Two really great bits of information came to me today in my meeting with my team.
One, I have 1% plasma cells. That is normal. There are more tests that need to come back, but Dr. Popat said it probably means I'm in remission! More on this as it comes to me.
Two, I may be able to come home by day 84. Perhaps even soon. That means before Jacob starts back to school on August 27th! Now THAT's exciting.
(Picture: one of my mom's heart-shaped pancakes, which are her specialty; she made some the last time she was here.)
Tuesday, July 31, 2007
Sunday, July 29, 2007
Fun With Denise
My friend Denise found a way to get off from work Monday, so she could hang out at the apartment. We are watching The Prestige, a riveting movie (so far). Right now, she's on the phone with her sister (my mom called just a few moment before) and the movie's paused.
We did the yoga DVD that mom and I bought in July. I found it easier to do than when I tried to do the poses then. It is a nice reminder that I am getting stronger and healthier. I'm not saying I was able to do ALL the poses. But I DID do all the "Downward Facing Dog" poses (about 4 in a row,) which is something. Last time I was barely strong enough to do just one.
It rained much of the day today, but Kirk was able to be off to Dallas without too much trouble from weather. He back now in Frisco already, admitting that the drive is starting to wear on him a bit. I think he may need a book on tape or something. Denise brought Steve Martin's Pure Drivel, which I love. I only listened to one of the "stories" on it, but it was very funny. I'll have to make sure Kirk gets a copy to enjoy on his way back to Dallas next weekend.
Friday turned out to be a crazily long day. I needed two units of blood. Funny thing is I didn't feel so bad. No headaches. No terrible weariness. But my counts had fallen below 8 and that's the magic number. It took them longer to find a match...though the "critical shortage" of last week seemed to have righted itself. I had two units and did not leave until after 11PM! I am hoping THAT was the last time I'd need that.
Back to the movie!
We did the yoga DVD that mom and I bought in July. I found it easier to do than when I tried to do the poses then. It is a nice reminder that I am getting stronger and healthier. I'm not saying I was able to do ALL the poses. But I DID do all the "Downward Facing Dog" poses (about 4 in a row,) which is something. Last time I was barely strong enough to do just one.
It rained much of the day today, but Kirk was able to be off to Dallas without too much trouble from weather. He back now in Frisco already, admitting that the drive is starting to wear on him a bit. I think he may need a book on tape or something. Denise brought Steve Martin's Pure Drivel, which I love. I only listened to one of the "stories" on it, but it was very funny. I'll have to make sure Kirk gets a copy to enjoy on his way back to Dallas next weekend.
Friday turned out to be a crazily long day. I needed two units of blood. Funny thing is I didn't feel so bad. No headaches. No terrible weariness. But my counts had fallen below 8 and that's the magic number. It took them longer to find a match...though the "critical shortage" of last week seemed to have righted itself. I had two units and did not leave until after 11PM! I am hoping THAT was the last time I'd need that.
Back to the movie!
Friday, July 27, 2007
A Little Experiment
Since I've started eating more...well, it appeared my gastro-intestinal issues were worsening. So I called my Pharmacy M.D. at the hospital to see what he would suggest I do...other than taking Immodium three or four times a day. He brought up the dreaded G-word (you know, GVHD) because some people get it in that form. He suggested, however, that I stop taking the Magnesium Sulfate tablets (a known laxative) for a day to see if my "issues" stopped. If they did, then that meant my discomfort was caused by the Magnesium not GVHD.
I'm happy to report that as soon as I stopped taking the Magnesium, my symptoms disappeared. So this gastro stuff is not being caused by anything all that terrible...just too much Magnesium. I wonder tomorrow what the doctor will think I should do, since taking 4 tablets (that's 2000 Mg) of Magnesium is too hard on my system. I imagine he'll say for me to try one tablet for a few days, then see how my counts are doing. Then go from there.
Well, enough of that! Kirk is on his way here as I'm writing this. He had to leave a bit later than usual to prepare a very important RFP (or something) that's due in the morning for a very important client. Kirk called an hour or so ago and said he was not sleepy, since he'd gone to bed early enough last night. I always hate it when he drives here so late. He must be made of sturdier stuff than me. I know I'd have to pull over and end up sleeping the whole night through on the side of the road!
I'm excited to report that the people upstairs have finally calmed down enough to stop what sounds like elephant mating. Every once in a while I hear the sound of an Arabic-sounding dialect coming from the patio above. I wonder what's got them so riled up!? Could it be the stock market's sudden descent? Or just a baby that won't go to sleep. Or maybe I'm just going to bed a bit early (11:30PM!) for most humans, who (apparently) like to take their elephants for a walk around their apartment before turning in for the night.
(Can you guess what the picture is above? I'll give you 2 hints: it's green and it sits on a pond.)
I'm happy to report that as soon as I stopped taking the Magnesium, my symptoms disappeared. So this gastro stuff is not being caused by anything all that terrible...just too much Magnesium. I wonder tomorrow what the doctor will think I should do, since taking 4 tablets (that's 2000 Mg) of Magnesium is too hard on my system. I imagine he'll say for me to try one tablet for a few days, then see how my counts are doing. Then go from there.
Well, enough of that! Kirk is on his way here as I'm writing this. He had to leave a bit later than usual to prepare a very important RFP (or something) that's due in the morning for a very important client. Kirk called an hour or so ago and said he was not sleepy, since he'd gone to bed early enough last night. I always hate it when he drives here so late. He must be made of sturdier stuff than me. I know I'd have to pull over and end up sleeping the whole night through on the side of the road!
I'm excited to report that the people upstairs have finally calmed down enough to stop what sounds like elephant mating. Every once in a while I hear the sound of an Arabic-sounding dialect coming from the patio above. I wonder what's got them so riled up!? Could it be the stock market's sudden descent? Or just a baby that won't go to sleep. Or maybe I'm just going to bed a bit early (11:30PM!) for most humans, who (apparently) like to take their elephants for a walk around their apartment before turning in for the night.
(Can you guess what the picture is above? I'll give you 2 hints: it's green and it sits on a pond.)
