This hasn't been a good year.

Well, I'm home. Again.

I was in Banner Good Sam from Apr. 15 to the 28th. The preliminary diagnosis was pneumonia, but it was really the "weird respiratory thing" I've been complaining about since February. I should never have left the hospital without resolving it the last trip.

But, it wasn't pneumonia, either. It was pulmonary edema, complicated by some other things, plus another round of renal failure.

More later...

Healing comes in many forms

The standard treatment for the kind of leukemia I have is six sessions of chemo, three weeks apart. I have had two sessions, four weeks apart, and nothing in the two months since then.

And my numbers are great. My oncologist told me yesterday that there is no chemo in my future for a long time.

Some people seem to believe that if we pray for healing and are not immediately restored to full health, we are doing something wrong.

I know better.

Six weeks!!!

I knew I'd been remiss, but I didn't realize it had been six weeks, roughly, since I last posted!


I spent five weeks back in Good Sam with renal failure, Feb. 25 through April 2. I had almost no Internet access while I was there.


I may return tomorrow; my oncologist thinks I have pneumonia.

More new experiences...

Ok, maybe I wasn't whining, since three hours later I was on my way to the ER. I'd never been to Tempe St. Luke's before.

While there they drew blood. The doctor wanted to either admit me and start a transfusion or transport me to Good Sam; I said I'd let my oncologist make the call. I faxed her the lab results and that afternoon I was back in Phoenix having more blood drawn for a type and cross-match for the transfusion I had yesterday.

And today the problem that sent me to the ER in the first place is back.

I am greatly blessed. I have friends that I can call at 3:45am. I have friends who have helped me at home, and with rides, prayers and good wishes. I'm thinking more clearly since the transfusion.

There's a downside to that. Now that my brain is working I see things I want to get done and can't, due to the other issues.

Heavenly Father knows what I need and He knows when I need it. The day before I went to the ER my friend had said to me, "Now, you call me if you need anything, even if it's at night." And when I did call, she had been awake for about a minute, even though she didn't need to get up that early.

Still whining...

Following the first chemo, in the hospital, I had about five days of feeling pretty good (other than needing a transfusion), then things started blowing up.

Since the second chemo I've been fighting this respiratory thing, and now new things are blowing up.

I'm due for a CBC today, Thursday. I expect to learn the results this afternoon or tomorrow.

I'm not sure how much sleep I'm going to get.

Whine

No one said it would be easy. (whine)

The fever broke about 9:30 Saturday night.

I've spent two days with a respiratory infection, not really sleeping, not really awake, trying to force clear liquids.

A friend came over, did damage control in the kitchen, made me Jello and will bring soup tomorrow.

I've decided that the anemia is not as bad as I thought it was on Friday. I may still get blood drawn on Monday instead of waiting for Thursday.

Marie: It wouldn't have been a lot different if you were here. Other than emptying the dishwasher, which is what kept me from putting the new dishes in the dishwasher, there's not much you could have done other than watch me sleep and worry about me.

As soon as I finish this batch of liquids it's back to bed.

Roller coaster...

I didn't fully appreciate the extent of the ups and downs I would experience after chemo.

I'm tired. I'm cold. I can't think clearly. I hurt in places I didn't in the hospital.

I'm back to having trouble putting a balanced meal on the table and cleaning up.

Lunch is over; back to bed.

I should have paid more attention ... (whine)

when the nurse who gave me the shot yesterday asked, "You do know to take Tylenol with this, don't you."

It hurts to chew. Anything. I didn't think the skull bones produced a lot of blood cells.

When I was in the hospital the first time my blood was checked every morning and, depending on the results, I was given a short-acting shot to boost my neutrophils. That doesn't work when I'm at home.

The shot yesterday was a bigger, long-lasting version of the same drug, bound to a carrier chemical.

And I can tell that my red cells are gone. I have the pounding in my ears that I had the first week of January; I'm cold and mentally foggy.

I'm going back to bed.

I'm home!

I had another very positive experience. The inpatient chemo went very well. I received one drug that they chose not to give me while I hospitalized, because I was so sick. They administered that one very slowly, in case I reacted badly, but it was fine.

I was discharged to the outpatient unit where I got the shot I needed. I found it a bit unsettling that there was a long list of possible side effects that would require calling 911. It's been about 12 hours, though, and I seem to be fine.

I was home by noon.

I'm very tired. I had to remind myself that I may become more tired this week, as all of my blood counts plummet.

Purell is my friend. I'm neutropenic now -- not enough neutrophils -- and am vulnerable to infection. I picked up my planner and thought, I had that with me outside ... I touched it when I wasn't worried about infection ... it's on the floor.

The apartment is full of things that I last touched when I wasn't worrying about bacteria.

The Purell is within arm's reach.

The next adventure...

In twelve hours I start the next phase of this adventure, semi-outpatient chemo.

If my blood counts are high enough I'll check into the hospital tomorrow morning. I would expect them to start the chemo pretty soon after that; it will take about eight hours. I'll stay overnight, then be discharged around noon.

I just learned today that I need a follow up treatment the following day. We're hoping to be able to take care of that on the same trip. It's in an outpatient clinic at the same hospital. Maybe.

There are a lot of unanswered questions, this first time through.

I'll be offline for the next two days.

Status

My first week home from the hospital was spent establishing a routine for my meals and medication. That took all of my time and energy.

