Today was Tim's oncology appt. He goes every three months and we pushed this off just a bit as he was due when we went to Disney. We saw the original doctor that he started with there. We've seen him a few times to say hello but have not had an appt. with him in 3 years since he last did a bone marrow biopsy on Tim just as that pilot landed a plane in the Hudson River. Note: they were trying to get him to land in a small airport right near the doc's office where we were but he couldn't make it. Anyhoo, I warned Tim to take any negative comments with a grain of salt from this doc. Don't get me wrong, I LIKE this doc a lot
but he said some very grim things to us a few years back and he was wrong about several of them. Kinda sucks when you live through the grief of dealing with that for nothing. So he comes in, we exchange pleasantries. I said, "Did you miss me?!" He said, "Who the hell are you?!" He's a jokester. Then he starts to say that the really strange thing about Tim's labwork............PAUSE- I am already thinking "HOLY MERDE, here he goes already. STRANGE, what's strange? I read the reports. It looks great." So he says that his immunofixation and SPEP show this slight band BUT
the immunoglobulins are trending up. I'm thinking "WHAT, whaddaya mean they're trending up?" Then his head nurse says, "The uninvolved immunoglobulins are going up!" When we finally got to where he was going
with this, what he meant was his IGA and IGM are in normal range, not below normal like they used to be. The IGG's are the ones that were WAY high at dx, but the others were low because the cancer affects the bone marrow's ability to make healthy cells and is too busy making the bad guys. They are all in normal range now. Whew. He scared the heck out of me. The doc explained that this meant his immune system was working really well and that even though his m-spike test is no longer zero, all the rest of his tests point to the fact that his MM seems to be inactive still. He said it's a VERY good sign to see these immunoglobulins in normal range and it really negates the m-spike test showing anything. Kinda. OY. Thank goodness. So then I ask him something that has been on my mind for a long time. When I told him, 3+ years ago, that we were not sure we wanted Tim to be revaccinated after his SCT, he said, "I'm fine with that." Some MM docs don't do this. Tim's transplant docs rec. it but I was afraid of the effect as I'd heard from people who blamed their relapses on it. I then asked the doc about tetanus. Tim cuts himself a lot at work. He said, "I'm not worried about that shot either." I was surprised. I had read that once you get tetanus, it's 90% or more fatal and said somthing to that effect. He shrugged and said he was not worried. I wondered if this was another illness that is really not seen these days, but I didn't think so. I think you can get this from soil, etc. So, just before he walked out of the room today, on a whim because it never made sense to me, I asked him about it and he says, "Of course he needs a tetanus shot! with what he does for a living!" Tim proceeds to show us where he pulled a huge splinter out from under his fingernail just today. I was like, "BUT YOU SAID...." He said, " in the context of being vaccinated after SCT, I was not worried about it. But if it's been past the amount of years that he needs a tetanus shot, you better get him a shot before he gets tetanus."
Holy cow, did I feel like a boob. I had not wanted to get any shots he didn't need, especially after we had
3 friends relapse right after getting all their shots. He's gotten the flu shot every year and just got the pneumovax shot a few weeks ago. I've not wanted to mess with this remission by messing around with his immune system too much. I've been wracking my brains now about when he got his last tetanus shot. I finally remembered he had it done in a hospital ER when he had an infection in his knee so even though I'm getting
him a shot(he has had an SCT in between so there's every chance his immunities to it are gone) I'm gonna
call them and see what year that was. If it hasn't been 10 years, it's gotta be close. I think I'll get one now too. I can't remember my last one. I think I'm passed 10 years. I tell ya, I was just at my MM support group yesterday saying how scary it is to be the one researching and taking so much responsibility for his health and a man told me that he felt sorry for me because he sees that I have immersed my life in cancer and don't even have it. And, it's never enough. I still made a BIG boo boo and my husband may be walking around in real jeopardy. UGH!!!! I was in shock when I left and it was just because the doc had not elaborated. Too many balls in the air. So scary to think that if you miss catching one, it could be a life or death situation. Any wonder my hair's turning gray?
