Yesterday was Tim's 3 month check-up. This one was to set the tone for our summer, as well as our employee's wedding, which we are flying to Fort Lauderdale for in a month. Well, it was not what I wanted, but kinda what I expected. His Kappa number had been slowly creeping up, though still in the normal range. In Jan, it was 18+ with a the range ending at 19.4. This time it was out of range at 26+. His m-spike went from .15 to .20. IGG still in normal range but up a bit too. I, of course, am thinking relapse. His doctor says that the shingles infection raised all his immunoglobulins and so the bad will bump up with the good. He is not concerned. The Kappa/Lambda ratio actually is still in range but, I dunno, to me, it can't be good when your Kappas go out of range. As I've said before, I've been told that that is the first sign of relapse. The doctor describes his numbers as moving "glacially slow." He still said 3 months is fine for next appt. and said don't worry. Not really an option for me, but, nothing to be done about it anyway. What I do have to do though is kick myself in the arse and get moving and caught up around my house. Still haven't done a lot of things I said I was gonna do these last few years. Feel stuck in a rut. I have to get more organized because searching for important papers and such will not be easy when/if Tim goes back on treatment and I am in full caregiver mode again.
On other news, Liv is in the middle of her softball season. It has been an eye opening experience. My brother-in-law warned me that high school sports would not be as fun as recreation league sports. Boy, was he right. I thought the guy who ran the softball program seemed so nice. He's not. He tries to be charming, but, on the field, he's a different guy. We've lost girls from the program who quit because of him and some of the girls playing for the varsity team he heads up, can't stand him. His wife coaches JV and we have a freshman coach, a nice man I know well from church. They all have to follow the orders from this top guy though and the things he does are just wrong. We are not happy that our daughter is being "over-pitched" and being left as the only pitcher for both the freshman and JV team, while he takes 3 pitchers with him to every varsity game. OH, and he already took our good freshman catcher to varsity, leaving us with a bad one, that he will now take to all JV games played on the same day as freshman games so Liv will pitch for frosh(is the only freshman who can pitch) and will have a girl catching who has never done it before. Not only is this not fair, as he takes 3 catchers with him to his varsity games too, but this idiot is going to get someone hurt. You do not start a girl catching, at the high school level, who has never caught before, if you can help it. Liv does not throw super fast, but she does take lessons and throws 40+ mph and you also have a bat swinging in your face as you are catching that ball. We do not have enough girls, or pitching, for 3 teams. He shoulda combined the freshman and JV team. Anyway, with cancellations, we avoided Liv playing too many games this past week, but, if he tries to make her pitch 3 or 4 games in a 5 or 6 day stretch, I'm gonna have to put my foot down. It's too much on her arm, and too much pressure for a 14 y-o. Aside from one game, when she was exhausted, she has pitched great. She has a lot of strikeouts, as well as caught pop-ups and throw outs at bases. In 2 games, where she pitched 6 innings, she made 12 of the 18 outs. The other day, we played 3 innings in the rain. She struck out 6, and threw out 2, making 8 of the 9 outs herself. But, the poor kid wants to play other positions, is sick of just pitching. Only other girl who can pitch, albeit badly, was benched for going on a school trip, and now is out for medical reasons. I never relax when my kid is pitching. Would rather her play other positions too. Gotta just take things one day at a time.
Playing another JV game today with our freshman team, which just stinks, especially since we have 3 girls who never played ball before. OY! I hate this, but I'll be glad when we're thru this season, and I don't know if she'll want to continue these next few years after seeing how mean the head guy is. I don't want her pitching for him at the varsity level. He is awful to his girls. Can't stand coaches who can't leave their egos off the field and put the kids first. REALLY can't stand it.
Anyway, that's about it. Making vacation plans. May, wedding and vacation in Florida. July will see us at our yearly trek to Cape May, with my sister Cathy and her family coming too this year, which will be a treat. Then, it looks like we will not be going to VT or NH this August, but back to Chincoteague instead. Tim just loves that place now. I'm surprised. There is NO night life and it's just a small little community with not much going on, but, give that boy a beach and he's happy.
