Recognizing My Own Limitations While Getting Melanoma Treatment   July 21st, 2011

Thanks to inspiration from a discussion with my friend Ellen Horne at WNYC, I’ve decided to try to complement my written blog with a video blog. Should you find yourself bored by reading my missives, an abridged version of this written post can be found in the video blog, accessible below.

I just returned from several days in New York City, where we dined very well at mostly excellent restaurants, explored a couple of museums, attended a wonderful musical, and met up with friends we hadn’t seen in a while (and missed several others, unfortunately).

It’s not clear that the trip would have been as enjoyable had I not had my Sylatron immunotherapy treatment for my melanoma cancer suspended due to an alarmingly low white blood cell count (see the previous post). I also took the step last Friday to try acupuncture as a way to reduce both the fatigue and appetite loss the Sylatron had induced. I believe the combination of the acupuncture and the lack of a fresh dose of the drug last week allowed me to eat my way through my New York stay.

At the same time, I found that my energy reserves were still not the best, and that I required daily naps. The realization that I might need regular blood tests during the course of my many month or even multi-year treatment with Sylatron, along with the inherent side effect of fatigue, led me to another conclusion, supported by my doctor. Namely, that my plans for an expansive three month trip to Asia and Australia this autumn would not be really viable. So we’ve unfortunately had to cancel our planned tour to Vietnam and Cambodia in November, and stopped all of the related trip planning to the other side of the world. All to be revisited at some future date, hopefully.

This decision goes deeper than might be apparent, as it is a sign of things to come, namely the inability to plan grand and lengthy things because there is so much uncertainty, even in small things, beyond a certain distance in time.

Mark Beckelman, the recently deceased mentor and friend I mentioned in my prior post who gave me hope when things seemed bleakest after my diagnosis, shared with me that he was happiest when he was living in the moment and living his life. I have come to learn that “living in the moment”, as Mark described it, is pretty much a necessity when you have a life threatening disease, especially where the treatment is fluid, affected by physiological factors as well as chance. Planning for more than three months into the future probably falls outside of “living in the moment”, so, at least for now, I will try to limit my planning to the nearer term, and in smaller chunks that can be more realistically achieved even when other factors change.

On the bright side, as we have proven to ourselves with this week’s NYC trip, I can travel closer by (this hemisphere), and will therefore, hopefully, be taking short trips around North America, including a trip to the San Francisco area in late October which will include (fingers crossed) a dinner at Thomas Keller’s The French Laundry, and visits with many friends we’ve not seen in a long time. My radiation treatment should be over by then (more fingers crossed), and hopefully I will fall into a more manageable routine with less external variability.

With respect to my treatment, I went in for a blood test today, and my white blood cell count had returned to a low but manageable 2700 cells per cubic milliliter (up from 1900 early last week), and my oncologist said I should resume the full induction dose today, not a reduced dose as I was previously told. I will get tested again in about 11 days, as part of a meeting I have scheduled with him the afternoon of August 1st.

At that meeting we will also go over the results of my next set of scans, scheduled for next Wednesday, which will hopefully show that I have not had any visible spread of my cancer to the rest of my body.

These scans, which will take place every three months for the next couple of years after detection, and then get spaced out to being semi-annual or even less frequent over time, are an event of high anxiety for every cancer patient I have spoken to or whose words I have read. They serve as a double edged sword, as the hope is that the scans will be clean, reaffirming that the cancer treatment has worked (and is working), but at the same time they could be the harbinger of really bad news, namely that visible tumors have appeared.

This will be my second set of scans since my diagnosis, and I’m anxious and hopeful that I will hear that my scans are clean (again) when I get the results back from my oncologist on August 1st.

I also meet with my radiologist next week to start planning my radiation treatment for trying to kill any cancer cells that might remain in the vicinity of my excised lymph nodes in my right groin. Assuming nothing unexpected happens between now and early August (like bad scans), this will result in more scans to create a simulation of my treatment areas as well as a body mold to hold me firmly in place while a computer controlled radiation emitter accurately zaps only those parts of me that need the treatment.

More on that in my next post, as I learn about the process.

