Ruby Slippers

I edited this post and it changed the date that it was posted. It is from November 2013.


There's no place like home!

When I was out Christmas shopping in November I came across the most adorable slippers. They are snoozies brand and are the most comfortable soft slippers EVER. They have the non-skid bottoms so that even klutzes like me don't fall down on tile floors.

These were red sequined with bows. OMG! I had to have them. I thought they would be so cool to wear while in the hospital. Who could look at ruby slippers and not smile?

They remind me of how much I enjoy being at home. I am a very social person. People who know me will probably say that I am usually upbeat, funny, loud, talkative, etc.   I am.   But I also love to be by myself and just be quiet and introspective. I love a good book or a good movie. In my drug-induced stupors of late, I can sit or lie down and do and think about nothing for hours at a time. It doesn't bother me. I love feeling peaceful. :)

Before I had my tennis elbow surgeries last year I practiced visualisation to get me through it. (I had to have both surgeries with local anaesthetic only). I would visualise myself lying on a sandy beach...warm sun beating down, water coming in with each wave - washing cooling water over me - as I breathed in and out. It worked very well.

While we were in the Mediterranean I searched for the very spot on the beach where I could create this in reality. Unfortunately I didn't find it...there were too many distractions on the beaches....but I discovered something else. I didn't need the beach.

When I had my first reiki treatment, I was asked to visualise something happy and calm and relaxing. I went to the beach. It didn't work. It was too difficult to try to stay in that moment. I thought about when I felt the most at peace and content and happy. Then it hit me. It was home.

More specifically it was at home, just before Al and I go to sleep. Every night, Al and I cuddle with him spooning me and wrapping his arms around me. We usually only stay like that for about 2 minutes before I get too hot, (peri-menopause!!) but it calms and soothes and relaxes us. This is my happy place. It is my new "go-to" happy place.

So my ruby slippers not only evoke that feeling of being home and quiet and cocooned, but of being wrapped in love. (Al is puking into his mouth right now...sorry - that kind of ruined the moment.)

I think everyone should have an anchor that brings them to a warm peaceful place like mine. If you don't, it's worth the journey to seek it out. The rewards are priceless. Just like ruby slippers.

There's no place like home. :)

Altered States

I edited this posting and it changed the date of the post. It was originally posted in December 2013.

LOL...that is how I view my life right now.

What a wild ride this last week has been.

Day 1 – Normal. A little uptight about getting started but all in all I felt pretty normal.

Day 2, 3, 4 – Psycho. Hyper active, buzzing with energy but so tired at the same time. Hungry to eat anything I could get my greedy little hands on. No sleep...hours of lying awake trying to will myself to sleep.  Taking Ativan to nap, and seriously considering a request for medical marijuana to calm me down.

Day 5 – Stunned. Getting dressed and putting on makeup was an out-of-body experience. Drove to the hospital to get my disability papers and should not have done that. Had a weird conversation in the cafeteria with my husband’s cardiologist where I tell him I am in a Chemo Fog and somewhat incoherent. I think he thinks I am nuts.

Day 6, 7 – Blob. Feeling faint and lethargic. Spent the day in bed or on the couch. Fell going up the stairs because I was moving “too fast” at a slower pace than a snail. LOL.

Day 8 – Yeehaw!! Crazy energetic and ravenous. I actually gained 7 pounds today. LMAO! God, I hope it is water weight!! LOL!!

Who knows what tomorrow will bring. Poor Al. I hope he doesn’t lose his sense of humour.

Goodnight folks...<Big crazy beaming grin>

The journey officially begins

This post is out of order due to an edit I made. Sorry for the confusion. It is from October 2013.


Yesterday, Oct 28, 2013, my journey officially began. I met my new oncologist, Dr. H and his nurse Barb. I was pleasantly surprised by how nice everyone was...from reception to pharmacist, to lab techs. Everyone was genuinely caring and attentive.

