My Scalp Is A Worrywart

A couple weeks ago I was prepping for my last post op appointment with my oncologist. My list of questions were: 1.My largest wound opened up again. Is it infected?  2.I was invited to be in a melanoma study in Pennsylvania. Does she have any reservations about me participating?  3.The third surgery was much less invasive than the first two. How do we know we got all the cancer?


Thankfully she didn't think things looked infected again but said my scars were not going to be pretty. That was obvious. I'm just glad the majority of them are on my back. I only have to see them when I choose to. The biopsy they did on my face was the easiest to heal and the least noticeable. That was a gift.


When I told her about the research study she was excited for me to get involved. She had just read about it and didn't think there were any negative aspects to consider. How could freeze-dried broccoli sprout powder hurt?


Then on to question number three. Because my back was such a mess after the first two surgeries, my dermatologist just scraped off some tissue around the site of the latest biopsy that had come back showing cancer cells. He didn't think my back could handle anything more aggressive. So my oncologist went to the computer to see if I had already had a specific blood test. I had not so she said, "For peace of mind, let's run an LDH and a few other levels. Normal results will assure us that the cancer has not spread to any other organ." So off to the lab I went. The phlebotomist got me on the first poke!! She told me to expect the results in three to five days. The next day I got a call. My levels came back too high.


She decided she wants to wait four weeks and rerun the test. So now I wait for the 23rd when I can go back to the lab. I have tried very hard not to worry. My mantra has been not to worry until I know I have something to worry about. But tell that to my hair! It has been falling out in clumps. I went for a haircut yesterday and my stylist asked what was up. She said I have about half as much hair as last month. There is only so far you can push the concern I guess.


I just heard the new Taylor Swift song today. The chorus is "Are we out of the woods yet? Are we in the clear yet?" I have been listening to it on repeat all day. I hope to hear a resounding YES soon. But for now I wait and hope and pray. I thought it was time to ask you all to do the same.

The Long Haul

For the last 4 years I've had to get naked every six months and have the dermatologist exam every crevice of my bodacious bod. Now that there has been a recurrence of melanoma, I'm back to stripping every 3 months for the next 2 years. Only now I'm in a higher risk category so they are going to be more aggressive about doing a biopsy on funky looking spots. 

Well today was the day. Already. And my new, 70 year old, Swedish doctor with the tiny circle glasses decided to do 5 new biopsies. Raising my new grand total over the last 6 years to 31. We'll get the results in a week. 3 cuts on my back, 1 on my left breast and one on my left thigh. 

They say lightning only strikes once but I have had my house get hit and fry all my electronics and a couple years ago my car got hit as I was driving along a country road. It lifted the car off the ground and for some reason I thought I had been shot. But it only left a dent in the hood. 

Today while Dr. Stawiski was cauterizing the wound on my left thigh, I leapt off the table and yipped like a puppy or something. Unbeknownst to him, my calf was touching metal and it shot a current through my body when he touched me with the soldering doohickey. It's not an official lightening strike but COME ON! 

If anything comes back atypical it's another surgery. I know you all keep encouraging me not to be negative but this times I'm asking you to hope for it. I need negative mojo. Benign, benign, benign!! Let the countdown begin. Again. 

This week has been a hum dinger!

Gilda's Club is an organization here in Grand Rapids (and several other cities in the US) founded by Gilda Radner of SNL fame, who lost her battle with cancer in 1989. It's an absolutely gorgeous old farmstead that has been remodeled into a cancer support center for patients, their families and friends. When it first opened I was a excited supporter, now, unfortunately, I'm a client. What a godsend it was to go there for dinner and attend a support group last night. This week has taken a huge toll. 

The roller coaster week of challenging test results and crummy side effects began with my CAT scan findings. It showed 4 nodules on my left lung and a cyst on my kidney. My new Physician's Assistant, Kim, another member of my growing "team", tells me the nodules are of unknown origin so they want to schedule another CAT scan in two months to measure the nodules again. If they have grown, she will order a biopsy to evaluate them for cancer cells. That news made for a challenging Monday. 

On Tuesday I was just trying to hang on. My incisions continued to be painful and fester and it felt like my brain was doing the same. Finally, in the evening, I got some good self talk going and the cheerleader was back!  I decided to just focus on the fact that Wednesday would be a better day and I was going to spend it with my favorite two year old! About two minutes into our snuggle I got a call from another doctor telling me my mammogram results were in and there is a suspicious mass in my left breast. 

Several people encouraged me the day before saying its a good sign that they weren't rushing to do a biopsy of the lung. Wednesday when I shared that they were getting me in right away on Thursday to do a repeat mammogram and ultrasound those same folks said, "oh good, what a relief that they are taking this seriously and are seeing you right away."  And I was trying to feel the same way, but honestly all I could think was f~<£!!

So yesterday I spent the day at the cancer center having my incisions checked, putting the details together so that next week's surgery will go more smoothly than last week's, and finding out whether or not I also have breast cancer. I knew they ordered the initial mammogram because there seems to be a correlation between women who get melanoma multiple times and those same women being diagnosed with breast cancer. Thankfully I left the center knowing that the mass was a 3 cm benign cyst. It doesn't need to be removed. It won't ever develop into cancer. Finally a test result ultimately going my way!!!

Then I got to end the day at Gilda's Club with my sister Christine, who had been on the roller coaster with me all day. Thank you family and friends for all your visits, calls, cards, words of encouragement and thoughts of hope. I'll never forget your support. Every word means the world to me. I love you all so much. 

cancer: watch out, it's unruly

Been dealing with a few rough and unexpected weeks. In the middle of April, my dermatologist referred me to a surgical oncologist when two tumors she biopsied turned out to be malignant melanoma. My oncologist decided she wanted to remove 4 additional spots and have them evaluated. 

So last Monday I had two softball sized excisions and 4 golfball sized sections of skin removed at Butterworth Hospital. Two days later I was told that all 4 additional spots came back as cancerous too. So now I need another surgery where they softball size cut the old golfball scars, taking away any other cancer and a sizable margin of healthy skin. 

Unfortunately, the test results also show that the cancer is aggressive and growing fast and kind of wild so during the next surgery they are "softballing" ( my technical term)  two more sections of skin because they have spots that look awfully similar to, and as unusual as, the other cancerous tumors. That surgery was supposed to be this coming Monday but as of today, all of my current scars are painful and oozing and infected so I've started a round of antibiotics and am taking medication for the pain for 10 days until it's safe for the dr to cut into me again. 

Therefore my next surgery, which will result in 6 additional softball sized scars, will be Thursday, May 29. Three of the excisions will be on my right shoulder/midback area, two will be on my left side and one on my right. They warn me that it will continue to be impossible to use my right arm and very difficult to find a comfortable position. :(

I've also had blood work, EKGs, pathology reports, a mammogram and tomorrow is a full body CT scan- We want to be positive that no cancer had spread into other organs. 

I covet your love and support, your comments, questions and suggestions. The last thing my dr said to me today is that I have many surgeries in my future and a long road ahead.

Sounds pretty painful, lonely and daunting. I'm going to have to do something about that! Calling all cheerleaders!!