After consulting with my insurance company and doctor, we have decided that I will receive all of the chemo as an inpatient, overnight. The co-pay is lower, and there are medical reasons supporting the decision.
Sigh. There was something else I wanted to post. Maybe I'll remember later.
Friday, January 30, 2009
Tuesday, January 27, 2009
What's next?
3pm: update at bottom
Status
As far as the leukemia goes, I'm healthier than I've been in a long time. I feel good. I finally seem to have gotten rid of the water weight from the steroids. I'm regaining my strength and stamina. My vision seemed to have changed while I was inpatient. It might have been a side effect, or it might have been never looking more than ten feet ahead; that seems to be improving today.
Treatment
I've completed the first of six rounds of chemo in this treatment cycle.
That accomplished the goal of destroying and flushing out the defective lymphocytes that were overwhelming my system. We put out the fire.
I need five more rounds to suppress the cells that are turning out bad lymphocytes in the first place. That will be seeking out and suppressing any hot spots.
Each chemo treatment will destroy my immune system, so for the next four months I will cycle between feeling great and having few limitations and feeling awful with many limitations. We don't know to what extent the side effects of the treatment will return. Although we don't expect them to ever be as bad as the last two weeks, we can't guarantee that. I may require hospitalization again. Because of my underlying auto-immune disorders I will almost certainly require red cell transfusions every cycle.
Each cycle will consist of a treatment, a period when my blood counts are falling, and I am most vulnerable, a period when they are rising, and a recovery period until the next session.
My next session is scheduled for next Wednesday, February 4, 2009. Now 2/11.
Game plan
I have a lot to do this week.
I left the hospital with more medication and protocols than I've ever dealt with. I need to establish routines and a tracking system to ensure that I protect my health and get the full benefit of the treatment. I need to become confident as an insulin dependent diabetic. I need to establish a little clinic area where I can organize my new supplies and assess and track my status, so that, when I'm sick and vulnerable, I can recognize the need for intervention right away. And I need all of these in place before my next treatment.
While I was in the hospital my friends did an absolutely amazing job of damage control. They removed the garbage and fresh food, washed the dishes, took the laundry home and returned it, took things to me in the hospital, brought them back with me. I cannot imagine how different yesterday would have been without their help, but it wasn't obvious where everything lives. I need to put things away.
The week before my admission I spent most of my time in my recliner. I felt well, but I had absolutely no stamina. (Funny what the absence of red blood cells will do!) The six weeks before that, as I dealt with increasing fatigue, I left routine things undone. I need to clean up and put away things I left lying around during that time.
Then there's the mail. Piles of mail. Bags of mail. Some of it is probably important. And I need to set up a system for the many, many bills I expect to receive.
None of that even touches recovering from the involuntary "upgrade" to my apartment last July. My office is unusable, but as my strength failed, that just wasn't at the top of the list.
More important than those last two, however, is the need to rebuild my general strength and wellness. Between the problems from my neck injury and the fatigue of the leukemia, I've lost a horrendous amount of general conditioning and fitness. My neck is fixed, the leukemia is being treated...I need to begin reclaiming lost ground.
So here's my plan
I've laid this all out, hoping to answer the questions many of you have about the next few months of my treatment.
I plan to spend today and tomorrow establishing the physical space and routines for my medical needs. I will begin incorporating a general fitness program, as well.
I plan to spend the rest of this week putting things away.
I plan to spend early next week putting things in place for my next treatment cycle: clothes, food, etc.
And I don't plan to spend a lot of time here.
We'll see how it works.
Update: It doesn't. The kitchen needs to be done first, so that I can easily prepare meals, and everything is going to take longer. I've had to go back to preparing meals as I did when my neck was bad, one step at a time, sitting down. When I was only halfway through preparing lunch, at 2:30 pm, and exhausted, I ate last night's leftovers.
Status
As far as the leukemia goes, I'm healthier than I've been in a long time. I feel good. I finally seem to have gotten rid of the water weight from the steroids. I'm regaining my strength and stamina. My vision seemed to have changed while I was inpatient. It might have been a side effect, or it might have been never looking more than ten feet ahead; that seems to be improving today.