Dr. H says he is not 100% convinced it is time to start treatment yet. Although I have lytic lesions in my skull, they are very small. I am not anemic (as of blood work taken 3 months ago), and my kidney function is normal. The bone marrow biopsy will tell the tale. I also had blood taken and am scheduled for an MRI. Currently doing the 24 hour urine collection. The results of all these tests will ultimately tell the tale. It is amazing what they can do with this info. Based on chromosomal analysis they can predict the reaction that the cancer will have to the chemo drugs. They will then decide how and when treatment will take place.

The biopsy itself was disturbing. My hubby doesn't really get what I mean by that. I internalize pain and negative emotions...so I sometimes feel shell-shocked after a painful event...both physical and mental. When I had my tennis elbow surgeries earlier this year it was much the same...the pain was tolerable - it was only the freezing and the staples into unfrozen parts that hurt...but the sounds, sensations and visualization of the process were disturbing to me. I have a vivid imagination, so the hammer and chisel pounding on my elbow made me emotionally sick. You know how you turn away in a gory movie? Like that only it is in your mind and you can't turn away. My bone marrow biopsy was like that.

The freezing hurt like a bitch (some people tolerate the alkalinity better than others) but it was the sensation of the needle pushing and boring into your bone that gets to you. The first one - the aspiration needle is smaller and did not hurt so much going in. The syringe that sucks out the marrow sample is a strange sensation. You feel the sucking sensation throughout your pelvis. It didn't hurt so much as freak me out. It hurt a little, and you get electrical shock type feelings down your leg...but the sucking...OMG! He decided to take three samples...but it did not get better or easier each time.  Then they take a bone sample. This is a bigger needle and the doctor is literally heaving on it as he turns it this way and that to get it into your bone. It hurts but it is the sensation and thought of what it is doing that disturbs me. And then it haunts me for hours after...leaving me quiet, sullen and in a shell-shocked state. Poor hubby didn't know what to do!

Today, I am doing well. Tender, but resolved the imagery of the procedure.

You are Enough!!

I recently made a comment on my cousin's FB post. He was in a funk of late, as many of us can relate. I made a comment and then stopped to appreciate the words I had written. I needed to hear them too. I think many of us need to hear these words...

You are ENOUGH. Always and forever. Never doubt yourself. If you are not enough for someone else, they do not see your bright light. They need to take off their glasses; you do not need to shine brighter. If you try to shine too brightly you will burn out. You are perfect as you are. You are ENOUGH!! 

Too often we are quick to tell others that they are wonderful...but do we tell ourselves? Probably not. I think we need to do it more often than we do. Take a moment and read this to yourself. Think about it. Believe it. It is your truth. Love yourself and happiness will follow. 

Another lesson re-learned...

Cancer gave me the gift of appreciating what is in my life, but it also gave me some unwanted gifts. I worry more about the people around me. I don't want to be a burden - physically or emotionally. I have become more empathetic to other peoples' pain and heartache. I feel more deeply. I try too hard to be everything to everyone. Wife, mother, daughter, sister, friend. I forget to put myself first sometimes...and I try to do it all. I am doing too much.

I have been struggling. The black dog of depression has returned to the periphery. He sits and waits for me to fall. I thought I could battle him alone. At first, I did not really understand why he was back. I thought I was just tired. I thought that ignoring him through rest and sleep would make him bored so he would give up and leave.

Sometimes I think I can do this alone. I think I am strong and invincible. I think that I don't need support. I can be stubborn and proud. I desperately want to assert my control over this demon that haunts me. Most days I can. But sometimes I need to ask for help.

Yesterday I was overwhelmed.

I had a Reiki appointment at 1:00 so I went into Wellspring early to talk to a peer support volunteer. I used to talk to Pat. At least once every 1-2 weeks I would go in and have a coffee and talk about the craziness bouncing around in my head. We did not talk just about cancer and its effects. We talked about the future, the past, the present. We talked about joy, depression, worry, loved ones, people who wronged us, people who propelled us. He always had a story to bring things back into focus. He challenged me to think about what was really important and get me back on track. Over the past 6 months he got sick and died. I knew that I missed him terribly, but I did not realize how lost I had become.

