Hello all,
Yeah, Yeah, I know it has been a while. Last anyone heard from me was Mid-November. i was about to do my last week of Chemo. That was a very grey and trying time for me. I was struggling with putting this harsh chemical into my body and not seeing results. I know there have been many of my followers who have followed my disease and my progress and have often asked how I was and what was next. The biggest struggle I had was not just telling people how things were going, but to actually make them understand what I was actually going through, how to understand, and how the help me. Believe it or not, I do have some people close to me who refuse to even try to understand what I am going through with the silent, unseen disease that is taking over my life.
Late last November, I finished my last round and was told go home and wait. And that is what I did. I waited months. I had a few appointments in between and my blood work never gave any indication as to whether or not I was responding to the chemo treatment, nor did it indicate whether I was headed toward remission.
By late March, I felt I was responding. However, by the time for my follow up appointment in early April, I was told nothing had changed and it was finally time for me to be taking the dreaded immune suppressants (1000 MG of Cellcept daily). I did the usual blood work and went home to wait more. I actually can say that once on the Cellcept, I did start to notice changes, such as nail growth, smooth skin, and a bit more lively feeling. One week later the results were in and I noticed that my Creatine Phosphokinase (CPK) was at 41, which should be an indication I may have been in remission. After all, I had more energy than normal and was actually participating in physically demanding activity without too much trouble. Then suddenly I am not feeling so great.
Jump to today...in just a few short minutes, I leave to make the trek to Detroit to find out if I am in remission or not. The doctor told me that if I am ot, I may have experienced it for a short while between visits. Fingers crossed I am.
Talk to you all when I get back.
Jacki Lynn
Thursday, June 9, 2016
Wednesday, November 18, 2015
This week's update
It seems to be my norm these days to only get around to blogging once a week. So here is my weekly catch-up:
Chemo - session 4:
It was time for celebration before my next infusion. It was veterans day and time for some of us veterans in the family to make our way to our annual Veteran's Day night out to get our free dinner at
Applebee's. This year it was myself, my uncle Jimmy, our friend Joe, my mom, my hubby, and my aunt Sylvia. We got in right away and had a wonderful dinner. I stayed away from the beef because it upsets the stomach when getting chemo infusions. I had a chicken dish. We had a great time. Thank you to all those who have served.
Thursday came around pretty quickly last week. I seem to be keeping up with a trend of having the best of intentions of getting to sleep early on Wednesday nights in order to be prepared with plenty of sleep for Thursdays. I knew that I was either going to have a very long day with having my infusions all day, or I was going to show up and the doctor would be there waiting for me only to give me the news that I wasn't going to give me my last infusion.
I got there on time and pulled my ticket for my blood work. Number 10! Dang! I was hoping it would go by quickly though. Then I checked in at the chemotherapy clinic. Despite having a higher number for my bloodwork, it went pretty quickly since there were 2 techs drawing blood. I got through the morning process and was on pins and needles until my name was called. I went back and sat in my
usual chair and waited. I had breakfast and waited and waited. My table sat with all the prep stuff on it and I waited more. I kept staring at the blanket and thinking "I could be sleeping by now." and "I wish they could go throw that in the microwave and drape it over me like they do in the ER!"
9:30 a.m. rolled along and I was still sitting there staring at my table. Everyone else was getting their infusions and I was staring at them. The nurse kept coming over and telling me that they had not heard from the doctor and it should be any time. She was on vacation the last 3 days and she would be in soon. Mavis said that she usually rolls in at 9:30 a.m. and that it would be any time. Then eventually 11:30 came by and still no word. I was getting very angry at that time. What irresponsible doctor leaves their patient hanging like this. I eventually find out that the doctor is on her way and had some troubles that were delaying her but the reason I did not get started was because she wanted to talk to me as soon as she got there. Uh Oh! I guess I will be coming home early. I guess I will be switching treatments and I knew that meant on one thing...the dreaded IVIG infusions.