Treatment
I've completed the first of six rounds of chemo in this treatment cycle.
That accomplished the goal of destroying and flushing out the defective lymphocytes that were overwhelming my system. We put out the fire.
I need five more rounds to suppress the cells that are turning out bad lymphocytes in the first place. That will be seeking out and suppressing any hot spots.
Each chemo treatment will destroy my immune system, so for the next four months I will cycle between feeling great and having few limitations and feeling awful with many limitations. We don't know to what extent the side effects of the treatment will return. Although we don't expect them to ever be as bad as the last two weeks, we can't guarantee that. I may require hospitalization again. Because of my underlying auto-immune disorders I will almost certainly require red cell transfusions every cycle.
Each cycle will consist of a treatment, a period when my blood counts are falling, and I am most vulnerable, a period when they are rising, and a recovery period until the next session.
My next session is scheduled for next Wednesday, February 4, 2009. Now 2/11.
Game plan
I have a lot to do this week.
I left the hospital with more medication and protocols than I've ever dealt with. I need to establish routines and a tracking system to ensure that I protect my health and get the full benefit of the treatment. I need to become confident as an insulin dependent diabetic. I need to establish a little clinic area where I can organize my new supplies and assess and track my status, so that, when I'm sick and vulnerable, I can recognize the need for intervention right away. And I need all of these in place before my next treatment.
While I was in the hospital my friends did an absolutely amazing job of damage control. They removed the garbage and fresh food, washed the dishes, took the laundry home and returned it, took things to me in the hospital, brought them back with me. I cannot imagine how different yesterday would have been without their help, but it wasn't obvious where everything lives. I need to put things away.
The week before my admission I spent most of my time in my recliner. I felt well, but I had absolutely no stamina. (Funny what the absence of red blood cells will do!) The six weeks before that, as I dealt with increasing fatigue, I left routine things undone. I need to clean up and put away things I left lying around during that time.
Then there's the mail. Piles of mail. Bags of mail. Some of it is probably important. And I need to set up a system for the many, many bills I expect to receive.
None of that even touches recovering from the involuntary "upgrade" to my apartment last July. My office is unusable, but as my strength failed, that just wasn't at the top of the list.
More important than those last two, however, is the need to rebuild my general strength and wellness. Between the problems from my neck injury and the fatigue of the leukemia, I've lost a horrendous amount of general conditioning and fitness. My neck is fixed, the leukemia is being treated...I need to begin reclaiming lost ground.
So here's my plan
I've laid this all out, hoping to answer the questions many of you have about the next few months of my treatment.
I plan to spend today and tomorrow establishing the physical space and routines for my medical needs. I will begin incorporating a general fitness program, as well.
I plan to spend the rest of this week putting things away.
I plan to spend early next week putting things in place for my next treatment cycle: clothes, food, etc.
And I don't plan to spend a lot of time here.
We'll see how it works.
Update: It doesn't. The kitchen needs to be done first, so that I can easily prepare meals, and everything is going to take longer. I've had to go back to preparing meals as I did when my neck was bad, one step at a time, sitting down. When I was only halfway through preparing lunch, at 2:30 pm, and exhausted, I ate last night's leftovers.
Monday, January 26, 2009
Hi! I'm home!
I'm home from the hospital. I have not reconnected my computer, and probably won't tonight. I did charge it before I packed it.
My cable modem, on the other hand, was never disconnected.
I can use my computer tonight as long as the charge from hospital lasts.
I'm home. The day went well. Some of my biggest concerns turned out not to be problems.
Yes, I'm tired. I'm also healthier than I've been in a long time.
I have a lot to do, in a lot of different areas, starting with getting all my new medications straight.
But I'm home, and it feels good.
Thanks!
Flo
My cable modem, on the other hand, was never disconnected.
I can use my computer tonight as long as the charge from hospital lasts.
