I know I have commented on how I get "foggy" sometimes...and I do not drive unless I am sure I am up to it...which is not very often. I have a great example of just how stunned I get.
Last week, my sister Michele and her family were in Niagara. She took me to chemo on Thursday morning. I had to register on the ground floor and while I was waiting in line, Michele was scoping out the waiting area.
At one point, I looked over and thought to myself...."OMG, that woman looks just like my sister, Michele!" A few seconds later I was shaking my head saying "duhhhh!" Of course, it was my sister. She had brought me there.
Sunday, 30 March 2014
Thursday, 27 March 2014
Baby Bird Flies Home
My son is coming home for 3 months to help care for me. He took a job 3 years ago in Osoyoos, BC and loves it out there...but there were various circumstances that made it difficult for him to want to stay there. The most significant one was last April when Al had a heart attack and cardiac arrest. Mark was only 23 years old...the same age Al was when his father succumbed to the same medical trauma. Unfortunately he was not able to be revived. For Mark, this shot of reality regarding his father's mortality hit him hard. A short 7 weeks later, Al and I were out west telling him that I had cancer. Once it was determined that I needed to begin treatment, Mark decided he wanted to come back to Ontario to be here to help us. In August he submitted a transfer request citing compassionate grounds relating to my health condition and concern for his father's ability to manage this load himself.
I have family, but my brother Raymond is in Ottawa, my sister Michele is in Summerland, BC, my sister Christine is in Kelowna, BC, and my parents are almost 4 hours away in Port Elgin. The brunt of the care-giving lies on Al's shoulders. His bosses have been great to allow him the time to take me to appointments (I have blood work every Wednesday and Chemo every Thursday along with additional appointments with 2 oncologists). However the time he misses on those days leaves him with work that still needs to be done at some point...either in the evening or on the weekend. In addition he is not sleeping soundly and is in denial about the toll this is taking on him. Having Mark home would have been a god-send this past 4 months. Kaila was home for a few weeks to help out and she calls me every day, but she is not in a position to be able to drop everything a move back. Nor would I want or expect her to. I get much more comfort knowing she has a good job and is establishing a life for herself in Calgary. :)
Mark submitted his transfer request and several follow-up emails since then and was never provided an official response regarding if it was even being considered. When he contacted the highest ranking official in his region outlining his situation and practically begging for a response, he got an apology and assurance that he would have a response within a week. That was in February. So he decided the only option left for him is to take a leave of absence from work and come to Ontario to help out during the critical time in May, June and July. It will be necessary for me to have 24 hour care for this time period and one care-giver is just not enough. If one of them contracts even a common cold they cannot have contact with me.
Al and I each have over 30 years of service with the federal government. We both hold senior positions in our respective departments and have been exemplary employees. This is not what we expected.We did not expect special treatment for our son but just the courtesy of an honest and compassionate response to his request. (As any employee should expect.) If it was not possible at that time, just say so. Manage expectations. Show compassion for the situation. How disappointing. The "employer of choice" certainly has some self-assessment and improvement to do.
In any event, Al will fly out to BC in late April and help Mark move out of his house and drive back to Ontario. He rents a house with his friend and co-worker, Dave, who just build a new house in Penticton and is moving in mid-April. Mark has no idea when or if his transfer will come through so he will not be seeking another apartment or house at this time. He will move his possessions back in a U-haul and determine next steps after his leave is up. Surely he will have an indication of when or if his transfer is being considered by August of this year!
While Al is out west and travelling back across the continent with Mark, my parents will come to stay with me. I will have chemo and then my Neupogen shots during this time so I will not be feeling well. This means that both my parents have to take time off work (neither gets paid if they don't work) to come to care for me.
Cancer has such wide-spread impacts and implications far beyond the medical ones. Everyone is affected. I hate that I must rely on so many people for so many things. I have always prided myself on being independent and self-reliant. This is difficult for me and for everyone else. But we do what we have to do. My friends send messages of hope and happiness and love to lift my spirits and others offer their time and assistance to get me to appointments and give Al a break. I have a difficult time accepting assistance, but it is a necessary evil. It will only get more intense in the coming months.
