of things, while I am still not at full energy, I do find that my energy levels are going up by a tiny bit every day, and in fact, I’ve not had a daytime nap in a week. I am making sure not to overdo things, but every other day I go for a pretty long (and slow) walk to rebuild my strength and stamina.

The dry mouth is still here, with some days better than others, and my foods still need to be well lubricated (sauce is good!) or moist for me to be able to consume them.

More importantly, my taste buds are healing, and I’m able to taste more and more foods. I still find myself very sensitive to very tart (acidic) ingredients as well as spice (of the chili variety), but am now able to manage most normal foods and enjoy them reasonably well. Black pepper is fine now too. For example, in the last week, we’ve had Indian, Thai, and Chinese foods, and I’ve been able to eat all but the spicy dishes. Plus, of course, the fabulous creativity of Linda and Krystyana have been a key component as well. For example, last night they made 40 clove chicken (I only had one garlic clove, but two large drumsticks with the lemon garlic sauce the chicken was braised in).

I know I am still quite far from getting the full flavor of dishes and foods, but that will all come in time. And considering where I am now, relative to where I was just three weeks ago, it’s a huge world of difference already.

So, onto the “touching myself” aspect of this post…

When I was starting my TIL/TBI treatment at the National Cancer Institute in Bethesda at the beginning of October, I had a number of very palpable melanoma tumors in my right thigh, and the area the tumors for the TIL harvest had come from felt like someone had buried a baseball in my thigh – it was rigid with small lumps around it as well.

Flash forward to the present, and I can only feel (by touching myself – get it?) just one of the smaller tumors (there were over a half dozen) in my thigh, and the baseball shaped mound in my thigh has gotten quite soft as well. Considering that my weight is down to a svelte 200 pounds (down from 225 when I started treatment) – meaning I have lost quite a bit of weight, which should have made the tumors more pronounced if they were not shrinking, this suggests that some aspect of the treatment is working, and working much more quickly than expected. It’s not clear whether the IL-2 or TIL cells (or the combination thereof) are the cause, but either way, Linda and I are pretty jazzed by these rather noticeable early result. We haven’t said anything publicly sooner (although we noticed the tumors becoming less palpable over a week ago) because we wanted to be sure that trend was continuing (and it is). My doctor did tell me last week (after getting my excellent blood work results), that I continue to be ahead of the curve. So here’s to being an overachiever with a type-A personality!

We’re expecting that the scans coming up this next week at the National Cancer Institute will give us some further insight as to what’s happening internally, but outward appearances suggest that I am slowly heading towards NED. And that means being able to going back to living at home on Bonaire on a more permanent basis once again down the road. Woo hoo!

 

Finally, Back in Boston   October 20th, 2011

I had a bit of anxiety this morning when my nurse wandered into my room to tell me the computer scheduling system was requesting a blood draw, which would have required getting punctured, since my catheter had been removed last night. Apparently it’s something that was scheduled automatically based on a past order by the doctor and didn’t get canceled. I declined as advised, and the blood work was marked as “patient refused”.

During rounds the doctors had a bit of a laugh about this, and I was wished a pleasant voyage home.

By 11:40am we were on the shuttle bus to Ronald Reagan National Airport, and by 12:45pm we were checked in and past security (in my wheelchair). I managed the meat, cheese, and mayo of a McDonald’s quarter-pounder, and the fried fish rectangle with cheese and tartare sauce of a Filet O’Fish. Both went down pretty well. Mayo makes a great lubricant, and tartare sauce is pretty good too. No buns because they are dry and I am still adhering to my low-carb lifestyle as best I can. I think broiled duck is on the menu at home for tomorrow, and perhaps the schweinshaxe (pork knee/knuckle) from the freezer (which my Dad had sent me for my birthday) a few days later.

We had arranged SUV transport to get us and our seven checked bags, and five carry-ons, back to our apartment in Boston, and things just barely fit, but by about 4:30pm, we were finally back in the apartment. I cried tears of relief, elation, and happiness – I couldn’t quite believe we were finally here again after 24 days.

There is no place like home (“home” = Boston, and “home home” = Bonaire – hope to get there next spring, finally). Home is also where the cat is, and she was happy to see us and cuddle with all of us.

I rested for a while, and there’s been lots of unpacking going on, so I haven’t gotten to my steam shower yet, but we have two new humidifiers running now, and the dryness here is far less already than in my room at the clinic. The shower is coming before bedtime for sure, though…

This will probably be the last of my daily posts on the blog, as all I will be doing for the foreseeable future is continuing to heal and regain my energy and exuberance (but not too quickly, since that could set me back). I may provide occasional updates over the coming weeks as I discover something new to share. I will also once again notifying people on my e-mail list of updates to the blog starting with this post.

Also, anyone wanting to visit us at the apartment is welcome to do so providing they are not sick or have not been significantly exposed to sick persons within a day of visiting. Drop us an e-mail to confirm timing first though!

The next milestone will be my scans and clinic appointment on November 9th and 10th, and I will certainly post after that. I’ve been told not to have high expectations for the first scan, so please don’t get your hopes up either. Scan 2 in December will be a lot more telling, and should start to show my progression towards NED!

Signing off – tired but happy.

 

Sadly the vaporizer did not work particularly well last night, so I will just have to try and hydrate more regularly. Linda already has some homecare vaporizer and humidifier equipment sitting in our Amazon.com shopping cart just waiting to be ordered once we know when we are returning to Boston.

