My hair is falling out. I see it everywhere....and have taken to wearing a hat when I am cooking. I have one of those white chef hats. :) <giggle>
The really funny thing is that you can't tell I'm losing my hair by looking at me. I have soooo much hair, that even though it is falling out like crazy, I have no bald spots.
This is good and bad. Good because I can still rock the pixie cut...but bad because my head is always itchy or sore and I leave hair everywhere. I am now at a crossroads...do I shave it off completely? Seems like a shame when I have a full head of hair still. But it is really annoying me.
I have one wig - just got it today - and am working on getting another. Once I have some options and feel comfortable with the wigs, I will have to make a choice. (At least I have a choice!)
Until then, you just never know what I may look like. :)
Monday, 17 February 2014
The long and winding road...
Sometimes the journey becomes tedious. I am finding it so. <sigh>
I think the weather is a major culprit...that and the ice. I am afraid of falling so I do not venture out beyond the mailbox across the street. Sometimes I just stand on the front porch to get some fresh air. :) Another few weeks and hopefully the ice will be gone and I can get out walking. that will do me a world of good!!
I have not been feeling the greatest...there was a change in my protocol and I am no longer on high dose steroids 4 days on 4 days off. I now take steroids along with my chemo and Velcade one day a week. This was the first week so it may not be typical, but I found I was fine on Thursday (chemo day) and Friday but did not feel well Saturday, Sunday, and not so great again today. Since steroids provide some anti-nausea effects, maybe not being on as much steroid made my stomach feel a little more upset. I also have no appetite. (My fat cheeks are grateful...LOL) It is hard enough to find beverages that taste okay that are also not chock full of calories and sugar...so now to force myself to eat as well is a chore.
Since I weighed in last week at an all-time record high, I should be grateful that I am not as hungry now. :) Yes, I have gained back all the weight I lost on Jenny Craig two years ago. :( But I am happy I have the extra pounds for a buffer for times yet to come where I will be unable to eat well.
The doctors are very happy with my progress to date. One of the indicators of multiple myeloma is the level of immunoglobulin in your blood. These are proteins that normally fight infection. With MM, my bone marrow is making an imperfect immunoglobulin (Ig) of the Gamma variety...so my IgG levels were increasing -- which alerted the doctors to my condition initially. My levels did not ever reach 30, which is a tipping point of sorts. (There are several factors that determine the point that treatment is needed, and this is one of them). Before I started treatment I was around 27. Ideally, we need to get to 0 before my "harvest" but the goal is to be below 5. My IgG levels 2 weeks ago were at 7.95. :) This is really good progress considering I am only half way through my induction chemotherapy protocol. (Induction is the period where we try to reduce the cancer as much as possible leading up to harvest.)
I will get another more concentrated infusion of the same chemo I am currently on (cyclophosphamide) just before the neupogen shots begin. (Neupogen is the drug that stimulates my bone marrow to produce stem cells.) I will have 10 days of shots then will be ready for harvest.
After harvest I will have the melphalan chemotherapy (the really powerful stuff) that will kill all of my bone marrow (good and bad) and reset my immune system to that of a newborn baby.
I expect to have all of my dates for this later this week, but it looks like we are on track for the transplant to occur in early-mid May...meaning I will be home in early June. Approx 3 months after the transplant I will be able to lead a fairly normal life -- other than masking up when in public, and getting fatigued easily....so hopefully I will be able to visit with some of you then.
The journey is long, but I am plodding along.
I think the weather is a major culprit...that and the ice. I am afraid of falling so I do not venture out beyond the mailbox across the street. Sometimes I just stand on the front porch to get some fresh air. :) Another few weeks and hopefully the ice will be gone and I can get out walking. that will do me a world of good!!
I have not been feeling the greatest...there was a change in my protocol and I am no longer on high dose steroids 4 days on 4 days off. I now take steroids along with my chemo and Velcade one day a week. This was the first week so it may not be typical, but I found I was fine on Thursday (chemo day) and Friday but did not feel well Saturday, Sunday, and not so great again today. Since steroids provide some anti-nausea effects, maybe not being on as much steroid made my stomach feel a little more upset. I also have no appetite. (My fat cheeks are grateful...LOL) It is hard enough to find beverages that taste okay that are also not chock full of calories and sugar...so now to force myself to eat as well is a chore.
Since I weighed in last week at an all-time record high, I should be grateful that I am not as hungry now. :) Yes, I have gained back all the weight I lost on Jenny Craig two years ago. :( But I am happy I have the extra pounds for a buffer for times yet to come where I will be unable to eat well.
The doctors are very happy with my progress to date. One of the indicators of multiple myeloma is the level of immunoglobulin in your blood. These are proteins that normally fight infection. With MM, my bone marrow is making an imperfect immunoglobulin (Ig) of the Gamma variety...so my IgG levels were increasing -- which alerted the doctors to my condition initially. My levels did not ever reach 30, which is a tipping point of sorts. (There are several factors that determine the point that treatment is needed, and this is one of them). Before I started treatment I was around 27. Ideally, we need to get to 0 before my "harvest" but the goal is to be below 5. My IgG levels 2 weeks ago were at 7.95. :) This is really good progress considering I am only half way through my induction chemotherapy protocol. (Induction is the period where we try to reduce the cancer as much as possible leading up to harvest.)
I will get another more concentrated infusion of the same chemo I am currently on (cyclophosphamide) just before the neupogen shots begin. (Neupogen is the drug that stimulates my bone marrow to produce stem cells.) I will have 10 days of shots then will be ready for harvest.
After harvest I will have the melphalan chemotherapy (the really powerful stuff) that will kill all of my bone marrow (good and bad) and reset my immune system to that of a newborn baby.
I expect to have all of my dates for this later this week, but it looks like we are on track for the transplant to occur in early-mid May...meaning I will be home in early June. Approx 3 months after the transplant I will be able to lead a fairly normal life -- other than masking up when in public, and getting fatigued easily....so hopefully I will be able to visit with some of you then.
The journey is long, but I am plodding along.
Sunday, 2 February 2014
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.
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!!!
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.
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!!!
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