I am thankful every day for the wonderful people in my life who give so much to me. I will need to be sure to give back in some way when I am able.
I have family, but my brother Raymond is in Ottawa, my sister Michele is in Summerland, BC, my sister Christine is in Kelowna, BC, and my parents are almost 4 hours away in Port Elgin. The brunt of the care-giving lies on Al's shoulders. His bosses have been great to allow him the time to take me to appointments (I have blood work every Wednesday and Chemo every Thursday along with additional appointments with 2 oncologists). However the time he misses on those days leaves him with work that still needs to be done at some point...either in the evening or on the weekend. In addition he is not sleeping soundly and is in denial about the toll this is taking on him. Having Mark home would have been a god-send this past 4 months. Kaila was home for a few weeks to help out and she calls me every day, but she is not in a position to be able to drop everything a move back. Nor would I want or expect her to. I get much more comfort knowing she has a good job and is establishing a life for herself in Calgary. :)
Mark submitted his transfer request and several follow-up emails since then and was never provided an official response regarding if it was even being considered. When he contacted the highest ranking official in his region outlining his situation and practically begging for a response, he got an apology and assurance that he would have a response within a week. That was in February. So he decided the only option left for him is to take a leave of absence from work and come to Ontario to help out during the critical time in May, June and July. It will be necessary for me to have 24 hour care for this time period and one care-giver is just not enough. If one of them contracts even a common cold they cannot have contact with me.
Al and I each have over 30 years of service with the federal government. We both hold senior positions in our respective departments and have been exemplary employees. This is not what we expected.We did not expect special treatment for our son but just the courtesy of an honest and compassionate response to his request. (As any employee should expect.) If it was not possible at that time, just say so. Manage expectations. Show compassion for the situation. How disappointing. The "employer of choice" certainly has some self-assessment and improvement to do.
In any event, Al will fly out to BC in late April and help Mark move out of his house and drive back to Ontario. He rents a house with his friend and co-worker, Dave, who just build a new house in Penticton and is moving in mid-April. Mark has no idea when or if his transfer will come through so he will not be seeking another apartment or house at this time. He will move his possessions back in a U-haul and determine next steps after his leave is up. Surely he will have an indication of when or if his transfer is being considered by August of this year!
While Al is out west and travelling back across the continent with Mark, my parents will come to stay with me. I will have chemo and then my Neupogen shots during this time so I will not be feeling well. This means that both my parents have to take time off work (neither gets paid if they don't work) to come to care for me.
Cancer has such wide-spread impacts and implications far beyond the medical ones. Everyone is affected. I hate that I must rely on so many people for so many things. I have always prided myself on being independent and self-reliant. This is difficult for me and for everyone else. But we do what we have to do. My friends send messages of hope and happiness and love to lift my spirits and others offer their time and assistance to get me to appointments and give Al a break. I have a difficult time accepting assistance, but it is a necessary evil. It will only get more intense in the coming months.
I am thankful every day for the wonderful people in my life who give so much to me. I will need to be sure to give back in some way when I am able.
Monday, 17 March 2014
Quid Pro Quo
The worst part about cancer treatment is the side effects of the drugs. It really is a give and take relationship. (Hence the title of this blog post.) This post may not be of interest to everyone, but I find it interesting.
I have mentionned the challenges I have faced with my steroids already in previous blog posts, so I won't go in to a lot of detail here...but Dexamethasone's most common side effects are:
Increased appetite
Irritability
Difficulty sleeping (insomnia)
Swelling in your ankles and feet (fluid retention)
Heartburn
Muscle weakness
Impaired wound healing
Increased blood sugar levels
In my case, it has contributed greatly to my 30+ pound weight gain, puffy face, and dry eye syndrome. My challenges with hyperactivity, insomnia and crashing are noted in other posts.
