I had a wonderful, busy weekend and did not feel worn out at any time. I did feel very very sore. Friday I had a meltdown that required a couple of crosswords for recovery. Mindless solving to stop thinking. Meltdowns usually happen for a reason (one hopes!) and provide impetus to act. Action going forward is more pain medication. Pills Pills Pills. Tylenol, which is not so great for a bad liver or ocycodone which is not so great for driving. You will have to ask to find out which one I'm taking, because assuredly I will be taking something. The constant pain was just working on me.
Thursday I saw Dr. Abhyankar, always rewarding. I can't think of the exact word. I trust him, he has lots of ideas and he is honest. (Ironically, he is the doctor who told me twice in the hospital "we're running out of things to try.") It's just a big YES! when he walks into the room. We talked about the joint pain and restrictions and he recommended Cellcept which is an immune suppressant. He said we could also try Revlimid before we resort to Prednisone. I had 2 bottles of Cellcept left in my pharmacy so I fished them out and started taking them. Expecting to feel results in a couple of weeks.
He granted rights to prune and collect debris in the garden. "Just wear gloves!" So I bought some latex dipped gloves to wear over my latex gloves from the clinic and I've been out twice. I can deadhead too. This is very cool. I feel like I belong in the neighborhood now.
No big dental work, like replacing a 20 year old crown, til after the 1 year mark...coming up soon. Two more months. About enough time to plan a very fine party.
I went to a very fine party Saturday night, an Irish Catholic wedding. Nobody remembered me! I had to announce myself to everyone. I do look different but golly! These are people I partied with 3-4 times a year but I haven't seen them for a couple of years. Guess that's just how it goes. Didn't stop me from enjoying myself.
Dr. Abhyankar said the pain I'm having is inflammation not only in the joints but also in the muscles. This would explain why when the physical therapist had me do a stretch and asked "can you feel it here?" I was always feeling it "there."
I have not had the liver biopsy yet, nor have I had the pulmonary function test (see first paragraph above.) I don't even have the full results of my labs from Thursday. I am hoping the labs will show low Vitamin D and taking prescription vitamin D will be part of the pain relief regimen.
Since I am no longer on the critical list, I really have to be my own advocate. The clinic staff is focused on the more seriously ill, as they should be. It's up to me to keep reminding them what I need. Mondays are tough days anyway, so no answers today.
Baby Ella is scheduled to arrive next week, May 4th. I'm planning to be in Chicago for that event. Annie's mom is going to take the Harrison duty so I can be in the waiting room at the hospital. How wonderful is that? She has much more grandma experience than I so I will be watching her with HB and taking notes next week. Annie has provided us with a lengthy list of dos and don'ts and howtos. I'm very happy to have this list, but it is a bit amusing in its thoroughness. Her dad is having a fine time with it. I am just so excited to be able to be there when Ella is born and be able to hold her in the first few hours. I tear up every time I think about it.
Mom is starting her second week of radiation and is doing fine. She has cancelled a trip to California to see her grandson perform in a school musical which is near the end of the radiation schedule. She is hugely disappointed. I doubt if anyone she tells that story to understands more than I how she feels. I appreciate the basics of life in a different way than I did before my long isolation. Perhaps next year we will go together to watch the boy in the musical.
~Cathi
Monday, April 26, 2010
Thursday, April 22, 2010
The system is down.
Yesterday I reported to the hospital for my Pulmonary Function test, prepared to gee whiz the techs and my doctors once again. Alas, they couldn't do the test because the computers were down. Hospital wide. I rescheduled for Friday and trundled to the Starbucks to wait for my Physical Therapy appointment.
I reported to PT and while I was sitting at the desk for the records person, a young fellow with completely tatooed arms, an earring, tight jeans and a presentable t-shirt (e.g. GEEK) told her that he had to take over her computer for a few minutes, it would back her completely out of what she was doing and he had to do it right now. "I have 4000 computers to touch so I have to do it right now." hahaha. Fortunately the computer next door opened up so he worked on that one instead.
I overheard him telling that he actually worked for the University in Lawrence, but that all IT types had been called to the hospital because they had 4,000 computers that had to be touched to restore full functioning. Wowser. This is when I would be creating a new policy to roll whatever that was out automatically. I cannot imagine what bug they were dealing with that required individual hands on for 4000 computers! This would be "the system is down." (The tagline for my company is "Your System is Up!")
