So yes, I was admitted last Monday to start the evil treatment. The port was placed under total anesthesia at my request, and might I recommend that to anyone ever having to do that. It might be a little more incovenient for them, but what the hell do you want to remember ANY of that for?? Chemo bag #1 placed around 9 pm, but ran an extra 4 hours (28 hours total, but should only run 24) due to a bad pump. 2nd chemo is done by a push injection and those 3 were done Mon, Tues & Wed nights. So *hopefully* all done with that particular one completely. (there's a chance it could have to happen again, but let's not get there now)
So I am on bag #4 of the continuous chemo and that'll run til like 3/4 am. (nice timing for the changing of all this- it's kind of a ruckus in the middle of the night). No rest in the hospital!
I do, apparently, have the best room in the house- lots of light, big window, and a big room and no roommate, due to the possible infection situation of course. Showering is the hugest pain in the ass, even though they unhook me, it's like being under a watering can. Takes forever and I get cold.
Emotions run up and down each day, with worries about if this will work, if it becomes a transplant situation, and a lot about how people will treat me, and how I will feel about myself and my world once this moves along (hopefully in a success). It's so life altering, that my old life and ways of looking at my days are gone, and I want no part of them anymore. You would think I would be grateful to live or see my son grow up or even get more time, but I have none of those thoughts. Much of what I feel is wanting to escape my previous life and move on from everybody and everything that used to be.
But it's a long road ahead, and I'm sure there is time to work through all this somehow. I imagine there will be a therapist in my future!!
Friday, February 25, 2011
Thursday, February 17, 2011
Time marches on like a runaway train.
So today I was supposed to go into the hospital and start chemo. However, my mother-in-law, who was taking care of my son today and tomorrow, had an emergency appendectomy on Monday night. I took it as a sign that we should move this whole shindig to next Monday. I'm not real comfortable with the whole "weekend staff" set-up anyway. This should be better. However, the freaking-out has begun. As I type this, I am drugged (Clonazapam- for panic/anxiety), and I have a bad feeling I will be drugged the remainder of my time at home, up until Monday when I will probably need to be sedated and hauled off by some means. Seriously, you can't really understand this until you are faced with it.
I leave here totally intact (minus the peace of mind that has already been destroyed by all this), and when I come home 4-6 weeks later for a 2 week break, I will be someone else. Someone I don't want to be, who feels terrible, looks terrible, and I am guessing will be depressed. I'm sure I'm going to want to go back for more too... (4 more times). Long, evil road from hell.
Anyway, my food prep is almost complete. I am going to try and create some pumpkin and oat "treats" this weekend. Plus get my clothes together and clean the guest room up for my *special* visitor's arrival. Every day marches on with more preparation- the dining room table is full of everything I may want or need for the next month. Total pain in the ass.... =)
I leave here totally intact (minus the peace of mind that has already been destroyed by all this), and when I come home 4-6 weeks later for a 2 week break, I will be someone else. Someone I don't want to be, who feels terrible, looks terrible, and I am guessing will be depressed. I'm sure I'm going to want to go back for more too... (4 more times). Long, evil road from hell.
Anyway, my food prep is almost complete. I am going to try and create some pumpkin and oat "treats" this weekend. Plus get my clothes together and clean the guest room up for my *special* visitor's arrival. Every day marches on with more preparation- the dining room table is full of everything I may want or need for the next month. Total pain in the ass.... =)
Tuesday, February 8, 2011
More plans...
So this week, I feel somewhat in limbo, but I am still preparing for the big hospital event nonetheless, just in case that is the road I will travel. I am meeting with the doctor again tomorrow, and she is going to show me a hospital room. Sounds so funny, like I am planning a wedding and need to see the banquet room. It'll probably scare the hell out of me again...the normal (these days) ebb and flow of fear in my life.
My son's birthday party last Saturday was great- the event I have been trying to get to while they were trying to rush me into my jail cell. Everything went great- I felt great and did everything like normal. Better than normal, actually. Being that I ate very little "party food", I didn't get tired from all the sugar and heavy stuff as I have in the past. It was unusual! But I'm glad I made it through it all for him- he wouldn't understand us cancelling his party.
In my mode of "Be Prepared", I also got a wig last Friday. My son looks like a really cute little girl in it!! haha I couldn't exactly tell what my husband thought of it (he was smiling though)- but my new big "country singer" hairdo is pretty funny. More hair than I've ever had in my life!
Today I am preparing food. Ok- I'm this committed (psychotic?): I don't want to be subjected to the hospital's pudding /jello/ white bread/ msg soups type meals, as I believe they are highly detrimental to my condition, especially if my immune system is destroyed. All that sugar/ yeast, etc feeds anything left in my body (ie. fungus) to allow it to take over. Remember how many folks get fungal infections following chemo? I don't need anything to help that along. So literally, I am preparing all my own food. A HUGE undertaking, but I started today. I am making a bean soup today. The house smells nice! =)
While I love to cook, it is bittersweet having to do all this- makes me sad as the days march on. I also wonder how long it will take to recover from this terror in my mind....even when everything is done. Of course I would be grateful to be alive, but putting the pieces back of my life... I know I'll never be the same. Which makes me sad too.
Hey- the sun's out, gotta go catch some rays! (21 degrees out) LOL
My son's birthday party last Saturday was great- the event I have been trying to get to while they were trying to rush me into my jail cell. Everything went great- I felt great and did everything like normal. Better than normal, actually. Being that I ate very little "party food", I didn't get tired from all the sugar and heavy stuff as I have in the past. It was unusual! But I'm glad I made it through it all for him- he wouldn't understand us cancelling his party.
