I went to a support group meeting the other day. It occurred to me, as it often does, how hard it must be for the MM patients to sit there and hear about people not doing well or passing away. Our group is very small, despite living in a very populated area and our practice having over 300 active patients, but maybe this is a big reason why it is small. Some patients find it very depressing and don't want to sit and talk about MM. Tim is one of them who refuses to dwell on it and would not do the support group thing for that reason. It is scary and heartbreaking for me too, especially as we lose members who have died, but I think this long, stable period of Tim's has succeeded in making me a bit complacent. I feel temporarily removed from the immediate threat of losing him. Though that bout of disseminated shingles, and the fact that his m-spike is creeping up slowly, seems to be snapping me out of that complacency.
Sadly, a friend of mine is on hospice now. This hits particularly close to home for me as he has a daughter that is just a few days older than Olivia, also named what I almost named Olivia. Elizabeth. Craig's story is a heart-wrenching one. He was working in Boston and had an apartment there and would come home to Jersey on the weekends. He got sick and lost consciousness in his apt. When his wife, Leslie, could not get a hold of him, she sent someone from the building to check on him and he was found. He had sepsis and was in organ failure. The first hospital suspected MM. He was transferred to a bigger hospital and, at one time, had 26 different IV's pumping into his body. He wound up with pretty much every hospital borne illness/infection there is and the doctors told his wife with all surety that he was never going to survive. Somehow, he did. She found our doctors down here, the MM specialists, and wanted him transported. When our docs saw his records, they never thought he would make it out of the hospital in Boston alive. He did, and was transported back here when he was stable enough to be ambulanced down. He eventually had a transplant, which didn't work for long, and has been on chemo ever since. In between, he worked on his "bucket list", taking trips and buying a Porsche convertible. He has been close to death 2 other times since then, the last time being February, when he had a respiratory infection that led to I guess a type of respiratory failure. I found out that one of our docs basically told them to let him go. His wife insisted that they intubate him and put him on a ventilator to help him and see if he could kick the infection. She saved his life. He survived again. Craig is a fighter, and, being only in his 50's, his body is pretty strong. Unfortunately, his MM refused to back down to chemo and when his DNA was checked against the registry for an allo donor, he was told he had a very unique DNA profile and a match could not be found and probably never would. The last time we saw him, I could tell he was very weak and the fight was leaving him. I think he knew. I got an e-mail from his wife 2 weeks ago and he is on hospice at home. I cannot even imagine, despite what we've lived with these last 6 1/2 years, how painful this must be. To add insult to injury, his daughter has significant health issues also and her life has been just a nightmare.
The speaker at our meeting the other day is a woman who runs the central Jersey support group, Paula Van Riper. She has been fighting MM for 14 years and has had so many treatments, including an allo transplant from her brother. Just so many fighters I have met on this journey. The courage I have seen humbles me.
But, when you see someone with young kids that has MM, it is particularly heartbreaking. I've said this before, the fact that our daughter's life did this "180" at only 8 years old is the worst heartache in all this. So damned unfair. So, my admiration goes out to all people fighting MM, cancer, and other illnesses, and my sympathy to them as well, today, especially to Craig, Leslie and Elizabeth. May you feel God's Grace around you.
Sunday, September 22, 2013
Friday, September 6, 2013
Back to school
Well, it's Liv's last week of summer break. She has cheerleading practice every day, and coaches the younger girls 2 to 3 nights a week, so, her REAL summer break ended on 8/12. A shame really, but
that's high school sports. She was just named captain of her cheer squad and is very happy about that. Her first day of school is Monday, the 9th. My massage is scheduled for Tuesday. I am going to see, once again, if I can try to put myself on the priority list. I have been a colossal failure at it for a long time. Problem is, I'm not on anyone else's priority list either, so I feel like a well that's run dry just doing for others and wearing myself out. Lotsa water going out, not much coming back in. I've been in a heckuva funk lately. I don't think it's any one thing, I think it's multiple things. Tim's numbers rising has shook me out of complacency. I recently found out that my father has done NOTHING to obey the doctors' orders from the hospital after my mom's scare back in July. Didn't even fill the darn prescription for the lower dose of Aricept. Then, my sister went over to their house while he was at work and found out that she isn't taking ANY Aricept at all and we don't even know if she realizes it or not. She claims she's taking it. The bottle Cathy found was filled 5 1/2 months ago and is almost full. We asked my dad several times to help her monitor her meds and he never started. So, Cathy had a talk with him and sent him a lengthy e-mail. I was too angry, I would have definitelygiven him a piece of my mind been a quart low in the diplomacy dept. He is avoiding the problem and it's time for him to step up. My mom needs help and care and we live about 50 minutes from them and he has to be the first line of defense. We can help, but we each have our own problems to deal with, we can't do it all. He is dragging his feet on taking family leave and retiring. He's just not doing anything he needs to do for her. UGH!!!
Tim is swamped with work and has turned down an awful lot of jobs, which hurts, but it's so hard to find a kid that wants to work and right now, he is just too busy to train anyone. It's just him and our one employee, who has Crohn's disease, so, like Tim, he has doctor appts. and fatigue to deal with. Tim has been really stressed and tired so that bothers me too. I wish he didn't have to work so hard.