Physical therapy was interesting. I was a little intimidated by the therapist I was assigned as she was a full 6" taller than me, and all of it was legs. I didn't want that kind of traction stretching my body parts. The assessment showed just what I'm experiencing--more tightness in the shoulders, arms and hands than in my legs and lower body. I have a new sheet of exercises, stretches really. And they all hurt. Do each stretch for 20-30 seconds and repeat 10-20 times. So I can get to 20 seconds, and I can repeat it once. I'm going to need a large bottle of Myers dark rum to put in my coke to do an entire set of reps.
It takes 15-20 seconds of stretching for the muscle to remember the stretch. Ugh. Ouch.
She also suggested a paraffin bath for my hands. Which means I have to locate the thing in my garage--probably have to stretch to reach up and get it off a shelf. Then clean it up. The general recollection is that the last time it was used, a nameless someone poured the paraffin out...over the sides of the reservoir. I'm thinking this will at least keep me busy for a while.
Today I see a Nurse Practitioner at the clinic and they are going to check my vitamin D levels in the blood work. I have quite a list of questions to ask. I'm still trying to work out where the limits are in the gardening. Like can I deadhead? Prune? Pick produce and flowers? I have looked up a little bit about this and the best I can tell is that even though my white count is normal, my immune system is still weakened. There are a couple of specific toxins in dirt that might cause an infection. But it might be that I can wear gloves and pick stuff up off the top of the dirt as long as I don't disturb it. I am picking around to find something that I can do outside--I'm just going nuts not being able to do anything.
I have been busy getting computers and networks up and running without glitches for my friend, Brant Tidwell. Brant had a seizure a few weeks ago and he has something in his brain that needs to come out. I have a visualization of floating downstream in a canoe that I use, always checking to see if I'm paddling against the flow or with it. Right now I feel like I am holding on to a root at the side of the river waiting for Brant to get his canoe turned around to go with me. That's how I feel, not how Brant feels. I think he has his canoe pointed in the right direction. I'm saying lots of prayers for Brant and Lucy and the doctors they are seeing. And holding my breath.
Now, on to the day with the crossword puzzle and a customer project and the laundry. These are downstream things.
~Cathi
I reported to PT and while I was sitting at the desk for the records person, a young fellow with completely tatooed arms, an earring, tight jeans and a presentable t-shirt (e.g. GEEK) told her that he had to take over her computer for a few minutes, it would back her completely out of what she was doing and he had to do it right now. "I have 4000 computers to touch so I have to do it right now." hahaha. Fortunately the computer next door opened up so he worked on that one instead.
I overheard him telling that he actually worked for the University in Lawrence, but that all IT types had been called to the hospital because they had 4,000 computers that had to be touched to restore full functioning. Wowser. This is when I would be creating a new policy to roll whatever that was out automatically. I cannot imagine what bug they were dealing with that required individual hands on for 4000 computers! This would be "the system is down." (The tagline for my company is "Your System is Up!")
Physical therapy was interesting. I was a little intimidated by the therapist I was assigned as she was a full 6" taller than me, and all of it was legs. I didn't want that kind of traction stretching my body parts. The assessment showed just what I'm experiencing--more tightness in the shoulders, arms and hands than in my legs and lower body. I have a new sheet of exercises, stretches really. And they all hurt. Do each stretch for 20-30 seconds and repeat 10-20 times. So I can get to 20 seconds, and I can repeat it once. I'm going to need a large bottle of Myers dark rum to put in my coke to do an entire set of reps.
It takes 15-20 seconds of stretching for the muscle to remember the stretch. Ugh. Ouch.
She also suggested a paraffin bath for my hands. Which means I have to locate the thing in my garage--probably have to stretch to reach up and get it off a shelf. Then clean it up. The general recollection is that the last time it was used, a nameless someone poured the paraffin out...over the sides of the reservoir. I'm thinking this will at least keep me busy for a while.
Today I see a Nurse Practitioner at the clinic and they are going to check my vitamin D levels in the blood work. I have quite a list of questions to ask. I'm still trying to work out where the limits are in the gardening. Like can I deadhead? Prune? Pick produce and flowers? I have looked up a little bit about this and the best I can tell is that even though my white count is normal, my immune system is still weakened. There are a couple of specific toxins in dirt that might cause an infection. But it might be that I can wear gloves and pick stuff up off the top of the dirt as long as I don't disturb it. I am picking around to find something that I can do outside--I'm just going nuts not being able to do anything.
