I have found a wonderful mental health, talky-talky therapist here in Seattle. Her name is Janet Abrams and she is wonderful. I have seen therapists off and on since I was a little girl, and I feel so blessed to have found her. When my mom first had her stroke, I went to see my first specialized therapist for Grief and he was mind-blowingly perfect for me. I learned a lot. The main lesson, and I know this is a deviated (steroids and all the energy and mind-altering deviations they give me) but the main lesson he taught me was that when I was with my mom, it wasn't about me. It wasn't about me needing to and trying to convey, fix, or repair anything. That work could be done in therapy, but what I needed to do was just be present with her and in the present. You know what I am saying? Am I saying this correctly. My mom deserved to have her kids usher her into the otherworld, and to allow her, her sacred rites of passage, of passing. Not me crying over all the hurtful stuff, things unsaid, but just loving. Being in the Love.
So, this grief therapists is sortof like Janet in that they specialize. I like specialists is what I am discovering through all this. My Grandad told me once, get really good at one thing, Heather.
I saw Janet a few weeks ago, and I wasn't on steroids. Today I walked in there, and it was very centering, healing, and opening to be me to see ME. She validated me. She understood how traumatic of a week I just had. Not that she has gone through it, but she has made Cancer, her lifes work. One thing that is really hard going through this is that no one truly "gets" what or where I am at. Or what I have/will/had had to go through. D surely doesn't get it. Which I get. I learned from my mom's passing, that until you lose a parent, it is very hard to be in a place of understanding. But of coarse, there is just being a simple caring soul who is there for someone.
And I get that. Lots of you, lots of the girls on the Triple Negative Breast Cancer Foundation site, friends, family, and my Keller Williams family are there for me. All asking me how I am doing. But unless you've gone through this you don't get it. So, I just cry. There is so much loneliness at a time when life is so full and feeling all that life is about. Such a contradictory journey.
Janet helped lead me to an understanding that I am different on the med's. I am pretty manic really. That was this morning a few hours after I took my med's. Now I am exhausted, barely able to keep my eyes open, on the coach, and will take them again tonight at 9.
At the base of all the "manic-ness" and all the anger, and all the crap, there sits sadness. Just blue, deep, dark, ocean blue with the foggiest, unknowns following it. Hovering over the sea with the heaviest rain falling. Just sad. There are a lot of tears to come. To heal. To come full circle again. I only have 16 radiation appointments left. And then, I can enter this place. Safely. The unknowns of life and my imminent time of departing this world can once again become part of a future time that won't be on my shoulder, cawing and scratching at my every move.
Tuesday, March 31, 2009
Monday, March 30, 2009
Sunday, March 29, 2009
Well, I'm leaving the hospital in a few minutes
I'm leaving, and I am still on a high dose of Predisone. Not the 120 MG every 6 hours (I thought it was 8, but it was every 6) down to 20 mg twice a day. I have symptoms slowly trickling back. But I've noticed they start to get worse a few hours before my next dose of predisone and then they get a bit better. Nothing alarming, just I am noticing.
So they are:
tightness in left to center of chest
pain level 1-2 with deep inhalation, not shallow breaths.
shortness in breath while standing and if I also walk ( I find myself kind of panting when I talk, only while standing, not sitting)
And one long continuous pain in the butt, hot like a las vegas sand between the toes, HOT FLASH!! Phewie!!!!!! Get me some water. Cold water. Hahaha
I am over the gross food here, and ready to go home and eat Quinoa and greens.
A few funny things. The hand soap in the bathrooms, while I was doing chemo is the same disgusting stuff in the rooms here. So, I don't wash my hands with that and use the Purell, ( i never used that during chemo). Ickk..just a whiff of that stuff makes me gag! I was desperate and lost my mind last night and wanted to wash my tank top. I get really grossed out and super clean freaky while I stay in the hospital. Germs everywhere. So, I washed my tank top with that disgusting soap, and now I don't have a shirt to wear under my sweat shirt home. Luckily, I washed my hair with a bar of soap, and I haven't gotten a whiff of something that pleasant in a long while. So, I re-washed my tank and have it blowing dry with my hot-flash helping friend THE FAN. Its almost dry.
I am so ready to go home. I am bored. So, who's right? Do I not exercise, or do I? Does anyone really know? NO, they don't. Well....here I go. I am going to take it slow, as I do get short of breath again pretty darn quick. Maybe I'll just have a big summer of gardening. And taking walks. And start running, in August?