The oral chemo drug I am taking is Cyclophosphamide (Cytoxan). Its most common side effects are:
Cough or hoarseness
fever or chills
lower back or side pain
painful or difficult urination
Blood in the urine
dizziness, confusion, or agitation
fast heartbeat
joint pain
shortness of breath
swelling of the feet or lower legs
unusual tiredness or weakness
I have tiredness, dizziness and confusion, and have developed cystitis (like a mild bladder infection only it doesn't go away with antibiotics). This is a concern as it is also known to sometimes cause bladder cancer down the road. :(
The other cancer drug I am taking is Bortezomib (Velcade). It is a shot in my subcutaneous stomach tissue. The most common side effects are:
The Pamidronate that I take once a month for bone integrity has the following side effects:
Abdominal or stomach cramps
black, tarry stools
bloody in the urine or stools
blurred vision
chest pain
chills
confusion
convulsions (seizures)
decrease in the amount of urine
dizziness
drowsiness
fainting
fast or irregular heartbeat
fever
headache
increased thirst
loss of appetite
muscle pain, cramps, spasms, or twitching
nausea or vomiting
nervousness
noisy, rattling breathing
numbness or tingling in the hands, feet, or lips
pinpoint red spots on the skin
pounding in the ears
shortness of breath
slow or fast heartbeat
swelling of the fingers, hands, feet, or lower legs
trembling
troubled breathing at rest
unusual bleeding or bruising
unusual tiredness or weakness
vomiting of blood or material that looks like coffee grounds
weight gain
I have dizziness, drowsiness, confusion, blurred vision, weakness, weight gain, etc...but they could be from this or the other drugs. :) The thing about pamidronate is that it can cause jaw bone death...so I cannot have any dental work done while taking this...and I will be on it for up to 2 years likely.
Anyway...this blog post was not meant to be a litany of my ailments...but just to indicate that for every "miracle cure" there is a hefty price to pay. All of the cancer drugs are themselves carcinogenic...or may cause secondary cancers. You have to weigh out your options. For me, being overweight, with puffy red eyes, blurred vision, burning feet, and painful urination is a small price to pay for the return on investment I will get. It may not be pretty right now, but it will be worth it all in the end.
:)
I have mentionned the challenges I have faced with my steroids already in previous blog posts, so I won't go in to a lot of detail here...but Dexamethasone's most common side effects are:
In my case, it has contributed greatly to my 30+ pound weight gain, puffy face, and dry eye syndrome. My challenges with hyperactivity, insomnia and crashing are noted in other posts.
The oral chemo drug I am taking is Cyclophosphamide (Cytoxan). Its most common side effects are:
I have tiredness, dizziness and confusion, and have developed cystitis (like a mild bladder infection only it doesn't go away with antibiotics). This is a concern as it is also known to sometimes cause bladder cancer down the road. :(
The other cancer drug I am taking is Bortezomib (Velcade). It is a shot in my subcutaneous stomach tissue. The most common side effects are:
- Fatigue, generalized weakness
- Peripheral neuropathy: characterized by decreased sensation and paresthesia (numbness and tingling of the hands and feet).
- Nausea and vomiting
- Diarrhea
- Poor appetite
- Constipation
- Low platelet count. This can put you at increased risk for bleeding.
- Fever
- Low red blood cell count (Anemia)
- Headache
- Difficulty sleeping (Insomnia)
- Joint pains, arthralgia, myalgias
- Swelling of the face, hands, feet or legs (edema).
- Low white blood cell count. (This can put you at increased risk for infection.)
- Shortness of breath
- Dizziness
- Rash (see skin reactions)
- Dehydration
- Upper respiratory tract infection
- Cough
- Bone pain
- Anxiety
- Muscle cramps
- Heartburn
- Abdominal pain
- Low blood pressure
- Itching
- Blurring of vision
The Pamidronate that I take once a month for bone integrity has the following side effects:
I have dizziness, drowsiness, confusion, blurred vision, weakness, weight gain, etc...but they could be from this or the other drugs. :) The thing about pamidronate is that it can cause jaw bone death...so I cannot have any dental work done while taking this...and I will be on it for up to 2 years likely.
