Chemotherapy - Session 2

Thursday's session of chemo went well...well, as good as can be expected. I woke up super early because I wanted to be the first at the lab and one of the first to get called for my go-go juice. I knew it was going to be a long day and wanted to get this ball rolling. I have heard that after the second session is when you start to notice a change in symptoms. Let's get going!

Leading up to chemo day:

I always try to do something for myself to boost my morale. I used to have beautiful skin and hair, but the last couple years, things have changed. The night before my next chemo round, my friend Amanda and I went to
see Dirty Dancing on Broadway in Downtown Detroit. To prepare, I went to the salon and got my hair colored and then went back to my house where Amanda and I watched the movie as we prettied ourselves up. We were laughing and dancing as we got ready. We were dressed to the 9's. I wore my silver shoes just in case I decided to dance in the aisles. (Wink, Wink) The show was awesome, as we knew it would be. I managed to sneak in a forbidden photo of the defining moment. We both enjoyed the show. There were some quirky parts that were added from the original movie version, but overall, the show was well put together and their use of graphics was very clever. After the show, we got in line and got a photo with Johnny and Baby,
which the proceeds went to charity. Amanda carried a watermelon! What a great night! I needed that! We then made the long journey home so I could hit the hay for the big day in the morning. Unfortunately, I couldn't sleep. The time ticked on as I kept looking at the clock. 12:50...1:27...2:45...3:10...4:05...I just couldn't sleep. 4:05 a.m. was the last time I remember looking at the clock before 5:30 rolled around and the alarm went off! OH HAIL NO! I couldn't wake myself to get up. I was so exhausted from not sleeping. I knew this was going to be a tough day.

Being scolded!

Chemo - Day 2:

After getting called back, first thing the nurse tells me as she is starting my "special bracelet" (IV)...Your hair color has changed. We generally tell

Juices are flowing

My Rock!

people not to color their hair while they are getting chemo." OOPS! I had no idea! I took the lashing in stride, but they didn't stop the procedure. I was ready to start the pre-meds. Yes, the loopy-maker! The benedryl typically makes me loopy, so they start with the hydrocortisone and something for my stomach. Once that is in me and I have done all the verifying, they give me the benedryl because once that kicks in, it's over...no getting straight answers out of me after that! My husband could not stay because he had meetings at work, so once I was started on my drip and he snapped a thousand pictures, he took off for work. I was going to be all alone for the day until he came back. My family has a busy life. Those who weren't busy found excuses not to be there. They must have a weak stomach! Luckily I was under the best care with the best nurses.

Stopping again:

The usual 2 hours into the process and when they are starting to speed up the amount of flow, I start having signs of struggle, so they stop the process. This is going to be my norm. Once I get more pre-meds in me, I tend to tolerate the process a bit better. My body just does not like chemicals in it. I never really have used many medications; not pain medications, and

My Go-GO Juice

certainly not even over-the-counter stuff for colds and fever. So all of a sudden, when I get this human/mouse gunk flowing in my veins, my body automatically wants to say "NO WAY!" Luckily, once they give me more of the precautionary pre-meds, I am on tolerating it better and back at it.

The day seemed to flow by fast because I slept most of the time, but for the usually every-15-minute vitals checks that nurse Mavis came around for. I tolerated the rest of the day and after a while, Mike was back to sit and watch me sleep until the process was done. This time, I was done in a record 10 hours versus the 12 I did last week. Unlike last time, I was not full of energy. I was weak and tired from not sleeping the night before. When I got home, I tried to stay awake, but just couldn't endure the fatigue. I went to bed about 9 O'Clock...just after Survivor got over. I slept hard.

Resting in Amanda's car

The next morning:

When I woke up, I was tired, but feeling pretty good. I had no hand pain, but did have the usual back pain and stiffness I have until I get up and moving. I had a busy day planned, as I was going to try to help a

My protector!

friend with some of her jobs. She allowed me to sleep in between jobs, which really helped me build some energy up for the next place we were going. Although throughout the day I was tired, the only effect I really had was the bubbly stomach, which never led to me getting sick, and the tingling in my fingers. I still have a bit of a penny taste in my mouth, but it is not a strong this time around. Just a little uneasy. I went home and rested the rest of the night. My kitty, of course, was right by my side the whole entire night. She seems to know when I am not feeling good.

