Coping With Cancer Treatment, Lymphedema, and Labels   July 9th, 2011

I feel that I have been a bit remiss in providing updates here on my blog, but I figure I have a good excuse – namely fatigue from my Sylatron treatment, as well as being more easily distracted by a myriad of things, perhaps again because of the treatment.

I gave myself my fourth Sylatron injection last Wednesday, marking the half-way point of the induction phase of my treatment. And while my side effects are not nearly as challenging as they could be (two of my melanoma buddies who just started their Sylatron have already experienced fevers and chills within a half day of their first injections), it’s a bit of work to overcome the side effects I do have.

Two side effects are most prevalent. Fatigue is the first, mostly taking place in the mid to late afternoon every day. The occasional nap seems to help, as does exercise in the form of long walks in and around the city. On days when I have client commitments I seem to be able to bull through the fatigue for the most part, but can’t keep that up for more than a day or two without taking a break (including naps).

The other side effect that I find perhaps more disturbing is a lack of appetite. I can eat, and I’m certainly not starving myself, but a lot of the joy I took from creating my own meals and puttering about in the kitchen seems to have dulled. Folks who know me know that food is a major passion, so to have that passion fade somewhat is emotionally distressing. Again, I can overcome it (like with the excellent home-made clam chowder I made on the 4th of July), but it takes quite a bit of effort to motivate myself. I am also able to dine out at nice restaurants, but the portions I consume are necessarily smaller than they used to be, and it takes a bit of work to get through a multi-course meal. The good news, in a way, is that I am very slowly approaching the weight I had before I was diagnosed with cancer back in March.

I have also found that the injection sites are a bit tender for the first week after an injection, and that bruising is not uncommon – both of these symptoms require that I change my injection site each week.

So far, I have had two blood tests to see how my body is reacting to the Sylatron, and these have shown a noticeable drop in my white blood cell and platelet counts, but not so low as to have me suspend treatment. I get another blood test next week along with a meeting with my oncologist to discuss my status and my upcoming radiation treatment.

One good bit of news I learned about the cost of my Sylatron treatment is that when I resume with the maintenance dose of 3μg/kg (the current induction dose is double that – 6μg/kg), the cost of the Sylatron each month will be almost half of the present $12,576.99. We are still waiting for the insurance company to even register the claim for the first month’s dose we submitted nearly four weeks ago, incidentally. Not very encouraging, although we did get a letter indicating they had precertified the drug.

Genetics

One of the things I had requested back in May was a genetic analysis of my cancer cells, in the hopes that should I have a relapse down the road, drugs which target specific genetic mutations will be available to treat my cancer. It takes about a month for the genetic testing, and I learned a couple of weeks ago that my particular genetic mutation occurs in the NRAS gene (more specifically, at Q61-182Am, with the Gln61Arg mutation).

According to one paper I have read, about 20% of all melanoma mutations are NRAS, but most of the gene-specific treatments being worked on right now are focused on mutations of the BRAF gene, which is more prevalent in melanoma. I hope, for entirely selfish reasons, that more work will be performed on NRAS mutations in the coming years, so that when I might need additional treatment, the appropriate drugs will be ready for me.

In Memoriam

The saddest and scariest thing to occur this past week was learning that Mark Beckelman had passed away as a result of his fight with melanoma. Mark was one of the leading Photoshop experts in the U.S., but more importantly, he had been an inspiration to me. I “met” Mark this past semester – he was my Photoshop for Photographers instructor at the Academy of Art University. When I expressed my concern to him this spring about not being able to complete my coursework in a timely manner due to my melanoma diagnosis, Mark volunteered that he knew my pain, intimately, as he too had gone through a similar diagnosis and subsequent surgeries back in 2006.

At a time when I knew no one else who had had melanoma and all statistics suggested it was a likely near-term death sentence, the exchanges I had with Mark gave me hope that I had at least a few more years ahead of me, at the very least. He also relayed that he had had a relapse last year and was still fighting the spread of his melanoma, and that things were not looking too good.

On July 5th, Mark succumbed to his melanoma.

Even while he was suffering from his advanced melanoma, he had time to help me come to grips with my own diagnosis. For that I will be forever grateful, and hope that I can be as strong and giving of myself as he was with me. And that doesn’t even cover what I learned from him technically.

Mark – Rest in peace, and thank you.

