At my last appointment my doctor ordered three more tests to be done. Two were for the shortness of breath and he said he wanted those done right away and he said we'd do another endoscopy to see if we can finally figure out what's been going on with my throat.
Well the least urgent of the tests was done yesterday. I have now had my third endoscopy since my transplant, so hopefully they will have found something conclusive this time. I think they finally found the right amount of sedation to use on me as well... I was pretty much out for the procedure, but not completely stupid after like last time. The worst part of the whole thing was how late in the day it was scheduled because I couldn't eat after midnight the night before... And anyone who knows me knows I love food.
My next test will be a CT Scan this Saturday at 7am. Not too excited about the time, but I'm likely the first appointment, so at least I should be in and out pretty quickly. This is one of the two tests my doctor ordered to try to figure out why I've been so short of breath.
The third and final test he wanted done right away was a pulmonary function test. Since I haven't heard anything about when this test was scheduled for yet, I called the clinic today to find out what was going on. The nurse tells me that the appointment is booked... for June 2. Somehow, I don't think waiting 6 months for a test when I can't walk up a flight of stairs without totally losing my breath is acceptable. Anyway, I have left a message for my clinic nurse to try to straighten that out. Hopefully I'll be able to get that done before my clinic appointment on Tuesday.
Thursday, 24 January 2013
Tuesday, 15 January 2013
Clinic Update
Well, it's been four weeks since my last doctor's appointment, so it was a long and eventful day at the clinic today. I showed up an hour early for my appointment hoping to get in a little early... No dice. The doc was running about 2 hours behind. Luckily, because it has been so long since my last appointment and I had a long list of things I wanted to discuss with him, he did take his time with me and we went over a lot of things.
My biggest issue lately has been shortness of breath. I feel like if I walk 10 feet I am going to pass out. Since this is new and has been getting worse over the last couple of weeks my doctor is really concerned about it and I will have to have some tests run over the next couple of weeks to see if they can find out why this his happening. Until then, I guess I just need to try to take it easy and not push myself too hard.
I've also had a sore mouth and throat lately. This has made eating extremely painful. The roof of my mouth has ulcers on it which my doctor believes are from a virus, so hopefully the prescription he gave me will take care of that. My throat has been consistently sore since the transplant, but is now worse than ever. This means yet another test. I will have to see the GI doctor for the 3rd time since the transplant to see if they can finally figure out what is causing the pain.
And finally, I have had some severe joint pain lately. No idea what could be causing this. I guess I just have to suck it up for now and hope it doesn't get any worse. If it does, we'll deal with it then.
So I guess, medically speaking, I'm a mess right now and things aren't going as well as we'd hoped... But I'm taking one day at a time and so far nothing has been more than I can manage.
My biggest issue lately has been shortness of breath. I feel like if I walk 10 feet I am going to pass out. Since this is new and has been getting worse over the last couple of weeks my doctor is really concerned about it and I will have to have some tests run over the next couple of weeks to see if they can find out why this his happening. Until then, I guess I just need to try to take it easy and not push myself too hard.
I've also had a sore mouth and throat lately. This has made eating extremely painful. The roof of my mouth has ulcers on it which my doctor believes are from a virus, so hopefully the prescription he gave me will take care of that. My throat has been consistently sore since the transplant, but is now worse than ever. This means yet another test. I will have to see the GI doctor for the 3rd time since the transplant to see if they can finally figure out what is causing the pain.
And finally, I have had some severe joint pain lately. No idea what could be causing this. I guess I just have to suck it up for now and hope it doesn't get any worse. If it does, we'll deal with it then.
So I guess, medically speaking, I'm a mess right now and things aren't going as well as we'd hoped... But I'm taking one day at a time and so far nothing has been more than I can manage.
Sunday, 6 January 2013
Things Not to Say to a Cancer Patient...
I try to be gracious and understanding to everyone because I know cancer is an uncomfortable topic for most people and it can be hard to know what to say... but I'd also like to get a few things off my chest.
In response to some of the things I have heard over the last year:
1. I know someone who had that cancer and they're fine (or they died).
Great. Did you know that cancer affects everyone differently? Please do not lump me in with every cancer patient you've ever heard of. I am not them. My cancer is not theirs.
2. There's a cure for cancer - they just won't give it out because the pharmaceutical companies make too much money off of treatment.
Gee thanks. While I am hanging onto my life by a thread, you think that there's some magical cure that's being held over my head that I can't have. Let's see how you would feel if I said that to you in the same situation.
3. Treating cancer makes it worse than leaving it alone.
Are you an oncologist? If not, please keep this opinion to yourself. This relates back to #1. Just because you know someone who had treatment, surgery, etc. and their cancer got worse, came back, etc. does not mean mine will. I have a team of specialists who know and understand what my options are and I would prefer to make my decisions with them. Thanks.
