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!! :)