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. :)

MRI

I heard so many terrible stories about the MRI monster...people freaking out, screaming in terror....etc. so I did not really know what to expect. Well, I have to say I thoroughly enjoyed the ride!

I am not claustrophobic at all. I like to be cocooned, so I found it cozy and comforting.

The noises were really surprising to me. I expected it to be loud and lots of jerking about and turning and in and out...but it was not so bad. There were lots of noises...and they reminded me of those car alarms that change their tone every 10 seconds or so. The MRI was like that. Every few minutes the sound would change. You never knew if you were going to get the beep beep beep...or the bbbbbbb bbbbbbbb bbbbbbbb...or the whoop whoop whoop....or the simple rrrrrrrrrrr rrrrrrrrrrrr rrrrrrrrrrr....it was fun.

I tried to imagine what all the sounds were like...ambulance siren, truck backing up, food processer, broken garbage disposal, etc.

The trick is to ensure you are very comfortable at the start. Since you cannot move for the duration, and mine was about 50 minutes, you really have to be comfy. I tried to fall asleep but the noise is too distracting...but I relaxed and took it all in and enjoyed the experience!

Yes, I am a little strange!
:)

Update

This is the latest update on my situation...STILL WAITING to begin treatment!

My oncologist has confirmed, through my bone marrow biopsy, that the multiple myeloma is active and requires treatment. It is early stages, so none of my vital organs have sustained any damage. I had an MRI on Saturday to determine the extent of the lytic bone lesions to determine if I need radiation (unlikely).

The good news is that I have no kidney damage. This is a blessing and a curse...blessing because I am pretty healthy....curse because I am not a high priority to get started on treatment. So it has been a lot of hurry up and wait. :(    You know how impatient I can be! This is tough!

At this point in time, it is likely that we will proceed with the stem cell transplant. This is the same as a bone marrow transplant, except that they can now harvest your stem cells from your blood through a process similar to dialysis rather than extracting large quantities of your bone marrow. Additionally, they use your own stem cells so there is no rejection or GVH ( graft vs host) disease where the foreign cells battle your good cells (you IT guys are probably thinking about Star Trek)…and you have significant damage and likely death. Yikes! So my own stem cells will be used.

I am waiting for the transplant team at Juravinski Clinic in Hamilton to meet with me to explain the options and the associated risks. Once they do that and I make an informed decision to proceed, we will be started almost immediately. My decision could affect the induction chemotherapy protocol that is used so they have to meet with me first. Hence the waiting…

The process is as follows: induction chemotherapy...likely the CyBorD cocktail (you Star Trek fans likely think that sounds cool!). This will take place in the new Niagara hospital in St. Catharines. I will only need to physically go there once a week. :)  This will reduce the cancer in my bone marrow over approx 3 months. Once it gets down to a certain level, I will advance to the transplant protocol. This will involve drugs to stimulate platelet production and the harvest of these “baby blood cells” (stem cells). Once they have enough (usually enough for 2 transplants), they will freeze it and bombard me with high dose chemotherapy to eradicate as much of the cancer as they can. Then they transplant the stem cells back in via a process like a blood transfusion. The stem cells migrate to the bones and start to create new bone marrow. (I picture a wagon train heading out west…) This new marrow will have no antibodies...so I will no longer be immune to all the colds I have caught in the last 50 years. I have to be very careful until my white cell count comes up and for several months afterward.

Depending on the response or remission % achieved, (complete remission occurs in about 3%) I may  have another transplant in 3-6 months, or may remain on low dose chemo for a year or more. Remission is temporary and it can be a few months to several years before I will need treatment again. I have requested the “several year remission” for Christmas, but Santa doesn’t always bring me what I ask for. LOL

I am doing well. Cancer affects people physically and emotionally. So far I have no physical challenges as a result of the direct effect of the cancer (kidney failure, anemia, etc), but the worry and sleep issues make me very fatigued and unable to concentrate on important tasks, such as those I would be performing if I was still working. As a result, I am keeping busy at home and not stressing myself out trying to be a productive employee. :)

Once I start treatment I will be feeling crappy because of the side effects of the treatment. That will   be a different story. I am ready for that battle and am not afraid! My biggest worry through all of this  is the effect this has on my family and friends. I am strong and determined and have dealt with it...they haven't. It makes me sad. :(

Linda

getting started

I have never blogged before so this is a novel concept. I decided to blog about the journey I am about to take in battling multiple myeloma. I was inspired by Lisa Ray's Yellow Diaries, and several other postings I have seen on various Myeloma support sites. I hope my story will help others as their blogs have helped me.

A year and a half ago, I went for blood work to determine if I had rheumatoid arthritis as I was having some joint pain. (Turns out it was the Crestor I was taking for cholesterol that was the culprit.) The blood work revealed some proteins in my blood. After several more blood tests it was determined that I had MGUS (monoclonal gammopathy of undetermined significance).

I was a little unnerved by this finding since I was only 49 years old at the time...but was assured that only a small percentage of people actually progress to anything other than MGUS in their lifetime. I was referred to a haematologist - Dr. C - and we began monitoring my protein levels every 3-4 months.

As I watched my IGG levels continue to rise, I was concerned that this was not going to be simply MGUS for the long haul. My free light chain assay indicated that I had an abnormal ratio of kappa to lambda - so I knew I was higher risk. In June, Dr. C upgraded my diagnosis to smouldering myeloma...and we took some xrays...only to find in August that it was active myeloma. I had some small lytic lesions in my skull.

This shocker came on the heels of my husband having a heart attack and cardiac arrest in April. I had also just returned to work myself, after having 2 tennis elbow surgeries (January and February). As I had to exhaust my sick leave credits in order to qualify for disability for that absence, I was left with no leave. I had to go back to work.

My doctor is 1.5 hours away by car and I requested that he refer me to a cancer hospital closer to home for my treatment. I am still waiting to hear from them with my first appointment. I am told that I am an excellent candidate for stem-cell transplant as I am young (in MM circles) and in good health. I am anxious to get started! You know how you get into those ass-kicking moods...well cancer is in for an ass-kicking from me!! :)