Friday, February 17, 2012
Monday, February 6, 2012
Back from the house of mouse
If ever there was a feeling of being dropped, hard, back into reality, it is when you return home from
Disneyworld. It is a magical place of make-believe. I don't think there is a better place to forget your
troubles. So hard to come home, made all the more painful that it was 82 degrees with a slight breeze
moving the palm tree fronds, and 42 degrees back here in Jersey. But, as I kept telling my depressed
13 year-old, we were very lucky to have been able to take this trip. She has been to Disney 3 times
in the last 8 years, some people never go at all. It was a great time. I'm not fond of flying but having half
my family on the plane made for some helpful diversion. The laughing started right away at the Orlando
airport as my father somehow used coupons to score a souped up Dodge Charger as a rental, while us
and my sister's family spent even more to drive a Toyota Camry and a Mitsubishi Galant. (Cathy upgraded
with one of Dad's leftover coupons to a nicer Chevy model when she went to pick up my other sis and nephew from the airport 2 days later) As we walked to pick up the rental cars in the parking garage, of course we came to my parents' metallic orange muscle car first, hence Tim and Chris arrived at our rentals looking like they'd just lost their best friends. We had a ton of laughs on our trip. We drove out to visit Tim's Aunt and Uncle and had dinner with them one night. The weather was superb. It was in the mid 70's in the beginning of
the week and 81 and 82 by the end. Gorgeous. We actually got to use the huge pool and hot tubs.Tim had started getting a cold before we left, which I caught by Wednesday, which stunk, but it could be worse, right? It isn't easy trying to do Disney with a lot of people. We were 9 and then 11 by Tuesday. Different ages, different priorities. My brother-in-law is an "always late" type. My sister warned him for weeks that he was not to hold our whole family up. The warnings didn't work much. We waited for him constantly. One day, we just left to go to the park and they had to find their own way. He rarely missed stopping at a food stand or drink kiosk and I marvel at the fact that one can spend several thousand dollars going on a trip and have eating and drinking be the first priority. Heck, I can do that at home. To each his own. It was great fun, despite that. I have been catching up with facebook and blogs this morning. I read something about "new normals" for cancer patients and caregivers over at Sarah's blog(Our journey with Multiple Myeloma). One thing, that I don't think anyone can understand, unless they're in the position, is that part of living with this "new normal" is that we know that
coming back on vacation here is not a given. While Tim, Olivia, and I wanted to make sure we got to see everything we wanted to see while there, (we didn't but hit most of it), my sister and her husband knew that they'd be back again when their kids were older so there was no such urgency on their part to get to everything. That's the way it is when you are living with cancer and checking off a bucket list. You may not
speak of it, but you are thinking that you may never come this way again. Even at holidays, you know that others think of future ones as foregone conclusions. For us, this is simply not so. We have to experience each thing with the knowledge that we may not experience it again. There is an underlying sense of urgency in our
lives that people cannot understand. They can project into the future with some sense of assurance that it will happen. We have to live in the moment and enjoy what is happening today only. I've said it before, kids are
great at this, adults..................not so much. But Disney is a place that makes that as easy as it's gonna get. I
did not think we'd see it again after our "08 trip. I guess I should be hopeful and say that we just may go again some day. That's what this "new normal" kinda is. Trying to be hopeful, yet dealing with a very harsh
reality too. It's a daily balancing act that I see as mainly trying to stave off depression. Well, my way of dealing with it is vacations. They are my breaks from reality and I'm so grateful that we are able to get them.
A lot of really good memories were made this past week. We are blessed.
Disneyworld. It is a magical place of make-believe. I don't think there is a better place to forget your
troubles. So hard to come home, made all the more painful that it was 82 degrees with a slight breeze
moving the palm tree fronds, and 42 degrees back here in Jersey. But, as I kept telling my depressed
13 year-old, we were very lucky to have been able to take this trip. She has been to Disney 3 times
in the last 8 years, some people never go at all. It was a great time. I'm not fond of flying but having half
my family on the plane made for some helpful diversion. The laughing started right away at the Orlando
airport as my father somehow used coupons to score a souped up Dodge Charger as a rental, while us
and my sister's family spent even more to drive a Toyota Camry and a Mitsubishi Galant. (Cathy upgraded
with one of Dad's leftover coupons to a nicer Chevy model when she went to pick up my other sis and nephew from the airport 2 days later) As we walked to pick up the rental cars in the parking garage, of course we came to my parents' metallic orange muscle car first, hence Tim and Chris arrived at our rentals looking like they'd just lost their best friends. We had a ton of laughs on our trip. We drove out to visit Tim's Aunt and Uncle and had dinner with them one night. The weather was superb. It was in the mid 70's in the beginning of
the week and 81 and 82 by the end. Gorgeous. We actually got to use the huge pool and hot tubs.Tim had started getting a cold before we left, which I caught by Wednesday, which stunk, but it could be worse, right? It isn't easy trying to do Disney with a lot of people. We were 9 and then 11 by Tuesday. Different ages, different priorities. My brother-in-law is an "always late" type. My sister warned him for weeks that he was not to hold our whole family up. The warnings didn't work much. We waited for him constantly. One day, we just left to go to the park and they had to find their own way. He rarely missed stopping at a food stand or drink kiosk and I marvel at the fact that one can spend several thousand dollars going on a trip and have eating and drinking be the first priority. Heck, I can do that at home. To each his own. It was great fun, despite that. I have been catching up with facebook and blogs this morning. I read something about "new normals" for cancer patients and caregivers over at Sarah's blog(Our journey with Multiple Myeloma). One thing, that I don't think anyone can understand, unless they're in the position, is that part of living with this "new normal" is that we know that
coming back on vacation here is not a given. While Tim, Olivia, and I wanted to make sure we got to see everything we wanted to see while there, (we didn't but hit most of it), my sister and her husband knew that they'd be back again when their kids were older so there was no such urgency on their part to get to everything. That's the way it is when you are living with cancer and checking off a bucket list. You may not
speak of it, but you are thinking that you may never come this way again. Even at holidays, you know that others think of future ones as foregone conclusions. For us, this is simply not so. We have to experience each thing with the knowledge that we may not experience it again. There is an underlying sense of urgency in our
lives that people cannot understand. They can project into the future with some sense of assurance that it will happen. We have to live in the moment and enjoy what is happening today only. I've said it before, kids are
great at this, adults..................not so much. But Disney is a place that makes that as easy as it's gonna get. I
did not think we'd see it again after our "08 trip. I guess I should be hopeful and say that we just may go again some day. That's what this "new normal" kinda is. Trying to be hopeful, yet dealing with a very harsh
reality too. It's a daily balancing act that I see as mainly trying to stave off depression. Well, my way of dealing with it is vacations. They are my breaks from reality and I'm so grateful that we are able to get them.
