Melanoma

This is dated, I started writing it in late July and finished it in September, but it seems as if it will work as my first post here.

I’m writing about the skin cancer that came into my life uninvited. I’ve been a survivor of Melanoma stage 2A since July 14 2005 and now Metastatic Melanoma since July 28 2008. I’m not sure of the stage this second time around, but life isn’t stopping for cancer if I can help it. I’ve worn my Livestrong and my Melanoma bracelets for three years already — I passed my three year anniversary date about ten days before the doctors appointment that began the diagnosis of the metastases.

I’ve debated about whether I wanted to write more on this page, but I heard that family gossip in one direction was that my cancer might have come back. So I think I’d better write it all out, because for all that my cancer’s not in the treatment stage Philomena’s is, it most definitely came back and I’m having to deal with it too. It wasn’t cured when they removed the first melanoma and couldn’t find signs of any more of them in 2005. Cancer doesn’t work that way. Once it’s there it’s there, it’s just a question of whether and when it will show up again. For me, it showed up as metastases inside my brain, which were spotted with an MRI on July 28 of this year.

The knew to do the MRI because I’d started having problems with my right foot and leg, that didn’t make sense. The general practitioner called it “Sudden Onset Foot Drop” on July 24 when I saw her. She tried to get me to a neurologist that day, but the soonest she could was the following Tuesday, with an MRI scheduled that Monday the 28th. In the meantime we discussed reasons my leg wasn’t working — which could be all sorts of things from Guillam-Barre syndrome, MS, “100 other things”, and I did look up things on line and see that brain tumors were a possibility, but didn’t think of them as a high one since I tend to get diagnosed with something new and different regularly. So much for that trend.

Dr Ruscheinsky called the afternoon of the 28th to say that the MRI that morning had shown two tumors in my brain that they believed were metastatic melanoma. At that point I said I’d been afraid of that — just since that day actually, and handed the phone to John. He got the details while I cried on my friend Rita. I already had the appointment with Dr Balm, a neurologist for the next morning, and we called Carolyn, another friend to ask her to go with us, and then called my folks and said “if you’re not sitting down, sit down now.” At that point we didn’t know what the treatment options would be at all.

The next morning Dr Balm went over the MRI and showed us the two tumors. He talked about setting up appointments with a neurosurgeon and an oncologist, and getting treatment moving within a week to ten days. He prescribed a steroid, Dexamethasone at two mg four times a day, to decrease the swelling in my brain, which was what was causing the problems with my right leg, and changed a few other medicines around to work better with the steroid. After seeing him we saw the person who did all the scheduling of appointments, who made me an appointment with a radiation oncologist Dr Wendland for the next day, one for a CT scan later that same day, and talked about one for the neurosurgeon another day or two later. She mentioned something about Gamma Knife surgery, which I wasn’t very clear about as a possible option for some people.

John had to drive to Medford the next day, Aug 30 to pick up a friend at the airport, and put on a brief appearance at work along the way, so Carolyn drove out to our house, picked me and Logan up, ferried Logan to Melanie’s house, and then took me on to my first appointment at the Willamette Valley Cancer Center with Dr Wendland. Dr Wendland’s nurse listed off a doctor I’d never heard of in among the ones on my list McGirr, and I said, no I didn’t know him. She took him off the list. Then Dr Wendland came in and told me that Dr McGirr would be the other doctor helping with the Gamma Knife Radiosurgery and they’d like to schedule it for August 6. And that the CT scan had shown no other sign of metastases anywhere else. Dr McGirr turned out to be my neurosurgeon. They scheduled the Gamma Knife Radiosurgery for my dad’s 74th birthday, and the trip report is also here. The hospital’s information on Gamma Knife is on line, with a nice picture of my doctors, plus some others. http://www.peacehealth.org/Oregon/SHMC/GammaCenter/Team.htm Dr McGirr is the guy with the mustache. Dr Wendland is the only woman and my physicist is the front guy on the right, who’s also tall but doesn’t look it. Those three did the computer programming and the surgery, although the main surgical part was putting an IV in and a halo on my head.