I am about a week away from wrapping up a 3 year stint as treasurer for my church. WOO HOO. It was WAY more work than I was led to believe(our church also runs a school) and I will be glad it's over. As usual, I have a lot of big projects/chores I have to attack around here and am still having a hard time finding the energy and desire to do them. I think a lot of
my funk is based in the fact that I am doing nothing but BUSY work, that never stays done. There is nothing really satisfying about it at all. I've said it before, I wish we could simplify our lives. We live in an expensive area. Taxes around here are very high. Cost of living is just ridiculous. I know we are in no position to move, and I know we won't, but, some days, I just wanna chuck it all and start fresh somewhere else. This month, it will be 28 years since Tim and I got together. We were just kids, 20 and 21 years old. I don't remember what life was like before him and when I think about losing him, I honestly don't think I'll make it. I know that I cannot even imagine how painful it is to lose someone who is half of you.
Next month, it will be 2 years since that argument that split us apart from his family. It shows no sign of healing, and, truth be told, I think we are better off without them. None of them will ever change and we can't let people into our lives who kick us when we're down, repeatedly. It's hard enough to "buck up" with what we're going through without people throwing more pain on the pile. I have not seen or spoken to them since Liv's last softball game in May. They will want to go to see her cheer this fall. I'm civil, but, that's all. It's not fun for Tim and I. We both prefer not having to deal with them.
Still wondering what to do for Tim's 50th birthday in Feb. We'll probably take a trip. I think he would love a party though and it's so awkward. I guess I could just invite all his friends and do a friend party
sans family.
I try very hard to look on the bright side of things. One does not have to look far to see people in worse situations, but, as I told my sister, the truth is, my best day is most people's nightmare and it's really hard to shake that. At church, we have prayer cards that you can write names on and our Pastor reads them aloud during the prayers. I like that they do this. I always write names of people I know who are battling MM or some other cancer. Unfortunately, the list could go on and on. But, I always feel better hearing our whole church pray for these people I care about.
So, that is the tale from here. A new school year, a new beginning, and a "Stella" over here who DEFINITELY needs to get her groove back.
Welcome autumn. Hope it's a groovy season.
that's high school sports. She was just named captain of her cheer squad and is very happy about that. Her first day of school is Monday, the 9th. My massage is scheduled for Tuesday. I am going to see, once again, if I can try to put myself on the priority list. I have been a colossal failure at it for a long time. Problem is, I'm not on anyone else's priority list either, so I feel like a well that's run dry just doing for others and wearing myself out. Lotsa water going out, not much coming back in. I've been in a heckuva funk lately. I don't think it's any one thing, I think it's multiple things. Tim's numbers rising has shook me out of complacency. I recently found out that my father has done NOTHING to obey the doctors' orders from the hospital after my mom's scare back in July. Didn't even fill the darn prescription for the lower dose of Aricept. Then, my sister went over to their house while he was at work and found out that she isn't taking ANY Aricept at all and we don't even know if she realizes it or not. She claims she's taking it. The bottle Cathy found was filled 5 1/2 months ago and is almost full. We asked my dad several times to help her monitor her meds and he never started. So, Cathy had a talk with him and sent him a lengthy e-mail. I was too angry, I would have definitely
Tim is swamped with work and has turned down an awful lot of jobs, which hurts, but it's so hard to find a kid that wants to work and right now, he is just too busy to train anyone. It's just him and our one employee, who has Crohn's disease, so, like Tim, he has doctor appts. and fatigue to deal with. Tim has been really stressed and tired so that bothers me too. I wish he didn't have to work so hard.
I am about a week away from wrapping up a 3 year stint as treasurer for my church. WOO HOO. It was WAY more work than I was led to believe(our church also runs a school) and I will be glad it's over. As usual, I have a lot of big projects/chores I have to attack around here and am still having a hard time finding the energy and desire to do them. I think a lot of
my funk is based in the fact that I am doing nothing but BUSY work, that never stays done. There is nothing really satisfying about it at all. I've said it before, I wish we could simplify our lives. We live in an expensive area. Taxes around here are very high. Cost of living is just ridiculous. I know we are in no position to move, and I know we won't, but, some days, I just wanna chuck it all and start fresh somewhere else. This month, it will be 28 years since Tim and I got together. We were just kids, 20 and 21 years old. I don't remember what life was like before him and when I think about losing him, I honestly don't think I'll make it. I know that I cannot even imagine how painful it is to lose someone who is half of you.
Next month, it will be 2 years since that argument that split us apart from his family. It shows no sign of healing, and, truth be told, I think we are better off without them. None of them will ever change and we can't let people into our lives who kick us when we're down, repeatedly. It's hard enough to "buck up" with what we're going through without people throwing more pain on the pile. I have not seen or spoken to them since Liv's last softball game in May. They will want to go to see her cheer this fall. I'm civil, but, that's all. It's not fun for Tim and I. We both prefer not having to deal with them.