I'm home. The day went well. Some of my biggest concerns turned out not to be problems.
Yes, I'm tired. I'm also healthier than I've been in a long time.
I have a lot to do, in a lot of different areas, starting with getting all my new medications straight.
But I'm home, and it feels good.
Thanks!
Flo
Today's the day!
I'm being discharged from the hospital today!
I've seen my doctors, had my questions answered, cleaned up.
I've set up my next chemo session, talked about what to expect, talked about what to take.
I've talked to the discharge nurse, who will remove the outer part of the port on my chest, tell me how much insulin to take and give me prescriptions to continue at home.
After two weeks of outstanding food, breakfast was awful.
See you soon!
I've seen my doctors, had my questions answered, cleaned up.
I've set up my next chemo session, talked about what to expect, talked about what to take.
I've talked to the discharge nurse, who will remove the outer part of the port on my chest, tell me how much insulin to take and give me prescriptions to continue at home.
After two weeks of outstanding food, breakfast was awful.
See you soon!
Sunday, January 25, 2009
Starting to add to the inpatient blog... rooms
It's been a busy week for me. I'm happy with my decision to create a supplemental blog about my inpatient stay, but I've had no chance to get back and work on it.
I know that many of you have questioned the number of room changes I've experienced. Some of you have become quite indignant on my behalf. My first post will be a travelogue.
I know that many of you have questioned the number of room changes I've experienced. Some of you have become quite indignant on my behalf. My first post will be a travelogue.
Look out, world!
My oncologist's partner visited me this morning. He isn't releasing me today, but thought it a good possibility she will tomorrow. When I reminded him that my friend is available to pick me up tomorrow, but not Tuesday, he laughed.
The internist told me later that there is a note on my chart, "May go home Monday."
Remember those red blood cells we were waiting for? For two days? And I said that Heavenly Father knew what I needed and when I needed it? The blood arrived at 4 am today, nearly 48 hours after it was ordered. The blood blank protested the transfusion; they felt my red cell count was too high. They woke me up at 5 am to make me read out loud to a witness a statement about criteria. They called the oncologist on call, too.
When my blood was drawn later my red cell count had gone up on its own.
Flo
The internist told me later that there is a note on my chart, "May go home Monday."
Remember those red blood cells we were waiting for? For two days? And I said that Heavenly Father knew what I needed and when I needed it? The blood arrived at 4 am today, nearly 48 hours after it was ordered. The blood blank protested the transfusion; they felt my red cell count was too high. They woke me up at 5 am to make me read out loud to a witness a statement about criteria. They called the oncologist on call, too.
When my blood was drawn later my red cell count had gone up on its own.
Flo
Saturday, January 24, 2009
Time to leave...
I feel well. I'm thinking clearly, most of the time. I've been tired today, waiting for the blood and having low blood sugar, but that's ok. I worked hard this week; I'm enjoying the weekend.
I've packed up the stuff I'm not using. I've started making notes for future treatment cycles and to share with others. I ranted for 25 minutes today, with my door open, about a medical philosophy that sees a human with diabetes as broken, with an unalterable downward future, when I am proof that is not true.
It's time to leave.
P.S. My doctors are wonderful! They support me in my choices. They are supporting my choices even in the hospital, when the cancer treatment is aggravating the diabetes. I was ranting after reading the Diabetes patient information they gave me.
I've packed up the stuff I'm not using. I've started making notes for future treatment cycles and to share with others. I ranted for 25 minutes today, with my door open, about a medical philosophy that sees a human with diabetes as broken, with an unalterable downward future, when I am proof that is not true.
It's time to leave.
P.S. My doctors are wonderful! They support me in my choices. They are supporting my choices even in the hospital, when the cancer treatment is aggravating the diabetes. I was ranting after reading the Diabetes patient information they gave me.
Status check
Morning all!
1) I may disappear from cyberspace abruptly.
Heavenly Father provided this laptop for my use when I really needed it. I've accomplished what I most needed, I've made arrangements with my friends to take me home, I've done a little business...I'm ready to let it go when another patient needs it. That could happen at any time, theoretically.
