The other night, they had a republican convention-type meeting at our community center.
The republican candidate for governor was there. News cameras and all. We use another room in that building for Olivia's
cheerleading practices. After the practice, I got in a conversation with another mom and Olivia and her friend, who
was riding home with us, went into the rep. meeting as it was breaking up. Olivia got to shake the hand of the guy who hopes to be NJ's next governor. I am not a very political person but don't vote for known crooks(heck Jersey has enough trouble with the unknown crooks we've unwittingly elected in the past, I see no reason to hire a known one) or people who oppose stem-cell research especially given our current situation with MM being in our lives. I'm not a card-carrying anything though I tend to vote democratic. I think this whole republican and democratic stuff should be thrown out anyhow
and I refer to bi-partisan as "bi-port-o-san" because too many times, both sides are full of........
well, you know what I mean. So luckily, I was not in this room because Olivia decided to announce that "my Mom is voting for Corzine"(our current governor, the democrat.) HA!! I guess only the folks that were right around her heard this, one being a man I'm friends with, and he got
a laugh out of it. I had to brief Olivia on the political etiquette of not telling who mommy and daddy are voting for ESPECIALLY in the midst of a republican convention. Too funny! I passed
the guy in the hall. Did not shake his hand. Then I heard what my kid had said to boot. OOPS!
I made Liv wash her hands when we got home. His palms have been greased too many times.
Can you spell k-i-c-k-b-a-c-k?
Thursday, October 29, 2009
Monday, October 26, 2009
Negligence?
This coming January, there will be a 3 day trip for the 6th grade to a place in the Catskills.
It is a 2 hour drive from here. Tim and I made the decision not to chaperone because I felt
even though they were going to be very strict about not letting sick kids come in light of this
H1N1 deal, I still didn't think it was a good idea for Tim and I to be sleeping in a dorm situation in
the middle of cold and flu season. I also notice that when the kids come back from the holiday
break, all sorts of illness flies around the school for weeks afterward. Tim does not want Olivia to miss out on things because of him but we can limit the exposure a little by not putting all three of us in this situation. The problem not chaperoning presents is that Olivia gets carsick BAD. A bus is hands down the worst type of vehicle to be in for this so
we have to drive her there and pick her up or risk her getting sick in a bus with no bathroom
which is humiliating and if you think kids will not mock her for this, you'd be wrong. I do use
a very small amount of dramamine with her but I'm not sure this amount would work well enough for a 2 hour bus ride part of which will be on country roads. If I give her more, she will
be asleep and unable to function at all both in the bus and for several hours after they get there.
The other problem is that they will use chartered buses without seatbelts. I don't understand this. There are all these laws about using carseats, boosters and seatbelts with kids. You can be
ticketed for breaking these laws but you can put kids in buses without belts anytime with no problem. Have you ever seen those news reports of what happens in bus accidents? The kids
are catapulted out the windows and there is often fatalities and critical injuries. Last year, the principal let Tim and I drive her to a day trip and we chaperoned for them because he considered this carsickness to be a medical condition that warranted it. This year we have a new
assistant principal who tells me the other day that she either goes on the bus or she misses the trip. That is the school policy. When I ask him how he will accomodate a child who is throwing up
and usually has a stomach ache that leads to her having to go to the bathroom at the same time
on a bus with no bathroom, he tells me he will have to check into this further and get back to me.
He also was not aware that we had been allowed to drive her last year. I'm waiting for the phone call with his decision. If it is the wrong one, I will be telling him that my daughter is going on the trip, we are driving her and if he wants to take this further, have at it. He thinks I am trying to
make a story up because of the seatbelts. I told him I would be happy to have Olivia's doctor
speak with him about her motion sickness. BUT even if the problem was just the seatbelts, isn't that a good enough reason? If something happened to her, I'd never forgive myself. One of the roads they will be on is the New York State thruway. My sister lives up that way and you would not want to give her a dollar for everytime she sat in traffic going home from work due to yet another fatal accident on that road. I don't let me daughter drive with people I don't know. I'm sure there are lots of great bus drivers out there but let's face it, there are many who just plain
can not get any other job. I know a woman who drove a school bus for years. She had a heart condition and was in the early stages of alzheimers when they finally pulled her from driving but still let her be a bus aide. I know a man who has diabetes and could not feel his feet well and was
still driving a bus. I don't want Olivia on a bus with no belts. We'll see what this guy comes up with. There are quite a few parents nervous about this especially considering we could be dealing
with weather conditions that time of year. They are all being told, it's the bus or your kid stays home. I'd love to see a law passed that forbids transporting kids like this. Along with that, I think
it should be totally illegal to put young kids on motorcycles with you. I've seen kids as young as
3 and 4 riding with daddy on motorcycles that don't even have sissy bars. Makes me crazy. Those kids have no idea how dangerous bikes are. I think it should be outlawed. I have nothing against motorcycles. Used to ride a dirt bike myself. But putting a kid on a bike on these roads
where we have a gazillion cars per square mile is insane. I sold my bike 2 months after I had Olivia. I decided not to take unnecessary risks with my life but I REALLY don't think it's right to take unnecessary risks with a kid's life when they are too young to understand the dangers.
