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.

 

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…