Life's a beach! ;o)
Happy Spring!
Saturday, April 20, 2013
Monday, April 8, 2013
The next time I see that Easter Bunny...............
I'm gonna get him in my cross-hares and shoot the sumbitch. Well, again, Easter bad luck rears its ugly head. As a kid, I hated this holiday because we always got the stomach flu around that time.
In 2008, Tim got a horrible stomach bug for Easter. This year, he went to the hospital Easter Sunday with a bad case of disseminated shingles, which is fancy talk for shingles that went systemic, so it's like having the shingles and the chicken pox version of the virus at the same time. As Tim would say, "go big or go home." I saw
a bright red patch on the back of his leg Sat. We had our niece's(and Goddaughter's) communion service that night. When Tim got dressed for bed, he had blemishes on his body and I gave him an acyclovir pill from the old stash just in case. By morning, I knew. Off to the ER cause doc's aren't open on Easter Sunday. They transferred him via ambulance to the main campus where his onc's are
and he was put on an acyclovir drip. They had no private rooms open in the entire hospital(he was in an isolation room of the ER 'cause it's contagious) and he was stuck in an expanded area of the ER since 3:30 Monday morning. NO private bathroom. He's sick and immunocompromised and he's using the same bathroom everyone in the ER is using. Walked thru a puddle of urine in his socks Monday night.
There is no cell phone service in this ER. Half underground and they have one phone they let patients use for a short time. He got really sick Monday night. Bad headache and nausea. Tried to get them to let him use the phone for 3 hours to get me. They were not bringing him meds, delivered a cream that was ordered for him at noon at MIDNIGHT. Waiting hours for tylenol. I had only 4 hours sleep the night before and he called me at 12:15 Monday night ready to get up and walk out of the hospital. I jumped in the car and raced down there. Banged some heads, as diplomatically as possible. Called the on-call doc at the cancer center and said, "I want him in the ICU or something. He's at risk for encephelitis, has a headache and nausea, and they're not taking care of him in the ER and he's walking thru other people's urine to use a dirty, germ-filled bathroom. NOT ACCEPTABLE.
The doc tried but there was just no rooms in that hospital to be had. They are expanding, but not fast enough. I got him in an isolation room in the ER before I went back home at 3 am so he at least had his own bathroom. I think that was only because a patient died. UGH. They cleaned the room and then I went in there afterward with my antibacterial wipes and did it again. On Tuesday evening, they finally got him a room. It was the top floor, corner suite overlooking the NYC skyline and the runway for a small, local airport. It was a great room, best in the hospital, no doubt, crazy view, and the nurses were falling all over themselves to be nice to him. Monday night, he's ready to walk outta there, now, he didn't want to come home. Full menu to order whatever he wanted to eat. I mean, Jeez, he doesn't get this at home! On Wed. I went there to get him showered up. I thought, make him look good for when the infectious disease doc gets here and maybe he'll get sprung. Well, it worked, though I'm sure it was just that his lesions had all scabbed up. They released him and we had our daughter's first JV softball game to get to so they did the fastest discharge job ever. He spent 4 more days on high dose Valtrex and will now take 1-400mg. acyclovir pill for a very long time. It was a scary thing. I did a search on disseminated shingles and it can attack your organs, liver, lungs, brain. GREAT. It was an exhausting week, running back and forth to the hospital, getting Liv where she needed to be with school and softball, keeping the home fires burning and fielding business calls, etc.
Glad it's over. Tim feels OK but is very tired. He is VERY busy at work and this just jammed him up even more. He went to work on Friday, after resting up on Thurs. and doing phone calls, but it's exhausting for him. Like Lorna says, why can't we hit the lottery, so that we at least don't have to worry about money on top of worrying about MM. It's only fair, doncha think? So, that's the latest chapter in our MM journey. Not a pleasant one, but, I'm always saying, "it could be worse." I try to be grateful for the things that do go right. The medication worked, he recovered quickly, he seems to have no sign of post-herpatic neuralgia. Now, if our daughter doesn't come down with chicken pox in these next 3 weeks, I will be very grateful! And, if spring would just get here, maybe my mood will be better, cause us Jersey folk REALLY need to feel some sunshine and warmth around here.