Still wondering what to do for Tim's 50th birthday in Feb. We'll probably take a trip. I think he would love a party though and it's so awkward. I guess I could just invite all his friends and do a friend party
sans family.
I try very hard to look on the bright side of things. One does not have to look far to see people in worse situations, but, as I told my sister, the truth is, my best day is most people's nightmare and it's really hard to shake that. At church, we have prayer cards that you can write names on and our Pastor reads them aloud during the prayers. I like that they do this. I always write names of people I know who are battling MM or some other cancer. Unfortunately, the list could go on and on. But, I always feel better hearing our whole church pray for these people I care about.
So, that is the tale from here. A new school year, a new beginning, and a "Stella" over here who DEFINITELY needs to get her groove back.
Welcome autumn. Hope it's a groovy season.
Sunday, August 18, 2013
Dog days of summer
We are done with our summer vacations. Always a bit depressing. We spent a week in Chincoteague. I rented a house right on the bay that is pet friendly and we brought the dog. It was nice. At first we
were a little dismayed about the house. It had VERY low ceilings on the first floor(these are basically old cottages) and it felt really cramped, but, the bedrooms upstairs had vaulted ceilings and ours had 4 windows that all had views of the bay, and a king-sized bed. I woke up every morning and watched birds and boats out on the bay right from my bed. NICE! I'd never get anything done if I had that kind of view at home.
After a few days, we got over the cramped feeling and the location won us over.
The people there are so friendly, it's hard to come home to the metropolitan area we live in after that.
The house did not have internet so Liv and I were unplugged for most of the week, with the exception of checking e-mail a few times using a free site at an ice cream joint. I think it was a good thing to be "off the grid" for a week. It was a much needed vacation for Tim. They all are. He is having his busiest summer ever and is working weekends and nights trying to stay on schedule. He had the slowest winter he ever had in business, and now, he's had to turn down quite a lot of work because he just cannot get to everybody. He is stressed, and that sucks, but, it's better than not having enough work.
Before we went, we had a 75th birthday party, here at our house, for my dad. That went well. It'll probably be the last big party we have in this family. My mom is not into that kind of attention for herself and her memory is getting really bad. It's so sad. Nothing to be done, I suppose, but just bear it. My father has put in for some family leave. He should just retire, and may have to soon, but I know he is afraid to. He loves his job and is a people person. He did not like being home when he retired the first time. My mom is getting to the point that she should not be alone as much as she is and I know it will be hard for my dad, both to quit his job, and to answer the same questions over and over all day. As for me, I am in the throws of menopause and hot flashing my butt off again this summer. I am tired all the time too and my brain is fuzzy as heck. Gosh, it isn't easy being a woman. Health-wise, Tim is doing well, with the exception of headaches, which I think are all stress related. His last check-up went well. His numbers stayed stable, even went down a smidge. At his prior appt. the doc said the recent shingles outbreak could have jumped them up a bit. That's about all that's new here. Same old, same old. I turned 48 in Chincoteague. I don't know how I got this old. Life just blew by me. Tim turns 50 in February. I don't know what to do for him. How do you have a party with none of his family there? We might take a vacation. None of us have ever been to an "island" so maybe that's what we'll do instead. I hate flying, but, it's his 50th, if that's what he wants, I'll suck it up. I'm also nervous about going to some island. When there are medical problems to consider, there's always the fear that something could happen and you're in this place that doesn't have great medical care. UGH, so hard not to think about all those "what ifs." Oh well, as my sister says, "jump off that bridge when you get to it."
In some way, our summer has already ended. Liv started with cheerleading practice last Monday. She is also coaching for the recreation league again this year so we went right back to schedules and running around, even though there were 4 weeks left before school starts. Not happy about that. High school is a whole other ball game when it comes to being involved in sports. It is a crazy amount of time commitment. Anyway, hope y'all are enjoying your summer.
were a little dismayed about the house. It had VERY low ceilings on the first floor(these are basically old cottages) and it felt really cramped, but, the bedrooms upstairs had vaulted ceilings and ours had 4 windows that all had views of the bay, and a king-sized bed. I woke up every morning and watched birds and boats out on the bay right from my bed. NICE! I'd never get anything done if I had that kind of view at home.
After a few days, we got over the cramped feeling and the location won us over.
The people there are so friendly, it's hard to come home to the metropolitan area we live in after that.
The house did not have internet so Liv and I were unplugged for most of the week, with the exception of checking e-mail a few times using a free site at an ice cream joint. I think it was a good thing to be "off the grid" for a week. It was a much needed vacation for Tim. They all are. He is having his busiest summer ever and is working weekends and nights trying to stay on schedule. He had the slowest winter he ever had in business, and now, he's had to turn down quite a lot of work because he just cannot get to everybody. He is stressed, and that sucks, but, it's better than not having enough work.