Wednesday, July 25, 2007
Photographs of My New Apartment and Julie
Finally, photos! Here are the pictures I've been promising. As you can see, I now have a great apartment with a great view of the "lake" and its fountains. The French doors lead to the patio overlooking the water. I've also included a picture of Julie. She reminds me very much of Jim (Patti's husband). She's a lot of fun and I'm so blessed to have her as a caregiver (that's for sure.) And though I didn't take pictures of my first apartment (meaning: you have no point of comparison,) this apartment is much more suited to my needs. Mainly, I really need to see people out walking around the lake or the Muslim children riding their little bikes as their mothers dressed in black from head to toe watch from the steps. In summary, all these blessings lift my mood by keeping me connected with the general hub bub of humanity.
Yesterday was another long day at MDA. I was there from 8AM to 5PM doing various things. During that time I actually found time to go work out with the physical therapy team. I was evaluated a month ago and found that my general health had actually improved. The only problem I need to work on really is my endurance.
My red blood count was not as high on my labs as I would like. Despite that, I still have energy and no headaches. So it is not such a problem. All other counts are good. Every day it seems I am feeling better and finding myself able to do more physically.
The other good thing is that I do not need to go back to the hospital until Friday. My days were reduced to two (Tuesdays and Fridays,) which is very good.
Yesterday was another long day at MDA. I was there from 8AM to 5PM doing various things. During that time I actually found time to go work out with the physical therapy team. I was evaluated a month ago and found that my general health had actually improved. The only problem I need to work on really is my endurance.
My red blood count was not as high on my labs as I would like. Despite that, I still have energy and no headaches. So it is not such a problem. All other counts are good. Every day it seems I am feeling better and finding myself able to do more physically.
The other good thing is that I do not need to go back to the hospital until Friday. My days were reduced to two (Tuesdays and Fridays,) which is very good.
Tuesday, July 24, 2007
A Game of Wii
It's a long Tuesday at MDA today. Longer than usual, since I'm here at 8AM for some blood work. Good thing I'm feeling better.
Tonight or tomorrow I plan to take pictures of the new apartment so I can post them on this blog.
Last night, I played games for the first time on a Wii. Bowling...electronically is the best way to describe it, if you've never played on a Wii. The Wii belongs to my new caregiver, Julie, who is a niece of mine by my ex-husband. Things are working out well with her. We seem to actually like watching the same sorts of things on television. Watched stupid mind candy liked "Age of Love" last night. The night before we watched her DVD of Kira Knightly (sp?) in Pride and Prejudice. It was the first time I'd seen it. And I thoroughly enjoyed it.
I've been eating and exercising better lately. Last night, believe it or not, the weather was so nice out, it was really nice getting out for a walk around the lake that's right outside my patio.
Friday I have a bone marrow biopsy and then some tests on Monday to see how I'm doing with the cancer. I fully expect that they'll find nothing left. The full report probably won't be out until next Tuesday (that's when I see the doctor typically).
I praying that I won't need any more red blood infusions, since they are having a shortage around here. It makes it difficult to get units of blood. Whatever the case, I've learned that able-bodied people ought to go out right now and give blood, if they can. It's a shortage that happens every summer apparently.
Tonight or tomorrow I plan to take pictures of the new apartment so I can post them on this blog.
Last night, I played games for the first time on a Wii. Bowling...electronically is the best way to describe it, if you've never played on a Wii. The Wii belongs to my new caregiver, Julie, who is a niece of mine by my ex-husband. Things are working out well with her. We seem to actually like watching the same sorts of things on television. Watched stupid mind candy liked "Age of Love" last night. The night before we watched her DVD of Kira Knightly (sp?) in Pride and Prejudice. It was the first time I'd seen it. And I thoroughly enjoyed it.
I've been eating and exercising better lately. Last night, believe it or not, the weather was so nice out, it was really nice getting out for a walk around the lake that's right outside my patio.
Friday I have a bone marrow biopsy and then some tests on Monday to see how I'm doing with the cancer. I fully expect that they'll find nothing left. The full report probably won't be out until next Tuesday (that's when I see the doctor typically).
I praying that I won't need any more red blood infusions, since they are having a shortage around here. It makes it difficult to get units of blood. Whatever the case, I've learned that able-bodied people ought to go out right now and give blood, if they can. It's a shortage that happens every summer apparently.
Saturday, July 21, 2007
Saturday Update
My computer and e-mail (swilder@ccccd.edu) are working again. I've moved into the new apartment. (Pics tomorrow!) To obtain my new address see the right side of this blog. For my new land line, call my cell phone. My new apartment does not have an answering machine, so if I'm not here it will simply ring and ring. I am only going to the hospital now on Tuesdays and Fridays.
Computer Virus...Better It Than Me
My computer crashed a few days ago, so I've been unable to check e-mail or update my blog until just now. Actually, I think CCCCD must be updating their system because I can't even check my e-mail tonight. The problem is usually resolved by morning, so I'll try again then. If you've got an urgent message to send, try sending it to Kirk's work e-mail at kwilder@symphonysms.com.
Tomorrow I'll be moving into my new apartment with the better view. Monday, I'll have a caregiver. My neice from Vernon's family. She's a lovely young woman with so much to offer. I feel very blessed about all these changes. And Kirk and Jacob are here to help me make them.
My red blood went down to 8 today, so I was given a unit to bring my color and energy back. I do feel almost instantly better. It's been two weeks since my last infusion. But this is my third. It is not unususal for this kind of thing to happen while in recovery for an allogeneic transplant. I am just grateful that I now have energy again. I had become quite the couch potato this last week. It was difficult just walking across the room a few times, so I slept a lot. Not too good for my mind or for my body. So receiving the blood means I can pick up my exercise again. Hopefully, my body will take over from this point.
All my other counts are normal.
Cassy is doing fine on the antibiotic Kirk's been giving her daily. The cat chewed out all of his stitches, but that turned out to be fine, too.
It was looking very very hot and uncomfortable here in Houston last week. Then it rained all week and *poof* better weather. I mean, better for Houston, that is.
Prayer request: red blood count going and staying at normal; my new caregiver--working out the kinks in our relationship; travel for Kirk and Jacob as they head back to Frisco; my state of mind--as I begin to spend time alone before Julie comes after work.
Tomorrow I'll be moving into my new apartment with the better view. Monday, I'll have a caregiver. My neice from Vernon's family. She's a lovely young woman with so much to offer. I feel very blessed about all these changes. And Kirk and Jacob are here to help me make them.