So they are:
tightness in left to center of chest
pain level 1-2 with deep inhalation, not shallow breaths.
shortness in breath while standing and if I also walk ( I find myself kind of panting when I talk, only while standing, not sitting)
And one long continuous pain in the butt, hot like a las vegas sand between the toes, HOT FLASH!! Phewie!!!!!! Get me some water. Cold water. Hahaha
I am over the gross food here, and ready to go home and eat Quinoa and greens.
A few funny things. The hand soap in the bathrooms, while I was doing chemo is the same disgusting stuff in the rooms here. So, I don't wash my hands with that and use the Purell, ( i never used that during chemo). Ickk..just a whiff of that stuff makes me gag! I was desperate and lost my mind last night and wanted to wash my tank top. I get really grossed out and super clean freaky while I stay in the hospital. Germs everywhere. So, I washed my tank top with that disgusting soap, and now I don't have a shirt to wear under my sweat shirt home. Luckily, I washed my hair with a bar of soap, and I haven't gotten a whiff of something that pleasant in a long while. So, I re-washed my tank and have it blowing dry with my hot-flash helping friend THE FAN. Its almost dry.
I am so ready to go home. I am bored. So, who's right? Do I not exercise, or do I? Does anyone really know? NO, they don't. Well....here I go. I am going to take it slow, as I do get short of breath again pretty darn quick. Maybe I'll just have a big summer of gardening. And taking walks. And start running, in August?
Saturday, March 28, 2009
white, grey, or black
In a world where there are definitive ways of acting, speaking, spelling, being, thinking, ect., ect.. there are basic ways and answers. Customs. There is always an answer. And it is my job to find the answer. There is something not right with my body, and the fact that the on-call Cardiologist and my Oncologist have totally differing plans of action, and reasons of why and what has/is/ and possibly will happen to me are totally, couldn't be the farthest from one another.
If I was not born a fighter, a seeker, I might want to crumple up in a pool on the beach somewhere, or climb into a cave. But what happens to me is my spirit stands really tall, and I want to scream like a really loud lumber jack that I am not going to fall down to this disease, I am not going to fall down to all these side effects. Before cancer I was an extremely healthy young woman and I am going to go back to that standard of health. I will not take a med for an entire year that they have absolutely no idea why it works, but that it does, and cross our fingers that does the trick. And I am not going to take a med for that long that they do not know why I have this pericarditis, pleural effusion, inflammation, whatever they want to call it.
I want to agree with my Onc. but there are parts of what the cardio said resonates as well.
What I do know, is that I am going in to see my Onc armed with questions on Thursday. I want to see other specialists, I want them to see me, and read my histories, and all together we can figure this out together. Not anyone of them is a God, and I cannot get upset that they are trying in the specialty fields to figure this out, its all a puzzle. I am just not going to sit around and get better, and watch my ankles and lower body swell again, and not have this fixed. I want to and deserve to go back to my resonate healthy brilliance. That is right. So, I am not going on that med blindly. If I do go on it, it will be because that is the obvious thing to do.
Folks, remember this. It is our responsibility to do the right thing for ourselves. No matter how sick we are, no matter how young we are, no matter what. Our bodies are exactly that. Our's. And noone knows our bodies better than ourselves. At what point do we put a blind fold over our eyes, and trust someone to walk us across a busy Interstate freeway? We never would. So why is it, that in medicine we feel the need to do just this. To put our hands and our lives in professionals doctors hands and stop making decisions. GGGRRRRR.....I am pissed. I am pissed and so sick of this stuff. Its all encompasing. It vibrates into every action in my life right now. I am sick of hearing other people that are sick not stand up for themselves and want to blame doc's for trying. I am sick of people not calling their fear what it is. It is a basic fear of not wanting to die. Or in my simple case, having heart problems in the years to come. But, its my job, mine alone, to seek out and find MY ANSWERS with the help of my doctors. Bless all of them. They are just trying. As I am.
If I was not born a fighter, a seeker, I might want to crumple up in a pool on the beach somewhere, or climb into a cave. But what happens to me is my spirit stands really tall, and I want to scream like a really loud lumber jack that I am not going to fall down to this disease, I am not going to fall down to all these side effects. Before cancer I was an extremely healthy young woman and I am going to go back to that standard of health. I will not take a med for an entire year that they have absolutely no idea why it works, but that it does, and cross our fingers that does the trick. And I am not going to take a med for that long that they do not know why I have this pericarditis, pleural effusion, inflammation, whatever they want to call it.