Before we went, we had a 75th birthday party, here at our house, for my dad. That went well. It'll probably be the last big party we have in this family. My mom is not into that kind of attention for herself and her memory is getting really bad. It's so sad. Nothing to be done, I suppose, but just bear it. My father has put in for some family leave. He should just retire, and may have to soon, but I know he is afraid to. He loves his job and is a people person. He did not like being home when he retired the first time. My mom is getting to the point that she should not be alone as much as she is and I know it will be hard for my dad, both to quit his job, and to answer the same questions over and over all day. As for me, I am in the throws of menopause and hot flashing my butt off again this summer. I am tired all the time too and my brain is fuzzy as heck. Gosh, it isn't easy being a woman. Health-wise, Tim is doing well, with the exception of headaches, which I think are all stress related. His last check-up went well. His numbers stayed stable, even went down a smidge. At his prior appt. the doc said the recent shingles outbreak could have jumped them up a bit. That's about all that's new here. Same old, same old. I turned 48 in Chincoteague. I don't know how I got this old. Life just blew by me. Tim turns 50 in February. I don't know what to do for him. How do you have a party with none of his family there? We might take a vacation. None of us have ever been to an "island" so maybe that's what we'll do instead. I hate flying, but, it's his 50th, if that's what he wants, I'll suck it up. I'm also nervous about going to some island. When there are medical problems to consider, there's always the fear that something could happen and you're in this place that doesn't have great medical care. UGH, so hard not to think about all those "what ifs." Oh well, as my sister says, "jump off that bridge when you get to it."
In some way, our summer has already ended. Liv started with cheerleading practice last Monday. She is also coaching for the recreation league again this year so we went right back to schedules and running around, even though there were 4 weeks left before school starts. Not happy about that. High school is a whole other ball game when it comes to being involved in sports. It is a crazy amount of time commitment. Anyway, hope y'all are enjoying your summer.
Saturday, July 6, 2013
I'm pretty sure vacations are not supposed to go like this................
So, we did our annual trek to Cape May with my parents for the July 4th week. We left on Monday morning and came home yesterday afternoon(Friday). We try to avoid travelling the Garden State Parkway, or a better name would be "Garden State Parking Lot," on the summer weekends. Last year's trip was rough.
My mom's memory is getting worse quickly and she does not want to go to the beach anymore, preferring so stay by the pool at the motel. She burst into tears one day while we were talking, apparently forgetting that Tim is not cured of his MM. Also, Tim was having neuropathy in his calves and feet and informed me that it had been going on for some time. A depressing vacation, to say the least.
This year, my younger sister came with her husband and 2 kids, 10 and 6. We are trying to get these family trips in while my mom still can and Cathy has wanted to come down with us for a number of years. I was looking forward to redeeming last year's trip. Well, it was not to be. Me and Cathy are very close and crack each other up all the time. The weather was rainy though, Tim and Dad's golf game didn't happen, but we had gotten some beach time in by Wednesday afternoon, after being rained off the beach earlier that day. Wednesday night, we went to a restaurant on the bay called
Harpoon Henry's. We do this every year. They have a little street fair along the bay and fireworks
after sundown. We had to wait for a table so we sat outside by one of the bars and margaritas were abound. Not for me. I am the best designated driver, I don't drink at all and my sister was driving the other car and only had one. Tim and my brother-in-law Chris had several by the time we were done with dinner. After dinner, my mom spent a little while in the ladies' room and we were concerned her meal did not agree with her. My mom likes to eat, a little too much, actually she likes it a lot too much. I didn't eat at all at the restaurants. My stomach has been awful lately so I ate pasta before we went out and just enjoyed the company while everyone else ate.
After the meal, we walked out the side of the restaurant to see the fireworks. It was crowded. This is the only joint on that bay side and the streets were mobbed too. My sister noticed that it appeared my mom was not feeling well. We kept our eyes on her. She and my father were sitting on this little hill right outside the restaurant, next to the sidewalk. She stopped watching the fireworks and was looking down. I walked over and said, "Mom, are you OK?" She is unresponsive. I ask again, and she goes into what I'm pretty sure was a seizure and a stroke also crossed my mind. I yell out for someone to call an ambulance and say. "lay her down." We lay her back and she is out. She stops shaking and is completely motionless. Her skin is cold, like I never felt someone's skin before, and we can't see her breathing. Her face is waxy and we think she is gone. I'm thinking about James Gandolfini, who grew up just a few miles from my house. Tim and I had to drop his truck off for service and drove right past the funeral parlor during Mr. Gandolfini's wake, with all the dang news crews and their cameras all over. I'm thinking, this is it, big meal, heart attack, she's gone, right in front of 3 of her grandkids. I see no signs of life and say, "she needs CPR", and my dad says, "she's having a heart attack." He gives her 1 or 2 chest compressions and she starts vomiting, while unconscious and laying on her back. We roll her onto her side. It was the most horrific thing I've ever been through, with the exception of Tim's diagnosis. I look up and Olivia and my niece and nephew are crying. Cathy is starting to break down, and the stricken look on Tim's face says it all. We all think she is dying right there. A woman yells, "she's catching her breath" and my mom is choking and waking up. I'm asking if anyone is a doctor or medically trained. 2 men wind up checking my mom out, one is checking her carotid pulse, another is asking for a watch with a second hand and a flashlight to take her wrist pulse. I don't think they were doctors, but I wasn't checking credentials at this point. The one on her wrist assures us and my mom that her heart rate is good. They can't get an ambulance through the streets so they load her onto the back of a Polaris in a basket. Turns out, the rig made it through and they transfer her. I tell them my dad must be with her, as her memory is failing and she cannot answer for herself or make decisions so they bring him. My poor mom is a mess and out of it. My sis had my brother-in-law strip off his shirt and give it to my dad as he was a mess too and had to take his off. My little 6 year old nephew thought, OK we're taking off our shirts so he whipped his off too.