It is a 2 hour drive from here. Tim and I made the decision not to chaperone because I felt
even though they were going to be very strict about not letting sick kids come in light of this
H1N1 deal, I still didn't think it was a good idea for Tim and I to be sleeping in a dorm situation in
the middle of cold and flu season. I also notice that when the kids come back from the holiday
break, all sorts of illness flies around the school for weeks afterward. Tim does not want Olivia to miss out on things because of him but we can limit the exposure a little by not putting all three of us in this situation. The problem not chaperoning presents is that Olivia gets carsick BAD. A bus is hands down the worst type of vehicle to be in for this so
we have to drive her there and pick her up or risk her getting sick in a bus with no bathroom
which is humiliating and if you think kids will not mock her for this, you'd be wrong. I do use
a very small amount of dramamine with her but I'm not sure this amount would work well enough for a 2 hour bus ride part of which will be on country roads. If I give her more, she will
be asleep and unable to function at all both in the bus and for several hours after they get there.
The other problem is that they will use chartered buses without seatbelts. I don't understand this. There are all these laws about using carseats, boosters and seatbelts with kids. You can be
ticketed for breaking these laws but you can put kids in buses without belts anytime with no problem. Have you ever seen those news reports of what happens in bus accidents? The kids
are catapulted out the windows and there is often fatalities and critical injuries. Last year, the principal let Tim and I drive her to a day trip and we chaperoned for them because he considered this carsickness to be a medical condition that warranted it. This year we have a new
assistant principal who tells me the other day that she either goes on the bus or she misses the trip. That is the school policy. When I ask him how he will accomodate a child who is throwing up
and usually has a stomach ache that leads to her having to go to the bathroom at the same time
on a bus with no bathroom, he tells me he will have to check into this further and get back to me.
He also was not aware that we had been allowed to drive her last year. I'm waiting for the phone call with his decision. If it is the wrong one, I will be telling him that my daughter is going on the trip, we are driving her and if he wants to take this further, have at it. He thinks I am trying to
make a story up because of the seatbelts. I told him I would be happy to have Olivia's doctor
speak with him about her motion sickness. BUT even if the problem was just the seatbelts, isn't that a good enough reason? If something happened to her, I'd never forgive myself. One of the roads they will be on is the New York State thruway. My sister lives up that way and you would not want to give her a dollar for everytime she sat in traffic going home from work due to yet another fatal accident on that road. I don't let me daughter drive with people I don't know. I'm sure there are lots of great bus drivers out there but let's face it, there are many who just plain
can not get any other job. I know a woman who drove a school bus for years. She had a heart condition and was in the early stages of alzheimers when they finally pulled her from driving but still let her be a bus aide. I know a man who has diabetes and could not feel his feet well and was
still driving a bus. I don't want Olivia on a bus with no belts. We'll see what this guy comes up with. There are quite a few parents nervous about this especially considering we could be dealing
with weather conditions that time of year. They are all being told, it's the bus or your kid stays home. I'd love to see a law passed that forbids transporting kids like this. Along with that, I think
it should be totally illegal to put young kids on motorcycles with you. I've seen kids as young as
3 and 4 riding with daddy on motorcycles that don't even have sissy bars. Makes me crazy. Those kids have no idea how dangerous bikes are. I think it should be outlawed. I have nothing against motorcycles. Used to ride a dirt bike myself. But putting a kid on a bike on these roads
where we have a gazillion cars per square mile is insane. I sold my bike 2 months after I had Olivia. I decided not to take unnecessary risks with my life but I REALLY don't think it's right to take unnecessary risks with a kid's life when they are too young to understand the dangers.
Thursday, October 22, 2009
Blog Etiquette(warning: totally humorless topic)
Well today, for the third time, I saw someone completely bash someone on their blog because
they did not agree with an OPINION they had. I can't tell you how much this frosts me. Then again....maybe I can. I don't know how many people read my blog. I have actually not given the site address to more than a few people I know. To me, this is my place to vent. Though I try not to offend, the truth is that
if I do, anyone has the option NOT to read my spoutings. It is cathartic to me to get my beefs down and then send them into oblivion. I know that I sound like a major whiner at times(especially in 2008, it was a tough year), but before people bash someone on their own blog,
I wish they would stop to think that this is THEIR forum. This is where they get the microphone and get to heave things off their chest. It's a form of therapy. If you'd like to throw an "AMEN" at them or a supportive comment, TERRIFIC and if these meanies and nay-sayers would like to set up their own
blog and spew their baggage into the WWW, have at it but to sucker punch someone on their own blog is inexcusable. In the one case, a young woman who is fighting for her every breath
after a MUD transplant for Hodgkins that ruined her lungs was blasted by a woman when this gal wrote about her
disappointment that her new husband bailed as soon as she took ill. Horrible. In another case,
a man totally took the wind out of another guy's sails by insulting him and then making an uneducated and negative prediction about his medical status. Today's was the last straw. I stumbled onto a blog some time ago of a family in New England whose son is fighting neuroblastoma. Their beautiful son is just 5 and has endured over 50 rounds of chemo since his dx at 7 months old. He has been deemed incurable and this man is frustrated by a lot of the same things the MM community faces too. Tryng to get access to experimental treatments and the whole clinical trial
and FDA approval processes that keep lifesaving drugs from those who need them and sometimes have no other options is a heart wrenching thing when your kid's life hangs in the balance. Someone blasted this man on his own blog about an opinion he stated concerning government monies spent on another illness. He did not begrudge funding for this illness, he just wished that a small amount of the money spent on one of the the less important aspects(nothing to do with treatment or research) could go to saving innocent little kids like his. I should elaborate that the majority of the people who have this illness, got it by taking the risk to expose themselves to it AND this blogger made it abundantly clear that he was not passing judgement on those who got it through no fault of their own. I'm not surprised that the coward that wrote this awful comment on their blog keeps an anonymous profile. I wanted to comment right there on that blog but felt I would be bringing too much of my own opinions so I'm venting here once again. I must say here and now that I feel the ONLY thing that gives any person the right to have their OWN opinion is having R-E-S-P-E-C-T for the opinions of others. Here's the beauty of living in a free country. YOU DON'T HAVE TO AGREE with anyone. BUT YOU SHOULD have the grace to respect their rights to their own opinions and mindsets. I cannot believe the heartlessness of some of these comments I read. Truly venomous. While the internet can be an
amazing resource, it does also give a venue to a lot of mean and bad people out there. There is never a justification for kicking someone when they're already down. Luckily, I have some lovely people reading my blog. But if any meany comes along on here and sucker punches me, I just may have to
hunt their raggedy ass down. They don't call me "nasty niecer" for nothing! Sorry for the seriousness here folks. Unfortunately, it ain't all fun and games in "cancerland."
