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!