(the kid is all for clothing optional time) We now had to fight thru the traffic to get back to the hotel, drop the kids and husbands off, and Cathy jumps in my dad's car(he wanted his car at the hospital) and I jump in our truck and we're off to find the dang hospital. Ambulance then goes past our motel as we are packing clothes for my parents, finding my mom's medications list, and getting ready to leave. Turns out they'd stopped when EMT's arrived to get her on a heart monitor and start an IV. It was 45 minutes from the time this happened until they finally reached the hospital, which was about 15 miles or so from where we were when it happened. I'm driving up the GSP thinking that she might not make it to the hospital. I thought for sure she'd just had a heart attack or stroke. We all did. I know that seizures are common right before someone dies too, so I'm thinking this is really bad. We get to the hospital and things don't look too urgent. We're giving nurses the medications list,
and other information. I look at her monitor and think, "DANG, I bet I wouldn't even look that good on a monitor right now." Heart rate was fine, BP pretty darn good, oxygen sats good. A while later, the most gorgeous doctor I have ever met in my life comes in and says, "we call this Lobster House syndrome." That happens to be another restaurant my parents like to go to and just had several nights ago. He said, folks eat a big meal, after being in the sun all day, maybe have a cocktail(my mom hadn't) and all the blood is deferred to their GI tract and they faint. He says, "they throw up and it brings them back." OH IS THAT ALL?! Guy is cool as a cucumber. And we all thought she was dying. Gotta say, it looked that way to everyone present. I think this was a step up from a faint for sure though, but I suppose you can have a seizure when there is that little oxygen in your brain. After he walked away, I look at Cathy, she looked at me, it has to be said. I was like, "Mom, did you do this just so you could meet that doctor?" She laughed.
Cathy was like, "I think I feel something coming on, I may need medical help." OK so we were trying to lighten the mood. We desperately needed to and the guy was movie star, leading man, weak in the knees (us not him) gorgeous. Anyway, this was so horrific for all of us. Mercifully, my mother remembers none of it. The rest of us will never forget it. She spent the night, and had a multitude of tests, what I call, "cover our ass medicine" but, in truth, she is almost 72 and this is what they do with anyone who loses consciousness like that. The woman passed the tests pretty well, looks amazingly good on paper despite taking terrible care of herself. She will need to start meds for Type 2 diabetes though and a neurologist told her to stop taking the 23 milligram Aricept pills and go back to 10. Are you ready for why? Turns out the company that makes Aricept came out with a 23 milligram pill because the patent on the 10 milligram was running out. This doc says they tried to say the 23 mg. works better, but, meanwhile, it is giving patients a lot of GI troubles, (my mom has to take immodium all the time now) and it's probably not really working much better for their memory, just giving them gut issues. There's your big pharma money making cr*p for ya right there. 23 mgs. so people don't buy the generic 10 mg and take 2. REALLY?!!! My mother has refused to see a neurologist for her memory issues and this is the problem when you have a primary care doc. prescribing meds that should be prescribed by a specialist who has more experience with them. My dad pulled an all nighter at the hospital. Cathy and I got home about 12:30 am. Cathy drove up in the morning and relieved him, I made him something to eat and forced him to take a nap. Tim drove me up to the hospital and I relieved Cathy and then they decided to spring her outta there, so Cat drove back after she fed her kids and we got her home(well, back to the motel) while we let my dad sleep. There will be a lot to do to turn her health around. Oral diabetes meds and major dietary changes if she wants to avoid this type of thing in the future. Her carotids have moderate plaque build-up and it means her heart vessels probably do too. We need to walk a thin line between scaring the heck out of her and making her take this seriously and knocking off the garbage diet and no exercise routine. My poor dad is just traumatized. It will be hard to put this scene in the rearview mirror, that's for sure. We are so lucky it was not worse and that we didn't lose her, but, it was indeed an incident we all wish we could delete from our "hard drives." So sad, so scary.
Wish the kids weren't there. Olivia said she really didn't see anything because of the crowd. I'm grateful for that.
So, there you have it: our vacation. I'm at a loss of words on how to wrap this up. It just was what it was. Onward.
My mom's memory is getting worse quickly and she does not want to go to the beach anymore, preferring so stay by the pool at the motel. She burst into tears one day while we were talking, apparently forgetting that Tim is not cured of his MM. Also, Tim was having neuropathy in his calves and feet and informed me that it had been going on for some time. A depressing vacation, to say the least.