Anyway...this blog post was not meant to be a litany of my ailments...but just to indicate that for every "miracle cure" there is a hefty price to pay. All of the cancer drugs are themselves carcinogenic...or may cause secondary cancers. You have to weigh out your options. For me, being overweight, with puffy red eyes, blurred vision, burning feet, and painful urination is a small price to pay for the return on investment I will get. It may not be pretty right now, but it will be worth it all in the end.
:)
What's Next?
Last Thursday was the 13th installment in my induction chemo plan. This means I have only 3 more treatments and then I prep for the stem cell transplant. :) The great news is that my total protein levels have been reduced from 18 to 2. Almost cancer free. :) Doctor was impressed and said I am technically ready for the transplant now (the goal of induction chemo is to reduce the cancer leading up to the collection of stem cells) but we may as well complete the planned course.
I will have my last chemo treatment (cytoxan, velcade and dex) on April 3rd. I will still need to go in on April 10th for my pamidronate (monthly IV to combat bone loss).
The next step is the "info session" with the doctor and transplant team on April 15th. At this meeting they go through the process in detail and we sign off on the procedures.
On April 20th I have the central line put into my chest...this will facilitate the high dose chemo, harvest of stem cells, reinfusion of stem cells, and any blood transfusions that may be necessary during my hospital stay. It goes in just below my collar bone and stays in until my white cell count is safe.
On April 25th I have high dose Cytoxan chemotherapy (the same one I am currently taking orally). This is my mobilisation chemo that preps my body to make lots of stem cells. The day after this chemo I will begin Neupogen shots every day for 10 days. This stimulates the production of blood cells and stem cells. A nurse will likely come to my home each day to administer this shot.
At the end of 10 days, on May 5th, I will go to the hospital for "collection" or "harvest". They will hook me up to a machine like a dialysis machine and re-route my blood to sift out the stem cells. That night they will call and tell me whether they got enough or if I have to come back for a second day of collection. They collect enough for 2 transplants. One for now and one to keep in the bank for later. (If you have read about Multiple Myeloma you will know that it is not yet curable, so after the transplant I will go into remission, but the MM will become active again. At that time, we will likely go through this process again - unless a new protocol has been developed.)
After collection I think I have a little break. :) I will be admitted into the hospital on May 20th for the transplant. I believe the process is for me to settle in on the first day, melphalan chemo on day 2. This is the nasty chemo that kills the cancer and destroys my bone marrow at the same time. It will make me very sick starting about 3 days later...and lasting for several weeks.
The next day I get my stem cells back. The process of engraftment then begins. This means that the stem cells make their way to my bones, and set up bone marrow production shops. It takes several days for this to start to be productive and once that happens, my white cells will start to increase. During this time, I will have no immune system and will be in the hospital in a sterile environment.
Once my white cell count is safe, I can go home. This will likely be about 2 weeks after my transplant. This is still a dangerous time...and I will be vigilant to ensure I do not get an infection or virus...so don't plan on visiting me in June. :)
I will be very fatigued and vulnerable to infection so I will be doing very little except resting over the summer. :) By early fall, I should be strong enough to start visiting and doing more. :)
That's it in a nutshell. I am anxious to get going on the next phase. This last 3 months has gone by very quickly, so I anticipate that the next will as well. I will try to keep up with my blog posts as best I can.
I will have my last chemo treatment (cytoxan, velcade and dex) on April 3rd. I will still need to go in on April 10th for my pamidronate (monthly IV to combat bone loss).
The next step is the "info session" with the doctor and transplant team on April 15th. At this meeting they go through the process in detail and we sign off on the procedures.
On April 20th I have the central line put into my chest...this will facilitate the high dose chemo, harvest of stem cells, reinfusion of stem cells, and any blood transfusions that may be necessary during my hospital stay. It goes in just below my collar bone and stays in until my white cell count is safe.