Lymphedema

The other situation I am dealing with is the aftermath of my lymphadenectomy (also known as a completion lymph node dissection). One of the common physical artifacts from that surgery is lymphedema, which is a swelling of the region near the place where the lymph nodes were removed due to the accumulation of lymph fluid (the fluid that drives the lymphatic system). The reason for this is that the removal of the lymph nodes ends up acting as a block or dam preventing the lymphatic fluid from taking the usual paths (which would previously have been through the lymph nodes, acting as filters).

To minimize the lymphedema I am experiencing I have to wear a compression stocking 24 hours a day on my right leg, plus exercise (walking works well for this) to keep to the lymph fluid from collecting in my leg. Additionally, I have weekly physical therapy sessions with a lymphedema therapist, who performs an hour-long lymphedema massage on me to move the pooled lymph fluid up around and past the blockage into my torso where the body can deal with it more appropriately. The therapist, Kathy, has also shown Linda how to perform the lymphedema massage, and my lovely wife has been patiently performing the massage each evening before I go to sleep, as the end of the day is when the lymph fluid pooling is at its worst (you can feel hard patches just under the skin where the fluid has accumulated).

I will mention that my lymphedema swelling has been gradually improving (getting less), to the point where the swelling in my leg is barely noticeable, but unfortunately it has not gone away entirely, and I will likely face wearing a compression stocking for the rest of my life.

One of the goals, though, is to reduce the regular swelling as much as possible before I start my radiation treatment next month, as the radiation treatment will exacerbate the existing scar tissue in my right groin, and thus lead to more blockage and therefore more lymphedema. So, the more my lymphedema can be dealt with before then, the less severe the results will be of the radiation treatment – or at least that’s the theory.

Labels

As my blog post today is a bit of potpourri, I wanted to share my thoughts on a subject that has been bugging for some time – namely labels for those with cancer, and in particular, at which point someone can be deemed to be a “cancer survivor”.

Based on my readings and conversations, I have come across four cancer classifications/terms which are applied to those with cancer:

• Cancer patient
• Cancer sufferer
• Cancer survivor
• Cancer victim

From the rather intimate perspective of someone who has been diagnosed with cancer, I find myself unsatisfied with these terms.

The term “cancer patient” is the only that perhaps best applies to me in my present situation, since I am still undergoing treatment (and will be for at least a year or more). This term is the only one that seems to have some practical relevance to what is actually going on in the life of a person undergoing cancer treatment.

“Cancer sufferer” by its very nature, suggests there is suffering involved. While the mental anguish of being diagnosed with cancer could perhaps be seen as a form of suffering, society’s use of the term suggests that the suffering should be that of physical discomfort. However, for many cancer patients, the physical suffering relates to the treatment of their cancer (such as surgery and chemotherapy), and not the cancer itself. As such, perhaps this term would be better cast as “cancer treatment sufferer”. I don’t mean to diminish the pain and anguish of people with cancer who are suffering from the actual cancer itself, but I believe that casual users of the term don’t necessarily understand the distinction between suffering from treatment and suffering from cancer.

One of my melanoma buddies recently referred to me in his missives as a “cancer survivor”, and while I appreciate the thought, I must say I do not think of myself as a cancer survivor, at least not yet. At present there is no way to know if any cancer cells remained in my body after surgery two months ago, but the probability is high that not everything was completely removed. Think of it this way – you pour fine grain salt from a height onto a smooth kitchen counter. The salt represents cancer cells. The surgery is like a large sweep of a hand and arm across that counter. What is the likelihood that a single grain of salt remains on the counter, perhaps in some corner or area where the sweeping hand didn’t come across it? If you’ve ever spent any time cleaning kitchen counters, you’ll know the probability is high that there will be at least one grain hiding out somewhere.

This is why people in my situation go through systemic cancer treatment (like I am doing with the Sylatron), and also through localized treatment (like I will be doing with my radiation treatment next month). And why I will be getting regular scans every three months for the first couple of years.

As a cancer patient, I can’t see myself labeled as a “cancer survivor” until I have hit some sort of threshold or milestone with no cancer relapse. Statistically, for at least melanoma, the most cited milestone appears to be the five-year mark, and thus, if I make it to March 2016 without a relapse of my melanoma, I will gladly start calling myself a cancer survivor at that time. Until then, I am a cancer patient (and hopefully nothing worse).

What could be worse? Being a “cancer victim”. That has a rather terminal feel to it, as it suggests that one has already succumbed to cancer. However, I have heard living cancer patients referred to as cancer victims, and I can’t imagine how painful it must be for a cancer patient or the patient’s family to have that very negative term used in relation to the living patient.