I dreaded my doctor telling me I had to switch to IVIG. I have heard so many different stories about the IVIG treatments and its horrible side affects. I guess I would find out soon when Dr. Mosley got in. While waiting, I struct up a conversation with the guy in the chair next to me. He was getting IVIG for some rare neurological disease that I do not remember what the name of it was. He said he had no side affects and had bee coming in monthly for his infusions for 6 years. I was glad to find one person who was pleased with the treatment. I chatted with him for quite some time. Right toward the end of the conversation, Mavis comes up to me to let me know that she does not see at this time that I would be getting my infusions because it was getting close to noon and if we started my infusions now, it would be midnight before I got done. Here come the tears. Frustrated.
FINALLY!
In walks Dr. Mosely just before noon! It's about time! She immediately apologized for her tardiness and started telling be about the infusion and the plan for the day and was asking how I felt. I told her that I was feeling like I would not reject the chemo again because I felt that had I had last week's chemo sooner that 3 hours after starting the pre-meds, I would not have rejected it. She agreed, but said that today we would only do a half dose of 320 Mg and I would come back next week (which is actually tomorrow) for the remainder. Ah! Just was I was waiting to hear.
Mavis immediately started my IV line and got my pre-meds flowing. She used the vein just about the one she used last week. I was impressed! She wasn't a vein meanie this time and I was without pain as she prepared me. soon after, the usual drowsiness rolled around and I started my chemo drip. My
patient husband chatted on the phone with his friend and edited some pictures on his laptop. He is ALWAYS there for me. No Matter What!!! Even when I am loopy and demanding, there he is with a smile on his face! As time went by, I was having the usual throat scratchiness that I get when I started to reject and Mavis did her usual "stop the drip and call the doctor" routine. I get more pre-meds and she gets me flowing again. She is a funny nurse. I
wouldn't have it any other way! She talks to herself so she is on her toes with what she needs to do and often comes over to chat stories with me about her daily dealings as a nurse. I think if I had any other nurse, I wouldn't have my days got the way they do. She is fun. I asked her once if I could get a picture with her and she said that it was against policy and she would have had to sign a release, but I snuck one anyway. I just snapped a small one when she wasn't looking. Gotta love smart phones. ;)
Eventually, the day finished up and I was done at 5:30. I felt ok, but felt that if I had any more of the chemo, I would have exploded. Mavis told me that ANY kind of sign of rejection or illness would require a trip to the ER! I was most vulnerable now for a while. Mike took me home and I rested the rest of the evening.
Am I sick? First trip to ER
Well, she warned me! Any hint of illness and I had to go in. I helped a friend on Friday morning and for the most part felt pretty good. I woke up in the morning with a stuffy nose, but felt pretty good. As they day went by, I started to feel like had a sore throat and like I was getting sick. Just after lunch time, I started to not feel good and felt a tad bit flu-ish. My throat felt like I was coming down with something. I made the dreaded phone call to the nurse and she said to head to the ER immediately.
On my Friday night, I didn't want to spend it in the ER, but Mike and I took the trek downtown. They took me in and gave me a private room of my own so that I did not get exposed to any germs because of my weak immune system. They checked me over and felt that I was a little bit dehydrated and
should get an IV while being checked over. They had it wide open for my drip. I videotaped it because to was quite interesting how that much fluid could be flowing that fast into me. Eventually, they decided that I had a little post nasal drip and I was just fine. I went home feeling OK and took some pseudophed for my nose. It made me a little sleepy, so I went to bed.
More signs the treatment may be working
I laid around a lot throughout the weekend. I had periods of fatigue and more periods of super-sized energy. Yes, I found myself popping out of bed quicker and getting off the couch faster. This week, I was able to show my husband that I was able to do a couple squats without trouble. I am not sure if this means the chemotherapy is working, but it give me a little bit of hope and I need that the most.
So not, I prepare for my last infusion for this round and am told that it could be as long as a year before I will need it again...if I respond this time. If I do not, then I have to endure other treatment options. Time will tell.
More blogging
I am still working on a blog about educating family and friends. I want to make sure that I have everything I need without offending anyone. almost have it all together. stay tuned.
