Plans and Donations   June 5th, 2012

For all our anal retentive planning, this I was not prepared for…
Requests for when service/memorial might be, or flowers, or donations.

So first of all here is the plan discussed with Jake. Jake is being cremated.

His ashes will be divided into three portions.

  • One will be taken back to the Czech Republic so that it can be placed with his ancestors and be near his parents who live in Prague.
  • Another will remain in the US. We are currently working on these plans but are hoping for a place in Auburn, NH as that is the town we were married in and the resting place of my grandparents who loved Jake dearly. Originally, we had thought some kind of scattering but our son, Bas, has requested a stone/urn so he has some place to call his Dad’s.
  • The last will be returned to Bonaire for a scattering in the sea to occur sometime in the fall; we are thinking October. We will let one and all know when we have definite plans so you can join us at the beach.

And a slight variation on Jake’s wishes, we are making up small pocket stones with his name on them to be left at various destinations around the world, so that Jake can continue to travel with us. He started a list with the children during his last hospital stay.

The kids and I will likely remain in the US for the summer and return to Bonaire in the late summer/early fall. We have no definite dates but plan on taking our time and spending some of the tough special days ahead like birthdays, Father’s Day and our anniversary close to the support of family.

Anybody that wants to contact us, our home in the US is:
73 Derry Road
Chester, NH 03036
or of course, you can email me at linda@lindarichter.com

Donations can be made in Jake’s name to any number of places. Here are a few suggestions that quickly come to mind.

Support Bonaire, Inc. www.SupportBonaire.org
Near and dear to our hearts, we started this US charity to fund various non-profit organizations on Bonaire.

Massachusetts General Hospital – Melanoma Center
http://www.massgeneral.org/give/howtohelp/#outright
Most of Jake’s care was under the direction of Dr. Keith Flaherty at MGH in the Melanoma Center. I cannot say enough good things about all the people that helped and cared for all of us at MGH, Concord Hospital, and NCI in Bethesda. If I started naming names, I would forget someone and feel badly about it. MGH has many clinical trials and researchers working to find a cure.

and last but not least…
Community Hospice House in Merrimack, NH
https://secure.hhhc.org/special_events/donation.php
This hospice is a not-for-profit VNA. They are wonderful people doing an amazing job at end of life.

 

The last three weeks have not been particularly enjoyable, filled with uncertainty, angst, and a modicum of hope that what I was facing was just a minor hiccup in my treatment.

It all started on Monday, November 14th, when my doctor at the National Cancer Institute (NCI) called to tell me that their radiologist had been unable to load some of the images from my brain MRI the prior week when I was at NCI for my monthly evaluation and consult.

Unfortunately, the news wasn’t very good. Turns out that in contrast to what we were told during the consultation, the brain MRI was not clean, but that there were five “mets” (short for metastatic tumors) in my brain – the largest being 6mm (the size of a small pea) across and on my cerebellum. The other four mets were quite a bit smaller, with two each on opposite sides of my brain.

I was also informed that since I now had brain tumors (under the assumption they had formed after my TIL treatment on October 7th) I could no longer be part of the protocol (no brain tumors allowed in the protocol), meaning no more free monthly evaluations at NCI (which made the costs of CT scans and MRIs completely free to me – no insurance involved. I was therefore being remanded back to the care of my oncologist at Massachusetts General Hospital (MGH).

While we really like my oncologist at MGH, the news was a real blow – a stunning reminder that with melanoma, nothing is predictable, and that there appears to be no simple, straightforward path one can rely on in treatment, even with TIL. I would have thought my initial reaction would have been depression, but in fact it was sheer anger at this stupid melanoma and its inability to stay put and let itself be exterminated by my TIL treatment.

We made contact with my oncologist at MGH (it turns out that the immunotherapy group at NCI regularly consults with him as an expert in the field of melanoma treatment) to figure out what to do next. After reviewing our notes we were thinking that the brain tumors could have formed in the three weeks before my TIL treatment started which gave us hope that the TIL treatment might be shrinking the brain tumors in which case I could be readmitted to care at NCI. In meeting with the brain-radiation oncology specialist at MGH the following morning, we came to an agreement that I would get a brain MRI in about three weeks to see if the tumors had shrunk. If they had, I would be remanded back to NCI. If they were unchanged, we would monitor with a later brain MRI. If the tumors had increased we would go ahead with whole brain radiation.

That MRI took place last night, and this morning Linda and I met with the radiation oncologist. Turns out there was a fourth option we hadn’t considered, namely tiny little hemorrhages (bleeds) at the location of the previously found tumors, along with “new small regions of hemorrhage and in areas of previously uninvolved brain” (from the doctor’s notes), suggesting that there were tumors that were too small to be seen in the MRIs, but having an impact nonetheless. This apparently is not uncommon with melanoma mets in the brain.