Protesting Cancer

As I have been learning over the last four months (and it seems somehow so much longer than that), cancer does not discriminate. We just don’t hear much about how prevalent cancer really is. A recent fund raising e-mail from the LIVESTRONG Foundation suggests that, based on a global survey, only 34 percent of people said they would tell their friends if they had cancer. That is truly scary.

I’m firmly of the belief that the best way to address cancer individually and as a society is to be open about it and help people realize that cancer affects us all – either via friends and family who have cancer, or when one is diagnosed with a cancer.

In that vein, I now regularly wear a t-shirt that says “Cancer Sucks” (I have five different ones), along with a black silicone wristband with the same phrase. Linda and Krystyana wear pins, necklaces, and bracelets that feature black cancer ribbons with the word “hope” to share their support. I should add that black is the color for melanoma, and that someone somewhere came up with a color coding for each major type of cancer (hence the pink ribbon for breast cancer – see http://www.choosehope.com/category/by-cancer-color-cancer-type for more examples).

The idea with the “Cancer Sucks” t-shirts, the jewelry, and the wristbands is to both increase awareness that cancer can affect us all as well as a start a conversation with others who want to express their frustration and angst regarding cancer, and show support for friends and family who have been diagnosed with cancer.

I have had dozens of strangers come up to me in the last couple of weeks to tell me that they agree with my shirt, and some even ask where I got my shirt from so they could get their own. In case you’re interested, that happens to be the web site Choose Hope (http://www.choosehope.com), which donates a part of its proceeds to cancer research.

On that note, let me leave you with a photo of my t-shirt, worn yesterday on Boston’s Beacon Hill:

One of my many new "Cancer Sucks" t-shirts

One of my many new "Cancer Sucks" t-shirts

 

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This entry was posted on Saturday, July 9th, 2011 at 11:30 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.

28 Responses

July 9th, 2011 at 11:41
Ann Phelan Says:

I appreciate you sharing…healing hugs

July 9th, 2011 at 11:43
Delno L.A. Tromp Says:

Jake mi amigo……… Hang in there and hugs to all. Be good/D

July 9th, 2011 at 11:52
Cynde Says:

Jake,

Thanks for the update. I have to admit that your post has me a little verklempt…and a little teary…maybe your friend refers to you as a survivor because of the head-on way you are dealing with melanoma…head-on. I would expect nothing less from you…I’m so sorry about the foody thing…that just sucks…

I ordered a bracelet and ball cap from that site…black…know that I think of you daily, and send healing thoughts every time.

You know if there’s anything I can do, just say the word.

Big hugs…and please keep us posted..

Love,

Cynde

July 9th, 2011 at 12:10
Kathy Hall Says:

Your sharing of your battle has inspired me, and who knows how many others, to make a dermatologist appointment and get everything checked out again. I also live in the sun, and should be more careful.

And if you haven’t yet, you should really write a book. You’re one of those who writes straight from the brain and heart to the fingers, and that’s a gift.

I think you are all doing a wonderful job of facing this enemy head-on. There is power in numbers, and the more people you have sending out energy to you the better. Yes, cancer sucks but if anyone can beat it, I’d bet on you!

Hugs to you and yours and have a nice weekend. :)

July 9th, 2011 at 12:16
Cynde Says:

Jake, I am also so sorry about your friend…I lost a good friend to melanoma 9 years ago…it does suck indeed…

July 9th, 2011 at 13:06
Denise & Teddy Says:

Hi Jake, thank you for the updates. I recently participated as a team member walking in a Relay for Life for cancer and was told I could participate as a cancer survivor. I chose not to and my relatives could not understand. While yes, I am a survivor, and yes I share my experience to raise awareness and to promote screening, I just can’t get my arms around the label “survivor” while so many continue their battles. I want to support all efforts to eradicate cancer, not beat my chest as ‘lucky me – I survive’. I know that is not the intent of course. But really, I will never understand “why me?”. Why am I lucky while others have different experiences than mine. So … ’nuff on that from me. Wear your shirt and wear that sock and continue to be the Jake we all love and care so deeply for. I just might get a shirt too, and or a Hope bracelet :-) Hugs…

July 9th, 2011 at 14:38
michael gaynor Says:

Jake and Linda, you are both in my prayers daily. Your strength is amazinng. GOD bless you

July 9th, 2011 at 15:53
Jean Says:

Hi Jake,
Thanks so much for the update. I’m glad you are having side effects that are not so bad compared to what could be… and if taking a rest in mid-afternoon helps… simply do it… often!
Just another thought with the lymphedema… has anyone suggested water exercises using your legs? I find it does wonders for me, and notice my legs and ankles swell less when I swim, even a few times a week. Just floating and kicking gently — doesn’t have to be hard exercise.
I totally understand your not being sure of the “label” at this point. I find it’s a rotating word game. When I was first diagnosed with my melanoma 14 years ago, it took a few months to even tell anyone but close family, “I have melanoma cancer”. At some point I could do that. Then, after about 9 months post treatments, I found myself feeling better, more energetic, got thru 3 more checkups, and saying cautiously, “I HAD cancer” but inside I wondered. My “five year” anniversary was re-assuring, until I heard that someone with 6 years had a re-occurance. Every year, now, 14 years later, I go thru the same emotional roller coaster.
I just had another “suspicious” mole removed from my back, and until the biopsy came back I was mentally back to being truly a “sufferer” for a week. In fact, I just went to my 2nd Relay for Life the very evening in June I had the mole removed, as an invited “survivor”. I’m not sure why I avoided that activity and term for 12 years, except that even that night, they asked me to outline my hand on a poster and list how long I was cancer-free… and I had to write the truth… “14 years?” followed by “1 day?” A week later the biopsy showed full excision of “atypical” (read “not quite melanoma yet), and a month later now, I feel like I dodged another bullet. I’m slipping back into being most comfortable simply choosing to be ME, Jean, who happens to be “living” with cancer, and not let it define me.
By the way, I do like the Relay for Life T-shirt this year… in big letters it says “Celebrate… Remember… Fight Back!” Thanks for the venue to write about melanoma on a personal level… it helps me and hopefully others. I will tell you that the “options” have advanced SO far in the past 15 years… that “fight back” spirit IS working. I never even heard of BRAF and NRAS genetic specificity until recently, and Jake, your being given the opportunity for taking this Sylatron treatment is cutting edge… Wonderful! I still actively imagine my immune system “fighting off” and killing the cancer cells… and who knows if it worked / is working… but it can’t hurt either!
So, my friend, know that I and lots of other people are sending good thoughts and energy and prayers your way, and may your experiences with this cancer have more ups and downs. Hugs and smiles do work wonders… cherish them! A giant hug to you and to Linda as well.

Jean

July 9th, 2011 at 15:58
Jean Says:

Giant “OOPS” I definitely meant more ups THAN downs… should have proofread better before submitting.

July 9th, 2011 at 17:15
bob Says:

Jake,
Thank you for sharing. Your “stories” are very inspirational.
I’m sorry that cancer has to be the reason we won’t meet this year again. I’m sure we will in the next couple of years.
Your temporarily neighbor in Bonaire

July 9th, 2011 at 20:32
LaDonna Says:

Jake…..as always I read your words with awe….and feel such inspiration. You are a wonderful big brother!

Love ya!!!

July 9th, 2011 at 21:49
Margarite Says:

Loving you and sending positive, healing thoughts.

I think it is important for anyone suffering from any malady to strive to not allow themselves to be defined by the disease. Yes you are sufferer, patient, survivor/whatever…….. but then please dont forget what you REALLY ARE!! Artist/businessman/husband/loving father/friend to us all! Thank you for that !

July 9th, 2011 at 23:04
Sam Says:

I like the shirt..but I like my hand stamp better! I want a bracelet. Love you and looking forward to seeing you tomorrow. Xoxoxo

July 10th, 2011 at 09:49
Jarmila Richter Says:

Jake,

even though you have to deal with the facts of cancer all your waking hours, you are able to write about it objectively. Spirit and determination to fight it is the only way to go!
I am proud of you.

July 10th, 2011 at 10:15
Harrie Says:

Hi Jake!

It is amazing how you deal with all that’s happening to you, certainly your writings will help you too. Clear, honest, and helpfull to so many. As I promised you would loose weight again, when the treatment started. But sad to hear your energy to prepare your food is diminishing, and of course the apetite. But there are worse things.
We are now on Bonaire, and looking at our neighbours house, where you were living before, makes us think of you again.
When we will be back in the USA in some months for our trip (when customs allow us), we hope to find a possibility to visit you in Boston. Hope we can make it.
I have a feeling you are a “surviver”, and hope you can say in five (or seven, as they say in Europe) years to be a “cancer surviver”.