2) That would leave me with just my camera and my own laptop. :)
I did some good digi-scrapping last weekend, but haven't touched my own computer since getting wi-fi. I have a lot of ideas I want to play with. Since I'm feeling confident that things are in order for my discharge, I've finished formal PT and OT, I'm expecting only one more appointment this weekend, other than routine medical checks...I can play!
Oh...and my red cells are down a little, and I'm getting a transfusion today. Sitting in a chair, or my bed, playing on my laptop, sounds real good.
3) medical status
My lymphocytes are down around where they were when I was diagnosed!!!
My red cells are down a little more, but I'm getting a "top off" transfusion today, to see me through until the next chemo cycle.
My neutrophils, the ones that protect me, are still low. My doctors would rather not discharge me until they return to normal. The partner who is seeing me this weekend won't; my own doctor, when she returns on Monday, has the option.
I'll be getting a transfusion today if the blood ever comes through.
My pre-existing auto-immune disorders make it very difficult to find blood for me. The first batch took a few hours. The second batch took about 12 hours. This batch has so far taken more than 24 hours, and it's still not here.
4) Summary
After talking with my doctor and nurse today, I now expect to be discharged on Monday. That is not set in stone, but it feels right.
Thank you, all!
Flo
1) I may disappear from cyberspace abruptly.
Heavenly Father provided this laptop for my use when I really needed it. I've accomplished what I most needed, I've made arrangements with my friends to take me home, I've done a little business...I'm ready to let it go when another patient needs it. That could happen at any time, theoretically.
2) That would leave me with just my camera and my own laptop. :)
I did some good digi-scrapping last weekend, but haven't touched my own computer since getting wi-fi. I have a lot of ideas I want to play with. Since I'm feeling confident that things are in order for my discharge, I've finished formal PT and OT, I'm expecting only one more appointment this weekend, other than routine medical checks...I can play!
Oh...and my red cells are down a little, and I'm getting a transfusion today. Sitting in a chair, or my bed, playing on my laptop, sounds real good.
3) medical status
My lymphocytes are down around where they were when I was diagnosed!!!
My red cells are down a little more, but I'm getting a "top off" transfusion today, to see me through until the next chemo cycle.
My neutrophils, the ones that protect me, are still low. My doctors would rather not discharge me until they return to normal. The partner who is seeing me this weekend won't; my own doctor, when she returns on Monday, has the option.
I'll be getting a transfusion today if the blood ever comes through.
My pre-existing auto-immune disorders make it very difficult to find blood for me. The first batch took a few hours. The second batch took about 12 hours. This batch has so far taken more than 24 hours, and it's still not here.
4) Summary
After talking with my doctor and nurse today, I now expect to be discharged on Monday. That is not set in stone, but it feels right.
Thank you, all!
Flo
Friday, January 23, 2009
Going home, going home...
Barring major surprises, I will be discharged on Sunday or Monday, Jan. 25 or 26, 2009.
My home is ready and my ride arranged, thanks to wonderful friends.
This week I have made absolutely amazing progress. On Monday I looked and felt like the Firestone man, the result of fluid retention, as much as 50 pounds. I couldn't wiggle my ankles; getting in and out of bed was a major chore. I celebrated my accomplishments: I cut my lunch by myself. I brushed my hair.
By Wednesday I had started Physical Therapy, to regain my strength and stamina. Walking once around the nurses' station, with a walker, was a big deal. Also, a laptop had been delivered, courtesy of a local foundation, and I began to reconnect with the world.
Today I was discharged from PT; I still have homework to do, but no longer need supervision and instruction, just persistence. I've spent some time on my business, requested help for my concerns about returning home alone and worked with friends to make it happen.
I've controlled diabetes for twelve years without medication through lifestyle modification. The drugs that saved my life have changed that, temporarily. Today I filled and injected my insulin, all by myself! Even more important, I've done so well getting back to my regular routine that this morning I didn't need any.