they did not agree with an OPINION they had. I can't tell you how much this frosts me. Then again....maybe I can. I don't know how many people read my blog. I have actually not given the site address to more than a few people I know. To me, this is my place to vent. Though I try not to offend, the truth is that
if I do, anyone has the option NOT to read my spoutings. It is cathartic to me to get my beefs down and then send them into oblivion. I know that I sound like a major whiner at times(especially in 2008, it was a tough year), but before people bash someone on their own blog,
I wish they would stop to think that this is THEIR forum. This is where they get the microphone and get to heave things off their chest. It's a form of therapy. If you'd like to throw an "AMEN" at them or a supportive comment, TERRIFIC and if these meanies and nay-sayers would like to set up their own
blog and spew their baggage into the WWW, have at it but to sucker punch someone on their own blog is inexcusable. In the one case, a young woman who is fighting for her every breath
after a MUD transplant for Hodgkins that ruined her lungs was blasted by a woman when this gal wrote about her
disappointment that her new husband bailed as soon as she took ill. Horrible. In another case,
a man totally took the wind out of another guy's sails by insulting him and then making an uneducated and negative prediction about his medical status. Today's was the last straw. I stumbled onto a blog some time ago of a family in New England whose son is fighting neuroblastoma. Their beautiful son is just 5 and has endured over 50 rounds of chemo since his dx at 7 months old. He has been deemed incurable and this man is frustrated by a lot of the same things the MM community faces too. Tryng to get access to experimental treatments and the whole clinical trial
and FDA approval processes that keep lifesaving drugs from those who need them and sometimes have no other options is a heart wrenching thing when your kid's life hangs in the balance. Someone blasted this man on his own blog about an opinion he stated concerning government monies spent on another illness. He did not begrudge funding for this illness, he just wished that a small amount of the money spent on one of the the less important aspects(nothing to do with treatment or research) could go to saving innocent little kids like his. I should elaborate that the majority of the people who have this illness, got it by taking the risk to expose themselves to it AND this blogger made it abundantly clear that he was not passing judgement on those who got it through no fault of their own. I'm not surprised that the coward that wrote this awful comment on their blog keeps an anonymous profile. I wanted to comment right there on that blog but felt I would be bringing too much of my own opinions so I'm venting here once again. I must say here and now that I feel the ONLY thing that gives any person the right to have their OWN opinion is having R-E-S-P-E-C-T for the opinions of others. Here's the beauty of living in a free country. YOU DON'T HAVE TO AGREE with anyone. BUT YOU SHOULD have the grace to respect their rights to their own opinions and mindsets. I cannot believe the heartlessness of some of these comments I read. Truly venomous. While the internet can be an
amazing resource, it does also give a venue to a lot of mean and bad people out there. There is never a justification for kicking someone when they're already down. Luckily, I have some lovely people reading my blog. But if any meany comes along on here and sucker punches me, I just may have to
hunt their raggedy ass down. They don't call me "nasty niecer" for nothing! Sorry for the seriousness here folks. Unfortunately, it ain't all fun and games in "cancerland."
Friday, October 16, 2009
The sex talk(T-M-I about TIM)
Tim had his transplant in Sept. of 07. In addition to one of the weirdest sex questionaires I'd ever heard re: have you ever had sex with an animal or a person from the Ukraine or a person from the Ukraine who has had sex with an animal. YIKES, I don't want to know what amoeba it is these people from the Ukraine are carrying. Anyway, we had to take a several hour long caregiver course before he went in that was given by one of
the many candidates for the "nurses of HUMC pin-up calendar." Then, when we checked in, we
were given instructions again in a huge printed booklet. On the first page, it said at
the bottom in bold capital letters ABSOLUTELY NO SEXUAL RELATIONS. I knew about this,
as did Tim I believe, and honestly, I did not think it would be an issue with the nausea and all.