My red blood went down to 8 today, so I was given a unit to bring my color and energy back. I do feel almost instantly better. It's been two weeks since my last infusion. But this is my third. It is not unususal for this kind of thing to happen while in recovery for an allogeneic transplant. I am just grateful that I now have energy again. I had become quite the couch potato this last week. It was difficult just walking across the room a few times, so I slept a lot. Not too good for my mind or for my body. So receiving the blood means I can pick up my exercise again. Hopefully, my body will take over from this point.
All my other counts are normal.
Cassy is doing fine on the antibiotic Kirk's been giving her daily. The cat chewed out all of his stitches, but that turned out to be fine, too.
It was looking very very hot and uncomfortable here in Houston last week. Then it rained all week and *poof* better weather. I mean, better for Houston, that is.
Prayer request: red blood count going and staying at normal; my new caregiver--working out the kinks in our relationship; travel for Kirk and Jacob as they head back to Frisco; my state of mind--as I begin to spend time alone before Julie comes after work.
Monday, July 16, 2007
New Digs
I discovered on Sunday that I have the opportunity to move into an apartment that overlooks a lake here at the apartments. There are many aspects of this apartment with a view that I think will help my recovery. For one, I'll be able to comfortably have breakfast on the patio because the position of the apartment in relation to the rising and setting of the sun is more favorable. Secondly, it is on the first floor, more central to the fitness center and all the walkers and runners who regularly visit the lake in the evenings. I know this will inspire me to walk more as well as help me not to feel so isolated. I have a bicycle that I haven't been able to use since being on the third floor means having to carry it down several flights of stairs. In a first floor apartment near a riding path, I'll more easily be able to ride the bike. The nicest of all three pools in the complex is also closer to this other apartment. Even though I can't really swim at this point, I find it can be a very nice experience to go down to the pool area when the sun is not too high and read.
So on Sunday I'll be moving into this new apartment. My address will be the same, except for the apartment number. It will be #1116.
Tuesday I'm getting together with a nice girl Lynn hooked me up with, who may work out well as a caregiver for me during my last month/month and a half of time here in Houston. She's going to come by my room on at the ATC unit on the 10th floor around 2PM on Tuesday. Then we'll discuss the arrangement we'd have if she were my caregiver and try to catch up. The last time I saw her she was probably around 6-8 years old and it was at a funeral for Vernon's nephew in Mississippi.
There is another pet problem going on at home, I found out last night. This time it is our dog, Cassy, who has apparently started to urinate uncontrollably in the house. Some of the urine, according to Kirk, appears to have blood in it. So Cassy is at the vet's right now. I think it has been just too much for our animals these past few months since Kirk and I have had to be in Houston so much. I'm sure they are missing their masters (especially me). Neighbors have been so kind to step up and give love and care to our pets on weekends Kirk has come to Houston, but the stress may be starting to affect them in ways I'd never really considered.
Otherwise, I'm in good spirits and feeling good this morning, especially knowing I'll soon be living in an apartment that better suits my needs in these last few weeks of my treatment.
Oh, I'm not sure I mentioned this. According to the last report, my bone marrow is now 93% Lisa. I thrilled at this on many levels. The main being that my myeloid cells, which were infected with the cancer, are now almost completely replaced by my sister's cells. And my sister's cells do not accept cancer. Instead they fight it. The result is I've noticed a few mild side effects, which may or may not be GVHD. Some doctors believe a mild form of Graft vs. Host actually facilitates the Graft vs. Myeloma effect--something that is very good for a long term cure. Mostly I seem to have a slight rash that itches hardly at all and some intestinal issues that may actually be more related to a new medication I started last week. Whatever the case, I feel confident that I've been given a new start on life with Lisa's cells. And they are taking over so quickly. So like Lisa, you know. To take over so quickly. (Just joking.)
Prayer requests: Cassy (our dog) for her health; me for mild GVHD, if I get it at all and that my liver is protected and mended by the meds I'm taking; Kirk for his ability to bring the big accounts he's slaving away on to fruition; Jacob and Vernon for their safety and fun at Grand Canyon; Julie and me that we would "click" and that she will work out as a caregiver.
Praise reports: my headaches bother me less and less; 93%!; Martin (our cat) doing better; Friday I had a reaction to an IV med, but it was easily managed with an IV of Benadryl.
So on Sunday I'll be moving into this new apartment. My address will be the same, except for the apartment number. It will be #1116.
Tuesday I'm getting together with a nice girl Lynn hooked me up with, who may work out well as a caregiver for me during my last month/month and a half of time here in Houston. She's going to come by my room on at the ATC unit on the 10th floor around 2PM on Tuesday. Then we'll discuss the arrangement we'd have if she were my caregiver and try to catch up. The last time I saw her she was probably around 6-8 years old and it was at a funeral for Vernon's nephew in Mississippi.
There is another pet problem going on at home, I found out last night. This time it is our dog, Cassy, who has apparently started to urinate uncontrollably in the house. Some of the urine, according to Kirk, appears to have blood in it. So Cassy is at the vet's right now. I think it has been just too much for our animals these past few months since Kirk and I have had to be in Houston so much. I'm sure they are missing their masters (especially me). Neighbors have been so kind to step up and give love and care to our pets on weekends Kirk has come to Houston, but the stress may be starting to affect them in ways I'd never really considered.
Otherwise, I'm in good spirits and feeling good this morning, especially knowing I'll soon be living in an apartment that better suits my needs in these last few weeks of my treatment.
Oh, I'm not sure I mentioned this. According to the last report, my bone marrow is now 93% Lisa. I thrilled at this on many levels. The main being that my myeloid cells, which were infected with the cancer, are now almost completely replaced by my sister's cells. And my sister's cells do not accept cancer. Instead they fight it. The result is I've noticed a few mild side effects, which may or may not be GVHD. Some doctors believe a mild form of Graft vs. Host actually facilitates the Graft vs. Myeloma effect--something that is very good for a long term cure. Mostly I seem to have a slight rash that itches hardly at all and some intestinal issues that may actually be more related to a new medication I started last week. Whatever the case, I feel confident that I've been given a new start on life with Lisa's cells. And they are taking over so quickly. So like Lisa, you know. To take over so quickly. (Just joking.)
Prayer requests: Cassy (our dog) for her health; me for mild GVHD, if I get it at all and that my liver is protected and mended by the meds I'm taking; Kirk for his ability to bring the big accounts he's slaving away on to fruition; Jacob and Vernon for their safety and fun at Grand Canyon; Julie and me that we would "click" and that she will work out as a caregiver.