The Mother Hen still by my side

This morning:

Woke up this morning feeling pretty good. Kitty was still by my side while my hubby slept. I took a bath and she "mother-henned" me until she knew I was OK. She stayed on the towel next to the tub until I got out and dried off. Then she whipped around the house like she just took some street drugs and I have not seen her since. She is crazy, but has added a lot of spunk to our household!  I feel pretty good this morning.

By any other name

The dreaded C word!

The first thing that comes to mind when someone hears you say "I am going through chemotherapy" is...cancer. When I told my family and friends that I was going to have chemotherapy infusions, many of them couldn't help but wonder what type of cancer I had. Fact is, I have not been diagnosed with cancer, rather a rare autoimmune disease which requires a type of chemotherapy that attacks the CD20 protein on the surface of my immune system B-cells. When my Rheumatologist first told me I would need this therapy to treat my Dermatomyositis symptoms, she explained that it was technically chemotherapy, but it wasn't.

     Yes, Rituximab is chemotherapy, but technically speaking, it is a chimeric monoclonal antibody, which means that it is a mixture of human and non-human antibodies. In this case, we are talking about mouse antibodies and human antibodies. These antibodies in Rituximab are used to treat some cancers, but that is not the only purpose of the drug. It is also used to treat many autoimmune diseases, such as Rheumatoid Arthritis, Autoimmune Encephalitis, and Myositis (all types).

     So why do they refer to it as chemotherapy? Why not call it antibody infusions? Well, chemotherapy is a mixture of chemical substances used to treat diseases, especially cancers. So why are they calling it chemotherapy when they are actually antibodies of creatures, such as humans and animals, and not chemical agents? Doesn't matter! It's still chemotherapy.

     As for me, I call it go-go juice. Not because it is juice at all, but because I am expecting it to make me go-go again like I used to. See, there used to be a time in my life where I would go and go and go. A great friend of mine used to say that I was going "Full-tilt Boogie!" This was true. I was high on life and on a quest to provide for my daughter as a single parent and give her the best life. I literally never stopped and barely slept. Each day, I would get up and go...and go. My body never tired from all the hard work. I often rewarded myself for all the hard work I did by getting massages. I swore by them and the healing waters of the Colorado Hot Springs. Then, cut to my move to my hometown in Michigan. I resigned from the job I took to move back here and the stress of that difficult decision took a toll on my body. I started to slow down physically and mentally. Before long, I had this stupid diagnosis, which led to my infusions of Rituximab.

     The first infusion gave me a burst of energy and temporary pain relief in my hands. At one point in time, I actually got excited because my knuckles were a little less red than the day before. But that excitement faded away before long as the relief was only temporary and were back within a couple days. Bummer! I wanted to be able to get up and go again like I used to. That's all I want. My Go-go juice is supposed to combat the symptoms of this disease so I can go-go. I am waiting for that to happen and eventually, it should. I realize now that it really isn't go-go juice after all. It's just an infusion of possible hope, a mixture of mouse and human antibodies, a treatment that will provide temporary relief for now, but not lead to a cure and called by no other name than "chemotherapy".

First round of Chemotherapy

This morning I wake up just like I do every morning...going through the process of rolling myself out of bed without tripping or falling, then I stumble to the bathroom. Then I make my way to get coffee as I try hard to exercise every joint and muscle in my body. It takes time and is a great process, but after a bit of maneuvering, I am able to start moving. I wasn't sure if I would feel any different this morning than any other morning.  Yesterday was quite the experience.

I did so much preparing the night before yesterday because I wanted my house in order in the event I came home sicker than a dog. I scrubbed the house from head-to-toe and made sure all the wall hangings I pulled out of storage were finally up on the walls. Every last detail had to be perfect...not because of the OCD in me, but I felt that if I kept myself busy the night before, it would take my mind off that fact that I was about to get my first chemo infusion. Wait! Did I just say that I am getting chemotherapy? Me? Yep! Reality is finally setting in. You see, chemotherapy is not just for those with cancer. It is also used to treat many autoimmune diseases. Selena Gomez is a prime example. She gets daily doses of Methotrexate to treat Lupus. I recently read an article about it: you can read it below:

http://www.nydailynews.com/life-style/health/selena-gomez-othres-prove-chemo-not-cancer-article-1.2406168

So jumping back to preparing, I didn't go to bed until 1 in the morning the night before heading to the hospital. I wok up about 5:30 and began running around frantically getting last minute details in order. I wasn't really nervous as much as I was anxious. It was finally time to get some relief from this stupid disease that has been haunting me for quite some time. I felt if I kept busy, the time would tick away quicker. I could have sworn that someone kept taking the clock and turning the hands back because time was not going by quicker.