Chemo - session 4:
It was time for celebration before my next infusion. It was veterans day and time for some of us veterans in the family to make our way to our annual Veteran's Day night out to get our free dinner at
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| Airman Leadership School, 1993 |
Thursday came around pretty quickly last week. I seem to be keeping up with a trend of having the best of intentions of getting to sleep early on Wednesday nights in order to be prepared with plenty of sleep for Thursdays. I knew that I was either going to have a very long day with having my infusions all day, or I was going to show up and the doctor would be there waiting for me only to give me the news that I wasn't going to give me my last infusion.
I got there on time and pulled my ticket for my blood work. Number 10! Dang! I was hoping it would go by quickly though. Then I checked in at the chemotherapy clinic. Despite having a higher number for my bloodwork, it went pretty quickly since there were 2 techs drawing blood. I got through the morning process and was on pins and needles until my name was called. I went back and sat in my
9:30 a.m. rolled along and I was still sitting there staring at my table. Everyone else was getting their infusions and I was staring at them. The nurse kept coming over and telling me that they had not heard from the doctor and it should be any time. She was on vacation the last 3 days and she would be in soon. Mavis said that she usually rolls in at 9:30 a.m. and that it would be any time. Then eventually 11:30 came by and still no word. I was getting very angry at that time. What irresponsible doctor leaves their patient hanging like this. I eventually find out that the doctor is on her way and had some troubles that were delaying her but the reason I did not get started was because she wanted to talk to me as soon as she got there. Uh Oh! I guess I will be coming home early. I guess I will be switching treatments and I knew that meant on one thing...the dreaded IVIG infusions.
I dreaded my doctor telling me I had to switch to IVIG. I have heard so many different stories about the IVIG treatments and its horrible side affects. I guess I would find out soon when Dr. Mosley got in. While waiting, I struct up a conversation with the guy in the chair next to me. He was getting IVIG for some rare neurological disease that I do not remember what the name of it was. He said he had no side affects and had bee coming in monthly for his infusions for 6 years. I was glad to find one person who was pleased with the treatment. I chatted with him for quite some time. Right toward the end of the conversation, Mavis comes up to me to let me know that she does not see at this time that I would be getting my infusions because it was getting close to noon and if we started my infusions now, it would be midnight before I got done. Here come the tears. Frustrated.
FINALLY!
In walks Dr. Mosely just before noon! It's about time! She immediately apologized for her tardiness and started telling be about the infusion and the plan for the day and was asking how I felt. I told her that I was feeling like I would not reject the chemo again because I felt that had I had last week's chemo sooner that 3 hours after starting the pre-meds, I would not have rejected it. She agreed, but said that today we would only do a half dose of 320 Mg and I would come back next week (which is actually tomorrow) for the remainder. Ah! Just was I was waiting to hear.
Mavis immediately started my IV line and got my pre-meds flowing. She used the vein just about the one she used last week. I was impressed! She wasn't a vein meanie this time and I was without pain as she prepared me. soon after, the usual drowsiness rolled around and I started my chemo drip. My |
| Hubby, right there with me as I lay there a little loopy! |
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| Mavis, My nurse |
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| Watching Funny videos while getting my infusion |
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| My infusion setup |
Eventually, the day finished up and I was done at 5:30. I felt ok, but felt that if I had any more of the chemo, I would have exploded. Mavis told me that ANY kind of sign of rejection or illness would require a trip to the ER! I was most vulnerable now for a while. Mike took me home and I rested the rest of the evening.
Am I sick? First trip to ER
On my Friday night, I didn't want to spend it in the ER, but Mike and I took the trek downtown. They took me in and gave me a private room of my own so that I did not get exposed to any germs because of my weak immune system. They checked me over and felt that I was a little bit dehydrated and
should get an IV while being checked over. They had it wide open for my drip. I videotaped it because to was quite interesting how that much fluid could be flowing that fast into me. Eventually, they decided that I had a little post nasal drip and I was just fine. I went home feeling OK and took some pseudophed for my nose. It made me a little sleepy, so I went to bed.
