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>