It has been a while...

Did you wonder where I had gone?

The truth of the matter is that I had a couple tough weeks. Usually on my non-steroid days I am foggy and lethargic...but the last week I have been down for the count. This past weekend I slept most of Sunday, Monday, and Tuesday. Day and night.

Today is my first day on steroids again, so it is a more productive day for me. I thought I should write something.

One of the things that has me a little down this past few weeks is news of Lisa Ray's return to treatment. You may recall from an earlier post that Lisa is a Canadian-Indian actress who was diagnosed with multiple myeloma when she was 37 years old. She chronicled her journey in the Yellow Diaries blog and I saw her as a beacon of sorts for how I hoped my journey would progress. She had the same type of induction chemo therapy as I am having now,  and then she had a stem cell transplant. She achieved a "complete response" which means full remission. This is rare...2-3 % chance. She spoke about hoping for a long remission and that she might be one of those MM survivors that take a 20 year ride. I was rooting for her.

I found out recently that she went back into treatment last January and now is taking part in some clinical trials. Her remission only lasted for 2 years. I found myself feeling a little hopeless for a moment. I thought she was the good luck story that would sustain my hope and her relapse felt like mine. I was very sad.

Anyway, I worried about it and worried about my own situation for a few days, and got a little down in the dumps...but I am okay now. I realize that nothing in my situation has changed. I still have the same chance of complete response and long remission that I did before. There is no typical path that one follows during this MM journey. My path is not yet known and I am just as likely to be on the 20 year plan than anyone else! :)

I know that I will have ups and downs during this ordeal. I haven't had too many down times, so I am allowed.

I am on the upswing again and things are looking pretty rosy. :)

Hair Cut

It is done. My hair is cut. I love it!!

I needed to do it and I am glad I did. It will make everyone else feel awkward for a bit, but that's okay. They'll get used to it.

:)

Hair today - Gone tomorrow

It is funny how people can see things very differently from each other. As an example, the loss of a woman’s hair during cancer treatment seems to be either a non-issue or a huge issue...depending on the person. Most people think that losing her hair is one of the most difficult parts of a woman's treatment. I am here to tell you that this is not necessarily so.

Throughout this journey, people are quick to tell you about people they know who did not lose their hair during their chemo treatments. My doctors were keen to tell me the same thing...the induction therapy I am having for the 4 months leading up to the stem cell transplant is not likely to cause full baldness, but a gradual thinning. I may not need a wig until after the stem cell transplant. This was all intended to make me feel better. Little do they know.

I was looking forward to losing my hair. I know, some of you will think that is strange. But it is true. I like to look for silver linings and the one that I thought I had in the bag was the ability to get up, shower, and towel dry my head. No blow-drying, no straightening, no haircuts, no highlights...just me and the wind – or for the sake of others around me – at hat or scarf or wig when I go out. When my doctor told me I would not likely lose my hair, I WAS DISAPPOINTED! LOL! I am not kidding!

Now don’t get me wrong...I love my hair. I have very full and lovely locks...I just want a break. I have spoken with a few women who lost their hair during their treatment (breast cancer treatment usually results in total hair loss) and have read blogs of cancer survivors who all say it was a liberating experience to let it go. I want liberation.

I don’t have control over too much of my life at the moment...and I’ll be damned if I let the cancer treatment protocol determine when I lose my hair...so...I have decided to take step one tomorrow. Not a full GI Jane buzz but a very short pixie cut. That way I don’t have to do much to it in the morning and I will reap some benefits. Some of my friends and family don’t really get it. (My dad and sister and my bestie’s husband are all hairdressers.) Why would you cut your hair off if you didn’t need to???

Why??  BECAUSE I CAN!

One of the people I follow (not in a stalker-type way) is Lisa Ray. She is an Indian-Canadian actress who is best known for her Bollywood work. One of my favourite movies of all time is Water. Lisa played the beautiful Kalyani.

Last year, I found out through a bizarre “6-degrees-of-separation” encounter with my massage therapist that Lisa Ray has multiple myeloma.  It was her Yellow Diaries blog that inspired me to write my own blog. She speaks about the shaving of her head and the power she felt it gave her. (Mind you, she was on the red carpet and made a statement about Multiple Myeloma research at the same time...but...whatever.) I decided that I will do the same.

So, if you see women who are bald...don’t automatically think that they must feel bad or that it was difficult for them to lose their hair. For many (not all) it is a badge of courage. It is a symbol of taking back our power. It is okay!! J

It is only hair, and it grows back!

Acid Reflux...Taming the Beast

Of all the demons I thought I would be battling during this journey, I certainly did not count on acid reflux to be a strong contender. After several days of hell, I thought maybe a note or two about it might help someone else who ends up in battle with this bastard.

I have had my bouts of heartburn and dyspepsia...even gall bladder attacks. I never felt this bad before. I can only describe it as having an alien demon residing in your stomach who pokes and twists and pushes you with its spiny elbows and knees. Then it stretches up its bony, spiny claw and scratches down your throat...again and again. Honestly, it felt like something was going to crawl up my throat and out of my mouth.

This is how I envisioned the bastard: (although depicting him as purple is being too nice)


I may have mentioned how steroids make you ravenously hungry...well, how ironic is that....you want to eat...crave food....then feel like your stomach is about to explode when you eat.

I even resorted to MILK...yes...OMG! Al was quite upset that he needed to go buy more as I was dipping into his stash. (I rarely drink milk...and only use almond milk on my cereal or in smoothies.)

Anyway....in the end I got some prescription medication to calm the beast and it seems to be working fairly well.  Wish I hadn't waited to do that, though. You can actually do a lot of damage to your esophagus if you leave this unchecked. Your stomach is conditioned to withstand the acid but your sweet gentle esophagus is not. I still feel the burn when I drink something hot. Just a reminder of how stubborn I can be.