Sunday, October 14, 2012

Back In Time To 2008: Surgeries, No Interferon, Fashion

I've never written, in depth, about what it was like and why I made the choices I made. So the following is what happened to me. Take it for what it is if you're interested. I can't change the history, even if I wanted to, so this isn't offered for any bickering over what the better choices are. We are all faced with decisions and we have to pick what we think will be the best for us, we can't go back and change our minds. We don't get do-overs. I've covered getting my melanoma diagnosis. I've made allusions to some stuff and skimmed the surface of other stuff. This blog site is searchable for folks who want to know more. And who could blame them? Mighty interesting stuff if you ask me!

In July 2008, after my diagnosis, I met with one of the melanoma specialist oncologists and a mel spec surgical onc, at Duke. I had the routine scans. Including going nuclear with a PET/CT scan to see what we were dealing with. I was still 48 (and this runs into August) and in the middle of menopause. I was "looking forward" to much more. In order to go nuclear I had to sign a release stating that I understood I could die during the test. So I signed, two lymph nodes lit up the screen, and I've never had another symptom of menopause. I didn't die, but one body system, which was functioning before the test, stopped functioning after it. Now, I realize there are women who might think "no more menopause" is a good thing. Not when it happens this way. It's scary. And for me, it played into other decisions yet to come.

There were a couple other notable tests and procedures during this same time frame, but they all went "normally" "normal" as shooting dye THREE times in a really, really tight, down to the bone, scar can be. There's no word in the English language (or in my vocabulary) that describes that. All these tests worked together to confirm my melanoma was, indeed, in two lymph nodes. I have been told by lay people that usually these tests do not confirm to the degree mine did. But mine did. My surgeon knew it was definitely in those two nodes. Side note: It wasn't until I recently read my online reports that I learned I lit up two nodes! All this time I thought it had been one. What a misunderstanding! Word to the wise: read your reports yourself!

So, I go in for surgery, and the first two nodes are removed from under my left arm. A drainage system is there when I wake up (thin tubing running from the opening into a collection test tube taped between my breasts).

Something nobody told me pre-op: I'd never wear a bra again and while I healed I would need men's X-Large shirts to accommodate the drainage and lack of bra. Shirts made of dark colors and thick material. I did learn, during this whole time, not to judge how people dress because we never know what they're dressing to accommodate. And, yes, I did wear my new wardrobe into the pulpit. I had to. Folks understood and loved me anyway and loved me through it. I am equally sure that I passed people on the street who would have given me a ticket if they had been fashion police. I think there needs to be clothing for people who do have to work, get out in public, and work around drainage systems of all kinds and in various places on the body. Four years later I wear a camisole with built-in sports bra. My scar is still sensitive and bras are deviously cut to rub it. Manufacturers are in a conspiracy.

Because those two nodes were definitely melanoma positive, my surgeon went back in and removed the remaining 25 nodes and I woke up with a larger drainage system. Pathology confirmed those nodes were all clear.

My waking and hospital discharge all went smoothly the first time. My second go-round was a different story. One, it took me longer to wake up and when I did start to come to, I could tell the attending nurses were relieved. So they wheel my bed into another section of post-op and after a while a nurse tries to get me up. I had JUST had a huge hunk of material removed from under my LEFT arm (they don't sort nodes out, they go in and scoop out all of what's there when they go back for all the nodes), had staples and bigger drainage in under that arm, and the nurse stands at my left side, reaches OVER, grabs me by my right side and rolls me towards her! She was stunned when I started crying and told her she was hurting me. She was absolutely shocked. Really. And immediately told another nurse that I wasn't ready to be discharged because she couldn't get me out of bed.

HELLLLLOOOOOO! So I was moved upstairs to step-up recovery for the night. Which was just as well because during the night my oxygen level dropped and I needed some O2 for a while. And, due to the previously mentioned rough-handling, I was in pain that had to be managed. I'm someone with a high level of pain tolerance and I don't like taking strong stuff, but this time the pain was pretty intense and I needed heavy duty help.

During the time of healing, I saw the oncologist and we discussed my one and only option in 2008. Interferon. Well, we didn't so much "discuss" it as much as she told me "we" could do it, what it would entail, and I went home to research it and to pray about it. She didn't try to talk me into doing it or talk me out of it. It was totally up to me.

So I read everything from every medical, reputable source I could find. The side effects scared me silly. I'm the type of person who can't take aspirin without side effects. EVERYTHING that most people laugh at, makes me sleepy, or nauseated, or dizzy, or any two, or all three. I knew I'd have the worse side effects possible because that's my own history. Possible liver damage really scared me. This Interferon was offered as something that might keep future recurrences from happening. There were no guarantees. I didn't have active disease at this time because it had been removed with my lymph nodes. Should a recurrence occur, I figured I would need a fully functioning liver.

Something else that I had to take into consideration was what that PET/CT scan did. It shut down a functioning system in my body. I don't have but so many body systems and I'm pretty sure I need the rest of them. If going nuclear did THAT, what would Interferon do?

I opted not to do the Interferon.

When I met with the oncologist and gave her my decision, the PA that was in there literally clapped and cheered. The oncologist beamed broadly. I later learned from my surgeon that they don't like Interferon and don't push it. They do have to offer it as an option and will certainly administer it if a patient wants it, but they do not push anyone to do it.

I'm aware that many people in melaland consider my approach to be "watch and wait." Not for me. I know my body, what I can handle and what I can't. I've chosen to manage mine, should I ever experience a recurrence, with surgery as long as I can. If I ever need to examine one of the new drug options, I will. I'm in a good place. No Interferon was the right choice. For me. All treatments are personal decisions and none are made easily. Nothing comes with a money back guarantee unfortunately.

Also, as far as "watch and wait," well, that's what we all do, no matter how many drug treatments are tried. We watch our bodies and wait and pray that there's no more melanoma.

From what I've learned, some patients in some facilities...or particular doctors, are told to do Interferon or other treatments. Know yourself. Research your options using reputable sources. Know what you are comfortable with and what you aren't comfortable with. Remember: this is YOUR choice, YOUR life, YOUR battle, and maybe YOUR death. YOU call the shots. I don't care how your doctor presents it. You do not HAVE to do anything. You CAN say "No." You CAN say, "What are my options? Are there any trials I qualify for?" You can ask all the questions you want. You can say, "YES!" to what YOU decide to try. Just let it be your decision.

So, that's why I opted to not to Interferon. This, very briefly, was what my surgeries were like. This explains my wardrobe for the past four years.

But, HEY! I'm here!

And I am extremely grateful!