Sleepy Sleepy

I had an event to go to on Saturday evening. A house-warming party for my dear friends Roselyn and Earl. They always make an effort to come see Al and I when we have an "event", even though they lived quite far away, (Uxbridge). So, when we got the invitation, I was determined that we would attend.

As I may have mentioned, Al works in Ottawa almost every other week. Every once in a while I go up to Ottawa for the week or part of the week with him. It depends on airfares, train schedules, my appointments, and whether we just need a break from each other. LOL! This weekend, though, I was planning to drive to Ottawa with him, so we just left a day earlier.

In order to have energy for the party, I did not do much during the week. I had 2 appointments and did some laundry. I also did a little shopping...but I did not go to the mall. All in all it was a pretty quiet week from an energy-exertion stand-point. I was tired all week and went to bed early Thursday and Friday nights, sleeping in quite late as well. Saturday morning I rested. Reading the paper and wrapping Roselyn and Earl's gift was the biggest chore I permitted myself.

We left and I put on our John Grisham audiobook. I love listening to books on our drive. Al is not a reader so he gets to unwittingly partake in the savoir vivre of my hobby. :) The only drawback is that I sometimes get a little sleepy after listening to the reader for an hour or so. As usual, I had a little catnap before 5:30, when we arrived at the farm where the party was taking place.

It was not a raucous affair. I walked around for about 20 minutes taking in the sights and admiring the handiwork of Roselyn and Earl on their party barn / aspiring cider pub and dance hall. (Fantastic venue for all types of parties!!) I found a comfy seat on the patio and parked my butt. I got up occasionally for a bite to eat, but for the most part I remained seated and only expended energy in chatting with their new neighbours.

We left early, around 8:00 I think, and got to our hotel in Bowmanville around 9:00. I went to bed early and slept late. (Almost too late for the 7-10 am breakfast!) I then proceeded to nap on and off all the way to Kingston. We stopped for a bio-break at the On-Route in Trenton. When I sat down in the cubicle, I rested my head in my hands. I very nearly fell asleep within those few seconds. I had visions of my husband sending someone in to check on me and finding me snoring away on the potty. OMG! That thought woke me right up!! I was still a little foggy once we were back on the road though, and I managed to dump 1/2 of my Timmies coffee on my crotch. Yup. Also on my white and navy cotton sweater. It soaked up that coffee colour like a sponge!!

When we stopped to do a little shopping at the Outlet Mall off  Division Street, I changed my top in the parking lot and put on the tunic I wore the day before. It was long enough to cover up the brownish stains on my jeans. Yikes!! But I smelt like coffee all day!! (As an aside...later that day, when we were entering our hotel room, Al accidentally spilled some of his coffee into a bag on top of my suitcase that was falling over. Guess what...yup...on my white sweater. I have it soaking, but cotton loves coffee. I may never be white and navy again!)

We went for a bite to eat before heading onward. I was so exhausted that it was difficult to raise the sandwich to my mouth. Although I did wolf it down pretty quickly. Maybe I was worried I would fall asleep before I could eat it. LOL. It does sound a little bit contradictory...but it takes a lot to come between me and my food!! In any event, we thought maybe a Starbucks would wake me up. My Pumpkin Spice Latte was delicious, but I promptly fell back asleep as almost as soon as we got back on the highway.

I woke up as we entered downtown Ottawa and as soon as we checked in I headed for the couch. I was SPENT!! I rallied for a bit for a late dinner - just an order of poutine - mmmm - and then back to the room and back on the couch. A hot shower and bed at 10-ish and then...I could not get to sleep!! OMG! I was tired but my body was just not cooperating. I finally fell asleep around midnight, but did not get up until 10:45 this morning. I am still a little fuzzy headed. I will do nothing today...save for writing this blog posting, and grabbing some lunch shortly. I have to rest up for tomorrow night. We are going out for dinner with some of Al's colleagues to bid adieu to one of his co-workers who has moved on to another position. I need to be rested and polished and full of vim and vigour for that dinner. I am glad it is not tonight. I would have a difficult time mustering up the energy. :(

(This is me after unloading the dishwasher...LOL!!!)

