Sentimental for a moment

I am truly blessed.

I would like to acknowledge every person who has helped me through this ordeal so far, but I know that I can’t. I would forget one person or offend or embarrass someone, so I will just say that I have the most wonderful people in my life. You know who you are. (If you are reading this blog...you are one of them.) You are Facebook friends who I have not seen or spoken to in 10, 20, 30 years, but are there with encouragement every day for me. You are new friends that I have made since we moved to Thorold in the last 8 years, who have become like family to Al and I. You are blood relations that were unable to have family connections for many years, but are in my life now. You are phone calls and emails out of the blue just to say hello...some from very far away. You are my sisters, my brother, my mom and dad, my mother-in-law, sisters-in-law, brothers-in-laws, aunts, uncles, cousins and cousins-in-law who keep me in your thoughts. You are the lab technicians, physio and massage therapists, Tim Hortons servers, the grocery clerks, the Wellspring Niagara support team, the nurses and doctors and hospital volunteers. You are my husband, daughter, son, best friends, my old friends, my co-workers, acquaintances. Everyone who smiles and makes me feel that I matter and that I am loved. You make this easy for me. You make me feel loved. Thank you.

I have not had a lot of experience with cancer or long-term illness. I did have a dear friend and colleague who had breast cancer. I remember the day she called to tell me...I was at work and when I got off the phone I started crying and could not stop. I felt so bad for her. How unfair this disease was to strike her. I kept in touch from time to time and we occasionally saw each other, but over the years it became less and less. I thought of her often, but did not want to bother her or to face the awkwardness of calling to find out how she was doing. I found my encounters with her would leave me sad and worried. It was selfish and immature. Eventually, I was just too embarrassed to make the call since it had been so long. One Christmas I thought about her and decided that during the holidays I would contact her and tell her how I felt. I never got the chance. I got a call that she had passed away.  I was devastated. Completely and utterly devastated. I could not even go to the funeral. This haunted me for years. Until now. Now that I know how much love there is I do not feel so guilty. I also do not feel badly about any of my friends who have not reached out in a significant way to me...I understand how difficult it is. It actually comforts me to know that I am not the only one who reacts that way. I know now that Kathi would have felt the same way that I do. And I know that she would not have judged me for it either.

I don’t want this to be a downer message...it is not meant to be.  It is therapeutic for me to finally deal with this issue and to see this journey from the other side. I am truly blessed to have each and every one of you in my life. I love you. I thank you.

Steroid bloat and brain fog

I felt pretty good this morning. Had a nice sleep...from about 11:00 until 3:30 and then again from 4:30 - 6. :)

Looked in the mirror though and noticed that the steroid bloat is here...my face is ROUND! Already?? Come on! Tried to put on some makeup to make it better but the brain fog is creeping in and it feels like I am watching someone else do it for me. LOL! This is pretty freaky!

In addition, my vision is a little wonky at times...sometimes I need my glasses and sometimes I don't. How strange is that?

Think I might need a little lie down for a bit before I head off the hospital to pick up my disability papers. (They lost the first set...of course!) Murphy's law when it comes to anything I touch! I don't think I am in any shape to drive at the moment. :)

This afternoon I think I'll head over to Wellspring for their relaxation and visualisation seminar. I could use some of that!

Dex = ADHD

OMG! The steroid I am on is called Dexamethazone. Dex for short. It is hell! (To put this in perspective...normal dose is 4 mg/day...I am on 40 mgs/day!) I feel so jittery and tired all at the same time...shaky and no attention span...ants in my pants...bats in the belfry! As a self-proclaimed control freak this is pure torture for me. I can't stand it!!

Last night I went to bed at 10:30...bone weary...but could not sleep. Got up, did some jigsaw puzzling, some facebooking, some candy crushing, some Angry Birds...more puzzling, surfed the net, looked at my trip pictures -- yup all 1000 of them...went back to bed and tossed and turned until I got up at 7:20.

Hands are shaking, head is all abuzz...OMG! This is day 4 of 4 on and tomorrow I start my 4 days off. Al says it'll probably take 4 days to detox...FML! LOL!

Can't even go for a walk around the block because the street is an ice-rink. Just gotta keep hopping from one task to another in my 10 minute attention span intervals.

Guess it's better than being sick to my stomach!

Ready, Set, Go!!

Yesterday was day one...it was a relief to finally get started but very surreal.