This year, my younger sister came with her husband and 2 kids, 10 and 6. We are trying to get these family trips in while my mom still can and Cathy has wanted to come down with us for a number of years. I was looking forward to redeeming last year's trip. Well, it was not to be. Me and Cathy are very close and crack each other up all the time. The weather was rainy though, Tim and Dad's golf game didn't happen, but we had gotten some beach time in by Wednesday afternoon, after being rained off the beach earlier that day. Wednesday night, we went to a restaurant on the bay called
Harpoon Henry's. We do this every year. They have a little street fair along the bay and fireworks
after sundown. We had to wait for a table so we sat outside by one of the bars and margaritas were abound. Not for me. I am the best designated driver, I don't drink at all and my sister was driving the other car and only had one. Tim and my brother-in-law Chris had several by the time we were done with dinner. After dinner, my mom spent a little while in the ladies' room and we were concerned her meal did not agree with her. My mom likes to eat, a little too much, actually she likes it a lot too much. I didn't eat at all at the restaurants. My stomach has been awful lately so I ate pasta before we went out and just enjoyed the company while everyone else ate.
After the meal, we walked out the side of the restaurant to see the fireworks. It was crowded. This is the only joint on that bay side and the streets were mobbed too. My sister noticed that it appeared my mom was not feeling well. We kept our eyes on her. She and my father were sitting on this little hill right outside the restaurant, next to the sidewalk. She stopped watching the fireworks and was looking down. I walked over and said, "Mom, are you OK?" She is unresponsive. I ask again, and she goes into what I'm pretty sure was a seizure and a stroke also crossed my mind. I yell out for someone to call an ambulance and say. "lay her down." We lay her back and she is out. She stops shaking and is completely motionless. Her skin is cold, like I never felt someone's skin before, and we can't see her breathing. Her face is waxy and we think she is gone. I'm thinking about James Gandolfini, who grew up just a few miles from my house. Tim and I had to drop his truck off for service and drove right past the funeral parlor during Mr. Gandolfini's wake, with all the dang news crews and their cameras all over. I'm thinking, this is it, big meal, heart attack, she's gone, right in front of 3 of her grandkids. I see no signs of life and say, "she needs CPR", and my dad says, "she's having a heart attack." He gives her 1 or 2 chest compressions and she starts vomiting, while unconscious and laying on her back. We roll her onto her side. It was the most horrific thing I've ever been through, with the exception of Tim's diagnosis. I look up and Olivia and my niece and nephew are crying. Cathy is starting to break down, and the stricken look on Tim's face says it all. We all think she is dying right there. A woman yells, "she's catching her breath" and my mom is choking and waking up. I'm asking if anyone is a doctor or medically trained. 2 men wind up checking my mom out, one is checking her carotid pulse, another is asking for a watch with a second hand and a flashlight to take her wrist pulse. I don't think they were doctors, but I wasn't checking credentials at this point. The one on her wrist assures us and my mom that her heart rate is good. They can't get an ambulance through the streets so they load her onto the back of a Polaris in a basket. Turns out, the rig made it through and they transfer her. I tell them my dad must be with her, as her memory is failing and she cannot answer for herself or make decisions so they bring him. My poor mom is a mess and out of it. My sis had my brother-in-law strip off his shirt and give it to my dad as he was a mess too and had to take his off. My little 6 year old nephew thought, OK we're taking off our shirts so he whipped his off too.
(the kid is all for clothing optional time) We now had to fight thru the traffic to get back to the hotel, drop the kids and husbands off, and Cathy jumps in my dad's car(he wanted his car at the hospital) and I jump in our truck and we're off to find the dang hospital. Ambulance then goes past our motel as we are packing clothes for my parents, finding my mom's medications list, and getting ready to leave. Turns out they'd stopped when EMT's arrived to get her on a heart monitor and start an IV. It was 45 minutes from the time this happened until they finally reached the hospital, which was about 15 miles or so from where we were when it happened. I'm driving up the GSP thinking that she might not make it to the hospital. I thought for sure she'd just had a heart attack or stroke. We all did. I know that seizures are common right before someone dies too, so I'm thinking this is really bad. We get to the hospital and things don't look too urgent. We're giving nurses the medications list,
and other information. I look at her monitor and think, "DANG, I bet I wouldn't even look that good on a monitor right now." Heart rate was fine, BP pretty darn good, oxygen sats good. A while later, the most gorgeous doctor I have ever met in my life comes in and says, "we call this Lobster House syndrome." That happens to be another restaurant my parents like to go to and just had several nights ago. He said, folks eat a big meal, after being in the sun all day, maybe have a cocktail(my mom hadn't) and all the blood is deferred to their GI tract and they faint. He says, "they throw up and it brings them back." OH IS THAT ALL?! Guy is cool as a cucumber. And we all thought she was dying. Gotta say, it looked that way to everyone present. I think this was a step up from a faint for sure though, but I suppose you can have a seizure when there is that little oxygen in your brain. After he walked away, I look at Cathy, she looked at me, it has to be said. I was like, "Mom, did you do this just so you could meet that doctor?" She laughed.
