Testing Updates - Part 2

August 4th - Treatment finally starts

After a long wait, I finally received my treatment medication in the mail (Yes, the VA is good at sending them. However, it takes forever.) As soon as I got them, I took the first dose of 80 mg. That was to be the first dose of 8 weeks of treatment. Popped the pills and then off to my appointment with the Dermatologist.

Trip to the Dermatologist

August 4th rolled around and it was finally time to see the dermatologist. I was eagerly awaiting to see them because I had spots that I felt were a bit of an issue and needed checking out but also because they were going to look at my knuckles. I knew I was there to schedule a biopsy and a full body skin scan. During that visit, the dermatologist asked if I had any cancer screening done and I had said no. I guess it was a little bit of a wake up call, but they scheduled a CT of the thorax & pap smear on August 13th, a mammogram for September 2nd, an Echo Cardiogram for the 24th of September. Some time in the future I will get the dreaded colonoscopy. Because I was now scheduled for a biopsy, the Derm Doc said that they wanted to have me in full flare at the time of biopsy. Sooo...after just one dose of Prednisone, treatment stops! I would now have to wait more 23 days before I could start back up. :(

Funny thing happened on August 13th at the Radiology clinic while waiting to get my CT scan. Tech told me to go into bathroom and remove my bra and come back. When I did, I had to sit in that waiting room with a male tech in there. I felt really uncomfortable. It was no big deal to either of them.

Fun weekend before new tests

My love and I on our first trip to Cedar Point together

Mike, Mandee, and I on the Dragster

My ugly appendage

I was able to just get away and forget about the stuff going on with my health. We had passes for  the Coaster Campout at Cedar Point in Sandusky, Ohio. I really love amusement park thrill rides and figured that if I do my usual covering up and wear a good hat, I will be OK. We got there in the morning on Saturday the 16th about 9 a.m. By 1 pm, I was in full flare with the reddest my knuckles have ever been. We camped out under the coasters. It was so much fun and I hope to have a chance to do it again. When we got up in the morning, we had special access to certain rides before the park opened. We were able to ride almost all the rides and ended up leaving before noon the second day because I just could not stand to be in the sunlight and heat, or even walk anymore. Mike and I were both totally exhausted...Totally worth it though.


Biopsy day - August 27th

I showed up for my biopsy about an hour early. I was supposed to get some sunlight for the last few days before my visit, but wouldn't you know my luck...it was overcast all three days. The desk clerk banded me with my usual wrist band holding all my identification. I waited patiently and was finally called. I had to go through the usual spiel...history, how and when I first noticed something, symptoms, blah, blah, blah! When I pointed out the spots on my chest and told them how one of the moles got inflamed, dried up, and then fell off, as well as pointed out the new spot, they started looking over my body. Eventually, the one biopsy turned into 5.

Here is how she explained it: It is necessary to get a biopsy of the skin on my knuckles and in the shawl area (upper back) in order to verify the skin conditions are consistent with Dermatomyositis. During this testing phase, the pathology may come back to say that, Yes, it is consistent. However, just because they may get a result of being consistent with DM (or in my case ADM), it is still important to test further to find out what underlying condition has contributed to this diagnosis. That is when she explained that she was going to do 3 more biopsies, one on my back, and the 2 spots on my chest because their look and texture are classic for basal cell carcinoma (BSC)...yes, skin cancer.

The procedure was relatively painless. They numbed my skin (starting with the back) and took the biopsies. The back had 2 punches, one for the spot and one for DM verification. Only one incision and 2 stitches though. On the chest, they took 2 slices off of the suspicious moles to prove the BSC they suspected. Then on to the right hand, where they took another sliver of skin to prove DM. Both the chest and hand biopsies were all cauterized instead of stitching them up since they were so small. They made an follow-up appointment for the 10th of September. Now the wait...again.

Images (Don't look if you are faint at heart):

Biopsy site on upper back

Day after biopsy of the moles on chest

Biopsy (Rt pinky knuckle)

Still holding off on treatment as the decision was made by my Rheumy Doc. At this time, she is scheduling more testing. I feel like the VA hospital is beginning to be my second home.

What makes me such a strong candidate for skin cancer?

First off, I am fair skinned and have always been a little sensitive to the sun. I have always burned in the sun for any length, even while wearing sunscreen.

Basal Cell Carcinoma is one cancer that is mainly about lifestyle. When I was a teen, I worked at a tanning salon called Body Bronze Tanning Salon. Each day I worked there, I got a free tan. Also, during my Air Force career, I was stationed at many places where it was common that on your days off, you went to the pool or beach. Well, while in Panama for 2 years, I did just that. I was literally a beach bum. My skin was so dark back then and I always thought I looked great with darker skin. When I left Panama, I was stationed in Colorado and being in the sun was a little harder in the higher altitude. I once deployed to Italy for 6 months in support of the Bosnia Operation, I was back at it every day. I was loving the sun, even though I still burned. I still felt I looked good.

