Update and a New Blog

It's been over a year and a half since I last posted. In March of 2011, I had a PET Scan that had my oncologist question that spot deep in my chest, plus one in my right armpit. She ordered a needle biopsy of the armpit lymph node which ended up being too small to determine anything. Determined, in April, she sent me to a surgeon who did a lot of breast surgeries and was quite experienced with associated lymph nodes. That surgeon said that she wouldn't have even ordered the needle biopsy because it was so small that there was a good chance that the PET result was a false positive. By my next oncology appointment, that armpit was clear - the spot miraculously disappeared, and there was no change in the tiny spot deep in my chest.

I changed dermatology practices, and kept up with 6-month oncology scans and appointments with no changes until this past summer. I was at my family doctor when I pointed out two hard bumps in my upper leg. He said that they were calcified bug bites. I questioned him because of the bumps being on the same leg in which I had the melanoma, but he wasn't concerned. I visited him again because of a surface clot in my lower right leg that was causing some discomfort, and pointed out a tiny dot I had been checking daily because it looked suspicious (not like the other freckles I have). He didn't like the dot either, and did a punch biopsy. It only required one stitch to close. Well, that came back as something that couldn't be ruled out as melanoma, but wasn't clearly determined.

In consultation with my dermatologist and my husband, I decided to change from the Lancaster Cancer Center to the Hershey Medical Center's Cancer Institute. It was a tough decision, but I liked the idea of having a skin group (dermatologist, surgeon, oncologist) in one place who consulted regularly, and the location was so much more convenient to work and home. It was difficult to leave the Lancaster Cancer Center because I received great care there.

My dermatologist made me an appointment with the surgery oncologist in his practice. By that visit, I had grown a few more bumps like the two "bug bites" I had discovered mid-summer. The surgeon scheduled a biopsy and took out three of the bumps with the punch tool. They were all positive for melanoma. It was back. I had a CT scan, PET scan, brain MRI (noisy!), and blood work done.

My visit with my new oncologist confirmed the return of the melanoma. It is in transit metastases, which is the "spread of melanoma along lymphatic vessels in the skin which forms nodules either in the skin or under the skin away from the primary melanoma site" (http://www.uphs.upenn.edu/surgery/Clinical/EOS/isolated_limb_perfusion.html). He recommended an isolated limb perfusion (ILP) which should then be followed by a year-long immunology treatment. So, the ILP will be performed at the University of Pennsylvania on November 15th.

Once again, I have not been able to find personal experiences of an ILP except for one performed on an arm (http://chapple.freeshell.org/ilp/). So, I am going to begin a new blog to journal my experience of this procedure in the hopes that it helps others about to undergo it. Feel free to follow me along in my new space at http://isolatedlimbperfusion.wordpress.com/.

Six month checkup

Hmmm, funny thing - until I just now read my entry from August, I forgot that my doctor said that I wouldn't need a CAT scan unless my bloodwork warranted the need, and I ended up calling their office a few weeks before yesterday's appointment asking about a CAT scan appointment. I guess I confused them, because they went ahead and scheduled one. The scan was last week.

Yesterday at my 6-month checkup, my bloodwork was great. However, they're looking at a lymph node deep in my chest that had changed since my last CAT scan 6 months ago. Now I'm scheduled for a PET next Wednesday morning so they can get a better idea of what's up. "Luckily" I have a 1-year-old PET to compare it against. Since my bloodwork was good, how bad can it be, right? On the other hand, if I hadn't had the CAT scan, then what?

This cancer business is pretty tricky, and it's knocking me around again. It's once again lingering around every single thought, sitting right beside my daily routines, reminding me with my waking thoughts and making me wonder as I fall asleep. It took more than two years to get it out of my consciousness on a daily basis, and just like that it's back. Damn!

New Realizations

Based on my experiences with fighting melanoma, and now with a friend going through her own battle with cancer, here are a few tips. For those just starting this battle, do let friends, family, and neighbors know of your needs. Holding in the tears and fears just means that the time for them to be released will have to be later. Do reach out for help. Do realize that a support group or counselor might be an important part of your healing process. It doesn't mean that you're not a strong, independent person. It just means that you shouldn't go into battle alone - it takes an army to defeat cancer, and melanoma is more than just skin deep!

Two-Year Milestone

This month's 6-month checkup signified a 2-year milestone since treatment ended and remission started. This morning I got the all-clear from my oncologist. She said that the chances of recurrence decrease each year I'm cancer-free. I still have to go back in 6 months for a checkup, but I won't need a CAT scan unless my blood work warrants one. Yay! Now my sights are on the 5-year milestone!

I still have to see my dermatologist every 4 months (which I'm trying to extend to 6 months), but I don't have to see my surgeon for a year. I'm seeing the benefits of that one awful month of intensive interferon treatment!!

Another good six month checkup

Keep them coming is what I say! I made the round of doctor visits again - surgeon, dermatologist, oncologist - and all is clear. I must admit that I was a bit concerned because the oncologist's office usually calls me with the CT scan results prior to my visit, but didn't this time. Of course, we had a blizzard in there and I'm sure that didn't help with getting the call made. However, I kept expecting the good news phone call and didn't get it. On top of that, I told the surgeon about the deep pain (as in location, not severity) I've been having in my thigh. He suspects nerve regeneration (since I'm still numb from the middle of my knee on up), but wasn't really sure. He said he would write a note to my oncologist. Luckily, the bloodwork and scan looked fine.

On Monday I began a couch to 5K training program. I need to lose weight and get fit. I promised myself I would do this after the interferon treatment and did for awhile, but slowly slid back into my old ways. The work schedule and doctoral dissertation work keep me pretty sedentary, but are really no excuse for my inability to find 30 minutes out of an entire day to get my body moving. So, the couch to 5K seems doable so far, and 30 minutes a day is certainly reasonable to get me started. At my next round of checkups in six months, I hope to be lighter and in much better shape.

Six more months and still in remission

I got the all clear six month check up news this week. The CAT scans were all negative and the blood work looked good. No lumps or bumps detected. So I've been clear for a year now. My next checkup is in another six months.

My very favorite season, summertime, hasn't been quite as much fun this year since I was very diligent avoiding the sun. I do miss napping on a float in the pool, but have to also say in the same breath that I'd rather give that up and still be alive to enjoy a sunny day. I had my fun in the sun, and now I've got to play it safe. I wish I had been smart enough to play it safe a lot sooner.

"Healthy tan" is an oxymoron. Co-workers who know my cancer story look at me with guilt and make up excuses when they come in to work on a Monday with their skin yet another shade darker. "I was careful not to burn." "I used sunblock." Whatever. I'm not trying to lay a guilt trip on anyone. After all, I was the one who was not careful enough not to burn, and hardly ever used sunblock. I really don't want to hear excuses either - it's their life and they'll only understand if and when they have to deal with skin cancer. I hope they never do.

Good Checkup News

My oncologist visit today was the culmination of a round of doctor visits over the past month: mammogram, pap smear, dermatologist, surgeon, CT scan, and finally blood work. All provided good reports with negative results. While the dermatologist wants to see me again in 3 months, I'm off the hook with the surgeon and oncologist (and CT scan/blood work) for 6 months - that's August! Woo hoo!!