We finally get to the hospital at 7:15 a.m., just as the nurse told me to. She said that I was to report to the lab to get my blood work and then report to the Chemotherapy wing. One small detail...the lab didn't open until 7:30 a.m. That 15 minutes I had to wait felt like 3 hours and 46 minutes. I was 6th in line. I finally got my blood drawn and headed to Firm E (The Rheumatology and Chemotherapy wing) and checked myself in. There were several people who checked in for chemotherapy along with me. They were all cancer patients. I sat back and listened to them all talking amongst each other about their experiences with their cancers and treatments. It was kind of sad. I could not put myself in their shoes because I do not have cancer, but we were all in an elite group of individuals who are at the mercy of doctors to treat and/or cure whatever ails us.

They finally called me back and I got my chair. The ward is an open wing with chairs all along the walls and a nurses station in the middle at the head of the wing. I had 2 nurses, which I will see every time. Their names were Mary Ellen and Mavis. They were the nicest nurses I ever met (Well besides my #1 nurse sister, Gail ;) ) They served me breakfast: Wheaties, a hard-boiled egg, coffee, and pears.

It was now time to get my IV started. I have always had luscious veins. Yep, big fat Brusseau veins, especially in my right arm. So Mavis asks me which arm I got my blood drawn from, and of course I tell her it was my right arm. Good, then I get to have the IV in my left arm for my infusions. I point out that I had a few good ones in my hand on my right but the better veins were on my left. No deal! There was a risk since I already had a puncture on that side. She proceeds to start the vein in my left

My biggest supporter! I LOVE HIM!

hand. It was very painful, I tell you! Worse part...it collapsed! We had to get a new vein. We did find one on the under side of my right arm and that one too collapsed. Not my day for veins, I guess. I typically NEVER have problems or pain like that. Mary Ellen came over to assis and found a good vein in my left forearm. Third times a charm I guess.

In preparing for the Go-go juice (As I call it) I had to take a few medications. I got a bag of hydro-cortisone and another bag of 50 mg of benedryl. This was so I could counteract any rejection or side affects of the Rituximab. At that time I explained to my doctor (Who was present as I signed the "permission slip" to treat me with chemo) that I react to the smallest doses of any kind of drugs or stimulants. Sure enough, in not time, I was loopy and could not form any sentences. I'll just shut up so I don't make a fool of myself. LOL! I could swear that accidently dosed my with a high dose of morphine instead of benedryl!


The greatest thing happened! In my loopy stage, I realized I was hearing this beautiful music just like the kind you hear when you are getting massages. I open my eyes and realize standing at the end of my chair was this lady playing a harp. It was so surreal. I have been to the VA Hospital enough over the last several months to know that there are people who often play instruments in the atrium, but this lady was playing a harp in the chemo ward. It was beautiful and very relaxing. For a second, I thought I
had died and went to heaven. Then I realized that I was higher than a kite, getting chemo, and there really was a lady playing a hard for us chemo patients. Very calming!

Finally, at 10:30 a.m. they started the first drip of chemo. It was a bag of 635 CC's of Rituximab. They wanted to start me out at a slow rate and boost me up as I tolerated it; 25 CC's per hour. After I tolerated it for 30 minute, they boosted the rate of to 50 CC's. It was at that time that I realized that my throat was sore and I was having a little difficulty breathing. Here we go! Stop the treatment. This seems to be my norm. They dosed me up with 25 mg more of

Still here!!! Moving at a slow pace!

benedryl and I was on my way again. Started out this time with a smaller dose after the doctor gave the go-ahead with more benedryl. Not so fast! Not even 10 minutes in comes the hot flashes & hand and feet itching. The immediately dosed me with more hydro-cortisone and I was back at it again at an even slower rate. They warned me that if my was to continue rejecting and giving all these side effects, I would have to stop and they would have to find a different treatment. I was able to change my shirt into the T-shirt I came prepared with in case I get too hot, which happens often these days. I never did end up reading the magazine I brought or blogged like I intended to. I was too loopy for any of that!

Done!