On April 25th I have high dose Cytoxan chemotherapy (the same one I am currently taking orally). This is my mobilisation chemo that preps my body to make lots of stem cells. The day after this chemo I will begin Neupogen shots every day for 10 days. This stimulates the production of blood cells and stem cells. A nurse will likely come to my home each day to administer this shot.
At the end of 10 days, on May 5th, I will go to the hospital for "collection" or "harvest". They will hook me up to a machine like a dialysis machine and re-route my blood to sift out the stem cells. That night they will call and tell me whether they got enough or if I have to come back for a second day of collection. They collect enough for 2 transplants. One for now and one to keep in the bank for later. (If you have read about Multiple Myeloma you will know that it is not yet curable, so after the transplant I will go into remission, but the MM will become active again. At that time, we will likely go through this process again - unless a new protocol has been developed.)
After collection I think I have a little break. :) I will be admitted into the hospital on May 20th for the transplant. I believe the process is for me to settle in on the first day, melphalan chemo on day 2. This is the nasty chemo that kills the cancer and destroys my bone marrow at the same time. It will make me very sick starting about 3 days later...and lasting for several weeks.
The next day I get my stem cells back. The process of engraftment then begins. This means that the stem cells make their way to my bones, and set up bone marrow production shops. It takes several days for this to start to be productive and once that happens, my white cells will start to increase. During this time, I will have no immune system and will be in the hospital in a sterile environment.
Once my white cell count is safe, I can go home. This will likely be about 2 weeks after my transplant. This is still a dangerous time...and I will be vigilant to ensure I do not get an infection or virus...so don't plan on visiting me in June. :)
I will be very fatigued and vulnerable to infection so I will be doing very little except resting over the summer. :) By early fall, I should be strong enough to start visiting and doing more. :)
That's it in a nutshell. I am anxious to get going on the next phase. This last 3 months has gone by very quickly, so I anticipate that the next will as well. I will try to keep up with my blog posts as best I can.
Wednesday, 5 March 2014
What's up, buttercup?
As the date for my stem cell transplant gets closer I am starting to feel a need for nesting.
I am the one who looks after the finances and the running of the household, so I am trying to put it all down on paper for Al to take it over during my upcoming time of incapacity. For the most part it will look after itself...since I have scheduled payments and auto-payments already set up for most everything, but just in case there is a glitch, he needs to know what needs to be paid and when.
My first Disability payment finally showed up in our account, but it was for an incomplete month, so I don't yet know how much "net" it will be each month. I was relieved to see that my calculations for income tax deduction for last year's disability period was pretty close so I don't owe a lot. :)
Aside from the financials, I am slowly working my way through all the closets and drawers to tidy up and declutter. If things are orderly then it will be easier for people to find things when needed. The last thing I need is to trying to figure out where I stashed the summer sandals in the sea of Rubbermaid bins in my basement while I lie in a hospital an hour away. :) The joke in our house has always been that I am "the only one who can find an f'ing thing". I need to pass the torch.
So I am busy making my lists, labelling boxes and bins, and spring cleaning. I am actually enjoying it -- if only I was feeling up to working on it every day. The one day on steroids as opposed to four is great in some ways, but not in others.
For one, the steroids kept all my aches and pains at bay. Now that I am on one day a week, all those pains are coming back. The arthritis in my neck, lower back, feet, and fingers is back. The inflammation of my right elbow is back. I am having headaches again. And then there is the EYE. My left eye is swollen and red. It is part of the dry eye issue, but during the 2 days that I feel the effects of the steroids, my eye pretty much clears up, only to return as the steroids wear off. It is really annoying!! Not to mention that I look like a freak show!! :) My husband deserves a medal...he sure didn't sign up for this!
Also, the 25 pounds that I put on during the high dose steroid treatment is not going away. In fact, I weighed myself this morning and have broken another record. Now it might have something to do with the yummy butter tarts I bought the other day at Harvest Barn. I have eaten 4 of the 6 in 2 days...but hey...there are few pleasures in my life right now. :)
Four days of steroids meant a good 3 or 4 days of energy and coherent thinking. Now I get one and a half. (Fridays and Saturdays.) The crash is much the same -- Sunday, Monday and sometimes Tuesday. Wednesdays I feel realtively normal, only to have the cycle begin again on Thursday.