Praise reports: my headaches bother me less and less; 93%!; Martin (our cat) doing better; Friday I had a reaction to an IV med, but it was easily managed with an IV of Benadryl.
Saturday, July 14, 2007
Garage Sailing
This morning while it was still nice (though somewhat muggy all the same,) Kirk and I went Garage "Sailing" in the area. We found about three garage/yard sales, but only two were worth a visit. At one, I made a huge find: four Fire King bowls with handles. Fire King is collectible, though these particular bowls were less so because they were white. But I like them and don't plan to sell them. And we need them. The bowls that came with the apartment are kind of grim--too large to balance on the hand and too shallow to keep from spilling.
I also found a crocheted cap, which I washed carefully. We'll have to see how it works out.
We visited, as well, a bead shop different from the one in Rice Village. I decided to buy enough beads to make a necklace to give myself an art project.
Right now, we're on our way out the door to take a look at a campground that some patients at MDA have raved about. It is actually in the city, not far from here. We're going to check it out.
I also found a crocheted cap, which I washed carefully. We'll have to see how it works out.
We visited, as well, a bead shop different from the one in Rice Village. I decided to buy enough beads to make a necklace to give myself an art project.
Right now, we're on our way out the door to take a look at a campground that some patients at MDA have raved about. It is actually in the city, not far from here. We're going to check it out.
Thursday, July 12, 2007
A Beautiful Day
There was something really beautiful about today. I was so down on Wednesday. Even called to ask a friend in this area to pray with me over the phone. My counts were all so good, but I was feeling terrible. The only word that I can think of to describe the feeling I had Wednesday is "claustrophobic."
But today I was released in ways too profound to justify in this entry. Let's just say it was really quite beautiful. I had energy. Jacob and I played the card game Uno. I read a mystery book from a series that is about as light and uncomplicated as can be. I took Jacob down to the pool, so he could do his training for the Grand Canyon. Then I still had enough energy to get some Mexican food at a local restaurant that is not usually very busy. Even the weather here in Houston seemed to cooperate...it was not nearly as muggy this afternoon or evening as it has been. It rumbled and thundered like it was going to rain, but never did. Of course, my Magnesium was high enough on Wednesday to warrant only a small home infusion today.
I also had a nice talk with a possible caregiver, who would be able to stay with me nights Sundays through Thursdays. She is a student of MD Anderson working toward her Ph.D. She sounded very nice and I know her through relatives, so she may be a good alternative to someone being here 24/7. But I am still leaving things open. I was sort hoping for someone who could get me to my appointments, even stay with me at them, if possible. But, as I said, I'm open to possibilities.
But today I was released in ways too profound to justify in this entry. Let's just say it was really quite beautiful. I had energy. Jacob and I played the card game Uno. I read a mystery book from a series that is about as light and uncomplicated as can be. I took Jacob down to the pool, so he could do his training for the Grand Canyon. Then I still had enough energy to get some Mexican food at a local restaurant that is not usually very busy. Even the weather here in Houston seemed to cooperate...it was not nearly as muggy this afternoon or evening as it has been. It rumbled and thundered like it was going to rain, but never did. Of course, my Magnesium was high enough on Wednesday to warrant only a small home infusion today.
I also had a nice talk with a possible caregiver, who would be able to stay with me nights Sundays through Thursdays. She is a student of MD Anderson working toward her Ph.D. She sounded very nice and I know her through relatives, so she may be a good alternative to someone being here 24/7. But I am still leaving things open. I was sort hoping for someone who could get me to my appointments, even stay with me at them, if possible. But, as I said, I'm open to possibilities.
Wednesday, July 11, 2007
Correction and Notice
In my last entry, I said that I would start being alone Sunday night through Thursday afternoons next week--the week of July 15th. That was incorrect. It actually begins the week of July 22nd. What was I thinking? Jacob will not go back to Dallas until July 22nd. That is so he can get his backpacking equipment packed and ready for his big trip with his dad to the Grand Canyon, which I believe starts July 29th. They both are hiking together down to Phantom Ranch for a night, then taking two nights to hike out. On the way, Jacob's dad has planned some visits with Vernon's sister and my mom/Lisa, Randy and Sam in New Mexico.
However, when I mentioned to Dr. Popat that I would be without a caregiver Sundays through Thursdays, he said it was really not an acceptable arrangement. It's important, he said, to have someone with you, who can help during those sudden downturns in health. I have already experienced that a couple of times and was lucky enough to have Kirk or Jacob with me, so I got what Dr. Popat was saying.
Thankfully, my dad has offered to pay for a caregiver. I am so honored by this...and grateful. So, in light of this, I've started putting the word out to friends and family who have connections with persons who are able to do this in the Houston or surrounding areas.
What I'm looking for is someone who can live with me Sunday nights through Thursday mornings or afternoons starting July 22nd or 29th, 2007 and probably continuing until the end of August--about 4-5 weeks. This person would not need to stay weekends, but if they needed to they certainly could. The apartment I'm living in is very nice and has an 2nd bedroom with a bathroom to its own. What I need is a nurturing companion type of person who can do some light cleaning and cooking around the apartment. On days when I go to M D Anderson, this person would need to drive me there and stay with me in my room, perhaps running light errands in the clinic, but mostly just staying with me for the hours I am receiving treatment. Pay would be commiserate with experience, but this person does not need to have nursing capabilities.
If you are connected to a church in the Houston area, even as far as Austin, and know someone who is interested, please contact me by e-mail (swilder@ccccd.edu) or phone (if you know it) and let me know. Or interested persons may inquire themselves. Someone with a upbeat, nurturing personality would be best. References may be necessary for those inquiring with connections to old friends or family.
Now, I should also tell you that today was a really good day in terms of my counts. All of them were UP today. My white blood was actually normal, and red blood was not far behind. The Magnesium was high enough for me to take a smaller infusion home with me for tomorrow. Praise God! Kirk comes tomorrow and I can hardly wait. I feel as if I haven't seen him in forever.
However, when I mentioned to Dr. Popat that I would be without a caregiver Sundays through Thursdays, he said it was really not an acceptable arrangement. It's important, he said, to have someone with you, who can help during those sudden downturns in health. I have already experienced that a couple of times and was lucky enough to have Kirk or Jacob with me, so I got what Dr. Popat was saying.