 

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This entry was posted on Thursday, July 21st, 2011 at 18:59 and is filed under Blogging, Health. You can follow any responses to this entry through the RSS 2.0 feed.Both comments and pings are currently closed.

17 Responses

July 21st, 2011 at 19:29
Liz Says:

Jake, sorry you can’t enjoy your “far away” trips at the moment, but am sure you will savor your short term! I’m heading to Atlantic City to see Jeff Dunham (ventriloquist/comedian), I’ve so wanted to see him for years, so it is a great treat, we will stop in DC and spend time with my son and other family members for a few days…so excited.

How long is your radiation treatments to last? I did 5 weeks at 5 days a week. I also had groin treatments for lymph nodes. I think it was 2 weeks into treatment when I started having burns and blisters, my skin from my hips to mid thigh turned a dark brown, to black in some areas as well. These can be extremely painful. I have to recommend a transdermal pain med that worked wonders. It is called a duragesic patch and you can start with 25 mcg. I had 50 mcg to start then down graded to 25 as my skin got better. You put the patch on, I kept mine on my lower back, alternating sites when changing (every three days) and the 1st dose takes 3 days to kick in. Just a consideration for you, you’d be surprised how sensitive the groin can get in radiation treatment. Also expect increased fatigue after about 1 week of treatment. I will be praying for your scan to come out clear. Mine next one will be in September.

Liz

July 21st, 2011 at 19:32
Jake Richter Says:

Liz,

Thanks for the tips! I’m hoping for merely mild symptoms from the radiation, but who knows? I was told it would be for 4-6 weeks, and expect I will learn more next week.

I’m glad you’re getting a chance to get out a bit and have some fun after all your treatments!

Jake

July 21st, 2011 at 19:35
Liz Says:

Loved the video blog….much more personal….

July 21st, 2011 at 19:44
Liz Says:

I truly hope you do experience mild symptoms as well, I had pin point gamma treatment and my inguinal left lymph node was effected. The only side effect I had from the pain patch (and I do pray you don’t need it) was orthostatic hypertension (I’d get dizzy from sitting/lying to standing). It was well worth the pain management. You look great! It seems that even though we have totally different cancers, we are going through similar treatment (you immuno, me chemo)with similar side effects. My cancer is similar to yours in the fact they can’t just take the tumor out, say they got clear margins, have treatment then go on with my life and have yearly checkups and we have been staged the same. I have to go for scans, testing every three months for the next 2 years, then every 6 months for the rest of my life. You are in excellent hands though, dont’ know by the hospital in Boston was just rated #2 in the nation for care, expertise, etc just behind John Hopkins. Now that treatments are done,I will have one surgery to do repairs and get me ready for my final big surgery in November…hoping to get back to Bonaire in Jan or Feb…2012…Hugs

July 21st, 2011 at 20:26
Mercy Says:

Jake, you sure look good, would never know you were sick looking at the video. I liked seeing you on there, it is more personal. I’m sorry you have to cancel your trips abroad. I will always be thinking healing thoughts for you and no pain!

July 21st, 2011 at 20:50
Sandy Says:

Jake, thanks for sharing more of your journey. Love your “Warrior” shirt! Whatever choices you make, wherever you can travel or what you decide to do, all one can ever really do is live in the moment anyway, right? Maybe I will see you when you come to the Bay Area.

July 21st, 2011 at 21:38
Denise & Teddy Says:

thank you for your continuing up dates . . .
big hugs

July 21st, 2011 at 22:33
Dara Says:

Jake – So good to “see” you!!! You’re looking really well and I love the shirt! Outlook is at least 50% of the battle. You are in the mecca of mindfulness and training in mindfulness based therapy for coping with stress/pain. I hope you might take advantage of that – just give Jon Kabat Zinn a call. I bet he would probably work you in for personal consultation, and do a personalized workshop for the whole Richter tribe… just because that’s how things work for you 8-) [me, on the other hand, he’d offer to send a CD if I were lucky]. In the meantime all of you remain the subject of my meditations.
No two ways about it – accepting that you don’t have the stamina you did have is really hard. Taking naps, not being the superstar of productivity, not feeling great, not going above and beyond….it just sucks. But it’s realy, really important to listen to your body when it says “rest”, or “stop” or “that can wait until later”…it will open the door for experiencing life differently if you don’t fight “what is”. Or at least that is what I keep telling myself as I continue the recover from ‘care giver syndrom’ and search for the grace to accept my current limitations….I will hope the same grace for you. Being in a place of emotional peace allows all of your energy to be focused on boosting healing capacity where it can do the greatest good.
Wishing you peace of mind – and hoping to see you soon.
much love to all of you, Dara

July 22nd, 2011 at 04:19
Mike Says:

Hi Bruder!
Du siehst sehr gut aus! Lese immer Dein Blog und bin bei Dir. Die Idee mit einem Videoblog ist sehr schön, so kann ich Dich auch mal sehen! Wir halten Dir alle in Berlin die Daumen! Kuß von Elli, Mat und mir!

July 22nd, 2011 at 10:53
Tish Says:

Great warrior shirt, Jake, and fine advice from everybody; especially love Dara’s support. Your terrific attitude makes such a difference. Enjoy life’s every moment and feel confident big travel lies in your future.
Many hugs,
Tish

July 22nd, 2011 at 10:56
Howard Sobel Says:

Jake, your looking good. Love the shirt too. Sending warm winds of good Karma. We have a heat wave going on down here in Delaware.

July 22nd, 2011 at 10:56
Leslie Says:

Nice shirt!

July 23rd, 2011 at 13:19
Jake Richter Says:

I had a number of very interesting responses to the shirt when I wore it out yesterday, including a construction worker that wandered into the holistic center I entered to get my acupuncture who told me that his buddy had Stage 3 melanoma, and asked if it was survivable. I responded that I had the same diagnosis, and was aiming for survival too. That seemed to be enough for him, and he left. I also had a disproportionate number of bright smiles from women passing me on the sidewalk. Any ideas why that would be?

Jake

July 29th, 2011 at 16:19
Karen Says:

Jake….I can’t begin to thank you enough for all of the effort you have put into chronicling your diagnosis and subsequent treatment of melanoma. I am a 52yo woman and was just recently diagnosed with melanoma. Eight years ago in 2003 I had a small mole removed from my upper left back and the pathology revealed it was melanoma. We caught it very early on and I had a wide area excision. The pathology from the wide area excision indicated that they had gotten all of it.

On the 25th of June this year, I found an enlarged lymph node in my left arm pit. I went to the doctor and have been through a series of tests….CT chest and abdomen (clear), Mammogram (clear). Went to see a surgeon and her recommendation was to do an excision of the lymph for biopsy. I had the surgery on July 22nd. I have since gotten the pathology back with a diagnosis of melanoma. A second surgery is now planned where they will remove the rest of the lymph nodes from that area. I am going in for a PET scan which will hopefully reveal nothing else. I am also waiting on my appointment with an Oncologist to talk about further systemic treatment.

Reading your blog has provided me with so much information that is relevant to what I currently find myself dealing with. As I said, I can’t begin to thank you enough. I hope that both of our paths will continue down the road to wellness and many years of adventures we’ve yet to even consider. I will continue to follow your blog and hope the best for us both!

August 1st, 2011 at 16:29
Jessica Says:

Even though I still read through your entire blog postings, I really enjoy getting to see and hear you. So please do, if you can, keep up the vlogging. xo

August 1st, 2011 at 16:35
Cynde Says:

Jake, I just caught up on these. I agree with the others, it’s great to “see you and hear you” for those of us who truly love you and can’t see or hear you in person right now.

we love you, and keep the fight going Poseidon cancer warrior! You know you will ALWAYS be Poseidon to me :-)

Love you my friend…

cynde

September 8th, 2011 at 16:38
Tia Says:

I had problems with practicing meditation up until recently. I kinda couldn’t focus. I guess staying focused is the key and that’s why meditating doesn’t work for everyone. I found a quiet place for me in my apartment and that gave me the extra focus I needed. It’s way better now!