In 2008, Tim got a horrible stomach bug for Easter. This year, he went to the hospital Easter Sunday with a bad case of disseminated shingles, which is fancy talk for shingles that went systemic, so it's like having the shingles and the chicken pox version of the virus at the same time. As Tim would say, "go big or go home." I saw
a bright red patch on the back of his leg Sat. We had our niece's(and Goddaughter's) communion service that night. When Tim got dressed for bed, he had blemishes on his body and I gave him an acyclovir pill from the old stash just in case. By morning, I knew. Off to the ER cause doc's aren't open on Easter Sunday. They transferred him via ambulance to the main campus where his onc's are
and he was put on an acyclovir drip. They had no private rooms open in the entire hospital(he was in an isolation room of the ER 'cause it's contagious) and he was stuck in an expanded area of the ER since 3:30 Monday morning. NO private bathroom. He's sick and immunocompromised and he's using the same bathroom everyone in the ER is using. Walked thru a puddle of urine in his socks Monday night.
There is no cell phone service in this ER. Half underground and they have one phone they let patients use for a short time. He got really sick Monday night. Bad headache and nausea. Tried to get them to let him use the phone for 3 hours to get me. They were not bringing him meds, delivered a cream that was ordered for him at noon at MIDNIGHT. Waiting hours for tylenol. I had only 4 hours sleep the night before and he called me at 12:15 Monday night ready to get up and walk out of the hospital. I jumped in the car and raced down there. Banged some heads, as diplomatically as possible. Called the on-call doc at the cancer center and said, "I want him in the ICU or something. He's at risk for encephelitis, has a headache and nausea, and they're not taking care of him in the ER and he's walking thru other people's urine to use a dirty, germ-filled bathroom. NOT ACCEPTABLE.
The doc tried but there was just no rooms in that hospital to be had. They are expanding, but not fast enough. I got him in an isolation room in the ER before I went back home at 3 am so he at least had his own bathroom. I think that was only because a patient died. UGH. They cleaned the room and then I went in there afterward with my antibacterial wipes and did it again. On Tuesday evening, they finally got him a room. It was the top floor, corner suite overlooking the NYC skyline and the runway for a small, local airport. It was a great room, best in the hospital, no doubt, crazy view, and the nurses were falling all over themselves to be nice to him. Monday night, he's ready to walk outta there, now, he didn't want to come home. Full menu to order whatever he wanted to eat. I mean, Jeez, he doesn't get this at home! On Wed. I went there to get him showered up. I thought, make him look good for when the infectious disease doc gets here and maybe he'll get sprung. Well, it worked, though I'm sure it was just that his lesions had all scabbed up. They released him and we had our daughter's first JV softball game to get to so they did the fastest discharge job ever. He spent 4 more days on high dose Valtrex and will now take 1-400mg. acyclovir pill for a very long time. It was a scary thing. I did a search on disseminated shingles and it can attack your organs, liver, lungs, brain. GREAT. It was an exhausting week, running back and forth to the hospital, getting Liv where she needed to be with school and softball, keeping the home fires burning and fielding business calls, etc.
Glad it's over. Tim feels OK but is very tired. He is VERY busy at work and this just jammed him up even more. He went to work on Friday, after resting up on Thurs. and doing phone calls, but it's exhausting for him. Like Lorna says, why can't we hit the lottery, so that we at least don't have to worry about money on top of worrying about MM. It's only fair, doncha think? So, that's the latest chapter in our MM journey. Not a pleasant one, but, I'm always saying, "it could be worse." I try to be grateful for the things that do go right. The medication worked, he recovered quickly, he seems to have no sign of post-herpatic neuralgia. Now, if our daughter doesn't come down with chicken pox in these next 3 weeks, I will be very grateful! And, if spring would just get here, maybe my mood will be better, cause us Jersey folk REALLY need to feel some sunshine and warmth around here.
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