Thankfully, my dad has offered to pay for a caregiver. I am so honored by this...and grateful. So, in light of this, I've started putting the word out to friends and family who have connections with persons who are able to do this in the Houston or surrounding areas.
What I'm looking for is someone who can live with me Sunday nights through Thursday mornings or afternoons starting July 22nd or 29th, 2007 and probably continuing until the end of August--about 4-5 weeks. This person would not need to stay weekends, but if they needed to they certainly could. The apartment I'm living in is very nice and has an 2nd bedroom with a bathroom to its own. What I need is a nurturing companion type of person who can do some light cleaning and cooking around the apartment. On days when I go to M D Anderson, this person would need to drive me there and stay with me in my room, perhaps running light errands in the clinic, but mostly just staying with me for the hours I am receiving treatment. Pay would be commiserate with experience, but this person does not need to have nursing capabilities.
If you are connected to a church in the Houston area, even as far as Austin, and know someone who is interested, please contact me by e-mail (swilder@ccccd.edu) or phone (if you know it) and let me know. Or interested persons may inquire themselves. Someone with a upbeat, nurturing personality would be best. References may be necessary for those inquiring with connections to old friends or family.
Now, I should also tell you that today was a really good day in terms of my counts. All of them were UP today. My white blood was actually normal, and red blood was not far behind. The Magnesium was high enough for me to take a smaller infusion home with me for tomorrow. Praise God! Kirk comes tomorrow and I can hardly wait. I feel as if I haven't seen him in forever.
Monday, July 9, 2007
Cat Scan Wednesday
It appears as if next week will be the beginning of my "home alone" experience in this phase of my treatment. Kirk can come Thursday, but he will leave and take Jacob with him on Sunday. That means I'll be here taking care of things on my own Mondays through Thursdays for a while.
This Wednesday I am having a CAT Scan to see if I've got something going on with my sinuses that may be triggering my headaches. I am hoping this will help my team to treat the headaches as sinus-itus rather than migraines. I was able to keep headaches away today for the most part. But they are always literally "knocking at the door" (ie. throbbing) and waiting for a chance to become a full blown terrible headache.
Aside from this and feeling a little sleepy, I had a pretty good day. Most days, in fact, up to this point have been mostly like the one I had today. Just a little tired, just a little headache-y. Mainly, I think from the infusion of Magnesium, which has that effect on me, I think.
I am making progress, though, from my perspective, it seems slow. My team seems to think I'm doing marvelously. And making progress rather quickly. All I know is that I am trusting God to get through this next part.
Please continue to pray for Kirk and that my counts go up to where they need to be and stay there. Also that the headaches be cured with information from the CAT scan.
This Wednesday I am having a CAT Scan to see if I've got something going on with my sinuses that may be triggering my headaches. I am hoping this will help my team to treat the headaches as sinus-itus rather than migraines. I was able to keep headaches away today for the most part. But they are always literally "knocking at the door" (ie. throbbing) and waiting for a chance to become a full blown terrible headache.
Aside from this and feeling a little sleepy, I had a pretty good day. Most days, in fact, up to this point have been mostly like the one I had today. Just a little tired, just a little headache-y. Mainly, I think from the infusion of Magnesium, which has that effect on me, I think.
I am making progress, though, from my perspective, it seems slow. My team seems to think I'm doing marvelously. And making progress rather quickly. All I know is that I am trusting God to get through this next part.
Please continue to pray for Kirk and that my counts go up to where they need to be and stay there. Also that the headaches be cured with information from the CAT scan.
Sunday, July 8, 2007
Day 33: Missing Kirk Again
The two units of blood I received Friday must have worked because today I do feel more like myself. I'm on the last hour of my home infusion of Magnesium...usually the hardest part. Toward the last hour of the infusion the Magnesium makes me feel hot, almost as if I have a sunburn and can give me a headache and/or make me nauseated. I'm thinking that if I can distract myself by writing, perhaps my "end" reactions won't be so noticeable.
Mom just called from Albuquerque. She had a lay over in El Paso, but the flight was uneventful. Once again, she was so helpful. There's lots of food in the frig to heat up for the coming days before Kirk will be here because of her. I'm so glad she was able to make it work in her schedule to be here again for another week. I'm not sure how I would have made it through the "endless" Friday, if it hadn't been for her. She managed to do all the wash, as well. But her greatest contribution was her perspective, which made me feel supported and loved through the day in and day out of my treatment. Thank you, mom. I love you so much.
Kirk reports now that the cat has chewed out all of his stitches, despite doctor's orders that he not do this. Amazingly, it appears he is unscathed by his behavior. The surgical wound has healed, though Kirk is going to ask the vet it there's anything that he should watch for. That cat just will not be held down by anything.
These days I, too, find myself chewing out my own "stitches," but in the emotional world...not the physical. I am at day 33. The earliest anyone has gone home from this experience is day 84. That leaves 51 days...about one month and a half...before I can hope to go home. Thank God there are little victories along the way. For example, when I was suddenly reduced from going into the outpatient clinic 7 days a week to only 3 days a week. My next step will be reduction to 2 days a week...probably Tuesdays and Fridays (according to my APN.) But I will be happiest when I can start reducing the amount of Cyclosporine I'm taking. August 10th will be another major step because I'll have a bone marrow biopsy that will indicate what is going on with the cancer. Of course, I know they'll find nothing. I'm just looking forward to the proof of my healing.
I'm having I must admit some issues with loneliness. I had mom here and that helped. I have Jacob here and that is wonderful. But I miss Kirk, who I get to see so rarely it is really starting to bother me. Talking to him on the phone sometimes actually just makes it worse. I don't know how to explain this. Mom sends lots of cards. People do call. I wish it were possible to exchange the presence of my loving husband for the presence of others, but it just can't be done. I miss him terribly and find myself resenting anyone and anything that prevents him from being here. It is almost unbearable to go through this last treatment for the cancer without him. The few days he was here were awesome, though three days can hardly make up for the ten he had to be gone.
Tonight Jacob and I will make a trek to a drive-in movie theater, so we can see a movie on the big screen. Of course, it wouldn't be prudent for me to go see a movie in a movie theater right now. I'm being very careful about protecting myself from catching anything, as my doctors recommend. I hope I have enough energy to go through with it. The movie starts at 9PM and probably won't be over until around 11PM. Then I'll have to drive back to the apartment. I feel as if it will be okay, but I'll just have to take it as it comes. If I'm not ready to leave at 8PM, then we'll wait until Kirk is here to give this a try.