Most days I feel that I am at peace with my diagnosis, but sometimes I wonder if I am at peace because I don't really accept that it is happening. At the hospital yesterday I almost felt like a fraud. The other patients were obviously sick...and I have a full head of hair and a Rubenesque body (that's a nice way to say I am on the fat side) and a pretty upbeat attitude. I guess in a few months I might look like them too...or maybe I will retain all of the above throughout this treatment. :)

I started off with taking my anti-nausea pill. This was followed by 26 chemo pills and 10 steroid pills. Then I got an IV for the bone medication (once a month) that takes 2.5 hours to drip. About a half hour in they brought the other cancer drug and injected that into my subcutaneous fat....in my belly. I asked the nurse if it would dissolve the fat, as that would be a welcome side effect and she said she'd make that a suggestion. <chuckles all round>. I took another anti-nausea pill before I left and that was it.

We came home, had lunch and I went for a nap. I felt really foggy...or dopey. Al says "that's normal, isn't it?"...to which I replied..."for you maybe!". He is such a sweet guy. LOL

Once I got up I was very fidgety. My hips were achy...not sure if it was from the meds or from the fall I took on the ice on Tuesday. I just could not get comfortable. I was also in the mood to eat...graze is more like it...several trips to the fridge...cheese, salami, turkey breast, cookies, chocolate, jello, peanuts...OMG!  I finally decided maybe I should just go back up to bed and try to sleep it off. That worked! Once I got to sleep I slept most of the night.

Had to get up a few times to void my bladder though...you see the chemo drug can cause bladder cancer so I have to drink lots and pee lots, even during the night. My son could not believe that they would give me a drug to destroy the cancer that will actually cause another cancer...He's starting to realize how unfair life really is.

Anyway my honey just arrived with my coffee, so I will sign off now. I am feeling great today...no nausea, no jitters -- yet...have to take those steroids again in a bit...we'll see if they are the culprit.

Have a great day!

The Waiting Room

Today was a long day. I had a 1:00 appointment and arrived on time. We sat in a waiting room with several other people, with people arriving regularly every few minutes. Although it was only an hour and a quarter before we were called in, it seemed like an eternity.

The typical MM patient is in their 70's or 80's...so most of the waiting room was elderly. Everyone had gray hair - or no hair and were all wrinkled up. They shuffled when they walked.  It really hit home that I was an anomaly.  After waiting and waiting and waiting...and another thought crossed my mind. Maybe they looked like me when they first arrived for their appointments. :) 

What's up doc?

Today I finally had my appointment with the stem cell transplant team. Well...with the doctor and one of the nurses. The other transplant nurse coordinator was MIA. She will brief me when I go back in two months.

What I learned was that my genetic analysis was normal. This is a HUGE relief since there are some chromosomal anomalies that predict a poor prognosis. I do not have them! This means that we have even more confidence that this protocol will be successful and well-tolerated. :)

So, I need to see my local oncologist, and he will get my chemo started. If I can get started next week, then I should be all done the treatments and on the road to recovery by late May or early June. (Just in time for pool season!)

I have an appointment next week but will try to get it moved up. I will be on chemo for 16 weeks. The cocktail is called CyBorD...which consists of Cytophosfamide (chemo), bortezomib (another cancer drug - also known as Velcade), and Dexamethazone (aka Dex, which is a steroid). (I don't have my papers with me so I am spelling these from memory...so please excuse the mistakes.) This cocktail is fairly well tolerated, so I hope to not have too severe of side-effects.

Once the 4 months is completed, and hopefully my cancer has been reduced significantly, they will give me the drugs to promote platelet production along with another chemo drug. After a period of time...I think it was 5-10 days, they will harvest my new platelets (aka stem cells) and freeze them.

Within a few weeks of that procedure I will be admitted to the hospital and have one dose of high dose chemo called Malphalen (sp) which is the most effective chemo for multiple myeloma. It will destroy the remaining cancer, and my bone marrow. A few days later they transplant my stem cells through blood transfusion and they migrate to my bones and start making new bone marrow, platelets and antibodies. I will remain in the hospital until my white cell count increases to a safe level...about 10 more days. Then I come home and recover. It will be about 6 months before I am strong enough to return to work. (Which brings us to this time next year.)

My doctor is a very nice man and is highly regarded. I feel good about the journey I am about to embark on. Or at least as good as I can. :)