A lot of really good memories were made this past week. We are blessed.
Wednesday, January 25, 2012
Leavin' on a jet plane
It's down to the mad rush of trying to finish everything before we leave for Disney. I told Tim yesterday
that there is no other week in the year that could have been a worse time for us to go. It's this damn
business paperwork doggin' me again. Not only is this a busy time for me as treasurer for our church,
but all Tim's business quarterlies were due this month AND all the end of year stuff too, like W-2 reports
and so on. It never ends. I am working off a page full of things that have to be done before we leave and
for everything I do and check off, I think of 2 more things that have to be done. My car is in the shop being repaired from the hit and run. I've had to meet with the insurance company over the money issues pertaining to the repairs of our rental house from the tree incident. After countless phone calls and 3 meetings over the house with them since this began, I FINALLY have them at an amount my contractor can do the work for. I'm taxiing my kid all over tarnation. UGGGHHHHHH! Both my younger sister, who has the 4 and 9 year old, and myself will be exhausted by the time we leave our homes early Sunday morning. And as any of you who have ever been to Disney with kids knows, it is NOT a relaxing vacation. You walk more than you've walked in a year's time. This is one of those trips you need a vacation from afterward. I think I may need a scooter with my bad foot (neuromas suck) and my back, which I just blew out on Sunday!!!! Health warning: if you have a bad back, NEVER have an asthmatic coughing fit in a slightly bent over position. Or maybe it was that I was in the shower. Or maybe that I was coughing while nekked. Well, whatever, just DON'T DO IT! Trust me on this one.
BUT, despite all that, we are getting more excited by the day. Us adults are more jazzed than the kids, I think. Liv's teachers calmed down about us taking her out of school during midterms after I 'splained things in an e-mail and they're all letting her take the tests during class time this week so she has nothing hanging over her head on vacation. I'll thank them mightily before we leave. All in all, I know my family is so blessed to be able to do this. These will be memories we will all cherish. I am SO thrilled that Tim will be celebrating his birthday down there. What's not to love about that? I simply cannot wait!!! The extended weather report shows 70's down there, which will be terrific. We're having pretty mild weather here too so fingers crossed
any snowstorms wait until we are back on terra firma. Well, gotta get back to work. Tim just got home and added another chore to the list. SHEESH!
that there is no other week in the year that could have been a worse time for us to go. It's this damn
business paperwork doggin' me again. Not only is this a busy time for me as treasurer for our church,
but all Tim's business quarterlies were due this month AND all the end of year stuff too, like W-2 reports
and so on. It never ends. I am working off a page full of things that have to be done before we leave and
for everything I do and check off, I think of 2 more things that have to be done. My car is in the shop being repaired from the hit and run. I've had to meet with the insurance company over the money issues pertaining to the repairs of our rental house from the tree incident. After countless phone calls and 3 meetings over the house with them since this began, I FINALLY have them at an amount my contractor can do the work for. I'm taxiing my kid all over tarnation. UGGGHHHHHH! Both my younger sister, who has the 4 and 9 year old, and myself will be exhausted by the time we leave our homes early Sunday morning. And as any of you who have ever been to Disney with kids knows, it is NOT a relaxing vacation. You walk more than you've walked in a year's time. This is one of those trips you need a vacation from afterward. I think I may need a scooter with my bad foot (neuromas suck) and my back, which I just blew out on Sunday!!!! Health warning: if you have a bad back, NEVER have an asthmatic coughing fit in a slightly bent over position. Or maybe it was that I was in the shower. Or maybe that I was coughing while nekked. Well, whatever, just DON'T DO IT! Trust me on this one.
BUT, despite all that, we are getting more excited by the day. Us adults are more jazzed than the kids, I think. Liv's teachers calmed down about us taking her out of school during midterms after I 'splained things in an e-mail and they're all letting her take the tests during class time this week so she has nothing hanging over her head on vacation. I'll thank them mightily before we leave. All in all, I know my family is so blessed to be able to do this. These will be memories we will all cherish. I am SO thrilled that Tim will be celebrating his birthday down there. What's not to love about that? I simply cannot wait!!! The extended weather report shows 70's down there, which will be terrific. We're having pretty mild weather here too so fingers crossed
any snowstorms wait until we are back on terra firma. Well, gotta get back to work. Tim just got home and added another chore to the list. SHEESH!