Kirk has noticed that I have a few more typos in my blog lately. He's worried that this is a sign that things are "not as they should be" with me. I want everyone to know...it's true: things aren't "as they should be," but only because I miss Kirk so much. I often read over the blog and notice these typos. I just don't have any motivation to go back and change them. Motivation for me has often come from Kirk. I mean, I'm able to motivate myself...and have for years...but now that I'm weakened physically as well...my motivation has slipped a bit. Especially without my sweetheart here.
I love Kirk so much.
Mom just called from Albuquerque. She had a lay over in El Paso, but the flight was uneventful. Once again, she was so helpful. There's lots of food in the frig to heat up for the coming days before Kirk will be here because of her. I'm so glad she was able to make it work in her schedule to be here again for another week. I'm not sure how I would have made it through the "endless" Friday, if it hadn't been for her. She managed to do all the wash, as well. But her greatest contribution was her perspective, which made me feel supported and loved through the day in and day out of my treatment. Thank you, mom. I love you so much.
Kirk reports now that the cat has chewed out all of his stitches, despite doctor's orders that he not do this. Amazingly, it appears he is unscathed by his behavior. The surgical wound has healed, though Kirk is going to ask the vet it there's anything that he should watch for. That cat just will not be held down by anything.
These days I, too, find myself chewing out my own "stitches," but in the emotional world...not the physical. I am at day 33. The earliest anyone has gone home from this experience is day 84. That leaves 51 days...about one month and a half...before I can hope to go home. Thank God there are little victories along the way. For example, when I was suddenly reduced from going into the outpatient clinic 7 days a week to only 3 days a week. My next step will be reduction to 2 days a week...probably Tuesdays and Fridays (according to my APN.) But I will be happiest when I can start reducing the amount of Cyclosporine I'm taking. August 10th will be another major step because I'll have a bone marrow biopsy that will indicate what is going on with the cancer. Of course, I know they'll find nothing. I'm just looking forward to the proof of my healing.
I'm having I must admit some issues with loneliness. I had mom here and that helped. I have Jacob here and that is wonderful. But I miss Kirk, who I get to see so rarely it is really starting to bother me. Talking to him on the phone sometimes actually just makes it worse. I don't know how to explain this. Mom sends lots of cards. People do call. I wish it were possible to exchange the presence of my loving husband for the presence of others, but it just can't be done. I miss him terribly and find myself resenting anyone and anything that prevents him from being here. It is almost unbearable to go through this last treatment for the cancer without him. The few days he was here were awesome, though three days can hardly make up for the ten he had to be gone.
Tonight Jacob and I will make a trek to a drive-in movie theater, so we can see a movie on the big screen. Of course, it wouldn't be prudent for me to go see a movie in a movie theater right now. I'm being very careful about protecting myself from catching anything, as my doctors recommend. I hope I have enough energy to go through with it. The movie starts at 9PM and probably won't be over until around 11PM. Then I'll have to drive back to the apartment. I feel as if it will be okay, but I'll just have to take it as it comes. If I'm not ready to leave at 8PM, then we'll wait until Kirk is here to give this a try.
Kirk has noticed that I have a few more typos in my blog lately. He's worried that this is a sign that things are "not as they should be" with me. I want everyone to know...it's true: things aren't "as they should be," but only because I miss Kirk so much. I often read over the blog and notice these typos. I just don't have any motivation to go back and change them. Motivation for me has often come from Kirk. I mean, I'm able to motivate myself...and have for years...but now that I'm weakened physically as well...my motivation has slipped a bit. Especially without my sweetheart here.
I love Kirk so much.
Saturday, July 7, 2007
Two More Units Friday
Since I felt well enough to travel a little bit, we all took a trip to Tomball to see my aunt Daphne today. She's living in an assisted living complex there, but may have to move because of a recent incident. She's taking hydrocodone for pain, and I blame it entirely for any erratic behaviors she may be exhibiting. Apparently she's been knocking on neighbors doors late at night when the train goes by or when she doesn't get an immediate response from her caregiver who comes when she pulls a cord.
Hydrocodone is one of those medications that I believe can make you rather paranoid, if you take it long enough. And I think she's been taking it long enough. I had much better luck with Ultram, but it takes more effort on the doctor's part to prescribe it. Something about triplicate forms.
Friday was one crazy long day at MD Anderson. We arrived at our usual time at the Diagnostic area to give a blood sample. Once again the phlebotomist didn't know that I was "holding" my cyclosporine until after the blood draw. I decided to put my foot down and ask her to call my team to set things on the right schedule. I had this feeling that my cyclosporine levels hadn't been check for almost two weeks.
Next, we were on our way to the 10th floor where we proceeded to wait almost an hour and a half for a room. At 12:30PM, I joked about starting a riot, but didn't get a lot of energy for or against. People were just too sick to fight back. Finally I got a room. The three of us--mom, me and Jacob--snuggled into the room. By this time, I'd started to get a migraine again. Very discouraging. I prayed. Turned out the lights. Thought of what pills I could take. But nothing was working.
When the nurse who sets up my Magnesium drip arrived, I poured out my woes to her. Fortunately, this brought my team. I now have a new Pharm D named Jamie and Lynn, my APN, was back from vacation. I explained what was going on with the migraines. Lynn had already ordered two units of blood for the day, since my hemogoblin was low again. Lynn suggested that lack of oxygen from low blood may be the reason for the migraines of late. That made sense to me, but she also asked if it might be sinusitus. I agreed it might be related, so they're going to do a CT scan on Monday to check for that. Frankly, I'm glad. If I have a sinus infection, it would certainly explain some of my symptoms.
So instead of just taking the usual migraine meds for the headache that came up today after my visit to Aunt Daphne, I also took a sinus med. It actually helped and gave me some relief. So Lynn may be right. We'll see on Monday.
Mom leaves tomorrow for Santa Fe and it'll be just Jacob and me again. I'm surely going to miss her. Kirk is home nursing the cat back to health. He's eating wet food now and appears to have ripped out all of his stitches (which he wasn't supposed to do...by the way.)
Meanwhile, I am actually started to feel like my old self again. It's great. I can watch stuff on television without crying and food tastes good to me. I still don't eat as much as I did, but I wonder if I ever will. Food just isn't that important to me any more.