I have been busy getting computers and networks up and running without glitches for my friend, Brant Tidwell. Brant had a seizure a few weeks ago and he has something in his brain that needs to come out. I have a visualization of floating downstream in a canoe that I use, always checking to see if I'm paddling against the flow or with it. Right now I feel like I am holding on to a root at the side of the river waiting for Brant to get his canoe turned around to go with me. That's how I feel, not how Brant feels. I think he has his canoe pointed in the right direction. I'm saying lots of prayers for Brant and Lucy and the doctors they are seeing. And holding my breath.
Now, on to the day with the crossword puzzle and a customer project and the laundry. These are downstream things.
~Cathi
Monday, April 19, 2010
The Lizard Doctor. oops..hepatologist not herpetologist
I've just returned from a weekend in Cowley County. I had a great time at the wedding Saturday (Kayla Biddle, Jess's daughter. Jess is Mary & Raymond's youngest son) and it was fun to see extended family at a non-funeral event. Sunday I drove to Wichita for a satisfying visit with Aunt Janet, my godmother. The new wedding clothes looked good and I felt wonderful and fortunate and grateful.
Aunt Janet, cousin Claudine and Aunt Cathy were terrific supporters all during my illness and recovery. They sent lots of cards and lots of good wishes. Aunt Janet kept up with the blog and often called Claudine and Aunt Karen to read them the updates. Janet has 5 kids who all kept up and sent good wishes; Cathy has 5 kids who kept up. I am just very fortunate to have such a large family and folks who were not afraid to pray and talk to each other and create lots of positive vibes for me. Now I have seen the oldest generation and I must start on the next generation, mine. Heaven forbid! there are two generations younger than me; life comes at ya fast.
I stayed with friends in Arkansas City, long time friends; and their kids and grandkid came to visit. It is like bookends to my illness. The last thing I did before I went in the hospital was go to Ark City to help with Andy and Melissa's wedding. And now I've visited them with their 1 year old baby. Mark joined us this weekend too.
I survived the travel in good shape though the drive home today was very long. My legs and feet are swollen and they become sensitive to the touch. Jeans hurt. I couldn't wait to get home and put on some knit pants. To complicate the drive home my bladder went into high gear and I had to stop often to empty. It reminded me of travelling with my Granny who called gas stations "emptying stations." But I am home and I am fine. Not worn out despite the aches and pains.
The visit with the liver doctor Friday was interesting. Peggy went with me and brought along a pad to take notes. The doctor came into the room and started talking like a machine gun with an Australian accent. I sorted out the accent fairly easily but his upper lip didn't move and he kept looking down at his paper. He didn't say hello or shake my hand or get introduced to Peggy. His nurse slipped in and had an equally brusque manner. However, the doc had an amusing sense of humor and he did look at me after I pointed out my hearing aids to him. Short excerpts:
"I know your liver isn't failing because your feet swell up and your albumin goes up and your albumin is fine."
"I need to do a biopsy and I'm really good at them I've been doing them for years in Nebraska and here and I know what I'm doing and folks hardly know they've been stuck and I hate that because I want them to recognize how painless it is and how good I am at it and the risks are 1 in 1000 of bleeding and 1 in 10000 of death and what do you think?"
My response. Silence. What does one say after that? So I got some more information out of him about why a biopsy--to see who is warring that is causing the enzymes to go up--and what happens after that.
He says in the liver the graft can fight against the donor, or it can actually be fighting the disease--leukemia or MDS (myelodysplasia.) And a biopsy will identify the opponent by the type of scar tissue in the ducts in the liver. Then I will take the appropriate drugs to assist my liver.
So I agreed to the biopsy and he exited after admonishing Peggy to "take good care of her." Peggy was as shell shocked as I was but we feel we got good information ultimately. The doctor also had high praise for the BMT team and remarked that not only were they terrific oncology/transplant doctors, they all had specialties in other areas. Ganguly is a gastroenterologist (like the liver doctor.) Who woulda guessed?
On the way to the lab Peggy remarked that it appeared he and his nurse thought we were partners, in the bedroom sense of the word. I didn't give that much thought "whatever" but then I went to the restroom and noticed my very short hair in the mirror. I had a good laugh--one could be forgiven for thinking we were partners.
Whatever!
