Jake at the Elliott Hospital   May 21st, 2012

Today was a tough day. After a nice lunch with Jake’s brother, Dave, Jake started experiencing strong seizures. We called 911 for an EMT/ambulance. Thank you Derry Fire Department for being so kind, fast, and professional. And thanks to Dave for driving the kids and I to the hospital. Thanks to  my mom for driving Dave back to his car and taking the kids home, plus coming back to the ER to wait with Jake and I until his room was ready.

We spent most of the rest of the day in the ER waiting on test results. We are thankful – no more seizures at this point. They have started Jake on a new medication aimed at preventing more. Jake and I will be meeting up with various doctors tomorrow as the CT scan did not reveal anything new that may have caused these seizures.

Jake was groggy due to the medications, but demanded a meal in the ER so that is a positive sign. He also ran through his list of the things I should bring him like his special warm duvet comforter and such. At this point, I don’t know how long Jake will be in the hospital.

I apologize in advance to family as this may be the first time you hear about this especially if David has not been able to contact you yet. I just need to write this entry now before tomorrow when I will likely be spending most of my day in the hospital speaking with the doctors.

Linda

 

 

From Krystyana…

Our move to Chester went quite smoothly and we send many thanks to those who helped.

Although we were filled with relief that the move was over and we had most furniture in its proper place, it was not to last because we soon found out that water was leaking in the basement from the septic system…at 10pm on a Saturday. We had to skip showers that night and there was much anguish over that, mostly from me. I was the lucky gal attempting to take the first shower when our houseguests hollered up about a lovely water feature they had found in the basement. Needless to say, the first order of business the next day was to find a plumber working on a Sunday. The plumber fixed the problem temporarily but told us we had to replace the septic outflow pipes and we were not allowed to flush any toilet paper or wipes until that was resolved. We had to wait a week and get quotes from plumbers to fix the various plumbing issues. It was decided by my mom that my dad would probably prefer being away from the house during the septic replacement as it would take a few days and possibly be loud and smelly. And so we stayed at a hotel for two nights with my dad in a room with a Jacuzzi tub and gas fireplace in it. Dad turtled in the tub and we had to call in Bas to help get him out of it. Thankfully, the whirlpool in the pool room worked out better and Dad could get in and out under his own power. Another issue that sprung up midweek was that our oven was not working properly, while in the attempt of cooking meat within it. And we are still working on getting a motor for the soft tub my parents ordered because the delivery people showed up with the correct sized tub but incorrect size motor.

Despite all that, my mom and I have unpacked and organized quite an impressive amount while installing various fixtures.

My dad had his PET/CT scans on April 18th in Chelsea and his doctor’s appointment was April 23rd in Boston. His doctor said tumor growth was on going but seeing my dad, he felt very positive about my dad’s progress. The doctor also had the amount of daily steroids reduced. My dad is doing a lot better in terms of his energy, speech, and reactions, from my point of view. He is eating more and making an effort to do so as well as making an effort to go out and exercise.

His next scans and doctors’ appointment will be in mid June and if his doctor clears him, we will be going to see the Arctic this summer to see the polar bears.

 

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.

 

I find I have been remiss in promptly relating the latest news in my on-going challenge in dealing with my cancer diagnosis, and for that I apologize, as I have received a number of anxious messages from friends.

Let me start this entry by saying that the scans I had last week came back as “not too bad”. One might normally see “not too bad” as being “not so good”, but in this case, it was a major relief.

The brain MRI I had “came back clean”, which, far from suggesting I am empty-headed, confirms the radiologists found nothing suggesting the cancer had entered my brain. This is a truly good thing.

With respect to my chest and pelvic CT scan, let me first say that after dealing with two huge bottles of barium sulfate (flavored but chalky – I recommend the berry over the banana) over an hour to help provide better details of my innards, I was then also injected via an IV with an iodine contrast solution to help show my vascular system in the scan.

The injection of the contrast is best described as a surreal and totally uncomfortable process, as it causes a hot flash to rush through your system, causes mild dizziness, a weird flavor in your mouth, and – the most disconcerting thing – a flash of heat to one’s sphincter and urinary system making one wonder if there will be some sort of unintentional release of unwanted substances (fortunately, that did not happen).

The whole hot flash, from start to finish lasts less than a minute, but it’s really not fun at all. I’m curious if there’s any similarity to a menopausal hot flash – comments from folks who have experienced both are welcome.

Unfortunately, I will have to repeat the CT scan and iodine contrast and barium sulfate ingestion again in three months. That’s because the CT scan found that I had mildly enlarged bilateral axillary (in both armpits) lymph nodes – 1 cm in my left armpit, and 0.9 cm in my right armpit. Not enough of a concern to deal with now, especially as my lymphatic system is a bit upset after the removal of a lymph node, but that will need monitoring down the road, with the aforementioned repeat CT scan three months from now.

On a similar note, the CT scan also found that the lymph nodes in my right groin were enlarged. Again, not surprising, but these will be taken care of by my May 9th lymphadenectomy, which will remove all the lymph nodes in my right groin (and thus the reported enlarged lymph nodes there as well).

So, that was the “not too bad” part of my scan results. The good part of the CT scan was that no other signs were found that the cancer had entered my organs. In other words, no metastasis (pronounced “metahss-tah-sis”, by the way). It should be noted that the CT scan can only show if things are enlarged or somehow misshaped or of the wrong size – it cannot detect cancer, so my scan showed all my organs were normal in size and shape. I will take that as most excellent news, and cause for mild celebration (which I will defer until I am reunited with my wife and kids in less than a week).

The other thing that happened to buoy my spirits was word that we had been approved for the apartment in Boston we wanted to rent, located in the West End of Boston on the 37th floor of a 38 floor building and great views. Better yet, the apartment is a mere 7-10 minute walk from Massachusetts General Hospital. The apartment provides me with a comfortable and convenient “nest”, and should be a rather grounding and stabilizing support during my upcoming cancer treatments.

On top of that, today I managed to get approved for a Zipcar account, even with my Bonaire driver’s license, with Zipcar cars being available in the garage in our apartment building. For those of you not familiar with Zipcar, it’s a highly automated car rental service which allows you to rent a vehicle for as little as an hour, and has dozens of pick-up and drop-off locations in major metropolitan areas.

After a lot of phone calls and e-mails, I managed to get our rental furniture scheduled for delivery to the apartment this Wednesday, and with the help of a dear friend (thank you LaDonna!) and a couple of hired strong men, I will be moving into the apartment in Boston on Thursday, with my wife and kids and cat arriving from Bonaire on Sunday afternoon.

It’s nice to have all these pieces come together so well (although not easily) after all the stress and anxiety I went through last week.

At this point, other than weekly appointments to check on my skin graft (which is healing, but slower than I would like), I don’t have any serious medical issues to deal with until my surgery on May 9th.

However, it doesn’t mean I will be silent here on my blog until then – I have a number of issues I want to raise with respect to dealing with cancer, including perceptions, labels, books, cellular biology, adjusting to unusual environs, and alternative treatments, among other topics.

So stay tuned…