Also, there was certainly no shrinkage in the previously detected tumors, and there might have been minuscule growth (which appears to be within the margin of error the MRI machine, so that’s not entirely definite either).

These factors, especially the hemorrhages, pretty much necessitate the whole brain radiation, which will stop any active bleeding (the MRI can’t distinguish between active and non-bleeding hemorrhages), as well as kill all the cancer cells in the tumors and elsewhere in my brain. That means I will likely (very high probability) be free of melanoma and bleeding in my brain after the whole brain radiation. There will be another brain MRI sometime in February to confirm.

Note too that the whole brain radiation apparently has no impact on TIL cells outside the brain, and it’s unclear if it has a negative impact on the TIL cells in the brain. Seeing as TIL cells are white blood cells, it’s unlikely, but unknown.

As a result, I started a 13 day course of whole brain radiation today at dose of 2.5Gy per day (takes all of 30 seconds for the two exposures needed, but about five minutes for set-up and tear-down). I had to get a form fitted mask made to ensure my head would be perfectly aligned to avoid irradiation of non-brain parts (eyes, nose, etc.)

The custom face mask made using my face - the mesh allows for easy breathing

The custom face mask made using my face - the mesh allows for easy breathing

 

I will need to go into the radiation oncology facility at MGH every week day through December 15th for this radiation treatment. While the treatment is quick, if the Linac device I am scheduled for (there are three there, and I’m assigned to a particular one for the duration of my treatment) is backed up with other patients, I may have to wait up to an hour for my radiation treatment.

Me with my custom mask on, getting ready for my first dose of whole brain radiation

Me with my custom mask on, getting ready for my first dose of whole brain radiation

The side effects of this treatment are likely to include hair-loss – Hah! – I have that one covered! (see photo below). In my case it will mean that my hair will take some months longer to grow back. The other likely side effect is fatigue, which would be layered on top of my existing fatigue, which has not been significant so far. The radiation oncology doctor indicated that some of his patients are prescribed Ritalin to help overcome radiation induced fatigue.

Jake Self-Portrait - November 16, 2012

Jake Self-Portrait - November 16, 2012

Still missing from the above is a discussion with my melanoma oncologist about what to do about follow-up body scans to see how the TIL treatment is working, since NCI won’t be providing these any more (meaning, by the way, that our planned trip to Bethesda next week no longer exist). Another discussion that will need to take place is whether it’s a good idea for me to have some other sort of systemic treatment, like ipilimumab (Yervoy). Those discussions should take place in the next six weeks.

For those of you wondering, our trip to Bonaire at the end of the year, necessitated by the requirements of our special medical insurance for U.S. citizens who are foreign residents, is not affected by the radiation treatment. I’m hoping the fatigue won’t interfere with the enjoyment of the trip back home.

So, while these dramatic changes are frustrating, the fact there is a plan that will deal well with my brain mets in place gives me hope that we can move back to Bonaire full-time in April 2012, with my taking occasional trips to Boston for appointments while finding a guest bedroom to crash in with family and friends during my visits.

Some other miscellaneous notes that might be of interest to those of you following things more closely:

Dry Mouth Update – My dry mouth continues to improve. Sleeping with the dry mouth is no longer a real issue. If things get too dry I use a dry mouth mouthwash to un-dry my mouth. I can now taste and enjoy a pretty wide range of flavors (within the bounds of my neutropenic diet). Exceptions are spicy (chili pepper spice, like cayenne) foods, and foods with high acidity. White wines are unpalatable at present because of this, and red wines are drinkable but not as enjoyable yet as they were before my treatment. I don’t suffer a lack of appetite, although my shrunken stomach has physical limits as to what will fit inside.

A New Richter Cousin – One of the nicest unexpected side benefits of my melanoma treatment has been the discovery of a heretofore unknown Richter cousin. I first met Carolynne at the PET scan waiting room at MGH early this past August, and we got to talking about our respective melanoma occurrences and spread and the fact we both had the rarer NRAS gene mutation instead of the more common BRAF mutation. When I came back from my injection with the radioactive isotope, she and her husband Mark were gone. But a month or so later Carolynne had found this blog and sent me a message to explain her maiden name was Richter. With my father’s help, we found that our family tree shares an ancestor from the mid-1800s, and that her next generation ancestor after that was the brother of my similar generation ancestor. Look at the picture below and judge for yourself. The photo comes from when Carolynne and Mark came to visit us for a few hours of social and melanoma chat about a week ago. Definitely a major highlight of November for me.

Richter Cousins

Richter Cousins

Weight and Girth – My weight post-treatment has been holding steady at around 200 pounds. Sadly, a lot of that weight loss is muscle tissue, and not the roll of chubbiness around my mid-section (though that has decreased too). I have not weighed that little since late junior high school or early high school, when I was also a number of inches shorter than I am now. My waist is down to around 32″, the same as that of my 14-year old son Bas.