~Cathi
Aunt Janet, cousin Claudine and Aunt Cathy were terrific supporters all during my illness and recovery. They sent lots of cards and lots of good wishes. Aunt Janet kept up with the blog and often called Claudine and Aunt Karen to read them the updates. Janet has 5 kids who all kept up and sent good wishes; Cathy has 5 kids who kept up. I am just very fortunate to have such a large family and folks who were not afraid to pray and talk to each other and create lots of positive vibes for me. Now I have seen the oldest generation and I must start on the next generation, mine. Heaven forbid! there are two generations younger than me; life comes at ya fast.
I stayed with friends in Arkansas City, long time friends; and their kids and grandkid came to visit. It is like bookends to my illness. The last thing I did before I went in the hospital was go to Ark City to help with Andy and Melissa's wedding. And now I've visited them with their 1 year old baby. Mark joined us this weekend too.
I survived the travel in good shape though the drive home today was very long. My legs and feet are swollen and they become sensitive to the touch. Jeans hurt. I couldn't wait to get home and put on some knit pants. To complicate the drive home my bladder went into high gear and I had to stop often to empty. It reminded me of travelling with my Granny who called gas stations "emptying stations." But I am home and I am fine. Not worn out despite the aches and pains.
The visit with the liver doctor Friday was interesting. Peggy went with me and brought along a pad to take notes. The doctor came into the room and started talking like a machine gun with an Australian accent. I sorted out the accent fairly easily but his upper lip didn't move and he kept looking down at his paper. He didn't say hello or shake my hand or get introduced to Peggy. His nurse slipped in and had an equally brusque manner. However, the doc had an amusing sense of humor and he did look at me after I pointed out my hearing aids to him. Short excerpts:
"I know your liver isn't failing because your feet swell up and your albumin goes up and your albumin is fine."
"I need to do a biopsy and I'm really good at them I've been doing them for years in Nebraska and here and I know what I'm doing and folks hardly know they've been stuck and I hate that because I want them to recognize how painless it is and how good I am at it and the risks are 1 in 1000 of bleeding and 1 in 10000 of death and what do you think?"
My response. Silence. What does one say after that? So I got some more information out of him about why a biopsy--to see who is warring that is causing the enzymes to go up--and what happens after that.
He says in the liver the graft can fight against the donor, or it can actually be fighting the disease--leukemia or MDS (myelodysplasia.) And a biopsy will identify the opponent by the type of scar tissue in the ducts in the liver. Then I will take the appropriate drugs to assist my liver.
So I agreed to the biopsy and he exited after admonishing Peggy to "take good care of her." Peggy was as shell shocked as I was but we feel we got good information ultimately. The doctor also had high praise for the BMT team and remarked that not only were they terrific oncology/transplant doctors, they all had specialties in other areas. Ganguly is a gastroenterologist (like the liver doctor.) Who woulda guessed?
On the way to the lab Peggy remarked that it appeared he and his nurse thought we were partners, in the bedroom sense of the word. I didn't give that much thought "whatever" but then I went to the restroom and noticed my very short hair in the mirror. I had a good laugh--one could be forgiven for thinking we were partners.
Whatever!
~Cathi
Tuesday, April 13, 2010
"On the go" (feet below the knees)
Today is the second day in a row that I have worked. Usually I try to work, as in leave the house and see customers, only one day a week. I also got a haircut today and had lunch with a friend. But I have been on the go since about 9. On the go in my case refers to any posture where the feet are below the knees. I've been home about 15 minutes and I am now on the couch with my feet elevated.
I am not tired. But my feet are uncomfortable. My ankles look like little softballs sitting on top of my feet. My knees are big round humps in the middle of my legs and the rest of my legs are bigger than regular size. The bottoms of my feet tingle, but even that is not unbearable. They ache where they are swollen. And the solution is to elevate them.
It's very frustrating.
I would have liked to stop by the grocery store and pick up a rib of celery to make a waldorf salad. I would have liked to collect the mail from the PO box. I still need to go to the jewelry store and buy a longer bracelet for my charms to accommodate my larger arms. And right now I would like to be sitting in my office dealing with the piles of paper, working on a sick computer, researching and just doing business.
But I just need to stop and get my feet up. They won't recover completely until morning, if then. I don't have much scheduled for tomorrow so I'll be able to take it easy. Perhaps I will organize some way to put my feet up comfortably in the office.