I want to agree with my Onc. but there are parts of what the cardio said resonates as well.
What I do know, is that I am going in to see my Onc armed with questions on Thursday. I want to see other specialists, I want them to see me, and read my histories, and all together we can figure this out together. Not anyone of them is a God, and I cannot get upset that they are trying in the specialty fields to figure this out, its all a puzzle. I am just not going to sit around and get better, and watch my ankles and lower body swell again, and not have this fixed. I want to and deserve to go back to my resonate healthy brilliance. That is right. So, I am not going on that med blindly. If I do go on it, it will be because that is the obvious thing to do.
Folks, remember this. It is our responsibility to do the right thing for ourselves. No matter how sick we are, no matter how young we are, no matter what. Our bodies are exactly that. Our's. And noone knows our bodies better than ourselves. At what point do we put a blind fold over our eyes, and trust someone to walk us across a busy Interstate freeway? We never would. So why is it, that in medicine we feel the need to do just this. To put our hands and our lives in professionals doctors hands and stop making decisions. GGGRRRRR.....I am pissed. I am pissed and so sick of this stuff. Its all encompasing. It vibrates into every action in my life right now. I am sick of hearing other people that are sick not stand up for themselves and want to blame doc's for trying. I am sick of people not calling their fear what it is. It is a basic fear of not wanting to die. Or in my simple case, having heart problems in the years to come. But, its my job, mine alone, to seek out and find MY ANSWERS with the help of my doctors. Bless all of them. They are just trying. As I am.
Interesting...
Well, the Cardiologists thats on call, Dr. Olsen (he's partners with my cardio's) said that they are under the belief that this reoccurence is not caused by exercise and that it would have happened no matter what. That I should and can start exercising when I feel up to it! I don't need to slow down.
The thing is is that they don't know what's caused this reoccurence, but it happens. And honestly I've been having symptoms of pre-occurence for a while. Ankles swelling (he doesn't know regarding the heart how much this has to do with it, but I am not a swollen person, and I think it does correlate), when I lay on my sides I can't have D put his arm around me as it causes extra pressure, I've been short of breath kind of easy when I go up stairs, ect. So, what he has suggested is me going on a drug called Colchicine for a year.
Okay, so he doesn't know what is causing this, he doesn't know how the medicine works (its used for Gout) but it works, so he wants to put me on it, and for a year?? NO THANK YOU. I will see my Cardio, both of them, and then maybe another and then, if they all say it, then I will. I asked if he had a daughter and asked when his answer was yes, if he'd put her on it and he said yes, because I've had a reoccerence.
I am hesitant to go on anything for a long period of time. Like he said, any medicine is a poison of a type. Mmmmm....
Its funny, how when you get sick, each specialist sees and thinks of things in their unique form of medicine, and they all can give you different answers. I joked, is there a lymphologist that can tell me about my swelling? That is the most annoying part of this. I've been swollen for a long time. Each night taking off my socks and pants I have large and deep divits in my skin from the swelling. Its not normal. I need to start doing homework and seeing other specialist at this point! Any Seattlites know of some kick ass cardio's? Lymphologists?
The thing is is that they don't know what's caused this reoccurence, but it happens. And honestly I've been having symptoms of pre-occurence for a while. Ankles swelling (he doesn't know regarding the heart how much this has to do with it, but I am not a swollen person, and I think it does correlate), when I lay on my sides I can't have D put his arm around me as it causes extra pressure, I've been short of breath kind of easy when I go up stairs, ect. So, what he has suggested is me going on a drug called Colchicine for a year.
Okay, so he doesn't know what is causing this, he doesn't know how the medicine works (its used for Gout) but it works, so he wants to put me on it, and for a year?? NO THANK YOU. I will see my Cardio, both of them, and then maybe another and then, if they all say it, then I will. I asked if he had a daughter and asked when his answer was yes, if he'd put her on it and he said yes, because I've had a reoccerence.
I am hesitant to go on anything for a long period of time. Like he said, any medicine is a poison of a type. Mmmmm....