In my mode of "Be Prepared", I also got a wig last Friday. My son looks like a really cute little girl in it!! haha I couldn't exactly tell what my husband thought of it (he was smiling though)- but my new big "country singer" hairdo is pretty funny. More hair than I've ever had in my life!
Today I am preparing food. Ok- I'm this committed (psychotic?): I don't want to be subjected to the hospital's pudding /jello/ white bread/ msg soups type meals, as I believe they are highly detrimental to my condition, especially if my immune system is destroyed. All that sugar/ yeast, etc feeds anything left in my body (ie. fungus) to allow it to take over. Remember how many folks get fungal infections following chemo? I don't need anything to help that along. So literally, I am preparing all my own food. A HUGE undertaking, but I started today. I am making a bean soup today. The house smells nice! =)
While I love to cook, it is bittersweet having to do all this- makes me sad as the days march on. I also wonder how long it will take to recover from this terror in my mind....even when everything is done. Of course I would be grateful to be alive, but putting the pieces back of my life... I know I'll never be the same. Which makes me sad too.
Hey- the sun's out, gotta go catch some rays! (21 degrees out) LOL
Thursday, February 3, 2011
Overwhelmed
That's why I am creating this. I am finding it increasingly difficult to respond to every person that asks about what's happening "now"- it's hard to talk about and nearly impossible to find time for! It's not that I don't appreciate my family and friends and understand their concern- it's just different when it's all directed at me. I feel out of the loop, as everyone seems to be making up their own minds about what I should do, based on what they might do, based on the doctors having only 1 (extrememly bad) course of treatment for this, and the fact that I have a child I am supposed to think about, not to mention all the talking that is going on behind my back these days. I have become a lab rat.
This is what the doctor wants to do: put a hole in my chest to start- pump me full of 2 poisons for a full week, 24 hours/day, to ensure my entire immune system is destroyed, then wait to see if I develop infections (if so, treat with more poisons), for a total inpatient hospital stay of approx 4-6 weeks, if I don't die from it or have to stay longer due to infection. This is supposed to kill everything then let me start over and *hope* things start growing back normally, whatever that is. Following that, I am supposed to have 2? more weeks of poison to ensure that everything really is destroyed, cause we can't count on that 1st toxic dose to do the job. More weeks in the hospital.
I asked for any other possible options, and I have an appt shortly to discuss that- which of course the answer will be exactly the same. (no other options from the medical point of view)
The bone marrow biopsies held 12 days apart (Jan 17th & 28th) showed no change in the amount of "cancerous" cells. Holding steady... which doesn't mean much to me. I have been doing my own research on the subject and have discovered how they can mistake fungal infections for cancer (funny how chemo tends to lead to fungal infections...) but I am not sure there is "time" to be the guinea pig to test that theory.
I have no symptoms of this disease, which makes this hard to believe that anything is wrong. Makes it hard to offer myself up for potentially lethal injections.
For now, I am eating accordingly (organically as well) to reduce any possible fungus/yeast in my system (see knowthecause.com- Phase 1 diet), supplementing with natural anti-fungal vitamins, chorella, baking soda, raw veg juice...just about anything I know of or have found out about to make conditions in my body difficult for cancer cells, fungus & yeast to thrive. Maybe that's why there is no change in my statistics. Maybe not.
Either way, I am at a point of deciding the course. Doing what my family seems to want me to do, going along with the doctors, succumbing to my fears that I can't fix this on my own, and going against nature's course, or stepping out of the system and working toward healing without poisons. Seriously, neither way has any guarantees toward prolonging my life. Maybe my time truly is up, and it's a matter of convincing myself of that too.
So that's "The Latest".
This is what the doctor wants to do: put a hole in my chest to start- pump me full of 2 poisons for a full week, 24 hours/day, to ensure my entire immune system is destroyed, then wait to see if I develop infections (if so, treat with more poisons), for a total inpatient hospital stay of approx 4-6 weeks, if I don't die from it or have to stay longer due to infection. This is supposed to kill everything then let me start over and *hope* things start growing back normally, whatever that is. Following that, I am supposed to have 2? more weeks of poison to ensure that everything really is destroyed, cause we can't count on that 1st toxic dose to do the job. More weeks in the hospital.
I asked for any other possible options, and I have an appt shortly to discuss that- which of course the answer will be exactly the same. (no other options from the medical point of view)
The bone marrow biopsies held 12 days apart (Jan 17th & 28th) showed no change in the amount of "cancerous" cells. Holding steady... which doesn't mean much to me. I have been doing my own research on the subject and have discovered how they can mistake fungal infections for cancer (funny how chemo tends to lead to fungal infections...) but I am not sure there is "time" to be the guinea pig to test that theory.
I have no symptoms of this disease, which makes this hard to believe that anything is wrong. Makes it hard to offer myself up for potentially lethal injections.
For now, I am eating accordingly (organically as well) to reduce any possible fungus/yeast in my system (see knowthecause.com- Phase 1 diet), supplementing with natural anti-fungal vitamins, chorella, baking soda, raw veg juice...just about anything I know of or have found out about to make conditions in my body difficult for cancer cells, fungus & yeast to thrive. Maybe that's why there is no change in my statistics. Maybe not.
Either way, I am at a point of deciding the course. Doing what my family seems to want me to do, going along with the doctors, succumbing to my fears that I can't fix this on my own, and going against nature's course, or stepping out of the system and working toward healing without poisons. Seriously, neither way has any guarantees toward prolonging my life. Maybe my time truly is up, and it's a matter of convincing myself of that too.
So that's "The Latest".
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