I'm hoping the infusion of extra red blood has done the trick and pray that I won't need more again on Friday again. I would really like to get off this Cyclosporine. Slowly. The way they talk about doing it when it's time. Whatever the case, I'm feeling stronger these days. Maybe I'm sleeping more. Anyway, I just thank God that I'm heading in the right direction. My hair is growing and people say I look healthy. That makes me feel so good.
Thanks to all of you sending cards and letters. It means a lot. It is very difficult to go through something like this and your cards and letters let me know you care. (The address is on the right had side in the messages section of the blog.) Call if you like, as well. My cell has the number for the apartment land line on it. If I don't answer my cell, please use the land line. There's always some good reason I can't answer it. Rarely, I'm just too tired. But most of the time the reception on the cell is just not good or I'm running out of minutes on my cell.
I continue to ask and desire for you all to pray. With no signs of GVHD, I know God's intervention due to your prayers is a big part of the reason. August is still wide open as to a caregiver. Maybe it's just God's will for me to be here alone Monay through Thursday. Right now, I'm pretty sure it would not be a good thing. But in August...who's to say how I'll feel?
Hydrocodone is one of those medications that I believe can make you rather paranoid, if you take it long enough. And I think she's been taking it long enough. I had much better luck with Ultram, but it takes more effort on the doctor's part to prescribe it. Something about triplicate forms.
Friday was one crazy long day at MD Anderson. We arrived at our usual time at the Diagnostic area to give a blood sample. Once again the phlebotomist didn't know that I was "holding" my cyclosporine until after the blood draw. I decided to put my foot down and ask her to call my team to set things on the right schedule. I had this feeling that my cyclosporine levels hadn't been check for almost two weeks.
Next, we were on our way to the 10th floor where we proceeded to wait almost an hour and a half for a room. At 12:30PM, I joked about starting a riot, but didn't get a lot of energy for or against. People were just too sick to fight back. Finally I got a room. The three of us--mom, me and Jacob--snuggled into the room. By this time, I'd started to get a migraine again. Very discouraging. I prayed. Turned out the lights. Thought of what pills I could take. But nothing was working.
When the nurse who sets up my Magnesium drip arrived, I poured out my woes to her. Fortunately, this brought my team. I now have a new Pharm D named Jamie and Lynn, my APN, was back from vacation. I explained what was going on with the migraines. Lynn had already ordered two units of blood for the day, since my hemogoblin was low again. Lynn suggested that lack of oxygen from low blood may be the reason for the migraines of late. That made sense to me, but she also asked if it might be sinusitus. I agreed it might be related, so they're going to do a CT scan on Monday to check for that. Frankly, I'm glad. If I have a sinus infection, it would certainly explain some of my symptoms.
So instead of just taking the usual migraine meds for the headache that came up today after my visit to Aunt Daphne, I also took a sinus med. It actually helped and gave me some relief. So Lynn may be right. We'll see on Monday.
Mom leaves tomorrow for Santa Fe and it'll be just Jacob and me again. I'm surely going to miss her. Kirk is home nursing the cat back to health. He's eating wet food now and appears to have ripped out all of his stitches (which he wasn't supposed to do...by the way.)
Meanwhile, I am actually started to feel like my old self again. It's great. I can watch stuff on television without crying and food tastes good to me. I still don't eat as much as I did, but I wonder if I ever will. Food just isn't that important to me any more.
I'm hoping the infusion of extra red blood has done the trick and pray that I won't need more again on Friday again. I would really like to get off this Cyclosporine. Slowly. The way they talk about doing it when it's time. Whatever the case, I'm feeling stronger these days. Maybe I'm sleeping more. Anyway, I just thank God that I'm heading in the right direction. My hair is growing and people say I look healthy. That makes me feel so good.
Thanks to all of you sending cards and letters. It means a lot. It is very difficult to go through something like this and your cards and letters let me know you care. (The address is on the right had side in the messages section of the blog.) Call if you like, as well. My cell has the number for the apartment land line on it. If I don't answer my cell, please use the land line. There's always some good reason I can't answer it. Rarely, I'm just too tired. But most of the time the reception on the cell is just not good or I'm running out of minutes on my cell.
I continue to ask and desire for you all to pray. With no signs of GVHD, I know God's intervention due to your prayers is a big part of the reason. August is still wide open as to a caregiver. Maybe it's just God's will for me to be here alone Monay through Thursday. Right now, I'm pretty sure it would not be a good thing. But in August...who's to say how I'll feel?
Thursday, July 5, 2007
A Cat and a Spool of Thread
Kirk arrived in Houston as planned despite our cat who managed to get himself into a (literal) bind by swallowing almost half a spool of thread. Thankfully, Kirk got him to the vet in time. The cat did end up having to be knocked out while the vet tried to carefully pull out the thread. Unfortunately, he had swallowed just too much, so he had to have the ball of string surgically removed. It had even gone into his intestine a little. But he is recovering at the vet's even as I speak and Kirk cut his visit short to go an tend to him. Good for the cat, but not so good for me...since I only had a few days with Kirk before he has to turn around and go back to Dallas. Kirk promised to return as soon as possible, so I'm okay.
My counts on the 4th of July were very good, though the Magnesium could still be higher. My white blood was actually in the normal range! Everyone is pleased with my progress (by God's grace.) I have finally started to feel as if I have more energy. I even got an unexpected migraine, which usually means other things are returning to normal in my body. Though I hated having the migraine, it was a nice sign that my cycle may be returning to me. They gave me a bunch of meds in my IV to help me with it on Wednesday...so many meds that I had to be wheeled out to the car by Kirk. I think I fell asleep in the chair in the elevator. Of course, even those meds did not knock out the migraine until I had really slept for a bit at home. Then, like in the old days, my migraine returned and I was able to catch it soon enough and bring it under control.
Today, I actually had enough energy to go shopping with mom and Kirk! Then we ate out at a Mexican food restaurant with few patrons (for some reason...even though it's very good.) Thank you, Jesus. I feel almost normal again. It doesn't hurt to walk. My muscles aren't sore. I am eating well. Not like I used to eat, but my appetite is really good. I also sleep well most nights.