Well my hubby must be the only man who could take that bottle of napalm, be nauseous and weak, and still follow me around the condo looking for some action. I guess having time to kill and no kid around to worry about were the main reasons. I held out though(not my normal M.O.) while he told me many times, in words I won't report here, what he thought of
this Nooky ban. Actually, I'm not that strong. I purposely made sure we had no birth control method on hand and that's the whole reason I could hold out. Tim persisted and said, "do you actually think any of my swimmers survived that chemo?!" Now that's a line you don't hear everyday. Poor Tim, his "fellas" were flaming red one day from thrush and blue the next. ;o) On Tim's last day in transplant, I tried to think of how I could ask the transplant doc privately when we were allowed to end this ban. You see, every day from about 8 or 9 in the morning till about 5 at night, we were in a "transplant day room" at the cancer center. Tim would be in a lounge chair
and me in a chair by him and there was nothing separating us from the nurses' desk or the other transplant patients , who we had become friendly with in this time and still are, but a curtain that would be pulled around when the docs or nurses were doing something with him. So the time comes and Doc R. comes in for the final check to discharge Tim. He is a slightly built, soft spoken, kind man but has a quick wit. So I POINT to the sentence on the printout and ask him when this is lifted.
I'm thinking GENIUS right?! I pointed, he's just gonna give us the day. Mission accomplished! Well he immediately breaks into a broad grin and says "let me explain." OH CRAP. So he starts to explain why it is banned. I'm thinking, I know exactly why it is banned, I didn't ask that. Just give me the day doc! Now I'm trying to figure out how to interrupt this without being rude.
So as he is talking about how low Tim's platelets are, he says, "there is a certain amount of trauma involved in that activity." So seeing my chance I say, "Doc, we've been together 22 years,
there ain't no trauma going on at this point." Then, Mr. macho TIM says to him, "Doc it's been awhile, trust me, there's gonna be some trauma." Damn. Now by this time, we are laughing. I know that our new friends are hearing this. I could smack Tim for ruining my kibash on this AND "awhile" GIVE ME A BREAK. It's only been this 2 weeks we've been in here for Pete's sake. JEEZ! Now after Tim's statement, I'm thinking, "heck maybe they oughta check my damn platelets. I may be in trouble here." So finally the doc ends by saying,
"So, my answer to that question is this. If it's with your wife, then you have to wait until you have 50,000
platelets. If it's with someone other than your wife, I'm sorry but my answer is NEVER."
By this time, the three of us are laughing and I'm thinking our transplant buds must all be suppressing laughter. So much for
this private conversation. This doctor really is the greatest guy though(extra points from the wife for that last statement) and I guess we could all use a laugh anyway. It was a memorable way to end Tim's transplant no doubt. The P.S. to this is that, a few days later, we went back for
the follow-up check-up and to have his hickman removed. Unfortunately, due to a snafu with Tim's stem cells that we did not hear about till 4 months later, Tim's blood counts were not coming up as they should have. The vascular surgeon pulled his hickman anyway despite his cbc only showing 36,000 platelets on board. On the way home, he bled right through the huge packing and his clothes. I had to call the surgeon and go home and stop the bleeding myself and re-dress the wound. If it did not stop, she said we'd have to go back for a platelet infusion. I was ticked. They never should have pulled this thing out that day so I said, to heck with this nooky-ban. If they can pull a catheter out of 2 main arteries with 36K platelets, we
can certainly do the "wild thing" platelets be damned. Game on!
the many candidates for the "nurses of HUMC pin-up calendar." Then, when we checked in, we
were given instructions again in a huge printed booklet. On the first page, it said at
the bottom in bold capital letters ABSOLUTELY NO SEXUAL RELATIONS. I knew about this,
as did Tim I believe, and honestly, I did not think it would be an issue with the nausea and all.
Well my hubby must be the only man who could take that bottle of napalm, be nauseous and weak, and still follow me around the condo looking for some action. I guess having time to kill and no kid around to worry about were the main reasons. I held out though(not my normal M.O.) while he told me many times, in words I won't report here, what he thought of
this Nooky ban. Actually, I'm not that strong. I purposely made sure we had no birth control method on hand and that's the whole reason I could hold out. Tim persisted and said, "do you actually think any of my swimmers survived that chemo?!" Now that's a line you don't hear everyday. Poor Tim, his "fellas" were flaming red one day from thrush and blue the next. ;o) On Tim's last day in transplant, I tried to think of how I could ask the transplant doc privately when we were allowed to end this ban. You see, every day from about 8 or 9 in the morning till about 5 at night, we were in a "transplant day room" at the cancer center. Tim would be in a lounge chair
and me in a chair by him and there was nothing separating us from the nurses' desk or the other transplant patients , who we had become friendly with in this time and still are, but a curtain that would be pulled around when the docs or nurses were doing something with him. So the time comes and Doc R. comes in for the final check to discharge Tim. He is a slightly built, soft spoken, kind man but has a quick wit. So I POINT to the sentence on the printout and ask him when this is lifted.
I'm thinking GENIUS right?! I pointed, he's just gonna give us the day. Mission accomplished! Well he immediately breaks into a broad grin and says "let me explain." OH CRAP. So he starts to explain why it is banned. I'm thinking, I know exactly why it is banned, I didn't ask that. Just give me the day doc! Now I'm trying to figure out how to interrupt this without being rude.
So as he is talking about how low Tim's platelets are, he says, "there is a certain amount of trauma involved in that activity." So seeing my chance I say, "Doc, we've been together 22 years,
there ain't no trauma going on at this point." Then, Mr. macho TIM says to him, "Doc it's been awhile, trust me, there's gonna be some trauma." Damn. Now by this time, we are laughing. I know that our new friends are hearing this. I could smack Tim for ruining my kibash on this AND "awhile" GIVE ME A BREAK. It's only been this 2 weeks we've been in here for Pete's sake. JEEZ! Now after Tim's statement, I'm thinking, "heck maybe they oughta check my damn platelets. I may be in trouble here." So finally the doc ends by saying,
"So, my answer to that question is this. If it's with your wife, then you have to wait until you have 50,000
platelets. If it's with someone other than your wife, I'm sorry but my answer is NEVER."