Since my military days, I didn't so much hang in the sun. I had a full hysterectomy in 2008 and the estrogen I was on cause sensitivity to ultraviolet light. There were a few occasion I did go out into the sun and unintentionally got very burned. I remember going on this cruise with my family in 2013 and even though I had some good sunscreen on, I was red as a lobster. I blistered before I even got out of the sun and the blister on my right shoulder has since been there and is now a mole that they are planning to look at closer during my next visit. I really didn't feel I looked good at that time, but still felt the burn was worth all the fun I had.

Most times I burned, I blistered. Once in my life, I ended up at the doctors to be treated for sun poisoning. Yep, i would say I am at risk for skin cancer because of my fair skin and poor choices. I no longer think the choices were worth the fun.

Testing updates - Part 1

Hello everyone,

It has been over a month since I have sat down to blog and I apologize. I know that those who are interested in knowing what is going on have been anxiously waiting for an update. It has been a rough month or so. I struggled to sit down and update everyone because it was over a month up annoying and often painful testing (both physically and emotionally)

July 20th - Biopsy day:

Last I blogged, I was about to go into surgery to have my biopsy. Well, that day came finally and I wet in un-nervous and with the support of my husband right by my side. As a matter of fact, I think he was nervous more than I was. We got there at 7 a.m. and by 930, I was headed under. I woke up an hour later and had a 4-inch incision on my right leg. I really was not in alot of pain. After all, I was drugged up and didn't have a care in the world. No sooner did I wake up, they were shoving me out the door. I saw the surgeon briefly before I left and he said that things went well. My incision was 4 inches long because they took 3 biopsies and the results would come in about a week or two. He said I would have a little discomfort, but it would heal well and once the scar healed, it would be barely noticeable. I was dressed and out the door with drugs. Once I got home, I was resting...and limping everywhere...but not in too much pain. My leg on the side was extremely numb, but the incision site didn't bother me much. I did notice, however, that I went home with some souvenirs, compliments of the Detroit VA Medical Center...just in case I wanted to check my heart from home. LOL

The next day, I was in pain and taking the NORCO that the doctor prescribed. It made me groggy and I did not like the feeling it gave me. I realized that I was also having a hard time going to the bathroom and still needed my husbands assistance getting up and walking around. Bless his heart for taking care of me. He was so patient. Later that second night, I noticed that I had blood in my urine and went to the hospital to get checked out. Yep...a urinary tract infection I had. Not only was I taking NORCO, which made me feel funny, but I was prescribed Cipro, a very strong antibiotic, which made me feel even funnier than before. I was hoping that I would adjust soon, because in the morning, I had to get up early and go to a job interview. NOPE! I got up, took my medications and before I knew it, I was back home resting. What happened at the interview, you ask??? Well, I am not sure...sort of. I barely remember driving there, barely remember the interview, and do not remember a thing about driving home. Not a good Idea to go to an interview high. Needless to say, I never heard from them again. I think that was the most embarrassing thing I ever did in my life (besides stay home from school after lunch in the first grade because I swore there was a bear at our back door).

More testing and Biopsy updates:

Since the biopsy, I had seen the neurologist and she was the rudest doctor I had ever seen. She was originally seeing me for the headaches that this disease causes and did not want to deal with the whole situation at hand. I was a little disappointed because my rheumatologist had sent an order to get a cat scan as part of the testing for this disease, but piggy-backed off of my general practitioner's order to be seen for the headaches. She wasn't having anything to do with a two-part appointment and only wanted to treat me for the headaches that I was originally supposed to be seeing her for. So I left there with more drugs to take without any testing to be done. I have yet to take any of the anti-seizure drugs she gave me. Do I really need more drugs from a non-english-speaking, arrogant, over-paid guesser??? NOPE! At that time, I decided to wait until the next week when I aw my rheumy doc.

Update on surgery:

July 27th came and I was finally able to see the Rheumatologist. As soon as she saw me checking in, she ran back with excitement to check to see if the results of the biopsy were submitted. When she finally came in the room, she explained that (of course) the results were not submitted and she had to take some extra time to get the report from the pathologist. The news was semi-disappointing. Not that I wanted any bad news about the results, but it showed that I had mild atrophic fibers, scattered hyper contracted fibers, very minimal miopathies. Essentially, not much to go on. However, Dr. Mosely reassured me that this news was nothing to fear, but a new step in the direction of proving that not only did I have Dermatomyositis (DM), but since I had a near-clean muscle biopsy, they were leaning more toward the less sever version of the disease, which is called Amyopathic Dermatomyositis (ADM). That means that I have the disease, but it is only affecting the skin only. This is great news...sort of. It was explained to me that a diagnosis of ADM doesn't stop there. Now that they know I have DM, and it is the less sever version (ADM), they have to find the reason I have that disease in the first place. It was explained to me that the reason people get ADM is usually because of an underlying factor, such as illness and cancer. My next step would be to see the dermatologist, which is scheduled for August 6.

Other testing:

My surgery follow-up was August 4th. No news there since I already had seen the Rheumatologist and she gave me the results. I guess the only reason I went there was for them to tell me that my incision was healing good.

4 days Post Surgery (July 24th

August 4th

What to look for on Part 2 of this blog post:

A visit to the Dermatologist and more testing.
Another diagnosis
A new treatment path