4. Did your transplant work?
Yes it worked. If it did not, I would be dead. That does not mean that I am all better now. I have not had a whole host of complications and may continue to have complications for the rest of my life and the cancer could always come back again.
5. But you don't have cancer anymore.
Not exactly. I am in remission. I have had what seems (so far) to be a successful round of treatments. This does not mean that I will not be looking over my shoulder for the next year, 2 years, 5 years... It does not mean that I am 'all better now, and it doesn't matter how long the doctors give as a guideline. Once you have had cancer you will be looking over your shoulder for the rest of your life.
Please understand that I am not trying to offend anyone by this, only to make a point that you should always consider what you are saying and who your audience is before it is said. I have been so overwhelmed by the love and support I have received from friends, family and total strangers over the last 11 months and I couldn't have made it this far without knowing how many people care. Thank you all so much.
In response to some of the things I have heard over the last year:
1. I know someone who had that cancer and they're fine (or they died).
Great. Did you know that cancer affects everyone differently? Please do not lump me in with every cancer patient you've ever heard of. I am not them. My cancer is not theirs.
2. There's a cure for cancer - they just won't give it out because the pharmaceutical companies make too much money off of treatment.
Gee thanks. While I am hanging onto my life by a thread, you think that there's some magical cure that's being held over my head that I can't have. Let's see how you would feel if I said that to you in the same situation.
3. Treating cancer makes it worse than leaving it alone.
Are you an oncologist? If not, please keep this opinion to yourself. This relates back to #1. Just because you know someone who had treatment, surgery, etc. and their cancer got worse, came back, etc. does not mean mine will. I have a team of specialists who know and understand what my options are and I would prefer to make my decisions with them. Thanks.
4. Did your transplant work?
Yes it worked. If it did not, I would be dead. That does not mean that I am all better now. I have not had a whole host of complications and may continue to have complications for the rest of my life and the cancer could always come back again.
5. But you don't have cancer anymore.
Not exactly. I am in remission. I have had what seems (so far) to be a successful round of treatments. This does not mean that I will not be looking over my shoulder for the next year, 2 years, 5 years... It does not mean that I am 'all better now, and it doesn't matter how long the doctors give as a guideline. Once you have had cancer you will be looking over your shoulder for the rest of your life.
Please understand that I am not trying to offend anyone by this, only to make a point that you should always consider what you are saying and who your audience is before it is said. I have been so overwhelmed by the love and support I have received from friends, family and total strangers over the last 11 months and I couldn't have made it this far without knowing how many people care. Thank you all so much.
Wednesday, 2 January 2013
Happy New Year!
Ok, I know it's been a while, but fortunately that's been because there hasn't been a whole lot to update lately. I'm beyond the 100 day critical period and while I'm not out of the woods yet, and still having complications there has not been to much excitement to report.
Since I last wrote, I had been having stomach problems and they were concerned about GVHD again. Well the biopsy didn't show any GVHD which means that the doctors have no clue why I was randomly vomiting, but increasing my Prednisone again has stopped the problem. It has since been decreased a little, but they're weaning me off of it much more slowly this time. I'm not happy about the length of time they expect me to continue to have to take the steroids because of the unpleasant side effects, so hopefully the new drug they're trying me on will help get me off the Prednisone sooner.
I have also been having a lot of severe headaches lately. Not sure why and waiting for an appointment with a neurologist, but that will be a long time coming. Luckily, I have nowhere I have to be, so if I'm stuck in bed sick with a headache all day I have a four legged snuggle buddy to keep me company.
The only only other issue I've been dealing with is my inflamed liver. I know... I should really quit all my drinking... (anyone who knows how may drinks I've had since my transplant knows that's a big joke). Again, no one has a clue why my liver is inflamed, but they've ruled out anything serious and say it's most likely either a virus or one of the (many) medications I'm on... Just one more reason that I want to get off the steroids sooner than later. Although my doctor doesn't seem too concerned about my liver it's extremely uncomfortable and feels like something is pushing it's way through my ribs every evening.
That's it for the health issues. Other than that, I have been staying in as much as possible trying to avoid all of the sick people in the outside world. I enjoyed a very busy but fun Christmas and New Years with friends and family and hope you all out there had a wonderful holiday season as well. I plan to be online a bit more now that the craziness of the holidays is all over... Until next time...
Since I last wrote, I had been having stomach problems and they were concerned about GVHD again. Well the biopsy didn't show any GVHD which means that the doctors have no clue why I was randomly vomiting, but increasing my Prednisone again has stopped the problem. It has since been decreased a little, but they're weaning me off of it much more slowly this time. I'm not happy about the length of time they expect me to continue to have to take the steroids because of the unpleasant side effects, so hopefully the new drug they're trying me on will help get me off the Prednisone sooner.