It's Friday night, and there's nothing on my To Do list!
And that's a good thing. My red cells no longer die overnight, but they still don't stick around long enough. I'm waiting for a transfusion, a "top off" to carry me to my next chemo cycle, but it won't be available until tomorrow. I'm tired, and the mental focus that has carried me through the week is slipping. Well, has slipped.
So I'll sign off, and relax, and maybe do a little digi-scrapping. Or maybe just nap.
Thanks!
My home is ready and my ride arranged, thanks to wonderful friends.
This week I have made absolutely amazing progress. On Monday I looked and felt like the Firestone man, the result of fluid retention, as much as 50 pounds. I couldn't wiggle my ankles; getting in and out of bed was a major chore. I celebrated my accomplishments: I cut my lunch by myself. I brushed my hair.
By Wednesday I had started Physical Therapy, to regain my strength and stamina. Walking once around the nurses' station, with a walker, was a big deal. Also, a laptop had been delivered, courtesy of a local foundation, and I began to reconnect with the world.
Today I was discharged from PT; I still have homework to do, but no longer need supervision and instruction, just persistence. I've spent some time on my business, requested help for my concerns about returning home alone and worked with friends to make it happen.
I've controlled diabetes for twelve years without medication through lifestyle modification. The drugs that saved my life have changed that, temporarily. Today I filled and injected my insulin, all by myself! Even more important, I've done so well getting back to my regular routine that this morning I didn't need any.
It's Friday night, and there's nothing on my To Do list!
And that's a good thing. My red cells no longer die overnight, but they still don't stick around long enough. I'm waiting for a transfusion, a "top off" to carry me to my next chemo cycle, but it won't be available until tomorrow. I'm tired, and the mental focus that has carried me through the week is slipping. Well, has slipped.
So I'll sign off, and relax, and maybe do a little digi-scrapping. Or maybe just nap.
Thanks!
Wednesday, January 21, 2009
Heavenly Father will provide
I finally recognized that I've been pretty stressed this week. With information changing quickly I have panicked.
Please, accept my apologies. I didn't mean to take it out on those I love and trust.
The hand of God has been absolutely clear during my stay here, over and over and over. He knows what I need. He knows when I need it. He knows when I need to just stop what I'm doing, to listen, to breathe, to ponder.
I have been blessed these two weeks, repeatedly. Is everything great? No, of course not. This is not how I would have chosen to spend this time. And money!
But it has been a positive experience, a life-changing time, from which I see an enormous potential for good.
I'm going to do my best to relax, to trust the Lord, to wait on His timetable. Everything will get done that needs to get done.
Thank you, all. I appreciate your prayers, and keep you in mine.
Good night!
Flo
Please, accept my apologies. I didn't mean to take it out on those I love and trust.
The hand of God has been absolutely clear during my stay here, over and over and over. He knows what I need. He knows when I need it. He knows when I need to just stop what I'm doing, to listen, to breathe, to ponder.
I have been blessed these two weeks, repeatedly. Is everything great? No, of course not. This is not how I would have chosen to spend this time. And money!
But it has been a positive experience, a life-changing time, from which I see an enormous potential for good.
I'm going to do my best to relax, to trust the Lord, to wait on His timetable. Everything will get done that needs to get done.
Thank you, all. I appreciate your prayers, and keep you in mine.
Good night!
Flo
The Rest of the Story....
On your right please notice a new section, The Rest of the Story.
I have created a new companion blog to contain my anecdotes, whines, laughter, tears -- only once!, travelogue -- eight rooms in 12 days, so far.
That will allow me to (try to) limit this blog to providing information to those trying to help me, without disappointing those who need a good laugh.
And there has been lots of laughter. Lots of blessings, lots of divine intervention, lots of opportunities for service, given and received.
I have been greatly blessed. I appreciate your prayers, your love, your service.
Thank you!
Flo
I have created a new companion blog to contain my anecdotes, whines, laughter, tears -- only once!, travelogue -- eight rooms in 12 days, so far.