Since he left Wellspring, I did not go back for peer support.  There are many, many wonderful support workers there, and I knew that Pat, himself, had recommended one in particular for me. I just couldn't do it. I thought that I could not start another relationship like that yet. But yesterday, I did.

I did not know where to begin. I told Gena that I was overwhelmed. I had so many thoughts and worries bubbling around in my head. I started to cry. I do not cry anymore. I watch sad or touching movies and I do not cry. I have lost 3 friends this year and did not cry. I cried a few tears after Pat's Celebration of Life, but I know there was so much more inside that would not come out. I realized in that moment how much I missed Pat. I also realized how much I missed talking about my issues to someone not emotionally connected to my family and personal situation. I need that outlet. I need someone to help me see clearly what is important.

Gena helped me to determine that although I am involved in so many issues in my life...I do not have to worry about them all every day. If I cannot DO anything to remedy the situation in that moment...then I should not let it consume my thoughts. We talked about a few of the more serious issues I was dealing with and she helped me to see that I could not do anything about them. It was up to other people to action them. I could provide my support and love to those people involved, but I could not DO anything. So why let it worry me and steal my joy from today, or from this moment? It was a powerful lesson. One I have heard before, but I seem to need to remedial work on this one. :)

My message to you, my readers, is do the same. Take stock of all that swirls around in your head each day, causing you to worry or feel sad, and think about what you can DO about it. If the answer is nothing...then let it go. For now. That does not mean you will not rally when the time comes that you can do something...but don't let it steal your joy.

Our time is limited and is precious. Appreciate today for what it is. Live fully in the NOW. Know that I love you all, and will always be there for you when you need me. I just won't carry your pain around with me anymore.

New Doctor!! :)

I had a check up this past week. All is good!! The best news of all is that I have a new oncologist!!

In my last blog post I mentioned my displeasure with Dr. H. I went to this appointment prepared to give him a piece of my mind...but I was greeted with a letter stating that Dr. H is idling into retirement and job sharing with another oncologist until that time. His patients were split between two oncologists and I would now be seeing Dr. Salib. YeeHaw!!! Even before I met my new oncologist I was giddy with happiness!!

Dr. Salib is a new addition to Niagara Health Services. She just finished her internship in Toronto with experience in haematology at Sunnybrook and Princess Margaret. She is young and full of vim and vigour! She took the time to ask me questions about my history - even though she had read it in the medical file.

When she learned that I was getting over another chest cold, she checked out my lungs to make sure there was no residual congestion. Wow...Dr. H told me "That is not my job. That is your GP's job" when I asked him to check me out when I had pneumonia at my last visit to him. What a difference. She was also quite supportive of my decision to maintain Dr. Kouroukis at Juravinski a co-manager of my file. Wow!!! I lucked out!

I have a few tests to complete before my next appointment to ensure that I have no issues with my liver. I had mentioned to Dr. H, as did another oncologist filling in for him once at least a year ago, that my liver tests consistently come back as abnormal. Dr. H scoffed at his colleagues concerns and said that it was normal for someone on chemo to have abnormal liver results. Dr. S noticed that they were continuing to rise and suggested that we should check into it just to rule out any issues. I wholeheartedly agreed. Peace of mind is gold when there is so much else going on!!

So...no need to worry. I will have an ultrasound and then I don't go back until my next regularly scheduled 3 month appointment. :)

What a difference a doctor can make!! What a relief!

Not all doctors are great!

Over the years, I have seen many doctors. Some were fabulous but not all. I cannot stress enough, the importance of checking the info your doctor provides to you and getting a second opinion for the major stuff.