More signs the treatment may be working
I laid around a lot throughout the weekend. I had periods of fatigue and more periods of super-sized energy. Yes, I found myself popping out of bed quicker and getting off the couch faster. This week, I was able to show my husband that I was able to do a couple squats without trouble. I am not sure if this means the chemotherapy is working, but it give me a little bit of hope and I need that the most.
So not, I prepare for my last infusion for this round and am told that it could be as long as a year before I will need it again...if I respond this time. If I do not, then I have to endure other treatment options. Time will tell.
More blogging
I am still working on a blog about educating family and friends. I want to make sure that I have everything I need without offending anyone. almost have it all together. stay tuned.
Tuesday, November 10, 2015
Torment & Rejection!
I should have updated this blog 5 days ago. I always have the best of intentions when it comes to updating my blog. However, I end up getting too tired and by the time I am feeling better, it is days later and I struggle to gather everything together that I want to say. So here we are! It is Tuesday night already and I am almost about to start my last round of chemo and I haven't even shared everything that happened last week.
First of all. before round #3, I had a problem keeping my sugar levels up. For some odd reason, over the weekend, I would eat, my sugar level seemed to be OK, and then suddenly it would drop below 60. I fought for a few days to keep my levels up. Then suddenly...poof! they were normal. The only thing we can say is that was probably a virus or something. At this time, I am doing great. No sign there was ever an issue. It was a mystery for a few days, but who cares, I am fine at the moment.
First of all. before round #3, I had a problem keeping my sugar levels up. For some odd reason, over the weekend, I would eat, my sugar level seemed to be OK, and then suddenly it would drop below 60. I fought for a few days to keep my levels up. Then suddenly...poof! they were normal. The only thing we can say is that was probably a virus or something. At this time, I am doing great. No sign there was ever an issue. It was a mystery for a few days, but who cares, I am fine at the moment.
Chemo - Round 3
I started the day off normal. We woke up and made the trip downtown Detroit and got to the VA at our usual 7 a.m. I have to go through a huge process before I make it into the chemo bay. I first have to pull a ticket to get in line for the lab. I have been getting there early enough to get an early ticket, but usually I am 5 or 6. As soon as I get the ticket number, I have to walk down to Firm B (which is the Rheumatology and Chemotherapy area) and sign in. It is imperative to get there early too because the bay is usually full. Then I go back to the lab to wait for my number to be called so I can do my normal pre-chemo blood workup before waiting for the nurse to call me back.
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| Breakfast (Guess the nurse thought my sugar was low) |
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| The usual bracelet |
I am one of the early ones called last Thursday. I go to my usual recliner and my tray is waiting with my pre-meds on it. That consists of Zantac, Tylonel, Hydrocortisone, and benedryl. Immediately, my nurse, Mavis, starts me with my breakfast and my "bracelet" as I drink my Starbucks that my husband went and got me because their didn't taste the greatest. Mavis is not easy on my veins. For the first time since I started all this testing and treating, I actually cried a tear of pain. My nerves are so out of whack that each time I get poked and prodded, I am hurting more and more. The pain of the IV needle going into my skin and vein actually felt like the needle was going through my bone. It took a long few minutes before the pain lifted. The pre-meds were flowing, my breakfast was in me, and it was time to get the chemo started...but no chemo has been delivered.
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| The head doctor (He looks like...) |
For the next 3 hours, the nurse kept coming back to my area and would say that it would just be a little bit longer because they have not brought the chemo down yet. Wait! What? The pre-meds made me loopy, they are wearing off and I would need more before long. I remember one time the Head head nurse saying she was going to speak to the Head Doctor because there would be problems if some of the patients did not get our chemo soon. Turns out that the usual person making the chemo was out sick that day and a chemist who usually doesn't do the mixing was preparing them all. Finally, after 3 hours, my Rituximab (all 635 Mg of it) was delivered and they immediately started my drip. Problem was... I started having side effects only an hour into the drip and needed to stop to get more pre-meds in me before starting again. This was the start of the worse part of the day. I never did recover from the side effects and symptoms of rejection I was experiencing. Another hour and a half into the chemo "take-two", my throat started to close up and they needed to stop again. They contacted my Rheumatologist and she said that the chemo session needed to stop and I was to go home.