Cathy was like, "I think I feel something coming on, I may need medical help." OK so we were trying to lighten the mood. We desperately needed to and the guy was movie star, leading man, weak in the knees (us not him) gorgeous. Anyway, this was so horrific for all of us. Mercifully, my mother remembers none of it. The rest of us will never forget it. She spent the night, and had a multitude of tests, what I call, "cover our ass medicine" but, in truth, she is almost 72 and this is what they do with anyone who loses consciousness like that. The woman passed the tests pretty well, looks amazingly good on paper despite taking terrible care of herself. She will need to start meds for Type 2 diabetes though and a neurologist told her to stop taking the 23 milligram Aricept pills and go back to 10. Are you ready for why? Turns out the company that makes Aricept came out with a 23 milligram pill because the patent on the 10 milligram was running out. This doc says they tried to say the 23 mg. works better, but, meanwhile, it is giving patients a lot of GI troubles, (my mom has to take immodium all the time now) and it's probably not really working much better for their memory, just giving them gut issues. There's your big pharma money making cr*p for ya right there. 23 mgs. so people don't buy the generic 10 mg and take 2. REALLY?!!! My mother has refused to see a neurologist for her memory issues and this is the problem when you have a primary care doc. prescribing meds that should be prescribed by a specialist who has more experience with them. My dad pulled an all nighter at the hospital. Cathy and I got home about 12:30 am. Cathy drove up in the morning and relieved him, I made him something to eat and forced him to take a nap. Tim drove me up to the hospital and I relieved Cathy and then they decided to spring her outta there, so Cat drove back after she fed her kids and we got her home(well, back to the motel) while we let my dad sleep. There will be a lot to do to turn her health around. Oral diabetes meds and major dietary changes if she wants to avoid this type of thing in the future. Her carotids have moderate plaque build-up and it means her heart vessels probably do too. We need to walk a thin line between scaring the heck out of her and making her take this seriously and knocking off the garbage diet and no exercise routine. My poor dad is just traumatized. It will be hard to put this scene in the rearview mirror, that's for sure. We are so lucky it was not worse and that we didn't lose her, but, it was indeed an incident we all wish we could delete from our "hard drives." So sad, so scary.
Wish the kids weren't there. Olivia said she really didn't see anything because of the crowd. I'm grateful for that.
So, there you have it: our vacation. I'm at a loss of words on how to wrap this up. It just was what it was. Onward.
Thursday, May 23, 2013
Back in the New York-ish groove
Just got in from Florida last night. Boy, do I hate air travel. Firstly, not fond of flying to begin
with, but, what a hassle it all is. After missing a turn, getting lost, and then stuck in traffic, worried we might miss our plane, our flight last Thursday was delayed about an hour going down, and yesterday's was delayed 2 hours. We got to the airport early yesterday, not knowing how long the drive from Tim's uncle's place in Key Largo would take exactly, and didn't take off until 5 hours later. GRRRR.
BUT, am glad to have had safe flights and 10- 11 hours of hassle for 2 days sure beats 6 LONG days in the car, and checking in and out of 4 hotels, which is what we would've faced going down and back. Oh and a word of caution, if you don't care to be felt up by someone after your metal scan, don't wear a blouse with "jewels" or sparkly things on it. Lesson learned. Woman told me she would have to pat me down in that area (see if I was smuggling a weapon in my bra, AS IF
a weapon would fit in this little thang!) I said, "have a party." I really didn't care but then she moved
toward my 15 y-o daughter when she came out of the scanner and this momma bear closed in. She glanced at the jewelry on her wrists and waived her by. Touching my kid like that woulda been a WHOLE other story and not something I woulda gone for without REAL good reason.
Anyhoo, we had a great trip. Our employee, who is like family to us, got married on the beach in
Fort Lauderdale, which was the reason for our trip. Very sweet but wow, all that work and planning
and it was over in 10 minutes. We partied on the terraces of the Harbor Beach Marriot. Nice place.
We stayed in Fort L. until Sunday and then went down to see Tim's Uncle Dave in Key Largo. Tim
and Liv swam with dolphins.They wanted to do this last time we were there in 2008, but the place was booked, so I made reservations in advance this time. Not much to do but relax and visit in Key Largo. Unless you're a boater, fisher, or diver, there's not a lot of other options there, but we were
there to see his uncle anyway. It was a teary good-bye yesterday. Love that man. He's "good people."
Tim and I have busy times ahead for us, and had a real busy spring leading up to it, so this was a great break from that. They have this thing called "Keys time" which is the slower pace things move
at in the Florida Keys and wow, do I get that, almost feel like my watch can't possibly work in
both places.
Our first, "can't get away from cancer moment" went like this, on the plane going down last Thursday.
There are 3 young kids sitting in front of us. A boy, the oldest, maybe 10 or 11, and his 2 younger sisters. Their mom is sitting across the aisle. They are watching the same thing on the TV. Youngest girl, maybe 4 or 5 says to her brother: "What's wrong with her?"
Bro: "she's sick."
Sis: "with what?"
Bro: "a disease."
Sis: "What kind of disease?"
Bro: "Cancer."
Sis: "What's cancer?"
Bro: "SHHH." He's trying to listen to the program and she won't stop talking.