When I was diagnosed with MGUS (Monoclonal Gammopathy of Undetermined Significance) I was referred to a hematologist/oncologist in Etobicoke. (Because my GP is in the GTA.) When Dr. C determined that I had progressed from MGUS to Myeloma and needed to begin treatment, we decided that I needed to be referred to an oncologist in the Niagara area. It would be unrealistic to have to travel weekly to the Brampton hospital campus for chemo and then it was not certain that Princess Margaret would accept me as a patient for the stem cell transplant (SCT) since I lived outside of their area.

As such, Dr. C told me to take a trip (we did...the Mediterranean) and when I returned 3 weeks later he had obtained 2 other medical opinions for me. One from a radiologist and another from an oncologist. He has also referred my info to Juravinski Cancer Centre in Hamilton. (I did not want to be referred to St. Catharines as I had a low level of confidence in the Niagara health system. :( That is another story...) Not only did he take the stress off of me by doing this for me, he took it upon himself to get second and third opinions for me. He told me if I ever had questions, I could call him, I did not see Dr. C again, however 8 months later, when I was going in for my SCT I had a voice message left on my phone from Dr. C stating that he heard I was going to have my SCT soon and that he wished me well.

Juravinski accepted me as a patient but I had to be referred to St. Catharines for my pre-transplant treatment. Dr. H was the oncologist I was referred to. I found that he did not have a great bed-side manner, but with specialists, this is often the case. He was sometimes cold and abrupt. He was, however, very factual and I did appreciate that approach. As I had done a significant amount of research into my illness, I found that it did not really matter that he would discuss my illness and treatment with me at a higher level. I have continued to see him every 3 months since that first meeting in October 2013.

Once I started to prepare for my SCT I was referred to Dr. K at Juravinski Cancer Centre. He was fantastic. Very patient, knowledgeable and friendly. He was also the head of malignant hematological cancers. I was very pleased with this doctor!! I saw him a few times prior to the SCT and then afterwards. After a year he told me that he no longer needed to see me and that he should be sending my file back to the general oncologist, (Dr. H). I pleaded with him to allow me to continue to see him since I liked having an MM specialist in my corner and that I did not have confidence in my general oncologist. He agreed and I have been seeing him every 3-4 months since.

After my SCT, I found that Dr. H did not always know the answers to my questions about new treatments or about the side-effects I was experiencing. In some cases he made me feel stupid for asking or like a whiner. As an example, when I asked what I could do about the daily, painful diarrhea I was experiencing, he told me that I was obviously not malnourished and that he had patients who were skin and bone that he was trying to help! I was not impressed. When I discovered a medication that could help, and shared the info with him, he poo-pooed it (LOL), and reluctantly gave me a prescription.  In contrast, when I told Dr. K about the drug he took the info and said it was similar to a powder he prescribes but a pill form would be so much easier for patients to take.

Dr. H admitted that he was unaware of many of the details about my type of cancer as he had few patients with MM and he had to know a lot about a lot of different cancers. I get it. At least he was honest about it. If I had a question he could not answer, he would check with Juravinski and let me know. Eventually, when I saw Dr. K on a regular basis, I would tell Dr. H that I would get the info myself from Dr. K and then let him know the answer. Not ideal, but it worked.

Sometimes, my visits with Dr. H went very well. He could be very caring and full of new information gleaned from a recent meeting or information session. Most times, however, I felt that he was just putting in the time with me. I also felt he was resentful of my continued relationship with Dr. K. He often says "I don't know why you are still seeing Dr. K", as he is walking out the door. I don't respond.

I have heard negative comments about Dr. H from many people. Other patients and care-givers, nurses, and home-care workers. I was willing to stick it out because I have another opinion to check with. There are two incidents though, that have given me pause and have compelled me to write about it here.

The first was late last year. I was becoming depressed about the quality of my life. I could no longer go for walks, or ride my bike as I never knew when the fatigue switch would flip and I would be unable to continue. I don't mean that I get tired and feel like I want to return home. I mean that I can NOT continue. Sometimes I have to sit down and rest and others I need to lie down and sleep for several hours. If I continue, I stagger like I am drunk and my thinking processes can become impaired. I do not drive if I am that fatigued!! I always make sure that outings I take on my own take place after at least a day of rest, and I have a Plan B in case I can't get home.