That will allow me to (try to) limit this blog to providing information to those trying to help me, without disappointing those who need a good laugh.
And there has been lots of laughter. Lots of blessings, lots of divine intervention, lots of opportunities for service, given and received.
I have been greatly blessed. I appreciate your prayers, your love, your service.
Thank you!
Flo
Tuesday, January 20, 2009
Quick update
Hi!
I have responded very, very well to treatment. Unfortunately, the treatment has wreaked havoc with my body and with my other health problems. I can't seem to keep red blood cells alive for more than a couple of days. Until that changes, we can't set a release date.
This has actually been a very positive experience for me. (Obviously, I haven't seen the bills yet!) I have been greatly blessed, and I appreciate those blessings.
It is clear that I was inspired in some of the decisions and purchases I made in the days right before my admission. They have been invaluable. I was protected when I drove myself to my doctor, on Camelback, on a Friday afternoon, thinking I had a sinus infection, when in fact my hemoglobin was unmeasurable on her equipment. These are just a few examples, but I am deeply grateful.
I moved to a new room, again, Tuesday evening. I don't know the room number or the phone number, but the operator can find me. Oh, wait...it's 1239.
Flo
I have responded very, very well to treatment. Unfortunately, the treatment has wreaked havoc with my body and with my other health problems. I can't seem to keep red blood cells alive for more than a couple of days. Until that changes, we can't set a release date.
This has actually been a very positive experience for me. (Obviously, I haven't seen the bills yet!) I have been greatly blessed, and I appreciate those blessings.
It is clear that I was inspired in some of the decisions and purchases I made in the days right before my admission. They have been invaluable. I was protected when I drove myself to my doctor, on Camelback, on a Friday afternoon, thinking I had a sinus infection, when in fact my hemoglobin was unmeasurable on her equipment. These are just a few examples, but I am deeply grateful.
I moved to a new room, again, Tuesday evening. I don't know the room number or the phone number, but the operator can find me. Oh, wait...it's 1239.
Flo
Hi, everyone, I'm back!
Back online, not back home.
It's been a very, very long and tiring day. I have had two weeks of extreme experiences, which I will post eventually, but not tonight.
I would like to thank you, all, for your generous prayers, blessings, phone calls, service, errands, support, support of my out of town sisters and the other things that have made this difficult time not just bearable but a positive experience. Thank you!
I am online through the generosity of www.theblf.org, a foundation which donated wi-fi laptops for the use of onco patients at Good Sam. The story behind the foundation is impressive; I encourage you to read it. I cannot express my gratitude enough for this gift. I have the use of the computer until either I leave or another patient needs one and I've had this the longest. (There are three computers which rotate through the unit.)
I'll try to post a real update tomorrow; for now I'll just say things are going very, very well, although there is still no release date in sight.
And, yes, I'm going to make another, begging post. It's just physically much easier for me to type than to speak or write, and I can reach all my local friends at one shot.
Flo
It's been a very, very long and tiring day. I have had two weeks of extreme experiences, which I will post eventually, but not tonight.
I would like to thank you, all, for your generous prayers, blessings, phone calls, service, errands, support, support of my out of town sisters and the other things that have made this difficult time not just bearable but a positive experience. Thank you!
I am online through the generosity of www.theblf.org, a foundation which donated wi-fi laptops for the use of onco patients at Good Sam. The story behind the foundation is impressive; I encourage you to read it. I cannot express my gratitude enough for this gift. I have the use of the computer until either I leave or another patient needs one and I've had this the longest. (There are three computers which rotate through the unit.)
I'll try to post a real update tomorrow; for now I'll just say things are going very, very well, although there is still no release date in sight.
And, yes, I'm going to make another, begging post. It's just physically much easier for me to type than to speak or write, and I can reach all my local friends at one shot.
Flo
Wednesday, January 7, 2009
Follow up to Inpatient packing list post
After posting my last entry I decided to check out the web site for the hospital my doctors use. Banner Good Samaritan Medical Center
No mention of wi-fi. Doesn't look as if they welcome laptops, either.
