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!


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This entry was posted on Saturday, November 5th, 2011 at 18:39 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.

32 Responses

November 5th, 2011 at 18:47
LaDonna Pride Says:

I cannot wait until next week…..I want to give you a BIG celebratory hug!

Love you!!!!

November 5th, 2011 at 18:49
nell Says:

Ecstatic to read this post! To NED!!#

November 5th, 2011 at 18:50
Wallace Says:

Awesome. Continuing to wish you well.

November 5th, 2011 at 18:51
hannah Says:

Here’s to NED! Glad to hear some news that might look good!

hugs from here….hannah

November 5th, 2011 at 19:25
Denise & Teddy Says:

Yayyyyyyyyyyyy <3 Jake thank you for updating us. I did not want to email you to ask 'cause I figured you could use the family time to just deal with it all and to enjoy their love and attention. I am very happy that all is progressing well. Of course, as you know, I expect only the best as I refuse to accept anything else for you. Good luck with the scans.

To NED with more hugs..

November 5th, 2011 at 19:35
Roy Wickham Says:

Ayup Jake great news,

…to NED

November 5th, 2011 at 19:39
Cynde Says:

Jake, tears of joy are flowing…you seize to amaze me with your positive attitude…makes me fell like a slacker! However, I would expect nothing less from you….Poseidon :-)


Hugs and love to you, Linda, Krystyana, and Bas :):):):):)

November 5th, 2011 at 19:39
Cynde Says:

*feel, not fell haha!

November 5th, 2011 at 21:03
Ann Says:

Woo hoo! Absolutely! Hugs and love to you all and to N.E.D.! It takes hard work all around and you have all got what it takes!

November 5th, 2011 at 22:59
JW Roth Says:

Wow….. awesome news!! I just lifted my glass to NED.

November 5th, 2011 at 23:19
Greta Says:

Awesome news! Thanks for sharing! We will continue to pray for you guys. We love you! To NED!

Greta, Trent & Grant

November 5th, 2011 at 23:51
dara Says:

That is absolutely the best news I’ve had this week! I am raising a particularly nice glass of 2007 Beringer Private Reserve Chardonnay – to NED!!!!

November 5th, 2011 at 23:55
Kathleen Dewhurst Says:

Thanks for writing. I’m so happy for you
to give a report of good news.

November 5th, 2011 at 23:56
Kathleen Dewhurst Says:

I’m so happy for you
to give a report of good news. Thanks for writing.

November 6th, 2011 at 02:59
Martin Says:

Yeah, this is great news! All the toasts to NED must have been helping, but most important the positive aditude and all the love from your family!

Lots of love from this side of the ocean,

Angela and Martin

November 6th, 2011 at 03:41
karin Says:

Wow, great to hear! tfs

November 6th, 2011 at 05:42
Kitty Says:

Awesome news; Hurray!!
To NED and recovering taste buds! :-)

Much love & greetings to you, Linda, Krystyana & Bas

November 6th, 2011 at 06:18
Jarmila Richter Says:

reading about your progress I feel good and look forward to hearing about the scan results next week.
Your father and myself are still waiting for a nice photo of you!
Love, mom.

November 6th, 2011 at 06:52
Todd Burdette Says:

Great news for you Jake shat thrill to see progress.
This is encouraging for both you and others with the same disease.

November 6th, 2011 at 12:01
Mercy Says:

My healing thoughts are still with you and considering the great progress you’re making, all the good wishes are working! Another toast to NED!

November 6th, 2011 at 12:45
Tracy Griffin Says:

Congratulations on such great news! We continue to think about you and send positive wishes your way on a daily basis! I’m so glad to hear you are both able to eat and enjoy food so much more than at NCI, and even more so that the tumors are SHRINKING!! Looking forward to hearing about the scans. TO NED!!! And, of course, to living in Bonaire again soon! :)

November 6th, 2011 at 13:39
Darlene Ellis Says:

Great to hear that your healing as expected. Can’t wait to hear the scan results. Sending you and the family great big hugs!!!

November 6th, 2011 at 16:05
Corky and Sy Says:

We’re raising a glass to NED and to you, Jake, and Linda, Krystyana and Bas. This is great news that we hope will keep getting better and better. We’re thinking of you back home on Bonaire where we last saw you. L’chaim … to life!

November 6th, 2011 at 21:11
Glen Reem Says:

‘Twisted fingers’ to good news.

November 6th, 2011 at 21:12
Barbara Leary Says:

NED NED NED….that’s what I was thinking during our visit, seems I could sense the retreat of the tumors just seeing how good you were looking…..
and I want to hear “I hit 1800 kcals” (minimum) soon (once a nurse always a nurse)
Hugs to you all!

November 6th, 2011 at 21:40
Margreth Says:

Just keeo up the good faith and a lot of hugs for the whole family. We keep on loving you all.

November 7th, 2011 at 09:00
Cecil Berry Says:

Excellent news Jake, die melanoma die. To NED.

Glad to hear the taste buds are coming back, I know how important that is to you.

November 7th, 2011 at 10:43
Meryl Says:

Steve was just asking about you yesterday..glad to hear your update! Always wonderful to see your blog! Love you…awaiting the results of next week! xxoooo

Meryl and Steve

November 7th, 2011 at 11:35
Divepatty Says:

Great news……I hope you will be back in Bonaire during the winter – I make a killer lasagna and you will be the recipient of some…….

November 8th, 2011 at 13:28
Colleen Warshafsky Says:

Excellent news Jake!!!!!

November 9th, 2011 at 20:57
Margarite Says:

woohoo indeed!! Great news! Looking forward to more of the same!

November 10th, 2011 at 13:39
John L Says:

Great news. Keep on.