When I sit down and put my feet up, my legs get stiff. I put a pillow under my knees, but I still get stiff. There is another part to this joint pain and that is pain when I touch bones near my skin. This includes my knees (kneeling is very difficult and very painful,) my spine when I lean against the back of a chair, my hips when I sit down. This contact pain nearly always subsides after a couple of minutes but it is severe enough to make me stop and think before I lean back.
It is a continuum, sometimes better sometimes worse. Right now as I am writing this, it is worse. But it is not the worst ever. When it hurts the worst ever I have that deep jetted tub to fall into.
I have only one pair of shoes that I can wear and be on the go (see paragraph 1) for this long. And they are looking pretty shabby. Now that I have cute little flats to wear to the upcoming weddings I need to invest in some comfortable shoes to wear for walking, maybe some dark colored ones since the one good pair is red. Hahaha.
I haven't been able to work out that my feet suffer more when I eat more or less chocolate, but I do know that plenty of water usually nets out on the plus side. Today I drank 3 12 oz bottles, just not enough perhaps. I will keep the water glass topped off this afternoon.
Other news. I had lunch at Chez Elle, http://www.chezellekc.com/, and it was terrific. A genuine creperie, right here in Kansas City. I recommend starting with a sweet crepe (Citron with lemon curd and strawberries,) then have a savory if you still have room. The ambiance was magnifique.
Bon appetit!
~Cathi
I am not tired. But my feet are uncomfortable. My ankles look like little softballs sitting on top of my feet. My knees are big round humps in the middle of my legs and the rest of my legs are bigger than regular size. The bottoms of my feet tingle, but even that is not unbearable. They ache where they are swollen. And the solution is to elevate them.
It's very frustrating.
I would have liked to stop by the grocery store and pick up a rib of celery to make a waldorf salad. I would have liked to collect the mail from the PO box. I still need to go to the jewelry store and buy a longer bracelet for my charms to accommodate my larger arms. And right now I would like to be sitting in my office dealing with the piles of paper, working on a sick computer, researching and just doing business.
But I just need to stop and get my feet up. They won't recover completely until morning, if then. I don't have much scheduled for tomorrow so I'll be able to take it easy. Perhaps I will organize some way to put my feet up comfortably in the office.
When I sit down and put my feet up, my legs get stiff. I put a pillow under my knees, but I still get stiff. There is another part to this joint pain and that is pain when I touch bones near my skin. This includes my knees (kneeling is very difficult and very painful,) my spine when I lean against the back of a chair, my hips when I sit down. This contact pain nearly always subsides after a couple of minutes but it is severe enough to make me stop and think before I lean back.
It is a continuum, sometimes better sometimes worse. Right now as I am writing this, it is worse. But it is not the worst ever. When it hurts the worst ever I have that deep jetted tub to fall into.
I have only one pair of shoes that I can wear and be on the go (see paragraph 1) for this long. And they are looking pretty shabby. Now that I have cute little flats to wear to the upcoming weddings I need to invest in some comfortable shoes to wear for walking, maybe some dark colored ones since the one good pair is red. Hahaha.
I haven't been able to work out that my feet suffer more when I eat more or less chocolate, but I do know that plenty of water usually nets out on the plus side. Today I drank 3 12 oz bottles, just not enough perhaps. I will keep the water glass topped off this afternoon.
Other news. I had lunch at Chez Elle, http://www.chezellekc.com/, and it was terrific. A genuine creperie, right here in Kansas City. I recommend starting with a sweet crepe (Citron with lemon curd and strawberries,) then have a savory if you still have room. The ambiance was magnifique.
Bon appetit!
~Cathi
Monday, April 12, 2010
New/old kind of tired
I am wore out! Ever so tired. From shopping and gardening and eating out. It's a wonderful kind of tired that I haven't been in ages. I almost feel nostalgic along with the tired.
Janet has been here for a long weekend and our mission was to find clothes for me to wear to THREE weddings this spring! I haven't had a wedding to attend for a long while, much less three in one season. But I am excited about each one of them. Of course I missed two nieces' weddings while I was sick--I still can't believe that happened.
We had success finding a dress. And a stole and a belt and shoes and purse. And jewelry (in my box at home.) And we found some great jeans for me and a WOW outfit for Janet. She bought an awesome bag that we found at another store for less :( then a third store for more :) I guess it all nets out.
We met friends for dinner Friday night at the Macaroni Grill to celebrate normal platelets. I'm still adjusting to that idea. The server comped our dessert, and I got an Italian language lesson in the lady's room. I shall have to eat there often in the coming weeks.