Neutropenic Diet – I am presently more than half-way through the three months that I need to be on my neutropenic diet, which ends on January 6th. I will be looking forward to my first medium-rare bone-in rib-eye after that date, with a green salad. Both are things I am not allowed to eat at present. I’m also planning for Bobbe Jan’s ribs and fries on January 6th, my last evening home on Bonaire before flying back to Boston. Yum.

That’s it for now. More when notable stuff happens, and apologies for not posting sooner, but we didn’t want to increase the amount of anxiety in our families and friends until we knew what was happening.

 

Still on the Path to NED   November 10th, 2011

Yesterday I spent the day at the National Cancer Institute at NIH getting scanned and poked. The poking started my day at 7:30am with an apheresis to process five liters of my blood (basically, my whole blood volume) to extract white blood cells for future research use and review when the clinical trial I am in ends (which will be once the 118 candidates have all gone through treatment in a year or more). The wonderful apheresis nurses managed to jab me only once per IV (I needed two lines – one in, one out), and even set it up so one of those IV lines could be used for my scan contrast injections later in the day.

I had CT scan first, from neck to knee, and then an MRI of my brain and my liver.

All told I was at NCI for 10.5 hours for these three procedures (they took my blood during apheresis as well). I was beat, so we had dinner at the Tastee Diner around the block from our hotel. Food was decent diner food, but the highlight was the people watching and ambiance.

This morning we had a very nice brunch at the Louisiana Kitchen with friends Mark and Resa – whom we knew from many years ago both from Bonaire and the BonaireTalk on-line community Linda and I had started a dozen or so years ago. We’ve been corresponding frequently in the last couple of months, and it was nice to see them in person.

And this afternoon (I’m being extra wordy because I’m working to build up the tension to the information you are all really interested in) we met with my doctor and medical team to learn what the scans revealed. First, the dietician came in and when we explained all that I was able to eat, and how well my taste buds were recovering in such a short time, she was elated, telling me that I was months ahead of where she expected when I left the clinical facilities three weeks ago.

Next in was the research nurse managing the clinical trial. She was happy to see my progress in terms of eating and fatigue, but cautioned me that in her experience, everyone who has had the radiation so far has suffered significant set-backs after the first two to three months after treatment. She indicated she would be happy if I proved her wrong, but thought it was much more likely than not that I would have a serious crash in terms of fatigue and other symptoms by the end of the year and that recovery would be rough for a bit at that point. Linda and I are both hoping that she’s wrong, since I’m already at the same equilibrium I was at before treatment, at least in terms of being a bit of a couch potato.

And finally, it was time for my doctor. She expressed genuine joy and happiness at how well I was doing physically, indicated that while my blood work showed a few below-normal indications, it was perfectly normal and stable for where I was at in terms of recovery. Then she gave us the scan results: No new growths, and the tumors they had been tracking for size showed an average decrease in size of 4.4% compared to the scans taken a right before my treatment started, and a week before I got my TIL cells. Considering my tumors had a week to grow after that last scan, a 4.4% reduction actually translates to something a little bit more numerically, we believe. And no new growths is excellent news too.

We asked her about the tumors in my thigh that have disappeared, and she indicated they had been too small to measure previously, falling within the measuring margin of error, but indicated this was a positive sign. She also confirmed she could see on the scans that the baseball-size lump I had in my thigh had gone from rigid to mushy (same as we had discerned by feeling the lump over the last few weeks), and appeared to be becoming more cyst-like instead of tumor-like, which suggests that the body is working to dispose of it.

While 4.4% percent may not seem like much, considering how rapid the growth and spread of my tumors had been up through the end of September, it’s an amazing achievement.

My next appointment for scans and meeting with the doctor is set for December 5th & 6th, and that meeting should shine further light on how well my tumors are shrinking and keeping me on the path to NED.

In a related matter, we resolved a problem with our insurance company this week – they appeared to be trying to prevent me from renewing my health insurance for next year – but that has now been worked out and I am renewed for 2012. One of the requirements for renewal (as this policy covers U.S. citizens who reside outside the U.S.) is that we be residing outside the U.S. on the renewal date, which is December 28th. As such, we will be spending the end of the year, and the beginning of next year – with my doctor’s blessing – back home on Bonaire. We will arrive on Christmas weekend and leave a week after New Years. For us, being back on Bonaire will truly be a reason to celebrate. And my biggest wish for that time is that I will not be suffering the extreme fatigue the research nurse warned me about, so that we can spend some time catching up with friends and home.

 

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.