I have also been having a lot of severe headaches lately. Not sure why and waiting for an appointment with a neurologist, but that will be a long time coming. Luckily, I have nowhere I have to be, so if I'm stuck in bed sick with a headache all day I have a four legged snuggle buddy to keep me company.
The only only other issue I've been dealing with is my inflamed liver. I know... I should really quit all my drinking... (anyone who knows how may drinks I've had since my transplant knows that's a big joke). Again, no one has a clue why my liver is inflamed, but they've ruled out anything serious and say it's most likely either a virus or one of the (many) medications I'm on... Just one more reason that I want to get off the steroids sooner than later. Although my doctor doesn't seem too concerned about my liver it's extremely uncomfortable and feels like something is pushing it's way through my ribs every evening.
That's it for the health issues. Other than that, I have been staying in as much as possible trying to avoid all of the sick people in the outside world. I enjoyed a very busy but fun Christmas and New Years with friends and family and hope you all out there had a wonderful holiday season as well. I plan to be online a bit more now that the craziness of the holidays is all over... Until next time...
Friday, 26 October 2012
Days 98-100
Well, I made it to day 100, but not without difficulty.
Tuesday, I had my regular clinic appointment and they kept me in the hospital for 2 days.
Lately, I have been having more bad days than good. Most of the bad days I have just been tired and overall just not feeling well, but I have had a few days where I have been really sick and vomiting. Tuesday was one of these days. When my doctor saw me on Tuesday and I had been sick to my stomach all morning he decided that he needed to run some tests. They started with an ECG and a chest x-ray which were both okay. Then I spent the rest of the day waiting around in the cancer clinic for there to be a room available upstairs for me.
The next morning they sent me to endoscopy to take a look in my stomach and do some biopsies to see if they can find out why I've been getting sick. I've had this procedure before and while they said they sedated me last time, I was fully aware of what was going on and extremely uncomfortable. I told the doctor this and he said he'd be generous with the sedatives this time. Well he wasn't lying. I have no recollection of the next two hours of my life, but I've been told I was quite entertaining.
Kendall sweet talked the doctor into letting me out of the hospital the next day since I had gone two days without getting sick and was eating and drinking well, so I am back home now. They hope to have my biopsy results by Tuesday when I go back to clinic (but I'm not holding my breath), however the theory is that I STILL have graft vs host disease. They expected it should be gone and had been weaning me off the Prednisone, but as the dose got lower the symptoms were getting worse... So this means that I am back on a high dose of Prednisone and will most likely have to stay on it for at least another six months... Along with the hunchback, puffiness and extra chins it has given me. But I'm not dead yet!
Tuesday, I had my regular clinic appointment and they kept me in the hospital for 2 days.
Lately, I have been having more bad days than good. Most of the bad days I have just been tired and overall just not feeling well, but I have had a few days where I have been really sick and vomiting. Tuesday was one of these days. When my doctor saw me on Tuesday and I had been sick to my stomach all morning he decided that he needed to run some tests. They started with an ECG and a chest x-ray which were both okay. Then I spent the rest of the day waiting around in the cancer clinic for there to be a room available upstairs for me.
The next morning they sent me to endoscopy to take a look in my stomach and do some biopsies to see if they can find out why I've been getting sick. I've had this procedure before and while they said they sedated me last time, I was fully aware of what was going on and extremely uncomfortable. I told the doctor this and he said he'd be generous with the sedatives this time. Well he wasn't lying. I have no recollection of the next two hours of my life, but I've been told I was quite entertaining.
Kendall sweet talked the doctor into letting me out of the hospital the next day since I had gone two days without getting sick and was eating and drinking well, so I am back home now. They hope to have my biopsy results by Tuesday when I go back to clinic (but I'm not holding my breath), however the theory is that I STILL have graft vs host disease. They expected it should be gone and had been weaning me off the Prednisone, but as the dose got lower the symptoms were getting worse... So this means that I am back on a high dose of Prednisone and will most likely have to stay on it for at least another six months... Along with the hunchback, puffiness and extra chins it has given me. But I'm not dead yet!
Light the Night
I participated in the Light the Night walk last Saturday accompanied by my family and it was a great night! Thanks to the generous donations we received our team raised over $6000 for the Leukemia and Lymphoma Society of Canada and were the 6th highest fundraising team in London!
Thank you so much to everyone who sponsored me. If you still wanted to contribute, the online site is still open. You can click HERE to go to my personal page to sponsor me for the walk.
Thank you so much to everyone who sponsored me. If you still wanted to contribute, the online site is still open. You can click HERE to go to my personal page to sponsor me for the walk.
Thursday, 18 October 2012
ONLY 2 DAYS LEFT!!!
Please help by sponsoring me in the Light the Night Walk for the Leukemia & Lymphoma Society of Canada.
Click here to sponsor me in my walk. Every little bit helps.
Thank you.
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