Thursday, January 19, 2012
BEST husband in the world.....................psyche out
Today, I went to our monthly MM support group meeting. Always a nice time with such terrific people. I've
said it before, MM seems to only choose great folks. On the way home, I stopped at a friend's deli
to pick up some lunch before I went over to our rental house to sand spackle, prime, and paint the wall
that was damaged when the tree fell on the house. Yesterday, while I was over there spackling, Tim called
from a different deli and asked if I wanted anything. I said, "yeah, grab me some soup." He did and dropped
it off to me. Today, I stopped home to eat, change clothes and grab my tools etc. I saw a deli container of
soup sitting on my stove. I thought, "how sweet is that. He brought me soup again, without even asking(he
knew I'd be in the middle of the meeting) and he dropped it off at home on his way to his other job site."
I went on and on in my head about what a terrific husband I have. I figured I'd really show him my appreciation when he got home. Well, since I had stopped, I had a sandwich and a soup already, but I was still overwhelmed by what he had done. I don't EVER take nice things for granted, no matter how small. I appreciate even the tiniest of kindnesses shown to me. So, I finished eating and went to put the soup he'd bought me in the fridge. I figured I'd just
have it tomorrow. I picked the container up and it was VERY light. I look and there is about 2 spoonfuls of
soup left in the bottom. WHAT?! I thought, "THAT LITTLE &%$#@*" He got home from work later and I said, "what was the deal with the soup?" He laughed. It seems he ate his lunch here at home and decided to taste the soup he bought me, then he tasted a little more, then he liked it so much, he kept going and couldn't stop himself. So the brat left 2 little spoonfuls in the bottom of the container and left it on the stove for me. Could you imagine if I hadn't stopped to pick something up? 2 spoonfuls of soup for lunch. They say it's the thought that counts. I think he should have just finished it and hidden the evidence. So much for all that sweetest husband stuff! Some days, reality comes along and whaps you right upside the head. :o/
said it before, MM seems to only choose great folks. On the way home, I stopped at a friend's deli
to pick up some lunch before I went over to our rental house to sand spackle, prime, and paint the wall
that was damaged when the tree fell on the house. Yesterday, while I was over there spackling, Tim called
from a different deli and asked if I wanted anything. I said, "yeah, grab me some soup." He did and dropped
it off to me. Today, I stopped home to eat, change clothes and grab my tools etc. I saw a deli container of
soup sitting on my stove. I thought, "how sweet is that. He brought me soup again, without even asking(he
knew I'd be in the middle of the meeting) and he dropped it off at home on his way to his other job site."
I went on and on in my head about what a terrific husband I have. I figured I'd really show him my appreciation when he got home. Well, since I had stopped, I had a sandwich and a soup already, but I was still overwhelmed by what he had done. I don't EVER take nice things for granted, no matter how small. I appreciate even the tiniest of kindnesses shown to me. So, I finished eating and went to put the soup he'd bought me in the fridge. I figured I'd just
have it tomorrow. I picked the container up and it was VERY light. I look and there is about 2 spoonfuls of
soup left in the bottom. WHAT?! I thought, "THAT LITTLE &%$#@*" He got home from work later and I said, "what was the deal with the soup?" He laughed. It seems he ate his lunch here at home and decided to taste the soup he bought me, then he tasted a little more, then he liked it so much, he kept going and couldn't stop himself. So the brat left 2 little spoonfuls in the bottom of the container and left it on the stove for me. Could you imagine if I hadn't stopped to pick something up? 2 spoonfuls of soup for lunch. They say it's the thought that counts. I think he should have just finished it and hidden the evidence. So much for all that sweetest husband stuff! Some days, reality comes along and whaps you right upside the head. :o/
Wednesday, January 11, 2012
18 Days until DISNEYWORLD
OK, time to get that colonoscopy post off the top. Just got the call that everything was fine. They want me back in 3 years. I'm assuming that means the polyp was the type that can turn into something more often than the kind that doesn't as much as he said it would be a 3 or 5 year wait to repeat depending on what kind it was. Anyhow, that's over. I've been trying to tear myself away from the internet(I think I'm addicted) and get
some work done. It is quarterly paperwork time for Tim's business as well as W-2 time and getting ready to do taxes time so I have an awful lot that has to be done and paid before we leave for Disneyworld at the end
of the month. We will be one grandchild short because my niece had to back out. Her college has a very strict attendance policy and if she misses too many days in a course, she will not get the credit for the class.
It's a bummer. I'm sad, too, over having to kennel my pup for this long but have no choice. I went to my therapist today and sometimes I just have to laugh. Whereas most therapists try to heal relationships, mine
believes if someone is too toxic, boot 'em outta your life. Not a problem for me, but for Tim, easier said than done. This is his family we're talking about, and he has a medical condition. She asked me something today that, again, made me
re-visit something that has crossed my mind before. She asked what made me different from Tim's sis and sister-in-law in relationship to his mother. My answer was that I was not needy and up her arse all the time.
