Shhhhh...I'm sleeping

If you have been wondering why I am not as active on Facebook or on my blog lately, please don't worry. I am fine. I am just really tired these days and have had a few more of the foggy days than usual so I can't get too creative on those days.

My doctor told me that as I continue through the chemo I will find myself getting more and more fatigued. some days I spend the entire day on the couch or in bed. But it is good for me, and I know that at the other end I will have a few really good days.

So, don't worry if you don't hear from me -- I am just sleeping :)

Rant on the health care system

I am going to rant a bit:

I have been frustrated with the health system. I go for chemo every Thursday, so I have blood work taken every Wednesday. They check to make sure my white and red cells are good and that I can tolerate treatment. This chemo that I am on is not a bugger on the white cells so I am always good to go. Once a month I have additional test that checks my blood protein levels...my IGG (Immunoglobulin type Gamma) this will tell them how well the chemo is working. My levels were just under 30 when I started and we want them to be under 5 for the stem cell transplant process to begin in April/May.

When I went for my one month check up (over 2 weeks ago) the IGG levels were not reported on my monthly test results. Doc thought they may be late..some tests have to be referred to other labs. The following week I forgot to ask for the results and the clinic was really, really busy. I got a copy this past week. The lab did not run the IGG levels. How the hell does my Doctor know if my chemo is working if he does not have this info?? Why did he not follow-up and request that when I went for my weekly test over the following 2 weeks, that they add this to my regimen?? Because your health care system doesn't follow-up!

I called the lab myself and they pulled all their records and the original requisition and they claim the IGG/IGM/IGA tests were not on the monthly requisition. I call Bull-shit! The only difference on the weekly and monthly were these protein tests. That's why there are two different requisitions! I had planned to make copies of the requisitions before I took them to the lab, but I forgot...so I can't prove they messed up. And even if I could, what difference does it make now??  So...I called the cancer clinic and reported my findings and now the oncologist has faxed new requisitions for next week. I will hopefully know then at what pace my cancer is receding on Thursday.

I am not worried about it...it will be working...I am just frustrated with the level of involvement patients must take in all aspects of their health care.

A similar situation arose with the doctors not moving quickly on getting my treatment started. I did not have symptoms of anemia or kidney damage so they really did not get into a tailspin about getting me started on treatment. They even offered for me to take a couple months to go on a trip or get through Christmas, etc. I kept saying that I had already done the trip and just wanted to get started....before I developed anemia and kidney damage.

When my MRI results came in they sure changed their tune. Although my x-rays only showed a few small lytic lesions (punched out holes in my bones from the multiple myeloma) in my skull, the MRI showed a different picture. I won't get into too much detail, but suffice it to say, I have lesions of varying degrees throughout my spine. Three of them are fairly significant -- at least I think they are -- at 9 mm. 1.0 cm and 1.1 cm across in the cervical, thoracic and lumbar regions...so I've got all areas covered. I am told that your vertebrae are very strong and I should not worry, but just don't exercise vigorously, or fall, or stand on your head....LOL!   BTW - I am a klutz...I fall all the time!!

On another note...the MRI also showed that the neck pain I was seeing the physiotherapist for several months for - that my doctor told me was arthritis and not a disk issue -- was the result of 2 herniated disks (in addition to the lytic lesions). With a less serious bulging disk in my lower back to add to the fun. So...this should give you an indication of my pain tolerance levels, and that we know when our bodies are out of sync and something needs to be done. We just know! Don't ignore it. Act on it and push your doctor to keep looking for the problem!! They told me if the lytic lesions were causing me pain they could do low-dose radiation. Hell, if I can live with two herniated disks in my neck for 10 months, I think I'll pass on the radiation.

Anyway -- 2 messages in this blog post....First:  and Second: if you don't feel well, go to your doctor, don't accept the answer that it is nothing or we'll wait and see - push for answers and a diagnosis and a treatment plan. We all deserve to live a long, healthy, painfree life.

The Laughing Buddha

This is me. LOL!!



Well, this is how I picture myself these days. Steroid bloat has added 20 pounds almost...well give or take 7-8 pounds on any given day -- and I have a moon face a Buddha belly. I am happy though, which is why I picked the "Happy Buddha" picture.


Sometimes I also feel like I look like Jabba the Hutt...when I am all zoned out and unable to form coherent thoughts...Al gets annoyed with me when I make that comparison. 

As you all keep posting on my pics on Facebook....I don't look bad...and certainly don't look FAT! But we all see ourselves through our own lens and sometimes I look in the mirror and see that beautiful warrior princess and others...not so much. I am entitled to a little self-deprecation from time to time. Humour me.

The truth is that depending on the type of chemo and the other drugs you are taking for your cancer treatment, you will OFTEN gain weight and bloat up. We are told that if we have no appetite, or if our taste changes so much that we find food unappealing, we are to eat anything that we can to get the calories in. Yes...even if it means a bag of chips or a dish of ice cream or a chocolate bar. Ideally, the fresh veggies and dip that I had last night would be the norm, but that is not always do-able. So for now, I eat what tastes. (Not necessarily tastes GOOD, but is palatable.)

As an example, I cannot drink diet Pepsi, or Fresca. (My faves) Plain water is off the books most days as it tastes like chemicals. Iced tea and lemonade are muted. Gingerale is okay most days. I have resorted to sparkling water with peach or I add lemon or lime. I buy fruit juice and dilute with water or club soda. Coffee is a crap shoot. Depending on the day, I can drink my usual Timmies with just a cream, or I go with a French Vanilla Cappuccino or a half black-half French Vanilla. I have taken up tea drinking --- but cannot have green tea or any product made thereof (drug interactions)-- so I have been experimenting. I cannot have pomegranate or passion fruit or some other tropical fruits, so herbal teas are tricky. :) PC's Chocolatey Chai is a good one that my friend Kim turned me onto. (Thanks Kim!!) I would NEVER in a million years have picked it off the shelf but I can taste chocolate (not usually a fave) and ginger -- so it is perfect.

I can still enjoy most pastas (Like Carm's lasagna), pizza and other savoury dishes, (like my friend Sandy's chicken paprikash) but some foods that I loved before...like BBQ hamburgers and chicken wings do not taste good. We'll see how the Superbowl chili tastes this afternoon. :) Chicken has limited flavour so I need to add sauce or seasonings. (Love Swiss Chalet still.) Bacon is still the bomb!!!!

Anyway....you often think of cancer patients as being lethargic and emaciated. There are lots of them. But many of us at the beginning of our journey are chubby little cherubs just trying to get the food in before we get to the other point where we can't eat as well.

I recently read a study that indicated that life expectancy for a person diagnosed with Multiple Myeloma is greatly increased if you are overweight at the time of diagnosis. It was, on average, 3 times longer than if you were underweight and about a third longer if you were at a healthy weight. Yippee...chalk one up for the chubbies! LOL!!!  Now realistically, I know that most people diagnosed with this disease are in their 70's or 80's and being underweight with a disease that eats away your bones, is not a good thing...so the numbers are way skewed...but it gives me hope...and I'll take it!!!

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.