By this time, the three of us are laughing and I'm thinking our transplant buds must all be suppressing laughter. So much for
this private conversation. This doctor really is the greatest guy though(extra points from the wife for that last statement) and I guess we could all use a laugh anyway. It was a memorable way to end Tim's transplant no doubt. The P.S. to this is that, a few days later, we went back for
the follow-up check-up and to have his hickman removed. Unfortunately, due to a snafu with Tim's stem cells that we did not hear about till 4 months later, Tim's blood counts were not coming up as they should have. The vascular surgeon pulled his hickman anyway despite his cbc only showing 36,000 platelets on board. On the way home, he bled right through the huge packing and his clothes. I had to call the surgeon and go home and stop the bleeding myself and re-dress the wound. If it did not stop, she said we'd have to go back for a platelet infusion. I was ticked. They never should have pulled this thing out that day so I said, to heck with this nooky-ban. If they can pull a catheter out of 2 main arteries with 36K platelets, we
can certainly do the "wild thing" platelets be damned. Game on!
Monday, October 5, 2009
A funny thing happened on the way to the cancer center
I have heard some hysterical stories on blogs I follow that happened during treatment or
transplants for MM. I just started following a blog of a young guy who is starting treatment
and his wife posted a shot of him in his hanes showing his BMB site and jokingly he said maybe he would attract more blog followers posting pix of his butt. It's a fair bet. I've seen the picture.
It got me to thinking (and commenting on his blog) about the ICU nurse who came up to tell me my husband had a cute ass after his first BMB. My husband has gotten more than his share of TLC due to being young and pretty darn cute as I'm sure this guy will too. But back to the funny stories, here's a throwdown for any of y'all who read this blog to share your funniest or most embaressing story. I know MM is serious business but these light moments I read about courtesy of my fellow MM caregivers or patients always bring a much needed guffaw out of me.
So the first one that pops into my mind happened during Tim's transplant. I have said before that the transplant dept. at HUMC is loaded with some of the hottest nurses. I'd like to meet the man that does the hiring there. I mean, give a worn out wife a break with this will ya. I actually told an older gent at a support group meeting once who was on the fence about doing a transplant to go meet the nurses there and he'll be off the fence and signing up in a heartbeat. Luckily, the nurses were all really nice too, even the one with the breathy, squeaky, happy birthday Mr. President Marilyn voice(even if her voice did raise the hairs on the back of my neck.) Tim, being the youngest, buffest patient in the transplant
day room those weeks, got lots of attention. He seemed to be surrounded by these gals everytime I got back from visiting our daughter. So to explain this event, I'll have to tread lightly lest I make y'all think I'm brash or lacking in class. Tim acquired an affliction that I believe was caused by the strong antibacterial soap they made him shower with daily. I believe it was a thrush type reaction and it hit him in his private region. In layman's terms, he had "GREAT BALLS OF FIRE." So much for treading lightly. :o) I reported this to his nurse after he spent the whole night in pain and VERY irritated. She reported it, by phone, to the woman doctor who was doing rounds that day. The doctor tells the nurse to inspect aforementioned B's-O-F before she will prescribe something. Now, just to prove to me that there is a God, Tim's nurse that day was a very nice but "not stripper material by a long shot" woman that I liked immensely. I felt so sorry for her. She turned beet red and broke into an absolute flop sweat. As for Tim, he was not bothered by this at all. I couldn't figure out if this should have worried me or not. If I was told I had to flash some male nurse so he could inspect my hoo hah, I think I would be the one in a flop sweat. I am
not a man though and as far as I know, Tim had not had a new audience for that area in 22 years. To make matters worse, to save an unnecessary walk to the john all hooked up to an IV pole, she told Tim to just wait until he had to pee next so we all had a good long time to think about this which was most upsetting for this blushing nurse. When she and Tim finally went off to the bathroom together, I jokingly said to them, "if you're not out in 5 minutes, I'm coming in after ya." Someone pointed out later that a lot can happen in 5 minutes. Good point. Well we finally got the nystatin powder. Problem was Tim was not allowed to go near anything like that as he could have a problem if he breathed it into his lungs. He had to mask up and I got to do the
honors when we got back to the condo that night. He said, "sorry." I said, "are you kidding, if I didn't know I was gonna get to give you showers and see you naked all the time, I wouldn't have signed up for this transplant caregiver stuff. These are the PERKS." I'm not sure if this reads all that funny but it was pretty darn hysterical for us. Stay tuned for the "when do we get to have
sex?" talk we had with Tim's transplant doctor on discharge day. Maybe I am brash. ;o) If you are going for a transplant, I will tell you what they tell all women about to give birth. Check your modesty at the door.
transplants for MM. I just started following a blog of a young guy who is starting treatment
and his wife posted a shot of him in his hanes showing his BMB site and jokingly he said maybe he would attract more blog followers posting pix of his butt. It's a fair bet. I've seen the picture.