No mention of wi-fi. Doesn't look as if they welcome laptops, either.
Inpatient chemo packing list
I asked my friend who just beat leukemia what I might want at the hospital. Here's her reply:
My additions, after reading her list:
Now, this doesn't mean that I've agreed to have chemo. I just thought I should be prepared. I plan to pack a bag, in case I am admitted with little notice.Some things that were 'must haves' for me:
- A sleep mask - I went to Target and got a silk eyeshade. The nurses were always running in to see my roommate and flipping the lights on. have
- My MP3 player - Music drowns out the noise when you can't sleep at night and really helps distract you during nasty procedures like bone marrow biopsies. have
- My laptop - my hospital is wireless and I could surf everywhere. have
- snacks - hospital food is hospital food!
- Bran cereal - chemo is very constipating. They give you stuff but a good bowl of bran flakes works wonders!
- To keep your kidneys ok, plan on drinking like a camel who hasn't seen water for a few years. I packed my own mug and tea bags because my floor had a hot water tap.
- Also pack whatever you like to mix into your water. I would drink gallons of H2O, both hot and cold.
- Lotion - I like Bath and Bodyworks True Blue spa line. Chemo will dry your skin out terribly. I would lotion up each night. have
- Biotene toothpaste - for dry mouth. Chemo dries you out and this really helped my teeth and gums survive in great shape. have
- A pedicure - everyone was looking at my feet and legs to check for swelling so a fun pedicure and wacky slippers were very cheery!
Hope this list helps!
Sandy
My additions, after reading her list:
- alkaline batteries, AAA - I doubt I would feel like swapping my rechargeable batteries in and out of the charger.
- Add music to my mp3 player. Right now it's heavily weighted to Scriptures and relaxation.
- Make sure I have my wireless card. I don't use it at home. Also my five-button mouse and charger. have
- snack cups of applesauce and gelatin with fruit. Plastic spoons have.
- Rubbermaid water bottle and/or insulated mug. have
- baggies of trail mix (Cheerios, raisins and M&Ms.) I haven't found my sandwich bags since the remodel.
- small canister of Gatorade have
- herbal tea bags (red raspberry, orange spice, lemon) have
CaringBridge
This is a reminder that I also post on CaringBridge. This site offers seriously ill patients and their families a way to communicate with loved ones without having to make a billion phone calls everytime something happens. Unlike this blog, CaringBridge is specifically designed for the purpose; it offers a journal where I -- or my designee -- can post updates, musings, etc., a guestbook where visitors can sign in and leave messages and a means to automatically create a hard-copy book of the contents, at any time, as a remembrance. It hosts a photo gallery, links to sites that I wish to share, hospital information for visiting.
The features are similar to CarePages, where I also have a page. I learned about CaringBridge when an online friend developed leukemia a year after I did. I prefer the site, and now post updates there exclusively. I'm still in the process of transferring posts from my CaringBridge site.
You will need to know the name of my page. It's flohunt.
The features are similar to CarePages, where I also have a page. I learned about CaringBridge when an online friend developed leukemia a year after I did. I prefer the site, and now post updates there exclusively. I'm still in the process of transferring posts from my CaringBridge site.
You will need to know the name of my page. It's flohunt.
Challenge: 52/365
The second ScrapShare challenge I joined was 52/365, a photography challenge.
Each week we will get an assignment designed to help us explore the functions of our cameras and become proficient at using them. I've been wanting to do that for a very long time, so I'm excited to participate.
The problem isn't the required photographs, or the camera...it's posting my homework! Scrapshare forums don't host photos directly. In order to post my photos in the thread with everyone else's, I have to upload them to another site, go to the forum, post a link back to the photo, then post all the exif information from my camera. It's making me crazy.
Taking the photos was easy; I've posted half of them, with the required info, but the process just seems like too much work, given my current energy level. And the second assignment is probably posted by now.