Dr. H suggested that I take a medication vacation. He told me to go off the Revlimid for a few months and see how I felt, then we could reintroduce it at a lower dose if I decided to do so. I did not like this idea, as the Rev was keeping me in remission. He advised me that there were new drugs that were approved that I could take if I relapsed right away. I told him I wanted to discuss it with Dr. K first. Thankfully I did.

The Rev costs me $11,000 a month. (I take it every day, no breaks.) When I began my protocol, I had to be approved for the use since it was for maintenance...and not for treatment. The drug company did approve me and the insurance plan agreed to cover the 80% and the drug company picked up the other 20%. Dr. K told me that sometimes when a patient goes off the drug and says that they are not tolerating it well, the drug company may decide not to continue to provide it to that patient. In addition, my insurance company may decide to drop my coverage if they feel it is not being tolerated and may cause other issues. The last concern was that since I had been taking it for 2 years at that point, if I came off of it, it may not work for me when I went back on.

So...if I had not kept my Dr. K as a second opinion, and I had gone on Dr. H's advice only, I could have been royally screwed. Yes, there were other options on the back burner, but I have no idea if they will work for me.

The second event happened recently. I had pneumonia and Al had to work in Ottawa so my parents came down to baby-sit me. :)  I had an appointment with Dr. H and I decided to keep it as I was on the mend anyway. Dr. H refused to listen to my chest to see how I was doing with the pneumonia. He told me that it was my GP's job to check on me. He also told me that my pneumonia must not have been very bad if they needed to find it through an MRI and not on an x-ray. When I told him I was also seeing a cardiologist because of an arrhythmia was found when I was in the ER, he told me that it was of no interest to him since it was not related to my MM. Wow! The icing on the cake was when he proceeded to tell my parents that I was technically no longer in remission, but my disease was not progressing. I was livid. First, he had not told ME that I was not in remission, and how dare he tell my parents!! Thankfully they are hard of hearing and did not really understand what he was saying, so I let it go and will address it with him next visit.

When I saw Dr. K this past week, I asked him if I was still in remission. I related the conversation with Dr. H. He looked surprised and quoted my numbers and said that I was definitely still in remission and he could not understand why Dr. H would say that. He wondered if he had looked at old numbers perhaps.

I think Dr. H just did not think before he spoke. I think he is angry that I am seeing Dr. K. I think that he was in a pissy mood and took it out on me and my parents. This is the Dr. H that is the legendary asshole I have been hearing about. I will let him know how I feel next time I see him. Depending on how that goes, I may have to change oncologists. His arrogance caused me almost 2 months of anxiety and could have caused my parents much angst as well.

This long diatribe is meant to highlight the importance of getting second opinions; of doing your homework; of not blindly following your doctor's orders; and understanding that not all doctors are alike. Some are assholes and some are simply fabulous!! You need to find someone you trust and that you connect with and then hold on to them!!

Namaste!

I am happy to report that I have had another great check-up!!

The cancer is almost non-existent as my M-spike is still within/below normal range.  :)  My Kappa/Lambda free light chain ratio remains around 2:1. It should be at 1:1, but it is only slightly above the norm. If these numbers confuse you, then don't worry about it. Only other MM warriors will be able to relate. :)

The bottom line is that I remain in remission. I credit the maintenance chemotherapy that I take every day for that success. :) As you know, from previous posts, the Revlimid is also the cause of my side effects of extreme fatigue, digestive issues, muscle spasms, peripheral neuropathy (nerve damage) in my feet, and chemo brain (duh!!). It does get me down sometimes, but at the end of the day, it is saving my life. The longer I can remain in remission, the closer we will be to a cure when I relapse. :)

I have embarked on a few different approaches to address those side-effects. I have begun a yoga class on Sunday mornings. It leaves me feeling strong, spent, and in control. although I cannot embark on a full scale exercise program, the yoga helps to keep my muscles moving, blood flowing to all tissues, and strengthening my core for balance and spinal alignment.