It got me to thinking (and commenting on his blog) about the ICU nurse who came up to tell me my husband had a cute ass after his first BMB. My husband has gotten more than his share of TLC due to being young and pretty darn cute as I'm sure this guy will too. But back to the funny stories, here's a throwdown for any of y'all who read this blog to share your funniest or most embaressing story. I know MM is serious business but these light moments I read about courtesy of my fellow MM caregivers or patients always bring a much needed guffaw out of me.
So the first one that pops into my mind happened during Tim's transplant. I have said before that the transplant dept. at HUMC is loaded with some of the hottest nurses. I'd like to meet the man that does the hiring there. I mean, give a worn out wife a break with this will ya. I actually told an older gent at a support group meeting once who was on the fence about doing a transplant to go meet the nurses there and he'll be off the fence and signing up in a heartbeat. Luckily, the nurses were all really nice too, even the one with the breathy, squeaky, happy birthday Mr. President Marilyn voice(even if her voice did raise the hairs on the back of my neck.) Tim, being the youngest, buffest patient in the transplant
day room those weeks, got lots of attention. He seemed to be surrounded by these gals everytime I got back from visiting our daughter. So to explain this event, I'll have to tread lightly lest I make y'all think I'm brash or lacking in class. Tim acquired an affliction that I believe was caused by the strong antibacterial soap they made him shower with daily. I believe it was a thrush type reaction and it hit him in his private region. In layman's terms, he had "GREAT BALLS OF FIRE." So much for treading lightly. :o) I reported this to his nurse after he spent the whole night in pain and VERY irritated. She reported it, by phone, to the woman doctor who was doing rounds that day. The doctor tells the nurse to inspect aforementioned B's-O-F before she will prescribe something. Now, just to prove to me that there is a God, Tim's nurse that day was a very nice but "not stripper material by a long shot" woman that I liked immensely. I felt so sorry for her. She turned beet red and broke into an absolute flop sweat. As for Tim, he was not bothered by this at all. I couldn't figure out if this should have worried me or not. If I was told I had to flash some male nurse so he could inspect my hoo hah, I think I would be the one in a flop sweat. I am
not a man though and as far as I know, Tim had not had a new audience for that area in 22 years. To make matters worse, to save an unnecessary walk to the john all hooked up to an IV pole, she told Tim to just wait until he had to pee next so we all had a good long time to think about this which was most upsetting for this blushing nurse. When she and Tim finally went off to the bathroom together, I jokingly said to them, "if you're not out in 5 minutes, I'm coming in after ya." Someone pointed out later that a lot can happen in 5 minutes. Good point. Well we finally got the nystatin powder. Problem was Tim was not allowed to go near anything like that as he could have a problem if he breathed it into his lungs. He had to mask up and I got to do the
honors when we got back to the condo that night. He said, "sorry." I said, "are you kidding, if I didn't know I was gonna get to give you showers and see you naked all the time, I wouldn't have signed up for this transplant caregiver stuff. These are the PERKS." I'm not sure if this reads all that funny but it was pretty darn hysterical for us. Stay tuned for the "when do we get to have
sex?" talk we had with Tim's transplant doctor on discharge day. Maybe I am brash. ;o) If you are going for a transplant, I will tell you what they tell all women about to give birth. Check your modesty at the door.
Tuesday, September 29, 2009
navigating life's highways
On Sunday, we went up into New York state to celebrate my niece's 7th birthday. My parents
were sick so Tim and I offered to pick up my niece's gifts and bring them to the party. It added
45 minutes to our trip but if we didn't, my mom intended to drive to our house and back to drop
them off. I normally take back roads to my parents' house but to save time(not really) and try to
get Olivia from point A to B to C without carsickness and medication that makes her grouchy, I
took the highways. NOT a good call. It was raining and there was some crazy phenomenon going
on on route 80. I always drive slower in the rain especially after hydroplaning in Vermont one time driving my husband's old monster-tired bronco. TRES scary. So I am driving down route 80 and we see an empty SUV that was resting along the curb backwards. Then we see cops at 2 sites. One of which I was not sure of the reason but the other was another accident. Then we see yet another car on the side of the road. I started to tell Tim and Olivia of the time 20 plus years ago when I saw a kid in a small car come onto a highway and quickly cut across 3 lanes of traffic right in front of me only to hit an oil spot or something and he spun around and wound up facing the wrong way in the fast lane of another crazy highway near the one I was on. I'll never forget the look on his face. Just as I finish this story, the SUV 2 spots ahead of me begins to fishtail. He loses control and starts spinning all over the highway. At one point, he almost flipped over and he just missed hitting the curb 2 lanes from where he started. He got back going straight and by this time, I knew there was something wrong with this road. I backed
off the gas even more and started white knuckling it. As I passed the truck that did this, I saw that the man driving was stunned and the woman in the passenger seat was holding her head in her hands obviously quite upset. Just a few seconds later, a large car behind me spun out and started going across lanes of traffic circling as he went and crashed into the curb or guardrail on the shoulder of the road. OK, now this is insane. If it had not been my niece's b-day, Olivia wanted us to take her to a nascar race in Delaware and here we were feeling like we were driving in one ourselves with cars spinning out left and right. I pulled into the slow lane and backed it down even further. I prayed to make it to the exit and wondered if this could be oil rising up with this rain or what. Years ago I was told by a southern California guy that when it rains, their
roads turn to oil slicks because of the build up that results from so little rain and he said accidents are very common. That was the only way I could explain what we saw this day. It was scary. We got to my mom's safely and Tim took over driving to my sister's with me watching the
speedometer and yelling if he went too fast. I wondered if we would hear about this on the news and sure enough, it made the paper yesterday. There was a total of 43 accidents on that stretch of road but they blamed it on speeding drivers in the rain. Not true. I don't know why we made it through unscathed. I thought back a few years when I got new tires for the mommy van. I told the guy, "I don't want the cheepest tires you have for this vehicle. I want the ones you would put on it if it were your wife's car." Tim was with me and said "Wait a minute, you don't know how much he likes his wife." I said, "OK then give me the tires you would put on your own car." I think it's crazy to save money on tires. I told the guy that I wanted the best rain handling tires he had for my car. Maybe that was why this didn't happen to us on Sunday. I thought too of all the little things in life that change it's course so drastically, like timing. The two cars that had just spun out right near me somehow did it when there were not cars in the lanes that they spun across. We ourselves should not have even been on this road were it not for Tim saying we would do this favor. We tread a thin line all of our lives between life and death, good times or
