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Friday, December 15, 2006

A break from it all

I am getting a break from it all. By that I mean a break from the endless doctor's appointments. I have no appointments in January and only see my periodontist in February. March begins the next cycle of appointments but that's almost two months off. My appointment yesterday with the medical oncologist went well. He strikes the right balance with me. He addressed the uncertainties that cancer patients have to live with and how no test is 100 percent but that he isn't seeing anything to indicate the need to be concerned yet. I discussed with him how hard it was for me to stop listening to my body. The issue being that I've always had good instincts about my body and have been able to recognize when something was seriously off. He said I shouldn't stop listening and that if I had new or worse symptoms I should try to find answers and that I should call him if I have concerns. Right then and there I felt a wave of pure relaxation that I haven't felt in ages. The way it will work is I'll see him every 6 months as well as continuing to go to the melanoma clinic I've been going to every 6 months. My other oncologist is a surgical oncologist and my appointments at the clinic alternate between him and the NP. Now, I'll also be followed by the medical ONC at the cancer center where I live. The medical ONC also said he could set me up for my regular PET scans and then would send them to UNC prior to my appointments there. That will be so nice to get scans in Raleigh instead of having to drive to Chapel Hill. I was afraid that the medical ONC was just a consult and that I'd have to decide between seeing him and seeing my UNC doctor. That would have been a hard one because I feel like the Cancer Center at home is so much easier for me but the surgical ONC is the one who has melanoma as a specialty and who is involved in melanoma research. What a relief that I didn't have to decide between the two although eventually I hope I won't need so many appointments. Sometimes I wonder how different things might have been for me if I had automatically been referred for physical therapy after my groin dissection like some people are. I like the melanoma clinic at UNC as far as it goes but the attempts to reassure me, after I started to fall apart physically, back fired. The NP in particular had a tendency to say, it's unfortunate that you are having all these problems but they don't have anything to do with melanoma or the surgery. Huh! My surgical ONC is an excellent surgeon and it's not that I blame him for anything. He was up front with me about a percentage of people having chronic pain after a LND. I will never understand why the NP would say to me repeatedly that my problems had nothing to do with melanoma OR the surgery when the surgeon himself acknowledged that some people do have chronic pain after that surgery. It didn't help either that the first post surgery PET scan I had, to reassure me that my problems didn't relate to melanoma, was the one where the radiologists found an issue in the groin that at that point they were saying was consistent with a tumor recurrence. That issue settled down and is now considered (on PET/CT) to be consistent with surgical changes although the last pelvic MRI couldn't exclude a recurrence. I am ready to move on and it's easier for me to do that now that I have a doctor who has made it clear that I should call him if I have a problem. It makes it easier for me to start looking once again for that elusive new normal. I also feel like all the bases are being covered. I see the NP at UNC in March for my regular check there; I see my medical ONC in Raleigh in June for an exam and lab work; somewhere in there I have a dermatology appointment and PET scan. I also have a Rheumatologist and pain specialist appointment this spring. The one I most want to drop is the pain specialist but there's no way around that while I have to take the pain medications. I hope one day to go back to having years between doctor's appointments except for the obligitory GYN physical. When my family doctor retired in 1990, I didn't go to a GP except for once for 15 years. My only other doc appointments was the GYN physical, eyes, and teeth. Since my melanoma dx I've seen a dermatologist, oncologists, neurologist, rheumatologist, pain specialist, NPs, PCP, physical therapists, blah, blah, blah. I know how fortunate I am. I know how much better my medical care is than what so many people can get. I also know that people with a better prognosis than I had going in are no longer alive. I know people fighting active disease and who handle tough treatments with so much grace and humor. I am going to try to honor my good fortune and do as much as I can. I don't want to merely occupy space. As far as melanoma goes, I'm going to try to take a break from thinking about it at all. I want to check in on people I've gotten to know through an online melanoma support group. I've met several people in person through that site and ones I only know through their blogs, MPIP posts, and email have become people I care about and respect. I don't want to lose touch with the people I've gotten to know through melanoma but I want to take a break from thinking about melanoma so much. I am so incredibly fortunate in that I'm not in an active treatment against active disease. I need to find ways to honor my good fortune and . . . . . .

3 comments:

Heather said...

Carver,

I am so happy to hear of your improved status and you NED status, after you have had so many issues and worries this year.

I think if you feel like you need to take a break from mel, then you should do just that. Melanoma can be all consuming and that's not good for any of us.

You are so helpful and supportive and kind to so many people, what you do really makes a difference and I know that everyone who reads this blog will understand where you're coming from.

I admire very much how committed you've been to helping people and showing support and caring on such a regular basis for so long. And you know how much I enjoy your blog. :)

You're truly an amazing person!

Again, I am so happy you can let go a bit and enjoy being NED.

Love, as always,

Heather

King (Kathie) said...

Hi Carver,

I am so happy that you liked the medical oncologist. Finding a doc that one likes can be quite a challenge.

I realize how fortunate I am that I don't have the chronic pain issues that you do after a groin lymph node dissection. I'm sorry that you have to deal with that - it must be so draining.

And if you need a break from thinking about mel all the time, then take that break. You've earned it!! You've helped and supported so many people.

Wishing you Happy Holidays if we're not in touch.

Stay Strong

Kathie

M said...

Carver-

I saw your comment on my blog and I just wanted to say thanks for the support! I've been reading your blog since August and you always give me reason to hope. And although I don't post much on MPIP (I don't feel too welcome there) I do read most of the posts and I'm glad there's someone like you around to give people the support they need.

Sometimes when I need to relax I just come to this blog and look at all the beautiful pictures. I used to live in NC and it was always so pretty.

Have a great holiday season!

Melissa V.