Over the course of the day, I endured the rest of the treatment without too many more complications. I didn't complain anymore about the occasional itching in my hands and feet because it was so mild that I felt it wouldn't hinder anything. Finally, yes finally, about 7:15 pm, the last few drops of go-go juice were trickling into me and I was starting to see the end of the tunnel.
I can't believe I endured it! I actually endure a grueling 12 hours of chemotherapy in a hard-as-a-rock chair and only got up a few times to use the restroom. I normally can't sit still for more than 10 minutes, let alone 12 hours! It was then that I got my final instructions for what to do in case of emergency (take temperature every 6 hours, don't prepare food for 3 days (Wait! What?), flush twice after going to the bathroom, stay away from anyone who shows signs of being sick, have my blood drawn in my left arm next week so that I can use my luscious veins next time, etc) It was then that they removed the IV and sent me on my way. I didn't have too bad of a bruise on my hand where my vein collapsed.

When I left, I went to Michael's with my husband to grab something and got home and felt like a 100 bucks. I couldn't say I felt like a million bucks like people normally say, but I felt refreshed and knew I was going to sleep well. I kept thinking of what I was told...it will be 2-3 weeks of treatment before I get any relief from this hateful disease. I actually didn't sleep well last night, which doesn't surprise me. On a good note, I feel like a 1000 bucks this morning. The only lasting effect is a little bit of tingling in my hands.

One last thought... The nurses gave me some beanies and scarfs that were hand made by this organization. Each came with a doll attached that had their own names. They were precious. 

Signing off until next time!

Jacki Lynn

It's No Wonder...

Well it's no wonder I am so tired all the time! I have always been a go-getter. From the moment I left home in the late 80's, I have been on my toes full-tilt boogie! (That is how a special friend of mine put it) I raised a beautiful young girl from the moment she was born until she went away to college...by myself. I always worked more than one job to stay afloat. When she was old enough to get her first job and have money to buy some of the things I always worked so hard to buy, I found myself working even harder to do the things I always wanted to do but never had the time or money to do. I fell in love, got married, then made a move from Colorado back to my hometown in Michigan. All without a hitch and unknowing of what storm was brewing in my own body. I literally never stopped...until one day...

I have always thought of myself as pretty healthy. I never got sick and when I did, it wasn't very bad. After losing a job one year, I got sick and kept getting sick. I attributed it to the mold I had been exposed to at a house I lived at. I have always been a little sensitive to the sun, but over the last few

My BEAUTIFUL Daughter

years, the sensitivity became more and more intense. It's no wonder I had no idea I was carrying a monster around in my body and didn't even know it. Heck, I didn't even realize that getting up in the morning and stumbling to the bathroom and having to walk the house for a bit in order to iron out the kinks and ease the pain from the night was attributed to what I know about my health now.

First selfie ever taken!

Then, there were the days when selfies started to become popular. My daughter was the queen of
selfies and her flawless beauty was easy on the camera. For me, under her encouragement, I got pretty good at being able to angle the camera in the right spot to get the best selfie. It's no wonder I didn't notice the rash on my hands until now. When I was on a working diagnosis for Dermatomyositis, my husband and I looked back on 2-3 years worth of pictures I had taken, or someone else had taken and we saw that telltale rash that I didn't notice until as early as February of this year. Even on the day after I got married, almost a year before diagnosis, the red knuckles and Gottron's papules were visible. Yep, it's no wonder I didn't notice when I should have!

July 2015

May 2014

So then, cut to now...Here I am, slowed down, walking at times like I got ran over by a freight train in the morning until I get my blood flowing, barely able to comb my hair at times when other times I popped up like a whack-a-mole without struggle or assistance from the help of my husband. Some days I can barely get through the day as I am slow and fatigued and other days when I whip through the day like a pinball bouncing off the walls (but look out when I stop) I know now that my body is attacking itself. I now know that the times when I couldn't keep my balance and would trip because I didn't pick my foot up all the way as I walked was attributed to a beast I cannot cut ties with, and its call Dermatomyositis. It's no wonder I didn't know that I was slowly being defeated mentally, physically, and emotionally. I know now, but it's no wonder I didn't know sooner.