I hope I did not put you to sleep with this boring tale...but I wanted to share my sleepy, sleepy life with you. When I say that I am fatigued...I am not exaggerating. I really cannot function some days.

The Sleeping Beast

After my stem-cell transplant in May 2014, my cancer "beast" went to sleep. Multiple Myeloma is not a curable cancer (yet) so we do what we can to beat it down and keep it down as long as possible. When it awakens, we beat it down again...etc.

Over the last 9 months, I have been a little worried about the subtle rise in my blood protein levels. I won't get into the specifics of the blood work or the tests and what they look for, as it will put you to sleep, but just know that I use the term "protein levels" generically to cover all of the blood work I have. The "protein" is essentially the cancer in my blood. It is not dietary protein and has absolutely nothing to do with that.

Although the increases still left me in the "normal" range, the continuous rise in levels made me very nervous. Was this beast awakening from his slumber? Average first remission time is 18-24 months. I opted to take maintenance chemo - a lower dose of Revlimid daily by pill - to keep the beast knocked out for a longer period of time. My oncologist was cautiously optimistic that it would 4-5 years before I would need aggressive treatment again. So I was scared.

Remission periods are unpredictable. In the case of MM, it is very difficult to predict anything given that every person's cancer is different and reacts differently to the treatments. However, the basic rule of thumb is that your first remission period is the longest. Each one following will likely be 1/2 the length of time of the first one. Soooo....my concern was that if I was coming out of remission at the 2 year mark...my overall life expectancy....well...you do the math. I also want to stress that this is the law of averages...not carved in stone. I am hopeful that I will be one of the few folks with this disease that live for 20 years with it...but I also have to be realistic. Average life expectancy just increased from 4 to 5 years with the drug protocols they have used over the last 5 years. I do not think that I will be average...I have always been an over-achiever!! I am young (in the MM world) and otherwise very healthy. I have responded well to treatment to date. I am 100% confident that I will be alive well past the "average" life expectancy. :)

Anyway, this past week I saw both of my oncologists. We talked about my test results and about my fatigue (see previous posting). My protein levels have stabilized. They indicate that there was some action but it is not continuing to grow. Just a little blip. Last visit we talked about increasing my chemo...now we are talking about trying a little reduction to see if my energy levels come up. Phew!!

One doctor suggested a medication vacation or holiday...this means taking some time off of the meds. The other doctor cautioned me that if I did that, and then decided to go back on the Revlimid, my insurance company many not agree to finance it. What?! Revlimid is $11,000.00 a month. A MONTH! My drug plan agreed to cover 80% and the drug company is subsidizing the other 20% so I pay nothing. I could not possibly take this drug if it was not covered. I am not prepared to roll those dice. I will not come off the chemo. And it has only been 3 months since he wanted to increase the dose by half...so it is not the time to mess around with it.

When you take Rev for treatment purposes, you take it 3 weeks on and one week off. For maintenance, it is a lower dose but taken every day. Both doctors suggested trying a 3on/1off approach for a few months to see if it makes a difference. So that is what I plan to do. Just a few months and then decide to continue or revert back to a daily pill. Wish me luck!!

The added benefit to taking it 3/1 is that my risk of developing a secondary cancer is reduced as well. I was cautioned before taking this drug that it can cause development of secondary cancers -- most commonly treatable cancers, like bladder cancer, thyroid cancer, solid tumours, non-melanoma skin cancers, etc. Apparently that risk is lessened in people taking the drug on a 3/1 cycle. Yay! Winner winner chicken dinner!! An added benefit. I like free bonuses!! I'll take it! LOL!!!!!

Anyway, at the end of the day, I am very relieved that my cancer beast did not wake up. He simply rolled over and farted and went back into a sound slumber. Sleep on, you bastard, sleep on!!