She said, "so that means she has no control over you." YEP. I think that's it folks. Tim and I have always lived our lives our way, without needing or asking for their help or advice. As they tried to butt into our lives,
and said obnoxious/negative things to us at times, we purposely shared less and less with them all, keeping them out of our business. The less they knew, the less they could butt in or pass judgement. *Actually, the less they knew, the more they made up themselves and passed judgement on us anyway based on their own backward theories, but I digress. And I think that even though it was Tim who asked me to hush up, limit the phone calls, and not tell them things over the years because he was sick of the comments and unsolicited advice, they blame me for backing off and "taking their son away." I backed off calling and took myself out of the gossipy mess these women have going on and they saw us slipping out of their control. We have some nerve having respect for ourselves and refusing to take their cr**, don't we? They are depressed now because after this big fight, they realize that TIM thinks this way of the whole mess too. It was not just my opinion and choice to back out. Their behavior drove him away too. The truth hurts. So, I kinda feel better. I've given these people way too much airtime in my head but have a much better understanding of what went wrong and why. I asked Tim if he wanted me to e-mail them our travel itinerary.
He will celebrate his b-day while we are in Florida. Tim said, "why do we have to tell them where we're going?" OK boss, it's your call. I'm getting so excited for this trip. It's gonna be a blast with my family. My sister told me she is bringing a box of "Depends" 'cause she expects us all to be peeing our knickers from laughing so hard. She's probably right. :o)
some work done. It is quarterly paperwork time for Tim's business as well as W-2 time and getting ready to do taxes time so I have an awful lot that has to be done and paid before we leave for Disneyworld at the end
of the month. We will be one grandchild short because my niece had to back out. Her college has a very strict attendance policy and if she misses too many days in a course, she will not get the credit for the class.
It's a bummer. I'm sad, too, over having to kennel my pup for this long but have no choice. I went to my therapist today and sometimes I just have to laugh. Whereas most therapists try to heal relationships, mine
believes if someone is too toxic, boot 'em outta your life. Not a problem for me, but for Tim, easier said than done. This is his family we're talking about, and he has a medical condition. She asked me something today that, again, made me
re-visit something that has crossed my mind before. She asked what made me different from Tim's sis and sister-in-law in relationship to his mother. My answer was that I was not needy and up her arse all the time.
She said, "so that means she has no control over you." YEP. I think that's it folks. Tim and I have always lived our lives our way, without needing or asking for their help or advice. As they tried to butt into our lives,
and said obnoxious/negative things to us at times, we purposely shared less and less with them all, keeping them out of our business. The less they knew, the less they could butt in or pass judgement. *Actually, the less they knew, the more they made up themselves and passed judgement on us anyway based on their own backward theories, but I digress. And I think that even though it was Tim who asked me to hush up, limit the phone calls, and not tell them things over the years because he was sick of the comments and unsolicited advice, they blame me for backing off and "taking their son away." I backed off calling and took myself out of the gossipy mess these women have going on and they saw us slipping out of their control. We have some nerve having respect for ourselves and refusing to take their cr**, don't we? They are depressed now because after this big fight, they realize that TIM thinks this way of the whole mess too. It was not just my opinion and choice to back out. Their behavior drove him away too. The truth hurts. So, I kinda feel better. I've given these people way too much airtime in my head but have a much better understanding of what went wrong and why. I asked Tim if he wanted me to e-mail them our travel itinerary.
He will celebrate his b-day while we are in Florida. Tim said, "why do we have to tell them where we're going?" OK boss, it's your call. I'm getting so excited for this trip. It's gonna be a blast with my family. My sister told me she is bringing a box of "Depends" 'cause she expects us all to be peeing our knickers from laughing so hard. She's probably right. :o)
Tuesday, January 3, 2012
Not for the squeamish
If you cannot take colonoscopy talk-turn back now. OK, you brave souls, so I dominated my first colonoscopy today at 3 pm. It was a long time coming. I have had stomach issues for years. In my own opinion, I think it's food allergies/intolerances, but it seems that peri-menopausal hormone changes have kicked it up a notch.I have put off having a colonoscopy for a long time basically because in 1992, I went to have a similar test,
but from the other end of my body, to rule out pancreatic cancer because my pancreas was swollen for some
strange reason. I had a severe allergic reaction to the demerol they used to TRY to knock me out and it was
