Happy Birthday!

Today I am 56 years old. 6 years ago I was diagnosed with multiple myeloma, a rare blood/bone marrow cancer. It is treatable but incurable. At that time the average life expectancy was 3 years. Since then the ALE has increased to almost 5 years. Here I am, 6 years later and SLAYING it!! 

I have a great life. I travel and entertain. I do date night at least once a week. I binge watch great TV shows. I eat steak and pizza and ice cream whenever I want. 

I am surrounded by wonderful friends and family. (In person and virtually!)

I wake up every single day with a happiness and gratefulness that I did not have before. 

I wake up every single day. 

I am here. 

I am living my life to its fullest each and every day. 

Enjoy your life NOW. Be thankful for what you have and do not lament over what you don’t have. Life is a gift. Accept it graciously!

Sparkling

Well, I have had quite a journey of late. 

I started to “sparkle” quite often. 

Sparkle? This is the term I use for the pins-and-needles sensation I get sometimes. It is not just a tingle...it is like thousands of ants under your skin. Anyway...I like to say that I am sparkling...it just sounds nicer!! 

I remembered having this sensation when I have been dehyrated. Once I had heat stroke (remember that, Tanya B), and I have experienced it other times when I was quite dehyrated and close to passing out. (Well, I actually have passed out...)

So, this was occurring quite often this summer. It was very hot here in southwestern Ontario and very humid, so I attributed it to dehydration. I stayed indoors in the AC whenever possible and drank extra fluids, including those with electrolytes. 

After some routine blood work my GP called and said that my potassium was low and I needed to take SLO-K, a potassium supplement. Of course...it fit in with my self-diagnosis of dehydration!! So I started taking the SLO-K. I was still sparkling often (multiple times a day). I started to check my blood pressure. It was sometimes high and sometimes low...and not really predicable or attributable to anything in particular. I thought maybe my blood sugar was low. I bought a blood glucose meter and started to check my sugar levels. Normal, normal, normal. <sigh>

When I went to my GP he thought perhaps my blood pressure meds were not working properly (it was quite high when I saw him), so he switched them to another type. I started to take it and again, and my BP seemed to stabilize, but the sparkles just kept coming!!

On our return trip home from Nashville last month, I ate a burger that was a little pink in the middle and got food poisoning. I was quite ill for several hours and became so dehyrated that my muscles started to go into spasm. My hands cramped up like chicken feet, muscles in my neck, back and face started to spasm. I had difficulty speaking since my tongue was in full spasm. I was very scared and when Al woke up to my cries for help, he immediately called 911. The 4 handsome paramedics/firemen that arrived certainly raised my spirits, and I had exceptional service in the ER at the Indianapolis hospital. After some IV fluids, Zophran for nausea, and direction to take extra potassium, I felt better. We were able to drive home the next day. 

4 days later, still in bed and still quite ill, I decided that I needed to go back to the ER (in St. Catharines, this time). I was again given IV fluids, a vile potassium drink, and a potassium phosphate IV. My potassium, phosphate and calcium levels were depleted. I was instructed to double my calcium and potassium supplements. The ER doctor did not know what to do about the calcium deficiency as she did not want to upset my digestive system further. I was referred to the Acute Internal Medicine Unit the following week for consultation. 

By the time I went to the AIM Unit I was feeling much better and my potassium, phosphate and calcium were all within normal range again. What was interesting was that I looked up hypocalcemia (low calcium). The symptoms were clearly what I had been experiencing for months. Tingling in face and extremities, spasms of small muscles, feeling faint, confused, tired, etc. The doctor who saw me said the same thing. Classic symptoms of hypocalcemia.
So how did this happen? I take calcium and vitamin D supplements. Well...it seems that two of the drugs I take can cause mal-absorption of calcium. The colestid that I take for my chemo-related diarreah can cause it...well I am not stopping that!! The intravenous bisphosphanate I get every 3 or 4 months can also cause it. I am not stopping that either since it is helping my body fill in those bone lesions in my spine. So.. I take more calcium (double) and we will see what happens.