Each week we will get an assignment designed to help us explore the functions of our cameras and become proficient at using them. I've been wanting to do that for a very long time, so I'm excited to participate.
The problem isn't the required photographs, or the camera...it's posting my homework! Scrapshare forums don't host photos directly. In order to post my photos in the thread with everyone else's, I have to upload them to another site, go to the forum, post a link back to the photo, then post all the exif information from my camera. It's making me crazy.
Taking the photos was easy; I've posted half of them, with the required info, but the process just seems like too much work, given my current energy level. And the second assignment is probably posted by now.
Sunday, January 4, 2009
What's it like, creating a leukemia album?
An online friend, who has just begun preserving the story of a traumatic medical situation, asked me whether I become emotional while working on my leukemia album. Here's my reply.
I've become emotional, but it was almost entirely gratitude and a feeling of security, as I reminded myself of the many blessings that have come into my life.
My circumstances are completely different. Other than the first few months, when I had symptoms related to pushing too hard before my diagnosis, I have felt well. People looking at me would not know I'm ill. My chief symptoms are fatigue and swelling lymph nodes.
The problem is, there is no cure for the type of leukemia I have. I have been taken by surprise recently by my reaction to [another online friend's] completion of treatment. She was diagnosed in June 08 with a very aggressive form of leukemia. She went through a lot of trauma for six months -- difficult treatments, serious complications, separation from her young children -- but she's done. She recently completed treatment. She's still dealing with some side effects, and will face careful follow up for several years, but for all practical purposes, she's cured.
I will never be able to say that.
So, while working on my albums so far has given me warm fuzzies, they are ongoing, and the tough times are ahead. My doctor would like me to have started chemo several months ago, but I'm putting it off as long as possible. It will mean four months of house arrest, few visitors, no fresh produce (to avoid bacteria), unpleasant side effects.
It's normal to re-experience the emotions as we journal them, good and bad. As you mentioned in a post, however, it gets them out, and we can let them go.
Challenge: 52 Blessings
I joined two challenges this year on ScrapShare. One is a scrapbooking challenge, 52 Blessings; I commited to creating a layout each week about a blessing in my life.The only hard part has been limiting myself. I finished the first layout before the thread was even created to post the results; I created my second layout the next day. I've started a couple more. I have to keep reminding myself that there are other tasks that need my attention.
I'm just so grateful for the many blessings in my life that I can't wait to record and share them!
Thursday, January 1, 2009
Former intro to this blog
This is the intro I just replaced on this blog:
Most of you reaching this page know that I was diagnosed with Chronic
Lymphocytic Leukemia in June 2007.
After six months of relatively stable lab results my numbers started
climbing rapidly. My white blood cell count is now four times the level at
which my oncologist said we would need to consider treatment.
Not yet.
A new day. A new year. A new life.
So yesterday didn't go as I would have liked. Last year did not go as I would have liked.
It's a new year.
Having met some goals and missed some deadlines, I don't need to focus on projects that are no longer urgent. I can work on them without giving them priority, without letting them crowd out other goals that are ultimately more important, but were previously less urgent.
Wellness is job one. I never consciously or deliberately assigned it a lower priority, things just kept...happening.
Rest, meditation, clean food, light exercise, sunshine, good music, funny movies...these are back at the top of the list.
The other projects won't matter much if I don't live to finish them.
Second priority goes to reclaiming my home and creating an environment that will still work for me if my health deteriorates sharply, as my doctor expects.
It's a new year.
Having met some goals and missed some deadlines, I don't need to focus on projects that are no longer urgent. I can work on them without giving them priority, without letting them crowd out other goals that are ultimately more important, but were previously less urgent.
Wellness is job one. I never consciously or deliberately assigned it a lower priority, things just kept...happening.
Rest, meditation, clean food, light exercise, sunshine, good music, funny movies...these are back at the top of the list.
The other projects won't matter much if I don't live to finish them.
Second priority goes to reclaiming my home and creating an environment that will still work for me if my health deteriorates sharply, as my doctor expects.
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