NOT a good day. After the test was done, which did not work well at all, this is what the doctor said to me, "well, we don't think you have pancreatic cancer. Come back in 3 months for a cat scan and we'll see if it's gone down. Oh, and I strongly suggest you wear a medical ID bracelet for your demerol allergy. The next time someone gives you demerol will be the last." THANK YOU and good day, doc! >:o/ I only just learned, when I finally broke down and went to a gastroenterologist recently, that they do not use the same anesthesia for colonoscopies.Who knew? Actually, now I'm wondering if they really don't use it for what I had done 19 years ago but those docs got away without using anesthesiologists by using Demerol and Versed. Anyhoo, maybe I should elaborate on what DOMINATE means to me. Ya see, I am totally chicken of medical stuff. Had too many close calls and mishaps. It doesn't help that I feel so needed at home that it gives me chills to think what my husband and kid would do if something happened to me.....after they blew all the insurance money, that is. The anesthesiologist had been briefed on my underlying conditions, mainly my screwy heart rate, high blood pressure under stress and sensitivity to meds. He came in to talk to me and was SOOOO nice. I said, "Doc, I have a husband with cancer and a 13 year old kid. I need your "A" game today." Dr Patel put me at ease and told me I was gonna be fine. He even came in when I was in recovery to tell me my heart didn't do anything wonky and that Propofol was a safe drug for me. My doc came in and told me he removed a polyp and took biopsies of my intestines. Nothing worrisome. He said there is no cancer, and that when the lab determines which type of polyp it is, they will let me know if I have to go back in 3 years or 5. Now, back to the dominate thing. I did not walk in there like wonder woman on a mission from God. Nope. I had to take 2 doses of the most disgusting tasting stuff, last night and this morning. I took one sip of this crud last night and almost put the whole thing off. I got half way through the dose this morning and almost cried "uncle." Darn near hurled multiple times after I finally gagged it down. I complained around here just a bit about not being able to eat for 2 days. Hard at first, got used to it later, and I haven't seen my stomach this flat in years. I wanted to run from the building screaming like a little girl
while they were hooking me up to all the leads and stuff, but I STUCK IT OUT and dominated it the best I
could through some darn significant fear. So, my thanks to God that they found nothing concerning and that I
muddled through it all. Had lots of support from family and friends who have "been there, done that, " and helped me through, even if it was just to laugh at me while I ran to the bathroom yelling, "FIRE IN THE HOLE". Now, I just finished eating chili despite having not eaten in 2 days and taking 2 doses of turbo lax in the last 24 hours because sometimes, you just have to live on the edge. :o)
Insert movie clip of Jeff Daniels in "Dumb and Dumber" here.
Oh the heck with it, I'm gonna post the link for you REALLY brave souls!
http://www.youtube.com/watch?v=wbDiujuv6rQ
but from the other end of my body, to rule out pancreatic cancer because my pancreas was swollen for some
strange reason. I had a severe allergic reaction to the demerol they used to TRY to knock me out and it was
NOT a good day. After the test was done, which did not work well at all, this is what the doctor said to me, "well, we don't think you have pancreatic cancer. Come back in 3 months for a cat scan and we'll see if it's gone down. Oh, and I strongly suggest you wear a medical ID bracelet for your demerol allergy. The next time someone gives you demerol will be the last." THANK YOU and good day, doc! >:o/ I only just learned, when I finally broke down and went to a gastroenterologist recently, that they do not use the same anesthesia for colonoscopies.Who knew? Actually, now I'm wondering if they really don't use it for what I had done 19 years ago but those docs got away without using anesthesiologists by using Demerol and Versed. Anyhoo, maybe I should elaborate on what DOMINATE means to me. Ya see, I am totally chicken of medical stuff. Had too many close calls and mishaps. It doesn't help that I feel so needed at home that it gives me chills to think what my husband and kid would do if something happened to me.....after they blew all the insurance money, that is. The anesthesiologist had been briefed on my underlying conditions, mainly my screwy heart rate, high blood pressure under stress and sensitivity to meds. He came in to talk to me and was SOOOO nice. I said, "Doc, I have a husband with cancer and a 13 year old kid. I need your "A" game today." Dr Patel put me at ease and told me I was gonna be fine. He even came in when I was in recovery to tell me my heart didn't do anything wonky and that Propofol was a safe drug for me. My doc came in and told me he removed a polyp and took biopsies of my intestines. Nothing worrisome. He said there is no cancer, and that when the lab determines which type of polyp it is, they will let me know if I have to go back in 3 years or 5. Now, back to the dominate thing. I did not walk in there like wonder woman on a mission from God. Nope. I had to take 2 doses of the most disgusting tasting stuff, last night and this morning. I took one sip of this crud last night and almost put the whole thing off. I got half way through the dose this morning and almost cried "uncle." Darn near hurled multiple times after I finally gagged it down. I complained around here just a bit about not being able to eat for 2 days. Hard at first, got used to it later, and I haven't seen my stomach this flat in years. I wanted to run from the building screaming like a little girl
while they were hooking me up to all the leads and stuff, but I STUCK IT OUT and dominated it the best I
could through some darn significant fear. So, my thanks to God that they found nothing concerning and that I
muddled through it all. Had lots of support from family and friends who have "been there, done that, " and helped me through, even if it was just to laugh at me while I ran to the bathroom yelling, "FIRE IN THE HOLE". Now, I just finished eating chili despite having not eaten in 2 days and taking 2 doses of turbo lax in the last 24 hours because sometimes, you just have to live on the edge. :o)
Insert movie clip of Jeff Daniels in "Dumb and Dumber" here.