All in all, this article is full of bitching and whining, but I have not lost sight of the fact that I am very fortunate. I cannot imagine what it would be like to be battling cancer while looking after others. I do not know how a mother of young children - or even teenagers for that matter -- could do it.
If you know someone who has a young family and one of the parents or a child is ill, please help them. Do their grocery shopping, or clean their house, or do their laundry for them, or drop by with a pre-made dinner. Don't wait for them to ask you (because they won't), just tell them you are doing it.
I am so fortunate to have the day to myself and to casually go about the household chores that need to be done. I have the luxury of resting whenever, and for as long as I need to, or want to. It is also really easy to convince Al to go out for dinner, or order in, if I did not feel like making anything for dinner. This could be so much harder than it is. :) For that, I am blessed.
I am the one who looks after the finances and the running of the household, so I am trying to put it all down on paper for Al to take it over during my upcoming time of incapacity. For the most part it will look after itself...since I have scheduled payments and auto-payments already set up for most everything, but just in case there is a glitch, he needs to know what needs to be paid and when.
My first Disability payment finally showed up in our account, but it was for an incomplete month, so I don't yet know how much "net" it will be each month. I was relieved to see that my calculations for income tax deduction for last year's disability period was pretty close so I don't owe a lot. :)
Aside from the financials, I am slowly working my way through all the closets and drawers to tidy up and declutter. If things are orderly then it will be easier for people to find things when needed. The last thing I need is to trying to figure out where I stashed the summer sandals in the sea of Rubbermaid bins in my basement while I lie in a hospital an hour away. :) The joke in our house has always been that I am "the only one who can find an f'ing thing". I need to pass the torch.
So I am busy making my lists, labelling boxes and bins, and spring cleaning. I am actually enjoying it -- if only I was feeling up to working on it every day. The one day on steroids as opposed to four is great in some ways, but not in others.
For one, the steroids kept all my aches and pains at bay. Now that I am on one day a week, all those pains are coming back. The arthritis in my neck, lower back, feet, and fingers is back. The inflammation of my right elbow is back. I am having headaches again. And then there is the EYE. My left eye is swollen and red. It is part of the dry eye issue, but during the 2 days that I feel the effects of the steroids, my eye pretty much clears up, only to return as the steroids wear off. It is really annoying!! Not to mention that I look like a freak show!! :) My husband deserves a medal...he sure didn't sign up for this!
Also, the 25 pounds that I put on during the high dose steroid treatment is not going away. In fact, I weighed myself this morning and have broken another record. Now it might have something to do with the yummy butter tarts I bought the other day at Harvest Barn. I have eaten 4 of the 6 in 2 days...but hey...there are few pleasures in my life right now. :)
Four days of steroids meant a good 3 or 4 days of energy and coherent thinking. Now I get one and a half. (Fridays and Saturdays.) The crash is much the same -- Sunday, Monday and sometimes Tuesday. Wednesdays I feel realtively normal, only to have the cycle begin again on Thursday.
All in all, this article is full of bitching and whining, but I have not lost sight of the fact that I am very fortunate. I cannot imagine what it would be like to be battling cancer while looking after others. I do not know how a mother of young children - or even teenagers for that matter -- could do it.
If you know someone who has a young family and one of the parents or a child is ill, please help them. Do their grocery shopping, or clean their house, or do their laundry for them, or drop by with a pre-made dinner. Don't wait for them to ask you (because they won't), just tell them you are doing it.
I am so fortunate to have the day to myself and to casually go about the household chores that need to be done. I have the luxury of resting whenever, and for as long as I need to, or want to. It is also really easy to convince Al to go out for dinner, or order in, if I did not feel like making anything for dinner. This could be so much harder than it is. :) For that, I am blessed.
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