catastrophe. I knew as I drove down that highway that we could easily be next and it might not end as well as the 2 I'd just witnessed. I also felt a little bit like I have felt about Tim's remission and his MM battle. I know several people who have relapsed and others, that I know from blogs or the acor list, who have died. For the last 16 months we have been just white knuckling it and trying to stay straight and in control while all around us others are spinning out and losing their sense of control. You don't know why things happen as they do but you are painfully aware of your vulnerability in this process. Life is so random. It changes in the blink of an eye. Everytime you get in your car, a zillion stars align that either get you to your destination in one piece or not. Every second is another chance for the path of your life to change
course dramatically. We are all faced with the same exact risks. I applaud those people who can
live their life without ruining it with the "what if " disease that I have had for years. Being a worry wart may have saved my ass a few times but it's also ruined my chance at real enjoyment at others. I know that I will be staying the heck off route 80 for awhile. Why push it? I sent a thankyou heavenbound when we made it to our destination and hoped that everyone else on route 80 that day at least stayed in one piece. Man, life is risky. I heard a quote one time that said something to the effect of, "you can't be so afraid of dying that you don't start living." I guess it's another one of life's "fine lines." I guess somewhere there is the perfect balance between care-free and careful. I haven't found it so I keep praying, being grateful and worrying,
not exactly in that order.
were sick so Tim and I offered to pick up my niece's gifts and bring them to the party. It added
45 minutes to our trip but if we didn't, my mom intended to drive to our house and back to drop
them off. I normally take back roads to my parents' house but to save time(not really) and try to
get Olivia from point A to B to C without carsickness and medication that makes her grouchy, I
took the highways. NOT a good call. It was raining and there was some crazy phenomenon going
on on route 80. I always drive slower in the rain especially after hydroplaning in Vermont one time driving my husband's old monster-tired bronco. TRES scary. So I am driving down route 80 and we see an empty SUV that was resting along the curb backwards. Then we see cops at 2 sites. One of which I was not sure of the reason but the other was another accident. Then we see yet another car on the side of the road. I started to tell Tim and Olivia of the time 20 plus years ago when I saw a kid in a small car come onto a highway and quickly cut across 3 lanes of traffic right in front of me only to hit an oil spot or something and he spun around and wound up facing the wrong way in the fast lane of another crazy highway near the one I was on. I'll never forget the look on his face. Just as I finish this story, the SUV 2 spots ahead of me begins to fishtail. He loses control and starts spinning all over the highway. At one point, he almost flipped over and he just missed hitting the curb 2 lanes from where he started. He got back going straight and by this time, I knew there was something wrong with this road. I backed
off the gas even more and started white knuckling it. As I passed the truck that did this, I saw that the man driving was stunned and the woman in the passenger seat was holding her head in her hands obviously quite upset. Just a few seconds later, a large car behind me spun out and started going across lanes of traffic circling as he went and crashed into the curb or guardrail on the shoulder of the road. OK, now this is insane. If it had not been my niece's b-day, Olivia wanted us to take her to a nascar race in Delaware and here we were feeling like we were driving in one ourselves with cars spinning out left and right. I pulled into the slow lane and backed it down even further. I prayed to make it to the exit and wondered if this could be oil rising up with this rain or what. Years ago I was told by a southern California guy that when it rains, their
roads turn to oil slicks because of the build up that results from so little rain and he said accidents are very common. That was the only way I could explain what we saw this day. It was scary. We got to my mom's safely and Tim took over driving to my sister's with me watching the
speedometer and yelling if he went too fast. I wondered if we would hear about this on the news and sure enough, it made the paper yesterday. There was a total of 43 accidents on that stretch of road but they blamed it on speeding drivers in the rain. Not true. I don't know why we made it through unscathed. I thought back a few years when I got new tires for the mommy van. I told the guy, "I don't want the cheepest tires you have for this vehicle. I want the ones you would put on it if it were your wife's car." Tim was with me and said "Wait a minute, you don't know how much he likes his wife." I said, "OK then give me the tires you would put on your own car." I think it's crazy to save money on tires. I told the guy that I wanted the best rain handling tires he had for my car. Maybe that was why this didn't happen to us on Sunday. I thought too of all the little things in life that change it's course so drastically, like timing. The two cars that had just spun out right near me somehow did it when there were not cars in the lanes that they spun across. We ourselves should not have even been on this road were it not for Tim saying we would do this favor. We tread a thin line all of our lives between life and death, good times or
catastrophe. I knew as I drove down that highway that we could easily be next and it might not end as well as the 2 I'd just witnessed. I also felt a little bit like I have felt about Tim's remission and his MM battle. I know several people who have relapsed and others, that I know from blogs or the acor list, who have died. For the last 16 months we have been just white knuckling it and trying to stay straight and in control while all around us others are spinning out and losing their sense of control. You don't know why things happen as they do but you are painfully aware of your vulnerability in this process. Life is so random. It changes in the blink of an eye. Everytime you get in your car, a zillion stars align that either get you to your destination in one piece or not. Every second is another chance for the path of your life to change
course dramatically. We are all faced with the same exact risks. I applaud those people who can
live their life without ruining it with the "what if " disease that I have had for years. Being a worry wart may have saved my ass a few times but it's also ruined my chance at real enjoyment at others. I know that I will be staying the heck off route 80 for awhile. Why push it? I sent a thankyou heavenbound when we made it to our destination and hoped that everyone else on route 80 that day at least stayed in one piece. Man, life is risky. I heard a quote one time that said something to the effect of, "you can't be so afraid of dying that you don't start living." I guess it's another one of life's "fine lines." I guess somewhere there is the perfect balance between care-free and careful. I haven't found it so I keep praying, being grateful and worrying,
not exactly in that order.