Oh the heck with it, I'm gonna post the link for you REALLY brave souls!
http://www.youtube.com/watch?v=wbDiujuv6rQ
Sunday, January 1, 2012
2012
2011 wasn't a bad year for us despite the "wheels falling off" about 2 months ago. It was a dicey ending but
could've been worse, right? We have some clean-up to do in that respect. Namely, get my van fixed and continue negotiating (fighting) with our insurance company to get our rental house fixed. The check they sent to remove the tree,(which we did), redo the roof, siding, soffit, gutter, and damage to the inside of the wall was LESS than the check they just sent to fix my car. Makes perfect sense, right?! Grrrr. Other than what has happened in the last 2+ months,
we can't complain about 2011. Tim's numbers, which began to show a slight band in January, after 2+ years of no m-spike, have stayed stable, and we are very grateful, as always. Did some great vacationing and fell in
love with the Lake Winnepesaukee, NH area. Tim was VERY busy with work the whole year so, financially, it's been a successful, albeit exhausting year. After much looking, and a few big arguments, he finally found a new, to us, work van and bought it yesterday. Man, is that boy FUSSY!!! Our old van has been gasping away the last months while he let good vans I found slip away because the grills weren't chrome or whatever. He drives me crazy sometimes. Looking forward to the Disney trip with my family at the end of this month. Got some medical stuff to take care of for me between now and then, starting with my first colonoscopy in 2 days. Lovely. :o( I've got to get on the ball about taking care of me. Been saying it, just not doing it. Definitely not getting away with it either. I have to get cracking on chores around here I have been avoiding like the plague. Hopefully, this is going to be the year of getting organized and taking care of ME.
I need to not only get to work around here but also try to SLOOOOOOOW things way down somehow.
Time is flying by so fast and I'm not taking time to do things I want to do. I feel bogged down in all the things I HAVE to do. Hopefully, organizing the latter will help me with the former. Myeloma-wise, things are tough right now. Too many people really struggling now and that elusive cure not showing up yet, it seems. I just called a woman yesterday who lives near me that I "met" on the ACOR listserv. She had invited us up to see her horses with Liv months ago. We never had the time and then things got bad for her. She did an allo with her sister's cells and it hasn't worked. They've tried everything on her and it's still progressing. I'm praying that GVHD kicks in(she had none) and helps her out. I feel so helpless. I was just talking to the nurse at Tim's MM doc's office the other day via e-mail. We passed on having Tim re-vaccinated after his failed SCT because I had heard of people on the ACOR list that swore they came out of CR when they had their shots.
Apparently, this is why the pneumonia vaccine was overlooked for Tim. The 3 people who transplanted with Tim all relapsed after those "baby" shots. Keeping in mind, I know folks who had no problem with them too. BUT, the nurse told me they've had a lot of people relapse after those shots and she'd never thought about it, it seems, until I mentioned our 3 friends that did. On the one hand, I am so relieved that I did research and we made that decision, especially now that she told me this. Tim had gone into CR by then from Velcade and we would have second guessed ourselves forever if he got the shots and relapsed. On the other hand, it is absolutely terrifying to have to make life and death medical decisions with no medical backround and since
Tim's way of dealing with MM is putting it out of his mind, that leaves me to do all the research and he makes his decisions based on the information I give him. SO DARN SCARY for me. But, what choice do I have? I know full well how the medical field can fail people and drop balls. It happened to me and drastically changed the course of my life. After what I've seen over the years, and things that have already happened to us both, I can't sit back and trust that things will go OK if we just listen to the doctors.I guess this is one reason I have done so little for me. This caregiver job seems to be so important, I place little importance on anything else. Gotta try to find a balance there. Well, I hope all of you have a wonderful 2012. Oh, and Steven from CA, I am following along but your blog is one I cannot post comments on. When I go to write the security word, the eagle backround is all I see and I can't see any word in the box. Anyway, onward to the new year. Gonna try to make it a good one. Wishing you all peace, joy, and health.
First recipe of the New Year. Made these for a party we attended last night. They were a hit-Very moist.
Banana brownies
You need:
1 3/4 cup chocolate chips (I used semi-sweet-recipe called for milk chocolate)
1 cup all purpose flour(recipe called for 1/2 c of whole wheat and 1/2 c all purpose white, I didn't have whole wheat and STOP trying to make brownies healthy damnit. What's the point then. I'm already using bananas for Pete sake. ;o) )
3/4 teaspoon baking powder (I use the aluminum free, SEE I do make some healthy choices)
1/2 teaspoon salt
1 cup light brown sugar
1/2 cup (one stick) butter
1 teaspoon vanilla extract
2 large eggs
2 ripe bananas slit lengthwise and chopped
____________________________________
Melt 1 cup of the choco. chips in microwave or double boiler(for neanderthals like me who don't own a microwave). Let cool. In small bowl, combine flour, baking powder and salt. In mixing bowl, beat or blend(for those of us who don't think it's worth having to clean the mixer blades) the butter and brown sugar. Add eggs and vanilla and mix well. Mix in melted chocolate and then add flour mixture and blend. Stir in the remainder of the chocolate chips and the chopped banana. Bake in a greased(sprayed with Pam) 9" square
pan in a 350 degree oven for 40 to 45 minutes. Cool in pan on wire rack.