Yoga also provides an outlet for me to interact with other women in a safe and non-judgmental environment. It does not matter that I am 80 pounds overweight, or that I cannot feel my feet and topple over during tree pose. It does not matter that I have to rest mid-way through the hour. It does not matter that I eat meat and sugar and gluten. It does not matter that sometimes I have a glass of wine after yoga (we meet at a winery). It does matter, though, that I am accepted and supported.

My yoga teacher, Rachael, also provides advice and guidance on alternative, natural therapies. We met last week and she has provided a number of suggestions for me with regard to using essential oils. Although I hold a membership in DoTerra and have amassed a plethora of essential oils, I have used them primarily for diffusion. She has provided suggestions to assist in a number of areas that I have concerns. The good news it that I already have most of those oils already!! Now I can put them to better use.

Of course I had to check with my oncologist about ingesting certain oils as anything that could "boost" my immune system could also kick-start my cancer. Blood cancers, especially multiple myeloma, is a cancer of the bone marrow and the blood cells produced there. MM produces rogue or mutated anti-bodies and boosting production of anti-bodies will boost the production of the good and the bad. Lucky for me, many of the proposed strategies are either topical or diffused so there are no issues to worry about.

I will keep you posted on what I find is working for me.

Until then, Namaste!

Grounded

I had a bout of pneumonia.

It was quite scary actually. Biaxin, which is the usual choice of antibiotic for sinusitis, or bronchitis, always works for me. I see the effects almost right away. Not this time. I kept getting worse and worse over the 2 days after starting it. I went to the emergency room on day 3.  The doctor on call was phenomenal! She went above and beyond for me. When the x-ray did not show pneumonia, but I was obviously having some respiratory issues (like passing out)...she ordered a CT Scan which revealed the culprit. The new antibiotics would take up to 48 hours to show an improvement, so I went home very worried.

You see, I have done my research on Multiple Myeloma...and I know that most people with this cancer die of complications from pneumonia. It was the first time that I was thinking about dying in a serious way.

It seems overly dramatic in retrospect, but at the time, when every cell of my body ached, my lungs were on fire, and the chills and sweats of a fever were overwhelming my senses, I really thought that I could get so sick that I could die.

I thought about the things I had not yet done that I wanted to do. I realized that as much as I thought I was ready to accept whatever was coming my way, I really wasn't. I have lots of living to do yet! I have people to see, places to go, memories to make.

I also realized that I am still trying to do too much. Sigh. Type A personality traits do not easily lend themselves to slowing down to a crawl. But I have to. I have to slow down. Stop trying to do too many things on my good days. Just chill. It is a hard pill to swallow.

So, I will go back to ensuring I have days of rest between my "activity" days. I will stop saying "yes" to every invitation that comes my way. I will plan my weeks more carefully to ensure I don't get over-tired. And I will go back to having my afternoon nap-time, whether I really feel like having it or not.

I am grounding myself. Grounding in the teenager-in-trouble sort of way...LOL!!...but also in the spiritual sense. Finding my centre. Focusing on self. Paying attention to my body. Nurturing self FIRST above all else.

ground·ed

ˈɡroundid/

adjective

1. 1. 

   well balanced and sensible.

   "the kids have money and a rock-star dad, but they seem grounded"
2. 2. 

   (of a pilot or an aircraft) prohibited or prevented from flying.

   "you don't taunt a grounded flier, especially after he's had a few beers"

I invite all of you to do the same for yourselves, whether you have a critical illness or not. Make yourself a priority. Slow down your life. Savour the moments and the people in you life. It all comes to an end much too quickly. Don't watch the concert through your view-finder...take it in with all of your senses!!

