Finding Comfort from Cancer in “Not Too Bad” and Nesting   April 18th, 2011

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…

 

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This entry was posted on Monday, April 18th, 2011 at 22:35 and is filed under Health. You can follow any responses to this entry through the RSS 2.0 feed.Both comments and pings are currently closed.

11 Responses

April 18th, 2011 at 23:04
Kay Powers Says:

Jake:
I look forward to your updates on your blog. I am quite familiar with the ct scan and the hot flash. I did these scans 4 times a year for the first 10 years after I was diagnosed and then 2 times a year up until 4 years ago. About 4 years ago, I all of a sudden had an allergic reaction to the iodine contrast. So after the reaction they advised me that they would have to pre-medicate me prior to my future ct scans. Well after 2 more scans I was still having a reaction to the iodine contrast. So I can no longer have the ct scan with the iodine contrast. It was so strange that after all those years doing the ct scans and all of a sudden started having an allergic reaction. Your positive attitude and outlook will beat this disease. God Bless!

April 19th, 2011 at 07:59
Judy Workman Says:

Wonderful news, Jake! I’m glad to hear everything is coming together for your new “nest”. Having a stable place to come home to and to have family there is so comforting and can only help with healing. Welcome to the world of menopausal women–hot flashes are quite the experience :) I’m sorry we will miss you on Bonaire this year, but hope to meet up next May instead. You, Linda and the kids are in my prayers. Best of luck in the next round of surgeries and treatments.
Hugs, Judy

April 19th, 2011 at 08:22
Jarmila Richter Says:

Jake

I am keeping eye on your blog all the time and what I see looks good to me. You are handling your situation real well.

Love, mom.

April 19th, 2011 at 09:42
Marion Wilson Says:

Jake – as far as I am concerned, this is all positive in regards to your scan results! Keep it coming!

As to the CT scan – the one I had done in CUR last January was a completely different process. I had to check-in to the hospital the day before my scan, where I was presented with a small brown bottle containing 30 cl of a clear, syrupy liquid and a small measuring cup (no indication of what it was – just the instructions on the label). Instructions were to take precisely 3 times a 10 cl dose from the time of receipt (around 11am) until I went to bed. Tasted of aniseed – which I hate! The next morning I was to report in at 10 am, where I was given a litre of a diluted solution of same, to drink within an hour. Once inside the CT scan room, I was also fitted with an IV of what must have been a similar solution as I had an immediate rush of aniseed taste to the back of my throat/nasal passage – most strange but not as uncomfortable as your experience. I had no hot flash or sphincter/urinary flash! As someone who has experienced menopausal hot flashes – mine were nothing like your experience. Mine were (and still are – as the medication I had to take before (Arimidex) and now (Femara) mimic the symptoms of menopause and are just sudden, total body sweats – and I mean very sudden and total body – it feels like you are leaking sweat from every pore in your body. Mine last anywhere between 3 and 5 minutes.

Anyway, enough of that! I too have to have another CT scan in May to see if my lymph nodes near my left clavicle (where my cancer came back) have changed in size etc. since taking the Femara. I will keep you posted!!

Enjoy the nesting next week and keep all of these positive outcomes of the last day or so as indications of success of things to come!

Love & big hug, Marion.

April 19th, 2011 at 17:38
Jake Richter Says:

Marion,

Thanks for relating your own experiences. Interesting how it’s different for what they do in Curacao. I wonder if the oral contrast you’re taking is similar to what Kay related above, now that she is allergic to the injected iodine contrast. Good luck with your next scan!

Love and hugs from up north!

Jake

April 19th, 2011 at 10:44
Jackie Says:

Hi Jake,
I’m glad that everything is going in the good direction!
Brasa Jackie- Bonaire.

April 19th, 2011 at 19:10
Tara Smith Says:

Jake,
It all sounds positive ~ especially having the family back as one.
Thank you for your writings. Society has such a foul way of labeling things, threby setting a negative tone from the start. More attitudes and open conversation like yours removes the stigma.

Enjoy your respite and sending much healing light for your May 9th milestone.
Tara & Guy

April 19th, 2011 at 19:15
LaDonna Says:

you’re welcome :)
see you Thur

L

April 24th, 2011 at 23:58
Liz Ginocchio Says:

Jake,

Can totally understand the “Not to Bad” comforting under the circumstances. Regarding the contrast CT, as a person who has experienced both the same side affects you did, and then having menopausal “hot flashes” I can tell you the only similarities are the feeling of warmth starting in the neck then working the way up to the face, ears and head. I remember that feeling of “omg” when I had the same feeling from the waist down, and more relieved when nothing actually happened. I am so glad that you are beginning to “settle” into your new nest. The less stress, the better. Having family close is a wonderful comfort and a great support system. Ed and I will keep you in our thoughts and prayers for May 9th. My surgery was this past week, (colostomy) and tomorrow we get the schedule for radiation and chemo. If you do need to go this route, if there is any insight I can give, depending on meds they give, I will be happy to share experiences and or reactions with you. I do recommend that if you will be having chemo that you have a “power port) http://powerportadvantage.com/about.html installed just under the skin in your chest to a vein for easy access. They can do chemo, draw blood and give contrast for scans and xrays. Once again God Speed to you, Linda and the kids. With a positive attitude as you have, you will fare just fine.

April 26th, 2011 at 22:11
Ellen Horne Says:

Jake,

Am cheering for you from the sidelines (and checking my husband’s moles!).

We may get up to Boston before too long – my husband’s sister just moved there with her family. I’d love to see you and give you a big hug.

Keep writing, please! I love your thoughtfulness and I agree that sharing your experiences may help others.

Ellen

April 29th, 2011 at 16:14
Jake Richter Says:

Liz – thanks for the tip.

Ellen – a big hug (or any hug) are always welcome! Please keep us in mind when you next visit Boston!

Jake