I shall also have to do some serious hiking and stretching to be ready to spend 10 days in Italy in October. The stretching makes me feel better but I don't think I am regaining any range of motion. I asked for a referral to a physical therapist last week at the clinic. The purpose of the PT is to recover range of motion so I hope I hear about that soon. In the meantime, keep up the yoga, the hot baths, lots of rubbing.
Sunday I supervised a little gardening, more things in the ground. I wore my long sleeves and my new broad brimmed hat (another shopping item) but I could not stop myself reaching down to pick things out of the dirt. I went inside and washed up and stayed there. I don't know what I'm going to do. I asked the doctor last week when I will be able to garden. "Is it passage of a certain number of months?" "Is it reaching a certain level in my counts?" His response was "we will tell you when." Almost like Ganguly, but it was Aljitawi. The giggle about that conversation is that his first response to my question about when can I garden was "what kind of gardening do you do?" I was thinking "how many kinds are there?" but I responded "the kind where you plant things in the dirt and amend the soil and pull the weeds. (What else is there?)
I will never, ever be able to spend time in the sun. I must cover up, wear sunscreen that includes a physical blocker (I didn't know they made those that were not zinc based!) and avoid the midday sun. It's all common sense; I haven't been sunburned in a number of years. I admit that when I think about the restrictions at the lake I can make myself feel bad, but the trick is to focus on what I can do. I can do a 10 minute water ski run at 7 in the morning (like I could hold a ski rope for 10 minutes, ha!) I can sit on the dock in the evening, I can go out in the morning and watch the sun rise, I can take after dinner boat rides. I simply have to stay out of the sun and for good measure, away from the water, during the hot midday. I guess it means no more trips to Boundary Waters, but what a great reason to not be able to go on that trip.
The reason is that exposure to the sunlight can incite graft v. host symptoms that can be lethal. I'm unfamiliar with the science on this. I'll be studying up on it while I study the history of Florence and the Medicis.
Ciao baby
~Cathi
Janet has been here for a long weekend and our mission was to find clothes for me to wear to THREE weddings this spring! I haven't had a wedding to attend for a long while, much less three in one season. But I am excited about each one of them. Of course I missed two nieces' weddings while I was sick--I still can't believe that happened.
We had success finding a dress. And a stole and a belt and shoes and purse. And jewelry (in my box at home.) And we found some great jeans for me and a WOW outfit for Janet. She bought an awesome bag that we found at another store for less :( then a third store for more :) I guess it all nets out.
We met friends for dinner Friday night at the Macaroni Grill to celebrate normal platelets. I'm still adjusting to that idea. The server comped our dessert, and I got an Italian language lesson in the lady's room. I shall have to eat there often in the coming weeks.
I shall also have to do some serious hiking and stretching to be ready to spend 10 days in Italy in October. The stretching makes me feel better but I don't think I am regaining any range of motion. I asked for a referral to a physical therapist last week at the clinic. The purpose of the PT is to recover range of motion so I hope I hear about that soon. In the meantime, keep up the yoga, the hot baths, lots of rubbing.
Sunday I supervised a little gardening, more things in the ground. I wore my long sleeves and my new broad brimmed hat (another shopping item) but I could not stop myself reaching down to pick things out of the dirt. I went inside and washed up and stayed there. I don't know what I'm going to do. I asked the doctor last week when I will be able to garden. "Is it passage of a certain number of months?" "Is it reaching a certain level in my counts?" His response was "we will tell you when." Almost like Ganguly, but it was Aljitawi. The giggle about that conversation is that his first response to my question about when can I garden was "what kind of gardening do you do?" I was thinking "how many kinds are there?" but I responded "the kind where you plant things in the dirt and amend the soil and pull the weeds. (What else is there?)
I will never, ever be able to spend time in the sun. I must cover up, wear sunscreen that includes a physical blocker (I didn't know they made those that were not zinc based!) and avoid the midday sun. It's all common sense; I haven't been sunburned in a number of years. I admit that when I think about the restrictions at the lake I can make myself feel bad, but the trick is to focus on what I can do. I can do a 10 minute water ski run at 7 in the morning (like I could hold a ski rope for 10 minutes, ha!) I can sit on the dock in the evening, I can go out in the morning and watch the sun rise, I can take after dinner boat rides. I simply have to stay out of the sun and for good measure, away from the water, during the hot midday. I guess it means no more trips to Boundary Waters, but what a great reason to not be able to go on that trip.