Its funny, how when you get sick, each specialist sees and thinks of things in their unique form of medicine, and they all can give you different answers. I joked, is there a lymphologist that can tell me about my swelling? That is the most annoying part of this. I've been swollen for a long time. Each night taking off my socks and pants I have large and deep divits in my skin from the swelling. Its not normal. I need to start doing homework and seeing other specialist at this point! Any Seattlites know of some kick ass cardio's? Lymphologists?
2nd stay in hospital...
Click on the picture and then it will pop up big, so you can read my captions..
Teeth gritting breathing
I woke up Friday morning at 1:30 from a bad dream. And realized I couldn't breathe and that I was in scary pain. I tried to lay there for an hour and the pain only got worse and worse. I will back up that Thursday I popped my head into my Onc's office without notice right after my radiation appointment to tell him something terrible was wrong with me and I didn't want to wait until Friday to get the echho, like I had set up with my Cardio over the phone on Wednesday. I got a chest X-ray, and eccho cardio gram, and a CT scan of just the chest that day, (yeah, I din't have to drink the contrast this time because the didn't need to see my stomach guts, just my chest) and all these tests just showed a small to moderate level of water in the linings around lungs and heart. Nothing like last time and nothing to be causing me to feel with such severe pain.
Well I woke up D at 2:30 finally and said through gritting teeth and very very shallow breath I may need him to bring me to the emergency room. I stood up and walked out to try to watch TV, I was in severe pain, much much worse than last time. So, I remembered in the back of my head My Onc. saying that I can call him at home anytime of day or night, and so I did. For the first time, if this gives you any clue of how much pain and fear I was in. My heart hurt. It felt for days, but tonight 25% worse that my heart had a charlie horse in it. I was in so much pain that I couldn't be freaked out, but I was scared and I knew this when my Onc answered the phone.
In his groggy its 2:40ish voice, Hello. I said this is Heather Bakstad. And he said, hello kiddo. This made me start to cry. I said, I am in so much pain. I started to get tears but it hurt worse to cry so I stopped. I said something is terribly wrong. I through gritting teach and shallow talk and breath said, Doc I can't breath. I am in so much pain. What do I do?
He called the ER ahead, and D and on got dressed to go. I couldn't even bend over to put on my shoes as the pain in my chest was just exploding.
We got to the ER at 3 and did the run around with people that knew nothing of all the things that I've gone through. Luckily My Onc called ahead and spoke with the ER doc that was going to be dealing with me. We waited and waited, I did another CT scan but an angio one to look for clots. They had to give me less IV contrast because because I had just had one the day before. D left afterwards, he had guys showing up at your house to do some work and he needed to be there. And frankly, I was exhausted, he was exhausted, and I knew at this point I was getting admitted. And lord knows how long that would take.
So, he left I feel in and out of sleep. I started sleeping thanks to the pain med they gave me, Delotted. The first dose took the edge off but not the pain. So on an empty stomach I had another dose around 8. The problem was was that I do not do good on pain med's allergic to most. This one works and I needed it as teh pain was going up to between 7-8. 6 is tolerable. I called my onc at a 10.
So, I started puking and puking for hours. I puked and got a headache until 3 in the afternoon. Luckily the steroids started doing the work, or was it the delotted taking away the pain, not sure. But the pain in my chest is gone and I just spent the rest of the day healing from the pain meds. Ick.
The strange thing that happened is just before we left to come to the ER I took 3 advil, as this is what my cardio wanted me to do the past few days. Which never took even the edge off of the pain (down to an 8) I was experiencing. But this time, maybe because I was in such a new level of pain, it did. My the first hour past being in the ER, I was able to stop the teeth breathing and the shallow talk. I still couldn't take in normal breaths, but not scary, am I going to die breaths.
So more good news, now for sure I've done every test known to man, and I have no blood clots.
The cuplrit was the excercise.
Its been months, and my Onc an my Cariod's said it was okay to start my excersice regime. A few weeks ago I started walking a few miles, then I started with ittzy bitzy 5 lb weights lifting. Never making myself sore, just saying hello to the muscles again. And so, like the 3 of us agreed on, I could start running slowly. So I did. AND IM PRETTY INTUNE WITH MY BODY. It felt great, I stopped when I got out of breath, just like before cancer. You got to work yourself up into being able to exercise, it doesn't feel good to anyone when getting started.