Since I started the extra calcium I have had very few sparkling episodes. Holy crap...who would have thought!?! We don’t think of calcium as something we might be lacking to the extent that it will cause such significant effects. If the ER doc had not noticed it in my blood work, I might still be dealing with those strange episodes. I expect that my next blood work check will show that it is back to normal.

What an ordeal. I am glad I finally figured it out. Sometimes the sound of horse hooves is a zebra.

The straight goods about my hair

After I lost my hair, it grew back very curly and very dark. I expected some changes, and chemo curls are very common. Some people have different coloured hair and others end up with a different texture. The changes generally last about 12-18 months and then your hair will often return to normal.

I was thrilled with my chemo curls. As a straight-haired girl, I always wanted to have some curls. When I was young I had perms to provide body and curl. As I got older, I just played with my curling or straightening irons and made the best of what I had. In more recent years I started to develop a little bit of wave in my hair...mostly noticeable if I let it dry naturally.

The curls I had after my hair grew back were certainly different than anything I could have imagined. Soft and bouncy curls!! I loved it!! I had a good run of about 3 years with it. About 8 months ago, I noticed that the new growth was significantly less curly. Each haircut left less and less of it and my last haircut took the curls away. I do have some wave in my hair still, but probably not much more than I had pre-cancer.

I miss my curls. Not enough to get a perm though... LOL!

Cancer does not just take from you...sometimes it gives you a little gift. This was one of them. :)

I'm back!!

So...I have not posted in a very long time. A lot has happened though, so I have some catching up to do!!

The short story is that I am doing well. My last check-ups showed that I am still in remission!! Yay!!!  I did have a little hiccup though.

As you know, I see 2 oncologists. One, (Dr. Mary Salib) who is a general oncologist in St. Catharines, and the other, (Dr. Tom Kouroukis), who is a blood cancer specialist at Juravinski Cancer Centre in Hamilton. I usually see Dr. Salib every 3 months and then Dr. Kouroukis 2 or 3 weeks later.

When I saw Dr. Salib on January 22nd, I was at my wits end. I had been experiencing so much discomfort with my feet. The arthritis had kicked up since the weather turned cold and the peripheral neuropathy was causing numbness to the point that I was stumbling and falling more often. I had a couple significant falls that I was lucky to have walked away from with bruises and abrasions. I had a number of other insignificant stumbles that could have been worse. Dr. Salib was quite concerned and decided to take me off of my maintenance chemotherapy temporarily, to see if it would help.

At first I was happy about this decision as I desperately want to be mobile again. For the better part of 3 years now, I have been unable to exercise or walk any distance due to the numbness and pain in my feet and the fatigue I experience. A break from the Revlimid would maybe give me that aspect of my life back.

Once the reality set in of what I might actually be doing...i.e. removing the medication that was keeping me in remission... I started to feel anxious. When I met with Dr. Kouroukis a few weeks later, we talked about it and he made me realize that coming off of Revlimid would likely not make a difference. Most of the nerve damage was done when I was on Velcade leading up to my stem cell transplant. The SCT procedure likely exacerbated the nerve damage. Revlimid does not usually result in severe neuropathy...so it is likely that the damage is already done and with the arthritis, I am just feeling it all more.

He suggested I remain off the Rev for a full month and then go back on every other day for a month. If I do notice a difference, I could either come off it completely or stay on 1/2 strength.

He was right. Coming off of the Rev made no difference in my feet. I am now back on full strength Rev again. My anxiety has abated and I feel good about what transpired.

It is scary to think about relapse. I know that it is going to happen, and I hope it will be far in the future, but the doctors believe I will likely get about 5 years of remission before I have to start a full treatment protocol again. I am almost 4 years post SCT, but 3.5 years out from the start of the Rev maintenance chemo and official "remission"...so I don't anticipate a change for some time yet.

When I started this journey there were very limited options for relapsed Myeloma. Thankfully, research has been very successful for MM and there are 4 new drugs available for me to work with when I need them. :)

Dr. Salib also had x-rays taken of my feet and referred me to an orthopaedic surgeon so that we can see if anything can be done with respect to the arthritis. :) My appointment is at the end of May. I am very excited to see if there is a solution for me.

For now, I will stumble along and make the best of this situation. It certainly did not stop me from enjoying my fantastic trip to Hawaii!!! <big grin>