The reason is that exposure to the sunlight can incite graft v. host symptoms that can be lethal. I'm unfamiliar with the science on this. I'll be studying up on it while I study the history of Florence and the Medicis.
Ciao baby
~Cathi
Thursday, April 8, 2010
Platelets are normal. 1 count to go.
I went to the clinic yesterday and the blood work results were just fantastic. Platelets 153. That's normal. Over 150 is normal. wow. My platelets haven't been normal for 4-5 years; they were hovering in the 130s for a long while before I got sick.
Hemoglobin 10.2. I was hoping for a big jump and I got it. Normal is 12-15. I'm going to get there. Because red blood cells have such a long life (6 months) this count takes the longest to climb and recover.
White cells 7.8. White cells have been normal for a while but it's nice to see the confirmation on that printout every time.
I saw Dr. Aljitawi and he talked to me about the graft vs. host symptoms that I'm having now. I feel more positive about it--I do not have as much pain as I did but I'll talk about that later. First he said it's good to have this chronic GVHD because it means the graft is really taking hold in my body. So the best omens for a long term graft [with no relapse] are acute GVHD, which I had plenty of, and chronic GVHD, which I have plenty of. He ordered half a dozen tests to quantify the symptoms before my next visit. Then we will take more action at my next visit, or not. More action is likely to be prednisone....sigh. A small dose, but still significant. The goal is to keep the inflammation currently in my joints from becoming scar tissue and more permanent. It's another of those conundrums "the risks of not taking it outweigh the side effects of taking it."
In the meantime I have been nicer to myself, giving my legs plenty of time to heft my body up and down stairs; not being in a hurry to stand up; reaching for things slowly. I really have not had a bad day for almost two weeks now.
Last weekend I rode in the car 10 hours or so to Cincinnati for a lovely Easter with my cousin. I appreciated help getting out of the car when we stopped but I did not have any thoughts of "oh I can't do this anymore," or "I shouldn't have come on this trip." The four of us in the car (my cousin and her husband and son and I) had a fine time. We had lots to talk about and worked crossword puzzles and thought up questions for Jason to look up on the computer with his aircard. We stopped in Vandalia, IL where Lincoln got his political start. We toured the state house, and a small museum that is filled with interesting stuff. I wanted to find the museum more money and space so its collections could be curated better. There were many items from an 1840s-1870s era home, letters from a Civil War soldier home, underground railroad bits. It was all piled in there with its provenance labeled carefully, but it was overwhelming.
My cousin in Cincinnati, Liz, was baptized Saturday evening and I served as her godmother which tickled me pink. She has a wonderful, big house, well set up for company and she and her beau are fantastic cooks. I did get tired by the end of the day, but I woke up in the mornings rested. It was a just a marvelous time. Gratifying that my body withstood the rigors of the road and entertaining to spend time with folks I don't see often enough.
Another count that was a bit better yesterday was the liver enzymes. One of the four has been very high for quite a while--over 500 when 50 is normal. Yesterday it had dropped to 325. I was hoping for that because my legs have not been swelling so much which I first noticed on the road trip. Nevertheless I will visit a lizard specialist next Friday.
Janet is here this weekend from the UK. We're planning some power shopping for wedding wear and "WOW" jeans. And we'll be looking at the map of Italy along with a guidebook or two.
Ciao! bella Italia.
~Cathi
Hemoglobin 10.2. I was hoping for a big jump and I got it. Normal is 12-15. I'm going to get there. Because red blood cells have such a long life (6 months) this count takes the longest to climb and recover.
White cells 7.8. White cells have been normal for a while but it's nice to see the confirmation on that printout every time.
I saw Dr. Aljitawi and he talked to me about the graft vs. host symptoms that I'm having now. I feel more positive about it--I do not have as much pain as I did but I'll talk about that later. First he said it's good to have this chronic GVHD because it means the graft is really taking hold in my body. So the best omens for a long term graft [with no relapse] are acute GVHD, which I had plenty of, and chronic GVHD, which I have plenty of. He ordered half a dozen tests to quantify the symptoms before my next visit. Then we will take more action at my next visit, or not. More action is likely to be prednisone....sigh. A small dose, but still significant. The goal is to keep the inflammation currently in my joints from becoming scar tissue and more permanent. It's another of those conundrums "the risks of not taking it outweigh the side effects of taking it."