My #1 and I on our 1 year anniversary of dating

The greatest sister anyone could ever ask for

I have never been the type of person who has said "why me?" I have had a lot happen to me in life and have always felt that I have been built strong and can handle anything that has been thrown at me. I used to never question why these things happen because I always felt they were learning experiences in life. I now silently question why I am enduring this and not others, but only a little. I told my sister one time that my life has been a living hell since I moved back to Michigan. First I had to resign from a job that turned out to be a nightmare, then I get sick. I felt I made a mistake and felt that I wished I never made the move I did, when I did it. She told me that there was a reason I moved back here and it was my fate. It was meant to be that I met someone from my hometown, married him, and moved back here. It is no wonder that God put my husband in my life when he did and chose our fate together because, like my sister said, it turned out this way so I would not be alone during this struggle I am going through. Although she is younger than me, I have always looked up to her and I am thankful that she is here for me, if at least just to give me a hug and tell me "you'll be fine. We will all get through this together!" Someone was looking out for me so that I do not have to "Go it alone!" My husband is my rock and I do not know what I would ever do without him. He never complains about getting up to help me out of the bed, or even the tub. I love him so much and would be totally lost without him. Gail is right, I do not have to be in this struggle alone.

It's no wonder I never knew all these things...but I do now.

New symptoms, new results, new treatment plan

Finishing up my update today...

Yesterday, I started an update. This is the rest of it. So sorry for not updating all at once. Lately, I have found it hard enough to sometimes get through the day, let alone sit and blog about what is going on. I know it bores some people to pieces and even annoys others. Although I still find it difficult to sit and write, I still find it extremely therapeutic sometimes. So here goes...

My number 1! What would I ever do without him?

During the long wait til the next trip back to the Rheumatologist (Well at least it seemed like forever), I tried to be as patient as possible and kept myself pretty busy. I enjoyed some time with family and friends. My daughter, Abigail came out for the weekend of my birthday, which turned out to be too short, but I loved every bit of it. She bought me a really nice Pandora bracelet for my birthday. I can't wait to fill it with the charms that represent my life. One weekend, I even spent it on the lake with Mike's cousin and his wife. I had a nice time. It wasn't too sunny and the lake was absolutely breathtaking. I sure wish that we lived on a lake like that. Maybe some day.

New symptoms

While waiting for my next appointment, I started to develop new symptoms. It was said all along that, untreated, I would start to get new symptoms of this disease and some would be unpleasant as the disease progresses. A couple weeks ago, I started to get really red and hot ears and face. At first, I was assuming that they were like that from hot flashes, but I found out that is not the case. It's just part of the disease, unfortunately. One thing I did notice, it the start of the Heliotrope on my eyes. That's the purplish marks on my eyelids. That is one of the biggest telltale signs of DM. My hands continue to get redder and redder. The Gottron's Pappules have increased and Mechanic's hands are becoming more and more pronounced. The worse part is the arm and hand pain. This most recent trip to the doctors, a few tests were done and it has been determined that I have carpel tunnel syndrome, more than likely a cause of DM.

Treatment Finally Begins!

October 15th, 2015 - The day I was supposed to go to the Rheumatologist and get the intended medications for treatment: Prednizone, Methotrexate, and possibly Imuran. I get to the doctors and go through the long, drawn-out process of giving the "Fellow" on staff the low down and new symptoms. Dr. Mosely comes in and does her usual thing where she brings other interns and fellows in because it is not every day they see a patient with this rare of a disease. She finally explains to me that unfortunately, I need a special Chemo to tackle this disease. Yep, Chemo...as in Chemotherapy.

She explained to me that the blood work had changed since my last visit (ANA had changed from 1:80 to 1:320 and other antibodies of DM were detected) and since the new symptoms have appeared, I would need treatment with a Chemo drug called Rituximab. It is a chemotherapy that treats minor cancers, Lymphoma, and many serious autoimmune diseases, such as DM, Polymyositis, Lupus, and Rheumatoid Arthritis. Treatment starts on the 22nd. I will be going once a week for 4 weeks and then monthly after that. Each infusion will take roughly 4 or so hours. I am told that there are minimal side affects, but it will make be very tired the day of the treatments. I was also told that I probably will not lose my hair and probably will not have days of sickness afterward...just fatigue, but what's new, Ha?!

So there you have it! You now know where I am at as far as the treatment and what is next. I will try to blog next week, but I can't guarantee I will be able to endure staying awake. See you all then! Hugs!

Not so fast...

Not so fast...