So just like that! They removed the chemo, ran a 30 minute drip of saline, and then removed the IV. After making sure the symptoms were subsiding, they sent me home. I went home silently crying.
I talked to my nurse the next day and she said to show up this coming Thursday and the doctor would decided whether I would get my last infusion. In my opinion, I think I should get that last round because I believe I would not have rejected it had I had my chemo on time. We will see in 2 days.
I talked to my nurse the next day and she said to show up this coming Thursday and the doctor would decided whether I would get my last infusion. In my opinion, I think I should get that last round because I believe I would not have rejected it had I had my chemo on time. We will see in 2 days.
How am I doing since then?
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| He is secretly laughing at me! |
I have had my ups and downs. Most days, I wake with back pain and it does not go away until I get up, go to the rest room, and walk a bit. The only effect of the treatment I feel working is the hand pain. I really do not have any joint pain in my hands anymore. The pain and weakness in my legs and arms are still there and the fatigue comes and goes. I did manage to venture out to have breakfast with my mom and husband on Sunday. I did wear a mask, as the nurse indicated was greatly necessary! I do not venture out very often as it is embarrassing to be seen in public looking like a masked robber!
Early this week I found out that my recent x-ray shows that the pain in my back was from something called ureteric calculus. Yep! you guessed it...I have a kidney stone. I have to wait the painful process for it to pass. I have always been one to be able to handle alot of pain. Yes my back in the kidney area has been hurting, but not as much as people say when they have kidney stones. Not sure if this is something normal that occurs with DM, or just a normal part of what happens at this age. I will have to ask the doctor next time I see her. Until then, I wait it out...however long that will be.
Early this week I found out that my recent x-ray shows that the pain in my back was from something called ureteric calculus. Yep! you guessed it...I have a kidney stone. I have to wait the painful process for it to pass. I have always been one to be able to handle alot of pain. Yes my back in the kidney area has been hurting, but not as much as people say when they have kidney stones. Not sure if this is something normal that occurs with DM, or just a normal part of what happens at this age. I will have to ask the doctor next time I see her. Until then, I wait it out...however long that will be.
Future blog post plans:
There are so many things I want to blog about. First, I have joined a few support groups and have noticed that there are several different treatment regiments that people are getting. I have ran across very few people who I have come across whose doctor ordered immediate chemo for before trying some of the other options, such as IV Immunoglobulin (IVIG), or Methotrexate with Prednisone. I am on a mission to find out why some doctors choose the treatment they do.
I also have been trying to put together some thoughts on how to educate loved ones on the disease and how to compassionately be there for me. I struggle every day with those who are ignorant to what I am really going through, not just physically, but mentally and emotionally. I am growing tired of having to constantly feel like certain people downplay the monster that ails me and how much I am struggling with what is going on. If it were not for my loving husband, I am not sure I would be able to handle every moment I endure. I love him!
Saturday, October 31, 2015
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.
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
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
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.
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
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.
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.
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.
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| 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
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| Juices are flowing |
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| My Rock! |
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
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| My Go-GO Juice |
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.
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| Resting in Amanda's car |
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
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| My protector! |
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| 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.
Tuesday, October 27, 2015
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".
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".
Friday, October 23, 2015
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:
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
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
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!
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.
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:
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
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| My biggest supporter! I LOVE HIM! |
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
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| Still here!!! Moving at a slow pace! |
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| Done! |
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
Saturday, October 17, 2015
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
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.
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!
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.
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.
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
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| My BEAUTIFUL Daughter |
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| 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!
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| July 2015 |
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| May 2014 |
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| My #1 and I on our 1 year anniversary of dating |
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| The greatest sister anyone could ever ask for |
It's no wonder I never knew all these things...but I do now.
Thursday, October 15, 2015
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...
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!
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!
Wednesday, October 14, 2015
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?
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!
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.
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 kittyThey 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 :( |
 |
| 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.
Friday, August 28, 2015
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. :(
Fun weekend before new tests
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):
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.
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 |
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.
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