My former sister-in-law, Lynn, called out of the blue. She is a caregiver and may know someone in this area who could be paid to help me out in the month of August...which is still a blank slate in terms of having someone with me during the days of the week through Thursday. It was so great talking to her. She is one of the most angelic women I've ever known in all my life. She's amazing! She lived in this area for some time and promised to contact her church to see if they know of someone I could pay for care.
Insurance at Kirk's work has now switched to United Health Care, but it looks as if the coverage for lodging during a transplant is the same as it was under Aetna. It took FOREVER for me to get to the person who knew this information, but I finally got it figured out. There was a problem with one of the antibiotics being covered because it needed "pre-approval," but somehow it was worked out.
Thanks to all of you who've been praying me to wellness. I ask God daily to bless you in whatever way you specifically need blessing. It is a very good thing you have done for me. I thank you from the bottom of my heart.
My counts on the 4th of July were very good, though the Magnesium could still be higher. My white blood was actually in the normal range! Everyone is pleased with my progress (by God's grace.) I have finally started to feel as if I have more energy. I even got an unexpected migraine, which usually means other things are returning to normal in my body. Though I hated having the migraine, it was a nice sign that my cycle may be returning to me. They gave me a bunch of meds in my IV to help me with it on Wednesday...so many meds that I had to be wheeled out to the car by Kirk. I think I fell asleep in the chair in the elevator. Of course, even those meds did not knock out the migraine until I had really slept for a bit at home. Then, like in the old days, my migraine returned and I was able to catch it soon enough and bring it under control.
Today, I actually had enough energy to go shopping with mom and Kirk! Then we ate out at a Mexican food restaurant with few patrons (for some reason...even though it's very good.) Thank you, Jesus. I feel almost normal again. It doesn't hurt to walk. My muscles aren't sore. I am eating well. Not like I used to eat, but my appetite is really good. I also sleep well most nights.
My former sister-in-law, Lynn, called out of the blue. She is a caregiver and may know someone in this area who could be paid to help me out in the month of August...which is still a blank slate in terms of having someone with me during the days of the week through Thursday. It was so great talking to her. She is one of the most angelic women I've ever known in all my life. She's amazing! She lived in this area for some time and promised to contact her church to see if they know of someone I could pay for care.
Insurance at Kirk's work has now switched to United Health Care, but it looks as if the coverage for lodging during a transplant is the same as it was under Aetna. It took FOREVER for me to get to the person who knew this information, but I finally got it figured out. There was a problem with one of the antibiotics being covered because it needed "pre-approval," but somehow it was worked out.
Thanks to all of you who've been praying me to wellness. I ask God daily to bless you in whatever way you specifically need blessing. It is a very good thing you have done for me. I thank you from the bottom of my heart.
Monday, July 2, 2007
Overcast Day
It looks so overcast outside that I wonder if Houston has any chance of being able to see fireworks on the 4th in two days. It's been like this for a day or two, so there's always that chance it'll burn off.
I heard from my former sister-in-law, Lynn, last night. She called because she'd just heard about my illness. She is actually a caregiver right now for an older lady. She has friends at a church in the Houston area, and she said she'd see if there was anyone available in August that we could pay to live with me.
I'm not sure I'll need it, but I think it would be nice to have a companion during that period of time. Lynn said she'd get back to me about it next week.
The only thing that hurts these days is my feet. The more I walk around the less they hurt, so I'm going to make every effort to do so today. I guess all this sleeping and sitting around (due to lack of energy) has had an effect on my feet. They don't really hurt they just ache and tingle a little now and then.
Tomorrow, it's back to the outpatient clinic. I'm curious to know how the hemoglobin will read since I had a unit of blood on Friday. I think I am only feeling the good effects of that today. They said it would give me a boost of energy.
Kirk says the kitty is coming back to normal. I think he's going to be fine. He's hiring a little girl down the street to come and take care of our animals while he's down here in Houston. I sure do look forward to seeing him this Wednesday. Sometimes I think it is missing him that makes me feel worse than I actually am physically.
I heard from my former sister-in-law, Lynn, last night. She called because she'd just heard about my illness. She is actually a caregiver right now for an older lady. She has friends at a church in the Houston area, and she said she'd see if there was anyone available in August that we could pay to live with me.
I'm not sure I'll need it, but I think it would be nice to have a companion during that period of time. Lynn said she'd get back to me about it next week.
The only thing that hurts these days is my feet. The more I walk around the less they hurt, so I'm going to make every effort to do so today. I guess all this sleeping and sitting around (due to lack of energy) has had an effect on my feet. They don't really hurt they just ache and tingle a little now and then.
Tomorrow, it's back to the outpatient clinic. I'm curious to know how the hemoglobin will read since I had a unit of blood on Friday. I think I am only feeling the good effects of that today. They said it would give me a boost of energy.
Kirk says the kitty is coming back to normal. I think he's going to be fine. He's hiring a little girl down the street to come and take care of our animals while he's down here in Houston. I sure do look forward to seeing him this Wednesday. Sometimes I think it is missing him that makes me feel worse than I actually am physically.
Sunday, July 1, 2007
Mom Is Back in Houston!
I was feeling a bit sick today, so I'm glad mom is here. I slept four hours after we got back from the airport, then woke up very hungry. That's always a good sign. I'm hungry even as I write this blog. Maybe that's one of the things that's bothering me. I'm just not used to being all that hungry of late.
I even took my temperature. It was only slightly above normal. Mom's making dinner and I'm so blessed to have her here. Now Jacob can relax and be a kid, and I can relax and not feel well if that's what I'm feeling.
Please pray for my kitty at home. He's been a bit lethargic these last few days. Kirk says he's on the mend, since he's started eating and coming around for pets again. If he's not totally up to snuff soon, Kirk'll be taking him to the vet for a check up. I think Kirk may have let the kitty litter go to long. So he was throwing up.
It's time for dinner, so I'm going to go eat. Since I'm so hungry and all.
I even took my temperature. It was only slightly above normal. Mom's making dinner and I'm so blessed to have her here. Now Jacob can relax and be a kid, and I can relax and not feel well if that's what I'm feeling.
Please pray for my kitty at home. He's been a bit lethargic these last few days. Kirk says he's on the mend, since he's started eating and coming around for pets again. If he's not totally up to snuff soon, Kirk'll be taking him to the vet for a check up. I think Kirk may have let the kitty litter go to long. So he was throwing up.
It's time for dinner, so I'm going to go eat. Since I'm so hungry and all.
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