 

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 12 – Happy, Happy Day!   October 18th, 2011

What a difference a day (and night) can make. My doctor came into my room early this morning to let me know that my neutrophil counts have soared to 6,960 from yesterday’s 1,960. As a result I was declared non-neutropenic, the warning signs were removed from my door, all my IV anti-biotics were stopped, and I’m down to a couple of pills a day. I will also no longer be getting the Neupogen shots, so my neutrophil counts will like drop a bit tomorrow, but will still be well above 1,000.

Also, my platelets are on the mend by my own body. I was at 20,000 yesterday, and 21,000 today. Still quite low, but improving on their own.

A little while later, during rounds, I was also informed I would be getting my Hickman port out, so I won’t have to deal with maintenance of the tubes in my chest anymore – because they won’t be there! I had expected to deal with them for another two months, but apparently they will no longer be necessary.

Talk about being surprised and elated!

I have also been scheduled to return for my first scan post-treatment on November 9th, so I will be flying in the day before with Linda and out on the 10th.

We fly home to Boston on Thursday afternoon. Tomorrow is a day of observation to make sure everything is still okay. It will also be a day of packing, as I have collected a lot of the comforts of home here – like towels, a bath mat, a duvet, collapsible notebook tables for use on beds, etc.

I also decided I need to get more protein and fat into my system, so instead of broths, I tackled a slice of pizza (managed to eat only the cheese, as the sauce was a bit too spicy for my mouth, the bits of sausage got too spicy over time, and the crust was too dry) and some reheated fajita beef (went down pretty well). The girls are out right now gathering a freshly roasted (to meet neutropenic diet requirements) chicken for us to share. I hope that goes down well too. And I started the day with a protein shake. So my food and caloric intake is improving, and I’m feeling more energetic for it.

Also, being non-neutropenic, I managed a nice couple hour nap this afternoon snuggling closely with Linda (who napped well too).

All in all, a wonderful day.

I’ve been told I can even have dinner off-campus with the family tomorrow night! So tomorrow should be a great day too (I will be getting my port out then as well, so perhaps a little bit of pain, but worth the reward of being free of alien parts in my body).

Yay!

 

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.

 

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.

 

Day 9 – Immune System Returning   October 15th, 2011

My hopes for a start to the recovery of my immune system have been fulfilled. Yesterday my white blood cell count was hovering between zero and 50 lymphocytes (4000-6000 is normal), and this morning I was at 130, and by evening up to 330.

I may or may not have any countable neutrophils, but with the WBC lymphocyte count increasing, I will start having them soon – tomorrow or Monday for sure. The neutrophils tend to be in proportion (70% or so) to the white blood cells (lymphocytes), but not necessarily when the numbers are small.

In order to be discharged I need to have three days in a row where my neutrophils number 1000 or more, or one day where they are 5000. And my platelet count needs to be steady above 20. I may be out as soon as Wednesday, but it could also be next Saturday, depending on how things go.

While I had a couple requisite naps, my energy levels were definitely a bit better today, and I even got to go outside (with sterile mask on) to enjoy a bit of the sunshine. Haven’t experienced any part of the outdoors in over two weeks at this point. I was pretty wiped out after both my slow walks with the girls (hence the naps).

After my afternoon blood work, I ended up with another 6 unites of platelets, as I was back down to 17,000 (from 23,000 this morning). And I was given magnesium via IV to compensate for a small deficiency earlier in the day.

I still am maintaining a mostly mild fever (99.0-100.6F/37.2-38.1C), which appears to not be unusual for someone who went through the TIL/TBI treatment (and is even considered a likely sign that the TIL are hard at work).

Several of you had asked question about broths and food in general with respect to my mouth dryness and soreness. I am finding I am having an easier time with warm liquids than with room temperature or cold. And thinner liquids create less of a mucous issue than creamy or thick ones. So clear broths with added material (meat protein, maybe some noodles) work pretty well as does warm tea (room temperature tea is not bearable). Solids outside the broths are not very good at this point because they get stuck in my mouth and require lots of water and gagging to get them down.

Linda had me try a thin butternut squash soup today, and I managed to get a fair bit down, but it was still too thick to do again in the next couple of days. We also experimented with apple juice. I couldn’t stand the bitterness and acidity of cold apple juice when I tried it this morning, but after Linda heated it up in a microwave, and it became more more palatable. Go figure.

The respiration department here at NIH also dropped off a new toy which might make sleep easier – it’s a vaporizer that uses oxygen to mist sterile water into a tube and attached mask. It’s very loud, but I have high hopes for it working tonight now that I understand how it works (although I think I look a little alien with the mask on). Would be great to maintain moisture in my mouth and nasal passages while I sleep.

I will leave you all with a webcam capture of the latest evolution of my Mr. Clean look. And no, no plans for any earrings (sorry Dara) :-)

Going for the Mr. Clean look, sans earring

Going for the Mr. Clean look, sans earring