Since my last blog post, I have struggled to sit down and write about what is going on. In August, I made a trip to the Dermatologist. They looked me over and decided that it was time to get some skin biopsies. Since that day was day 1 of the Prednisone treatments, they advised me to stop immediately in order to get an untreated skin sample. So, just like that...I was not going to start treatment after all. On my last blog, I mentioned that on the second Dermatology visit, they took 5 biopsies. At that time, they told me I had some basil cell carcinoma, yes, skin cancer. Easy enough! Dermatomyositis (DM) is associated with cancer and that would be the explanation, right? Not so fast!

When I received the results, they indicated that there was no basal cell cancer, but one of the spots on my chest were just Lichen Planis like Keratosis and the other was an intradermal nevus. What does that mean? Basically, it means that I have severely damaged skin lesions on my body that may lead to skin cancer. At this time, they are not cancer. These lesions are permanent.

The biopsy from my shawl area (upper back) was found to be Piokiloderma (Damaged skin lesions) and consistent with DM. Finally, the biopsy taken from the right 5th knuckle was consistent with DM. So there says it! Not that I have been waiting for it or wanting it, but I officially have my diagnosis of DM. Just like I thought all along, but it took months for the proper diagnosis. Yes, I now know I for sure have Dermatomyositis! Now what do I do to start getting treatment so I can feel better?

Best Therapy: The love of a new kitty

They always say that a cat is therapy. Well, Mike and i got this awesome new kitty.
Her love alone (Well nothing can top the love of my hubby) is great medicine. Meet Nala! She is a Maine Coon. When we took her to the vet, they indicated that she will be quite a large cat. We just love her to pieces.

Unlike most cats, she loves the water. Whenever we go to the bathroom, she has to be right watching as you flush and head in the sink as you wash your hands. Sweet stuff! The is the Queen of the Roost!

What next?

Not the way I wanted to spend
my birthday :(

The next step was a trip back to the Rheumatologist. When I finally went there, I was under the understanding that I was to start a new treatment regiment. Nope! Guess what??? More testing! Dr. Mosley told me I would be starting steroids and a drug called Methotrexate...soon. But first, I would have to do some things. Remember the CT scan after the muscle biopsy? Well they found a lesion on my liver (right lobe) and a nodule on my right lung. I had to get those checked out and had appointments scheduled for that. On my birthday, I ended up in the hospital emergency room with severe back pain and treatment for that same UTI that never went away. I got treatment with a new antibiotic, which eventually worked. Happy to be rid of that!

My new birthday bracelet

They did another CT Scan at that time and saw the same nodule and lesions. At that time, my primary care doctor said that I had more blood work for checking my kidney function, and the Rheumatologist said that I needed to see if I had a natural infection of chicken pox. I also needed to recheck my autoimmune nuclear antibodies (ANA). Then I would go to appointments for a liver ultrasound and MRI.

Findings of new tests:

Liver: The ultrasound and MRI showed that the lesions on my liver were hemangiomas. These can be normal and given my recent stop of oral estrogen, it more that likely is a result of that. I will have to follow up in 6 months.

Lungs: A trip to the pulmonologist proved nothing but the fact that I have a nodule on my lung and it is small enough that I can follow up in 6 months, unless more problems arise.

Chicken Pox? Yep, had natural infection. Based on the amount of antibodies, I had it more that 12 years ago. This information was needed because if a patient gets shingles while taking methotrexate, it can be deadly. I am in the clear.

Kidneys: Kidney function test showed perfectly functioning kidneys. :)

ANA: At the time of all the testing, those results were not back.

Life goes on while doing more tests. Since the middle of September, I have been steadily going down hill on this roller coaster; losing strength, gaining more symptoms, fighting through the extreme fatigue, and being happy that I am getting closer to getting treatment so I can feel better.

Knowing I could have some serious changes in my appearance once I start treatment, I decided to get a mini makeover (My sister colored my hair). What do you think?

Red hair? Yay? Or Nay

What will be on the next blog?

More symptoms, Disease Progression, Scheduled treatment.

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

A week of testing and more appointments

Hello all -

First off, I want to start off with a positive note: Today, I feel pretty good. Days like this seem to be few and far between, so I thought it was be great to finally be able to say that I am feeling pretty good...and still without treatment. I actually went to a pool gathering today at my niece and Brother-in-Law's house...but not before stopping at Dick's Sporting Goods to get some Solar/Anti-UV sleeves.  There was only one brand and style and they were very expensive, but I was in great need of them. I am sick of using the so-called anti-UV shirts that claimed to keep me cool, but only made me sweat more like a pig. I was quite amazed.