Now it’s nearly a month later. They believe there’s a 90% success rate, or chance of success, or something along those lines. My right leg is still bothering me, but Dr McGirr says that as the tumors necrotize they continue to cause swelling and irritate my brain, so I’m willing to take leg dysfunction and pain, it sounds like its a good sign. I am taking four mg of Dexamethasone a day until the next MRI, or until I stop having problems with my leg and call a doctor and say “how about reducing this”. It makes me irritable, prone to unexpected mood swings, hungry all the time and insomniac. Just treat me like a pregnant woman with PMS and we’ll be fine. Plus I’ve gained more weight than I want to think about in the past month. But presumably it’s doing it’s job, I can walk much better than I could at the end of July. On good days I’m wide awake and doing things all day. On bad days all I want to do is sleep and my leg is tired no matter what. Some of my hair came out, mainly at the tumor site that was closest to my skull on the left. It doesn’t show unless you look for it. I have a lot of hair. It’s nothing like what folks who have real Chemo go through. I’m hoping it will grow back silvery grey there.

So as far as “the cancer may have come back”, if you want to go so far as to say it’s possible it’s not the melanoma, I guess you can do that. No one drilled a hole in my head to do even just a fine needle biopsy to test what kind of brain tumors I had. They went with the facts that (1)I already have melanoma skin cancer, (2)melanoma likes brain tissue, and (3)the tumors look consistent with the way melanoma in the brain looks. Given the choice between no hole in my head and a hole in my head, with a good prognosis either way, I took no hole in my head.

Before my cancer stage was at 2A. This puts it at stage 4. It’s not considered the same as if it had been first diagnosed at stage 4, but stage 4 is still pretty serious. I’m not having chemo or other radiation unless something else shows up. There’s nothing to treat unless something else shows up. The next treatment at all is an MRI in October to see if the tumors have died off properly and left scar tissue. The scar tissue will always be there. After that MRI, I’ll have an MRI and a CT scan every three months, unless something makes a doctor order one sooner than that. I don’t know yet about PET scans, I need to call Dr Ruscheinsky and ask her, but I’m sure someone will order one if I ask. I’ll continue to see a dermatologist every three months for a skin check. Nothing has shown up on my skin since the first melanoma. I have a naturopath now, Tina Kaczor at http://www.clinicofnaturalmed.com/ who’s helping me with diet, nutrition and vitamins. I’ll go back to seeing my acupuncturist (Rob Singer at http://www.acupunctureforthepeople.org/ )next week on the theory that any help with swelling (from the steroids) and blocked chi will be a benefit, and that I felt decent when I was seeing him regularly so whatever it is that acupuncture does, it helps somehow.

I don’t have a big arsenal of medicine to fight this with. I have the resources I can find — making my self as healthy as I can, being constantly watchful, reducing stress, doing everything I can to be healthy. Either it’s not much or it’s a lot to work with. It’s better than taking interferon and feeling sick all the time only to have the cancer come back anyway I think. Saturday I start using my new exercise bike, to add to my fatigue. Dr Kaczor suggests a variety of deeply colored foods, fermented or cultured foods, and sent me home with modifications to the vitamins I was already taking plus five complexes I wasn’t yet taking. (Folks who know my family will know the history of mega dosing vitamins — it’s not as if I was taking one multivitamin a day to begin with, I’ve just never consulted a professional on the subject before, I’ve got generations of research behind me already!) None of my conventional doctors have had any objection to my alternative doctors. Some have been the ones to refer me to them. Dr Kaczor works with Dr McGirr with folks who aren’t me.

As far as how I’m feeling now, my focus is a little strange, but I can’t say if it’s necrotising tumors, steroids, stress, insomnia fibromyalgia flare, or something else entirely. I’m doing the things I always do, but resting when I need to. I’ve got offers of places to rest in Eugene, and much as I hate to consider it I will accept them if I need to. I’m using my cane when ever I leave the house, although not always inside buildings where footing is good. I’m answering a lot of questions about why I have the cane (my leg bothers me) and entertaining babies and small children by letting them carry it. And I played a rousing game of tag, of some sort, today with three boys which involved them sneaking up behind me as I sat on a log to try to tap my back before I could reach behind my back and tap them. It worked much better than chasing them would have and they laughed a long time. I’m doing my best to be normal. If I act as if enough, maybe it will work.