And on that note, my nurse brought me glad tidings this morning. My neutrophils had sky rocketed from nowhere to 500! My white blood cells were at 740, and my platelets had stayed at 25 overnight. Woot!

I will probably need some more red blood tomorrow as my red blood cell counts are a bit low, but the doctors say that it’s quite likely I will hit 1000 on my neutrophils tomorrow, which means the countdown towards departure would start.

Two nice surprises today included a spontaneous visit from an old friend, Rebecca, who I had not seen in at least two years, bringing me one of her favorite books and a number of skin care (and head care) products for cancer patients who had had chemotherapy and/or radiation. I’m looking forward to trying them out (the company that makes these is Alra). We caught up on the last couple of years, including the update that her brother and his wife had returned from a vacation in Bonaire last night. Thank you for brightening my afternoon Rebecca!

If anyone else is so inclined, the best times to stop by are between 1:30 and 4:30pm, as I am least likely to be tethered to an IV or napping during those times. We can provide specifics of location on the NIH campus by e-mail to anyone interested. I expect to still be here through Wednesday at least.

The other nice surprise involved a 15-minute walk outside (with face mask on) absorbing the warmth of the fall sun. I was tired after the walk but just loving every minute of it. Unfortunately tomorrow is not likely to be as sunny but I will make the best of it.

My energy levels are definitely improving bit by bit, although I’m pretty sure I will be wheel-chairing it at whatever airports I fly through later this week getting back to Boston.

For tomorrow, the girls will be scoping out the new exhibits at the Newseum, taking advantage of the family membership I bought there last month when I visited that awesome museum. That means Bas will be my personal assistant for the day, and we’ll be watch more of the Farscape TV series he and I have been enjoying together.

Hopes are that neutrophils keep sky rocketing upwards and that all my other blood counts remain good, as I’m longing for a shower that produces steam (mine in Boston), no more IVs, no more middle of the night wake-ups for vitals checks, and no more having to pee into a plastic vessel all the time so my “liquid output” can be measured.

And I am also looking forward to the ability to fling (well, gently drop) a chicken into a pot of water and have it simmer for hours to create a fatty and delicious chicken broth of my own, as well as eat whenever I want to nibble on during the day or night instead of the limited hours and options of the room service I have here. Not that I’m complaining – the clinic has been wonderful, but some normalcy after nearly three weeks of clinical care would be nice too. I can see that normalcy in my future and it’s looking sweet.

 

The doctors here say that boring is good. Alas, today was not quite as boring as yesterday. It started with a low-grade fever at dawn (38.4C/101.4F), which resulted in my taking Tylenol as well as being put on an IV drip with an even stronger anti-biotic than I have already been getting.

When the morning doctor rounds took place, I was informed that my platelets were at a very low 9,000 per cubic millimeter (normal is 140,000 and higher), exposing me to potential problems with respect to bleeding. Considering that I had bloody sinuses during the night, this was a bit scary. I was also told that there was still no measurable sign of any neutrophils in my blood. Maybe tomorrow?

I was given five units of platelets, and stayed on my IV most the of the morning. Getting another CBC (complete blood culture) this afternoon showed that the platelet infusion has bumped me up to 17,000. Much better but not great. So I’m getting another five units right now as I write this.

The fever has been gone since this morning fortunately, and I had a pretty good afternoon. I even had Linda take me out for a slow 15-minute walk around the clinic. Pretty tiring but it felt good to be moving. The rest of the afternoon was a nap-fest all around. I am coming to appreciate naps more than ever before. Naps are good!

The dry mouth is still a plague, although I have found that I can manage chicken and beef broths as my main forms of sustenance – they are among the least difficult foods to process as they minimize stringy mucous build-up, and cause the least mouth pain. I even managed to get some minced, steamed (over 165F because of my neutropenia) roast beef into me last night via the beef broth, which made my body happy (protein!). Warm herbal teas – blueberry and raspberry – are good too. And Hall’s Sugar Free Citrus Drops are helping a bit too.

I’m also coming to grips with the stubble on my head and face. The lightly-adhesive lint roller is coming in handy, but I still keep having tiny stubble hairs come off in my hands, shirt, pillow, etc. I will be glad when all the stubble is gone, so I can have a real Mr. Clean look, shiny head and all. I like that comparison (thanks Sam!) better than the Telly Savalas or Yul Brunner look.

I’m hoping for no fever overnight and the start of measurable neutrophils in the morning, as that would indicate my body is finally starting to make progress after the necessary destruction to my immune system caused by the chemotherapy and radiation.

Linda and the kids have been wonderful to have around to give me comfort, support, germ free hugs, and ruffles. I have no idea how someone without such a support network would handle this process. So, again, thank you Linda, Krystyana, and Bas. I love you all!

 

Day 7 – Restful day   October 13th, 2011

From Linda…

Jake said he felt less agitated today compared to yesterday. He got a good round of naps and no extra IVs today. His doctors congratulated him on a good boring recovery day and having a good attitude. :-)

Today Krystyana and I visited the National Gallery of Art to see the special exhibit of Italian Drawings which Jake had already seen about a month ago. We hit the supermarket on the return to stock up on microwave Campbell’s Chicken Noodle soup for Jake, plus food to cook for the rest of us at the Lodge.

I took Jake for a pre-dinner walk – three laps around unit. After dinner of beef broth with extra roast beef bits added to it, another three laps around the unit. I suggested a marathon next week – 26 laps!

Tomorrow is another boring day, highlighted by laundry for all.

 

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