My newest "cover-up" apparel

They worked great and most of my body was away from the sunlight. So...I will not be totally non-existent in the world of outdoors. I just hate the idea of having to bundle up like a hermit crab. Today, I actually ventured out and took Scooter and Daisy for a 15 minute walk.

Sometimes, I think if I just get outside and go with the flow, I will feel better. Yesterday, Gail, Dottie, and some of their kids ventured out to the Detroit Zoo between rain spells and I tagged along. I was a little leary, but I had on my wide-rimmed hat and anti-UV Nike shirt on. Since there was not alot of sun, I didn't do too bad, but I limped a little and had a huge headache by the time I got to lunch. This is in part from the constant fatigue I have. I actually kind of enjoyed the day, but crashed hard once I got home and did not leave the couch until it was bed time. My typical routine. I am going to try to change that. Rumor has it that things will be so much better once I start treatment. Gotta finish getting all the testing done, but the process takes forever. Wait...for now! That is what I keep hearing.

Detroit Zoo - 7/17/2015

BIOPSY SCHEDULED

A lot has happened this week. On Tuesday, I went and seen the surgeon. I was not very thrilled even before going in because of what happened with the nurses with attitudes when I scheduled the consult. I am basically at the mercy of the VA, and for this procedure, Dr. Walter Salwen. He was friendly and empathetic to my situation. He explained the entire procedure to me on how they would obtain the muscle biopsy I need for the rest of my official diagnosis.

I go in this Monday, the 20th of July. I have to be there at 7 a.m., which means that I have to starve myself of food and water after midnight. My procedure is not even until 9:30 a.m. It is supposed to last about an hour and a half and I will recover for 1-2 hours, then I get to go home...just like that! It will be done as an outpatient surgery, but with a general anesthetic, which means I will be out for the procedure...Yes! I get Propofol!!! (It's good stuff) I do not think I can handle being awake while a doctor is slicing into my leg and muscle. They will be doing it on my right thigh, or as they call it, the right anterior thigh (Vastus Lateralis).
In simpler terms, the right, upper/outer thigh muscle (Quadriceps). Dr. Salwen says that he will take 3 1-inch slivers of my muscle. To see how it works, you may follow this link and watch, but I warn you that it is not for the faint heart. I could barely stand to watch it. Here is the link:

https://www.youtube.com/watch?v=6gG9EZEGI_Q

The results of this biopsy will allow the doctor (my Rheumatologist) to know for sure the diseases which they suspect are plaguing me, and the amount of degenerated caused from them. By knowing this, she (Dr. Mosley) will know the course of action and drugs to treat me with. Fron what the surgeon said, the results will take roughly 2 weeks. Dr. Mosley still wants me back in her office on the 27th. She thinks the results will be back by then. If not, she is not available again until the 12th of August...which would mean a longer delay in treatment :(

Testing welts

ALLERGY TESTING

On Thursday of this week, I did some allergy testing so they could rule some more stuff out during my diagnosis phase. I am not plagued with many allergies. Never have been. I was only aware of a severe dust mite allergy and a slight dog allergy. I suspected that I had some mold allergies. They did the testing on my inner forearms. I found out that I was still highly allergic to dust mites and cockroaches too, but also allergic to cats slightly, and oak. There was no mold allergies present, which shocked me, but what surprised me most was that I am only very slightly allergic to dogs now. I guess having three of them has helped build immunities. My husband may not agree, but maybe we should get a kitty too so I can get rid of that allergy.

CLAY PACKS:

These Thermal (Hot/Cold) clay packs are the bomb! When my hands are hurting, I pull them out of the freezer and wrap them around my "fire hands". I have instant temporary relief for a few hours. They are meant for wrapping around the torso, thighs, and other areas, but I have found special uses for them. Thank you to my sister Gail for our introduction. We are a great team...my clay packs and I!!!

PLAGUED WITH BAD THOUGHTS

I am not scared by the thought of the procedure, rather that they will go through this procedure only for them to say, "Nope! That's not it!" There is always the possibility this could be other disease(s), but highly unlikely. Still worries me because I read that it is possible that the muscle biopsy will be inconclusive and other testing is required to show the progression. I guess I will soon find out. I will keep you all posted on how my procedure goes on Monday.