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

Airman Leadership School, 1993

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

Hubby, right there with me as I lay there a little loopy!

Mavis, My nurse

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

Watching Funny videos while getting my infusion

My infusion setup

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.

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.

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.

Breakfast
(Guess the nurse thought my sugar was low)

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.

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.

How am I doing since then?

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.

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!