Stay strong, give our regards to Linda and kids.

Carmelita & Harrie

July 10th, 2011 at 11:00
Corky and Sy Says:

Hi Jake,

We’re still sending out those positive thoughts, hugs and love. Keep fighting!

July 10th, 2011 at 12:05
Wallace Says:

Jake,
Thanks for the update. My wife starts her interferon tomorrow. Your posts help with my anxiety. You and your family are in my prayers daily.

The “label” I thinks works best is “Living with Cancer”.

July 10th, 2011 at 12:20
Jake Richter Says:

Wallace,

Is your wife starting on Sylatron or regular interferon?

And I like your label. Concise and to the point, and it applies to loved ones sharing the burden as well. Others that have come up: Cancer Soldier, Cancer Warrior, and Cancer Fighter.

Jake

July 10th, 2011 at 12:50
Wallace Says:

Jake,
She is starting the regular high dose regiment. She was apprehensive of the multi-year Sylatron protocol. She wanted to “get it over with”.

July 10th, 2011 at 12:53
Jake Richter Says:

I wish her the best. The traditional treatment is pretty brutal, from what I understand. Please let us know how it goes!

Jake

July 10th, 2011 at 19:02
Nick Davies Says:

Jake, Linda and family,

You are an inspiration to all in your present situation, my prayers are with you all, stand tall, I believe the writing is helpful to many those who understand as well as those who don’t. My dad starts treatment tomorrow for 3 weeks on an early caught throat cancer and i have never had to deal with anything like this before, reading your words was insightful. I am no great wordsmith to match your unique talents for writing so keep this deliberately short and just wish you continued strength and success with your situation. God bless you and your family, prayers and strength – Nick

July 11th, 2011 at 11:16
Leslie Lindsay Says:

maybe something more like “cancer warrior”? or “cancer adversary”?

August 23rd, 2011 at 21:00
Kimberly S Says:

Hi Jake,

We just found out today that my husband has stage 3 nodular melanoma. He is going in for a PET scan and then for removal of the lymph nodes under the arm. He is being referred to an immunologist. He had an x-ray last week and it revealed a spot on his lung which I now fear is melanoma cancer. I can’t keep a thought for more than 2 seconds right now and feel like my world has been turned upside down. I so appreciate your updates and will look for more.

God Bless,
Kimberly

August 24th, 2011 at 09:56
Jake Richter Says:

Hi Kimberly,

From personal experience and comments I’ve received back from others, the initial diagnosis period is by far the most confusing and disorienting. The thing to remember is that treatment is all about your husband, and if either of you do not understand something you’re being told, or you think it’s wrong, you have to right to ask questions or seek other opinions. I would definitely recommend that you make sure the immunologist is a melanoma specialist, because melanoma is not like any other cancer. That said, immunotherapy is a major aspect of melanoma treatment, as I have been learning.

Remember to stop, breathe deeply, and try and focus on what needs to be done. And get all the support – mental, emotional, and physical – from family and friends for your husband. This is a very difficult time, and going it alone only makes it more difficult.

Please keep me posted on your husband’s progress. Be strong.

Jake

August 25th, 2011 at 15:34
pat larson Says:

Jake,

I am post op for melanoma stage III (foot) i am recovering from a skin graft and awaiting word re when to start sylatron. i got the splint off yesterday, still using the walker. i am being treated at OHSU and Providence hospital in Portland OR. I am thankful for your postings! My constant weeping is better! Best wishes and I’ll be following your blog. Pat

August 26th, 2011 at 10:29
Jake Richter Says:

Hi Pat,

Good luck with your on-going treatments. Remember that while on the Sylatron, if you do get the normal fatigue side effect, it only lasts as long as you’re on the drug. In other words it’s a temporary annoyance that will hopefully lead to better health down the road.

Live each day at a time, and enjoy everything around you :-)

Jake

February 25th, 2012 at 23:18
MK Campbell Says:

Hi Jake,
I am in the throws of deciding to take or not to take HDI. One opinion by a key expert in melanoma told me about Sylatron. What insurance do you have? Did you have to pay up front the $12K?

Diagnosed in November, resection and SNB all done in December. What to do?

February 26th, 2012 at 20:28
Jake Richter Says:

MK,

Each insurance company deals with the reimbursement for expensive meds differently. Check your policy for details. We have a special policy for non US residents, and we had to prepay the Sylatron and get reimbursed 100%, but the convenience of self-injecting is so much more convenient better than daily IF infusions.

Jake