YUMMY and a perfect way to use up those bananas that are going brown on ya.
could've been worse, right? We have some clean-up to do in that respect. Namely, get my van fixed and continue negotiating (fighting) with our insurance company to get our rental house fixed. The check they sent to remove the tree,(which we did), redo the roof, siding, soffit, gutter, and damage to the inside of the wall was LESS than the check they just sent to fix my car. Makes perfect sense, right?! Grrrr. Other than what has happened in the last 2+ months,
we can't complain about 2011. Tim's numbers, which began to show a slight band in January, after 2+ years of no m-spike, have stayed stable, and we are very grateful, as always. Did some great vacationing and fell in
love with the Lake Winnepesaukee, NH area. Tim was VERY busy with work the whole year so, financially, it's been a successful, albeit exhausting year. After much looking, and a few big arguments, he finally found a new, to us, work van and bought it yesterday. Man, is that boy FUSSY!!! Our old van has been gasping away the last months while he let good vans I found slip away because the grills weren't chrome or whatever. He drives me crazy sometimes. Looking forward to the Disney trip with my family at the end of this month. Got some medical stuff to take care of for me between now and then, starting with my first colonoscopy in 2 days. Lovely. :o( I've got to get on the ball about taking care of me. Been saying it, just not doing it. Definitely not getting away with it either. I have to get cracking on chores around here I have been avoiding like the plague. Hopefully, this is going to be the year of getting organized and taking care of ME.
I need to not only get to work around here but also try to SLOOOOOOOW things way down somehow.
Time is flying by so fast and I'm not taking time to do things I want to do. I feel bogged down in all the things I HAVE to do. Hopefully, organizing the latter will help me with the former. Myeloma-wise, things are tough right now. Too many people really struggling now and that elusive cure not showing up yet, it seems. I just called a woman yesterday who lives near me that I "met" on the ACOR listserv. She had invited us up to see her horses with Liv months ago. We never had the time and then things got bad for her. She did an allo with her sister's cells and it hasn't worked. They've tried everything on her and it's still progressing. I'm praying that GVHD kicks in(she had none) and helps her out. I feel so helpless. I was just talking to the nurse at Tim's MM doc's office the other day via e-mail. We passed on having Tim re-vaccinated after his failed SCT because I had heard of people on the ACOR list that swore they came out of CR when they had their shots.
Apparently, this is why the pneumonia vaccine was overlooked for Tim. The 3 people who transplanted with Tim all relapsed after those "baby" shots. Keeping in mind, I know folks who had no problem with them too. BUT, the nurse told me they've had a lot of people relapse after those shots and she'd never thought about it, it seems, until I mentioned our 3 friends that did. On the one hand, I am so relieved that I did research and we made that decision, especially now that she told me this. Tim had gone into CR by then from Velcade and we would have second guessed ourselves forever if he got the shots and relapsed. On the other hand, it is absolutely terrifying to have to make life and death medical decisions with no medical backround and since
Tim's way of dealing with MM is putting it out of his mind, that leaves me to do all the research and he makes his decisions based on the information I give him. SO DARN SCARY for me. But, what choice do I have? I know full well how the medical field can fail people and drop balls. It happened to me and drastically changed the course of my life. After what I've seen over the years, and things that have already happened to us both, I can't sit back and trust that things will go OK if we just listen to the doctors.I guess this is one reason I have done so little for me. This caregiver job seems to be so important, I place little importance on anything else. Gotta try to find a balance there. Well, I hope all of you have a wonderful 2012. Oh, and Steven from CA, I am following along but your blog is one I cannot post comments on. When I go to write the security word, the eagle backround is all I see and I can't see any word in the box. Anyway, onward to the new year. Gonna try to make it a good one. Wishing you all peace, joy, and health.
First recipe of the New Year. Made these for a party we attended last night. They were a hit-Very moist.
Banana brownies
You need:
1 3/4 cup chocolate chips (I used semi-sweet-recipe called for milk chocolate)
1 cup all purpose flour(recipe called for 1/2 c of whole wheat and 1/2 c all purpose white, I didn't have whole wheat and STOP trying to make brownies healthy damnit. What's the point then. I'm already using bananas for Pete sake. ;o) )
3/4 teaspoon baking powder (I use the aluminum free, SEE I do make some healthy choices)
1/2 teaspoon salt
1 cup light brown sugar
1/2 cup (one stick) butter
1 teaspoon vanilla extract
2 large eggs
2 ripe bananas slit lengthwise and chopped
____________________________________
Melt 1 cup of the choco. chips in microwave or double boiler(for neanderthals like me who don't own a microwave). Let cool. In small bowl, combine flour, baking powder and salt. In mixing bowl, beat or blend(for those of us who don't think it's worth having to clean the mixer blades) the butter and brown sugar. Add eggs and vanilla and mix well. Mix in melted chocolate and then add flour mixture and blend. Stir in the remainder of the chocolate chips and the chopped banana. Bake in a greased(sprayed with Pam) 9" square
pan in a 350 degree oven for 40 to 45 minutes. Cool in pan on wire rack.
YUMMY and a perfect way to use up those bananas that are going brown on ya.
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