Decisions, decisions...every 3 months

As you know, having cancer is difficult. Even those who have beaten it, and are 5 years free and clear, still worry about it. Every breast exam, every blood test, every check-up is stressful. In my case, I go for blood work and a check-up every 3 months. As Dr. H says, it is not if it comes back, it is when it comes back. He does not say this to instill fear, he wants to be up front about my reality. I accepted this from the very beginning.

Multiple myeloma is not curable. At the time of my diagnosis average life expectancy was 4 years. It is now 5. :) There have been enormous advances in this field of research. In the last year or so 3 new drugs have been approved for use in relapsed myeloma. Three!!!

When I was diagnosed, I embarked on the common protocol at that time; stem cell transplant. I was an ideal candidate as I was young (in the MM world) and I did not have extensive bone or kidney damage. My induction chemo, or the chemo you get to prepare you for stem cell harvest, consisted of the chemo drugs Velcade (aka Bortezomib) and Cytoxin (aka Cyclophosphamide) and a high dose steroid called Dex (aka Dexamethazone). They called it CyBorD. It worked very well to kill off the cancer cells in my blood and bone marrow. There was a cost to this, though. I had to stop the Cytoxin a month early because it was affecting my bladder and it can cause bladder cancer. The Dex was just nasty and caused a weight gain of 40 pounds among other side-effects. I have written posts about them in the past. The Velcade started me down the road of peripheral neuropathy. This is nerve damage that affects the feet and sometimes the hands. Diabetics often have this same condition.

The stem cell harvest process was pretty straight forward and then the transplant. I wrote a lot of articles back then about those experiences and it might be worth going back and reading them. :) (Spring 2014) The chemo I got during that process was very high dose and it took a long time to recover. I was severely nauseated for almost 30 days and then pretty weak for 3 months. At that time I was told that I was in remission. Yay!! But I had a difficult decision to make.

Since MM is going to come back, I needed to prepare myself for the inevitable relapse. At that time (September 2014) there were only a few options available for treatment of relapsed myeloma.  There was the option of another stem cell transplant, and I had enough stem cells on ice to do that, or a protocol of Revlimid, Velcade and Dex. I already knew what the Velcade and Dex were like. I knew they worked the first time around, but what if they did not work the next time. Revlimid was a new commodity and was working very well for many MM patients. But what if...? I researched the pros and cons on maintenance chemotherapy. I did not get a lot of answers.

Even my doctors were indecisive about whether to do it or not. To this day, it is a inconclusive discussion amongst the oncologist community.There was conflicting research and not enough historical data to determine if it would make a difference in the long run. Without maintenance chemo it could be a month or it could be a few years before it came back. The average was 18 months. I could prolong the remission period by taking maintenance chemotherapy. This would give me 1-5 years before relapse. A small number of people stay in remission for much longer, but I have not heard of many. My first haematologist said he had one patient who went 20 years. This doctor was in his 70's and had floor to ceiling stacks of patient files in his office that did not fit in his file room. Not every one had MM, of course, but you get the gist.

Generally speaking, each remission period is about half the time of the one before it. I felt that if I could get 5 years on the first remission, not only did that increase my chances of living longer, but it also increased my chances of there being a curative or more effective drug protocol within my lifetime.

I decided to take the maintenance therapy. I started my daily pill of Revlimid (aka Lenalidimide - a close cousin to Thalidomide - which is also a MM drug) in October 2014. The process of obtaining the drug itself is interesting. The RevAid group gets the recommendation from the doctor. They then perform a telephone interview with me, then render a decision on whether I am a good candidate or not. Once they approved me they contacted the drug insurance company that we use and obtained a commitment to cover the drug at 80%. The drug company then agreed to cover the other 20%. In this way, it cost me nothing. Thank goodness, since it is $11,000.00 a MONTH.

I have discovered that if I was taking it for "treatment to prolong life" vs "maintenance treatment to delay relapse" it would be covered by the government of Ontario. My good friend, Elisabeth, is on 15 mg of Rev a day, vs my 10 mg a day, and hers is covered. She will gladly tell you that this was the best thing McGinty did during his term as Premier of Ontario!!