So, I felt great, during, and afterwards. TUesday night came with a venegance, and its only gotten worse. Well, so if there isn't water in my linings that is causing this pain, and also, why this time is it hurting so much worse?
Its because of the lack of water to cushion, and my exercising made those organs, and linings, and such rub against one another and caused extreme inflammation. Because the initial diagnosis inflammation had not gone away, it tricked Me, it tricked My Onc, and it tricked my Cardio's. : (
SO, I am in the hosptial again. WIll leave Sunday monring if everything goes good. I am getting mega doses of predisone again, 140 mg every 8 hours. I had to take a sleeping pill and I got to sleep at least 5 hours last night.
Well I woke up D at 2:30 finally and said through gritting teeth and very very shallow breath I may need him to bring me to the emergency room. I stood up and walked out to try to watch TV, I was in severe pain, much much worse than last time. So, I remembered in the back of my head My Onc. saying that I can call him at home anytime of day or night, and so I did. For the first time, if this gives you any clue of how much pain and fear I was in. My heart hurt. It felt for days, but tonight 25% worse that my heart had a charlie horse in it. I was in so much pain that I couldn't be freaked out, but I was scared and I knew this when my Onc answered the phone.
In his groggy its 2:40ish voice, Hello. I said this is Heather Bakstad. And he said, hello kiddo. This made me start to cry. I said, I am in so much pain. I started to get tears but it hurt worse to cry so I stopped. I said something is terribly wrong. I through gritting teach and shallow talk and breath said, Doc I can't breath. I am in so much pain. What do I do?
He called the ER ahead, and D and on got dressed to go. I couldn't even bend over to put on my shoes as the pain in my chest was just exploding.
We got to the ER at 3 and did the run around with people that knew nothing of all the things that I've gone through. Luckily My Onc called ahead and spoke with the ER doc that was going to be dealing with me. We waited and waited, I did another CT scan but an angio one to look for clots. They had to give me less IV contrast because because I had just had one the day before. D left afterwards, he had guys showing up at your house to do some work and he needed to be there. And frankly, I was exhausted, he was exhausted, and I knew at this point I was getting admitted. And lord knows how long that would take.
So, he left I feel in and out of sleep. I started sleeping thanks to the pain med they gave me, Delotted. The first dose took the edge off but not the pain. So on an empty stomach I had another dose around 8. The problem was was that I do not do good on pain med's allergic to most. This one works and I needed it as teh pain was going up to between 7-8. 6 is tolerable. I called my onc at a 10.
So, I started puking and puking for hours. I puked and got a headache until 3 in the afternoon. Luckily the steroids started doing the work, or was it the delotted taking away the pain, not sure. But the pain in my chest is gone and I just spent the rest of the day healing from the pain meds. Ick.
The strange thing that happened is just before we left to come to the ER I took 3 advil, as this is what my cardio wanted me to do the past few days. Which never took even the edge off of the pain (down to an 8) I was experiencing. But this time, maybe because I was in such a new level of pain, it did. My the first hour past being in the ER, I was able to stop the teeth breathing and the shallow talk. I still couldn't take in normal breaths, but not scary, am I going to die breaths.
So more good news, now for sure I've done every test known to man, and I have no blood clots.
The cuplrit was the excercise.
Its been months, and my Onc an my Cariod's said it was okay to start my excersice regime. A few weeks ago I started walking a few miles, then I started with ittzy bitzy 5 lb weights lifting. Never making myself sore, just saying hello to the muscles again. And so, like the 3 of us agreed on, I could start running slowly. So I did. AND IM PRETTY INTUNE WITH MY BODY. It felt great, I stopped when I got out of breath, just like before cancer. You got to work yourself up into being able to exercise, it doesn't feel good to anyone when getting started.
So, I felt great, during, and afterwards. TUesday night came with a venegance, and its only gotten worse. Well, so if there isn't water in my linings that is causing this pain, and also, why this time is it hurting so much worse?
Its because of the lack of water to cushion, and my exercising made those organs, and linings, and such rub against one another and caused extreme inflammation. Because the initial diagnosis inflammation had not gone away, it tricked Me, it tricked My Onc, and it tricked my Cardio's. : (
SO, I am in the hosptial again. WIll leave Sunday monring if everything goes good. I am getting mega doses of predisone again, 140 mg every 8 hours. I had to take a sleeping pill and I got to sleep at least 5 hours last night.
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