Sis: "What is cancer?"
Bro: annoyed now. "It's nothing!!! I'll tell ya later."
Me, behind them, thinking, "well, kid, you got that part wrong, it certainly ain't nothing. Not from where I'm sitting. Man, we just can't get away from it, can we?" Unfortunately, it was just the first of many "cancer reminders." What can ya do? It's everywhere. Tim's uncle's wife, Carol, was not there this time, as she succumbed to ovarian cancer 2 summers ago. She and Tim were both on chemo when we visited back in '08.
But, we had a good trip, nonetheless. Tim loves any place there's a beach and Liv loves Florida and is threatening to move there now, or at least go to college there. I used to work for a woman whose daughter, also an only child, went to college there and liked Florida so much, she got a job after school and never came back home. UGH. I always wondered if my ex-boss and her husband ever moved there. When you have an only child, if you wanna be a part of their life, moving to the same area is always an option, I know some who've done that. I couldn't deal with the heat and the bugs. I don't really think Liv could either, but, if that's what she wants..................well TOUGH, she ain't getting it!!! Just kidding.
Oh well, back to the huge list of "apres holiday" chores. I'll see if I can figure out how to post some pics on here.
with, but, what a hassle it all is. After missing a turn, getting lost, and then stuck in traffic, worried we might miss our plane, our flight last Thursday was delayed about an hour going down, and yesterday's was delayed 2 hours. We got to the airport early yesterday, not knowing how long the drive from Tim's uncle's place in Key Largo would take exactly, and didn't take off until 5 hours later. GRRRR.
BUT, am glad to have had safe flights and 10- 11 hours of hassle for 2 days sure beats 6 LONG days in the car, and checking in and out of 4 hotels, which is what we would've faced going down and back. Oh and a word of caution, if you don't care to be felt up by someone after your metal scan, don't wear a blouse with "jewels" or sparkly things on it. Lesson learned. Woman told me she would have to pat me down in that area (see if I was smuggling a weapon in my bra, AS IF
a weapon would fit in this little thang!) I said, "have a party." I really didn't care but then she moved
toward my 15 y-o daughter when she came out of the scanner and this momma bear closed in. She glanced at the jewelry on her wrists and waived her by. Touching my kid like that woulda been a WHOLE other story and not something I woulda gone for without REAL good reason.
Anyhoo, we had a great trip. Our employee, who is like family to us, got married on the beach in
Fort Lauderdale, which was the reason for our trip. Very sweet but wow, all that work and planning
and it was over in 10 minutes. We partied on the terraces of the Harbor Beach Marriot. Nice place.
We stayed in Fort L. until Sunday and then went down to see Tim's Uncle Dave in Key Largo. Tim
and Liv swam with dolphins.They wanted to do this last time we were there in 2008, but the place was booked, so I made reservations in advance this time. Not much to do but relax and visit in Key Largo. Unless you're a boater, fisher, or diver, there's not a lot of other options there, but we were
there to see his uncle anyway. It was a teary good-bye yesterday. Love that man. He's "good people."
Tim and I have busy times ahead for us, and had a real busy spring leading up to it, so this was a great break from that. They have this thing called "Keys time" which is the slower pace things move
at in the Florida Keys and wow, do I get that, almost feel like my watch can't possibly work in
both places.
Our first, "can't get away from cancer moment" went like this, on the plane going down last Thursday.
There are 3 young kids sitting in front of us. A boy, the oldest, maybe 10 or 11, and his 2 younger sisters. Their mom is sitting across the aisle. They are watching the same thing on the TV. Youngest girl, maybe 4 or 5 says to her brother: "What's wrong with her?"
Bro: "she's sick."
Sis: "with what?"
Bro: "a disease."
Sis: "What kind of disease?"
Bro: "Cancer."
Sis: "What's cancer?"
Bro: "SHHH." He's trying to listen to the program and she won't stop talking.
Sis: "What is cancer?"
Bro: annoyed now. "It's nothing!!! I'll tell ya later."
Me, behind them, thinking, "well, kid, you got that part wrong, it certainly ain't nothing. Not from where I'm sitting. Man, we just can't get away from it, can we?" Unfortunately, it was just the first of many "cancer reminders." What can ya do? It's everywhere. Tim's uncle's wife, Carol, was not there this time, as she succumbed to ovarian cancer 2 summers ago. She and Tim were both on chemo when we visited back in '08.
But, we had a good trip, nonetheless. Tim loves any place there's a beach and Liv loves Florida and is threatening to move there now, or at least go to college there. I used to work for a woman whose daughter, also an only child, went to college there and liked Florida so much, she got a job after school and never came back home. UGH. I always wondered if my ex-boss and her husband ever moved there. When you have an only child, if you wanna be a part of their life, moving to the same area is always an option, I know some who've done that. I couldn't deal with the heat and the bugs. I don't really think Liv could either, but, if that's what she wants..................well TOUGH, she ain't getting it!!! Just kidding.
Oh well, back to the huge list of "apres holiday" chores. I'll see if I can figure out how to post some pics on here.
Saturday, April 20, 2013
Latest appt.
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!
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!
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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