So here I am, over 2 years into my remission period and finding the side effects of the maintenance chemo limiting my mobility and ability to fully engage in activities a normal 54 year old woman should be able to do. I have severe fatigue at times. It will suddenly descend on me, sometimes without warning, and I need to lie down almost right away or I will be sick. Sometimes a 20 minute rest will help and other times it will be 2 or 3 days of rest and sleep that are needed.

This has eliminated my hopes that I could start to get fit by riding my bicycle. Al says I can ride it around the block again and again...like a 5 year old :) ... but I don't see the fun in that. I take an exercise program at the Wellspring cancer support centre  but I could only do one day a week and not two as it really tuckered me out. I wrote a blog post about my exercise program. When you read it, don't take a sip of your coffee or it will come out your nose! It is really, really low key!!! LOL! BUT...it tuckered me out for 2 days.

I am not complaining. I simply stating the reality. I am okay to have to plan my outings. I plan rest time in the days preceding and the days following an outing. When I need to rest, I rest. If I can't do something, I don't do it. As an example, just after Christmas, we had invited a handful of friends and neighbours over for an after-dinner visit. I had to cancel as I was so exhausted from Christmas that I was physically sick.

The other two main side effects have reduced my ability to venture very far on foot. The first, the peripheral neuropathy, has caused numbness and diminished feeling in my feet and lower legs. My feet constantly feel cold - like they are encased in blocks of ice - and they do not warm up with heat. They feel warm to the touch...but my nerves are telling me that they are cold. It causes muscle cramping quite often which is quite painful. I also get sharp, piercing nerve pain at night, especially if I have been on my feet a lot that day. It can be so bad that I need to take either a Percocet or a sleeping pill to get to sleep.

This causes me to think through and carefully plan my adventures each day. If I need to go to the mall, which entrance it closest to where I need to go? What shoes can I wear that day? This is dependent on the level of pain or numbness or if my arthritis has flared up. Am I tired? Will I get fatigued? Each movement away from my car is calculated with the estimate of how long it will take me to get back if I need to. My vacation needs to be planned so that I have the best experience possible within my limitations.

The other side effect is diarrhea. The Rev does something to make my body think that my bile is poison. So, sometimes, when my body starts its digestive process it suddenly wants to purge everything in my system at once. It is painful and uncomfortable. It sometimes is a one-time 10 minute ordeal, but often it is repeated several times over the course of several hours. If you have ever purged for a colonoscopy, you know how that bile burns your insides (and outsides)!. It is not pleasant. Thank god for Penaten cream. LOL!! I discovered a drug that helps and I take it twice a day, but it does not always work. It is a crap shoot.... LOL!!! Literally!!

So, I am okay with this new normal. I have accepted it. I am alive. I am able to do most things that I want to do. However, sometimes I do get depressed about the limitations in my life. Each 3 month appointment sees me in discussion with my doctors about "quality of life" and the decision is mine to make regarding staying on the maintenance chemo or not. If I stop taking it, it is likely, but not certain, that my remission period will be shortened. There are a number of choices of drugs I can take when I relapse, but I wonder if they will work for me. I also think about the tick tock of the timeline for remission periods. I will have to ask my doctor if this is still the case with the new drugs. They may not know yet, though, as they have not been in use long enough for there to be enough data.

So, I elect to stay on maintenance another 3 months. Then I will re-evaluate the situation.

I wanted to write this longer explanation of what this process is like because it will help you to understand that cancer is not just the effects you see on the outside of the person. There is an incredible amount of turmoil going on inside that has a deeper and more profound affect on them. We hear a lot about "invisible illnesses" and this is one of those. I may look good...Damn, I look good!! LOL!! ... but a little makeup and a good haircut belie the amount of mental effort it took to get there.

Be kind to people. You never know what is really going on behind the obvious.