Tuesday, September 15, 2009
I don't get it!!!!!!!!!!!!!!
I was coming home from dropping Olivia off at school today and I hear on the radio that the Ukraine is not going to allow Elton John and his partner to adopt a 14 month old orphan with
HIV. The reasons are that you cannot be more than 45 years older than the child(I read just now on the web that Elton is 62 but his partner is 46) but the REAL reason is that they refuse to recognize that gays are married and you must be married to adopt(translated, you can't be gay). I just can't get my brain around some of these adoption rules. I think all adoptions should be looked at on a case by case basis. You have to think of the alternative for this poor kid.
I mean, what rocket scientist thinks that he is better off in an orphanage instead of
with 2 men in a LONG term devoted relationship? And I hate to bring money into it but this child does have a serious illness. The Ukraine folks admit they have a hard time getting people to adopt their sick orphans and lets face it, Elton has more money than he knows what to do with
and could get this kid the best medical care in the world as well as opportunities that he couldn't even dream of. I saw a TV program not long ago that showed the unimaginable mental problems that a lot of the adopted kids from this area have due to conditions
in orphanages. They have "failure to bond" issues and things I've never heard of. In many cases,
the families that adopted them have had to give the kids back. They cannot cope or the adopted kid is trying to kill their other child. One family on this program did not give the girl back but this angry, violent child has ruined their quality of life completely and they've spent enormous amounts of money trying to get help for her. The longer they spend in orphanages, the greater the chance that they will not develop normally and be plagued with problems probably for life.
There are many loving homes out there. They may be gay couples, they may be single but I sure think if they have the dedication, desire, and the financial ability, it sure beats having a child stuck in the system. We have a lot of gay couples in our neighborhood. They are all really nice and fit in wonderfully around here. To be honest, there a few straight couples that we all wouldn't mind seeing "for sale" signs on their lawns. Being gay does not stop you from being a loving parent. Hell, if Elton wants to adopt me, where do I sign. I know ALL his songs even every word to Captain Fantastic and the Brown Dirt Cowboy. I don't understand what the darn song means
but I KNOW the words. Can I have my own horse? PLLLLEEEEAAAASSSSEEEEEE!
HIV. The reasons are that you cannot be more than 45 years older than the child(I read just now on the web that Elton is 62 but his partner is 46) but the REAL reason is that they refuse to recognize that gays are married and you must be married to adopt(translated, you can't be gay). I just can't get my brain around some of these adoption rules. I think all adoptions should be looked at on a case by case basis. You have to think of the alternative for this poor kid.
I mean, what rocket scientist thinks that he is better off in an orphanage instead of
with 2 men in a LONG term devoted relationship? And I hate to bring money into it but this child does have a serious illness. The Ukraine folks admit they have a hard time getting people to adopt their sick orphans and lets face it, Elton has more money than he knows what to do with
and could get this kid the best medical care in the world as well as opportunities that he couldn't even dream of. I saw a TV program not long ago that showed the unimaginable mental problems that a lot of the adopted kids from this area have due to conditions
in orphanages. They have "failure to bond" issues and things I've never heard of. In many cases,
the families that adopted them have had to give the kids back. They cannot cope or the adopted kid is trying to kill their other child. One family on this program did not give the girl back but this angry, violent child has ruined their quality of life completely and they've spent enormous amounts of money trying to get help for her. The longer they spend in orphanages, the greater the chance that they will not develop normally and be plagued with problems probably for life.
There are many loving homes out there. They may be gay couples, they may be single but I sure think if they have the dedication, desire, and the financial ability, it sure beats having a child stuck in the system. We have a lot of gay couples in our neighborhood. They are all really nice and fit in wonderfully around here. To be honest, there a few straight couples that we all wouldn't mind seeing "for sale" signs on their lawns. Being gay does not stop you from being a loving parent. Hell, if Elton wants to adopt me, where do I sign. I know ALL his songs even every word to Captain Fantastic and the Brown Dirt Cowboy. I don't understand what the darn song means
but I KNOW the words. Can I have my own horse? PLLLLEEEEAAAASSSSEEEEEE!
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