In the meantime I have been nicer to myself, giving my legs plenty of time to heft my body up and down stairs; not being in a hurry to stand up; reaching for things slowly. I really have not had a bad day for almost two weeks now.
Last weekend I rode in the car 10 hours or so to Cincinnati for a lovely Easter with my cousin. I appreciated help getting out of the car when we stopped but I did not have any thoughts of "oh I can't do this anymore," or "I shouldn't have come on this trip." The four of us in the car (my cousin and her husband and son and I) had a fine time. We had lots to talk about and worked crossword puzzles and thought up questions for Jason to look up on the computer with his aircard. We stopped in Vandalia, IL where Lincoln got his political start. We toured the state house, and a small museum that is filled with interesting stuff. I wanted to find the museum more money and space so its collections could be curated better. There were many items from an 1840s-1870s era home, letters from a Civil War soldier home, underground railroad bits. It was all piled in there with its provenance labeled carefully, but it was overwhelming.
My cousin in Cincinnati, Liz, was baptized Saturday evening and I served as her godmother which tickled me pink. She has a wonderful, big house, well set up for company and she and her beau are fantastic cooks. I did get tired by the end of the day, but I woke up in the mornings rested. It was a just a marvelous time. Gratifying that my body withstood the rigors of the road and entertaining to spend time with folks I don't see often enough.
Another count that was a bit better yesterday was the liver enzymes. One of the four has been very high for quite a while--over 500 when 50 is normal. Yesterday it had dropped to 325. I was hoping for that because my legs have not been swelling so much which I first noticed on the road trip. Nevertheless I will visit a lizard specialist next Friday.
Janet is here this weekend from the UK. We're planning some power shopping for wedding wear and "WOW" jeans. And we'll be looking at the map of Italy along with a guidebook or two.
Ciao! bella Italia.
~Cathi
Thursday, April 1, 2010
Yoga hurts
I took a yoga class at Turning Point this morning with Mom. (We are both survivors now, instead of caretaker and survivor.) It was the best class I've found, very basic. But it just hurt like hell and I was mad as heck that I can't do some of the poses. Things that were simple for me before this GVHD are impossible now--like downward dog. Child pose requires so many props one could be forgiven for not recognizing it.
But the instructor was on point and I will go back. The other yoga classes I've taken so far are way advanced and I spend most of my time figuring out how to modify the poses. And I know these things. Or I did know them. The yoga this morning brought tears to my eyes more than once. Because it successfully opened up some of those places that haven't been reached in my recovery. The pain does not make me weep; the pain makes me angry.
There are some other symptoms of this chronic GVHD. I have trouble swallowing. A friend commented last weekend "you eat a lot, just not very much at one time." And that's true. I am constantly nibbling and sipping. Little bites, little sips. Makes a drink last a very long time--a plus I think.
And stuff runs through me a little faster than normal. I reckon this is why I can eat so much and not gain weight. The goal will be to maintain my weight and not lose. Or not lose too much. Frankly I think I could lose about 5# but that's based on the scale not my appearance.
Meanwhile, these house projects beckon. I think I will try picking up the drill today and see if I can handle it with one hand. If I can great; if I can't that will be the next goal.
I am racking up questions about my condition. Making notes on convenient scraps of paper. Hopefully I will have a nice list in my hand when I return to the clinic next week.
~Cathi
But the instructor was on point and I will go back. The other yoga classes I've taken so far are way advanced and I spend most of my time figuring out how to modify the poses. And I know these things. Or I did know them. The yoga this morning brought tears to my eyes more than once. Because it successfully opened up some of those places that haven't been reached in my recovery. The pain does not make me weep; the pain makes me angry.
There are some other symptoms of this chronic GVHD. I have trouble swallowing. A friend commented last weekend "you eat a lot, just not very much at one time." And that's true. I am constantly nibbling and sipping. Little bites, little sips. Makes a drink last a very long time--a plus I think.
And stuff runs through me a little faster than normal. I reckon this is why I can eat so much and not gain weight. The goal will be to maintain my weight and not lose. Or not lose too much. Frankly I think I could lose about 5# but that's based on the scale not my appearance.
Meanwhile, these house projects beckon. I think I will try picking up the drill today and see if I can handle it with one hand. If I can great; if I can't that will be the next goal.
I am racking up questions about my condition. Making notes on convenient scraps of paper. Hopefully I will have a nice list in my hand when I return to the clinic next week.
~Cathi
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