Last week I turned my attention to preparing for my next session of chemo. I had a lot of help at home, which I greatly appreciate. I got the food under better control, especially after Meals on Wheels delivered ten frozen meals on Friday. (I still prefer my own cooking.) I began to accomplish things not related to food and drugs, but much less than I hoped. I also made progress regaining my strength, although stamina is still an issue.

And I lost most of my hair.

I am scheduled to start my next cycle of chemo on Wednesday, February 11. I'll stay at Banner Good Sam overnight, barring complications. When I return home I will be under the most strict limitations, as the drugs destroy my immune system and leave me vulnerable to infection. I don't know how long that will last.

Since I haven't been through a cycle of outpatient chemo, I have a lot of unanswered questions.

"Heavenly Father knows what I need, and He knows when I need it."

That belief got me through my hospitalization. It got me through anxiety about managing at home. It got me through worries about how to pay for this cycle of chemo. I'll be okay.

Life is good.

Hair today, ...

I participate in a scrapbooking challenge, 52 Blessings. Today's blessing is lack of vanity.

When dark clouds of trouble hang o'er us....

I woke this Sabbath morning to heavy gray clouds and rain.

As I ate my breakfast 45 minutes later I noticed that the rain had stopped. The sun was beginning to break through the clouds. The crowns of the palm trees across the street glistened against the backdrop of the heavy clouds.

As I finished my meal I saw those dark clouds being blown quickly out of sight, replaced first by bright white clouds, then patches of clear blue sky.

The earth is both washed and renewed. Our resources are replenished.

That is my expectation for this storm in my life. It was necessary, and beneficial, but the darkness is being quickly pushed away, leaving a clean slate and renewed strength and resources.

The Economics of Greek Food

I'm hungry. It's 3:30 pm -- more than late enough for lunch. There is food ready in the kitchen.

I'm temporarily too tired to go get it.

When I took Economics in college I learned that "Economics is the study of how people allocate scarce resources among unlimited desires."

My most scarce resource is stamina. Until I typed that sentence I thought it was energy, but stamina is more accurate. It's also sneaky. I can judge my energy level directly and allocate it accordingly. I don't know how much stamina I have until it's gone, and I'm back in my recliner, limp.

As I thought about what to fix for lunch I considered the fact that these are my last few days off a neutropenic diet. I have some corn tortillas, and wondered what I could have with them. I decided I wanted hummus. And olives. And as long as I was planning a Greek lunch, avgolemono soup. There are no greens in the apartment, or I would have added a Greek salad.

The avgolemono would have to be avgo-less: eggs are a treat food. I could thicken it with cornstarch. It cooks for a long time, so I could start it, then rest.

The hummus takes a little more work, but it can be done in stages.

I would be able to enjoy the tortillas, and the olives, and the fresh lemons that I can't have next week.

I did one thing at a time. I didn't commit to something new until the previous step was cleaned up and put away. I thawed some broth I made in December and started the rice cooking. I grated four mini carrots and added them to the soup. I washed and juiced a lemon. I mixed cornstarch in a prep bowl with some juice. I sat down to rest.

I looked at the soup; it was too thick. I used too much rice. I added water and let it cook. I got out the ingredients for the hummus. I sat down to rest.

I put the ingredients in the food processor: garbanzos, almond butter, garlic, lemon juice. No parsley in the house. I put the utensils in the dishwasher. I put the jars away.

I processed the beans. I let the processor run. And run...I like my hummus very smooth.

And all this time, when I wasn't sitting and resting, I was on my feet. I didn't walk very far, I didn't carry very much, I didn't work very hard....

I tasted the hummus. Yuck! Too much almond butter, barely any lemon. Get out another lemon. (Hmm...now I can add more lemon to the (extended) soup.) Juice the second lemon. Add to the hummus, which is now too thin.

Put the hummus in a storage container, so that none is wasted. Put the container in the refrigerator. Rinse the processor and its parts.

And collapse into the recliner. I am beyond limp. I'm beyond wet spaghetti. I feel fine. I don't hurt anywhere. I'm mentally alert.

And my legs are waving a white flag. My arms are pretty limp, too...I am just able to drape them on the laptop and type.

And I forgot to eat the olives!

Note: the lemon hummus recipe is available on the YouTube video clip at the bottom of the right-hand column.

Meals on Wheels -- Wow!

I found out Wednesday that my insurance company offers "10 frozen Meals on Wheels" after each hospitalization. I decided to try them to see whether there was any way I could work them around my allergies and other medical restrictions. They were delivered today.

"Ten frozen meals" does not do them justice. At all.

Each meal includes a frozen entree with veggies, juice, bread or roll and snack. The juice is all 100%, not corn syrup. The bread and rolls are dairy-free. There was an insert with serving suggestions and full ingredient / nutrition info. That will also help me figure out what some of the little cups are.

There were instant coffee and margarine servings, that would be appreciated by others.

Will all the meals work for me? No. The cheese omelet entree is completely off limits, and I'll have to discard the "sour cream and chive" potatoes and "loaded potato."

But most of the food will work. It's easy to prepare, easy to clean up, individual servings, varied...and FREE. It's been prepared in a commercial kitchen, and the produce is all cooked, so I can eat it when I'm on a neutropenic diet.

This is huge, just huge. Each time I stay in the hospital overnight I can request a box of ten meals. I cannot express my gratitude and relief.

Update: I ate one of the meals last night, to try them. There won't be a black market for these; I'd rank them a little below a Banquet frozen dinner. They contain all sorts of fractionated food components that I usually avoid like the plague, e.g., soy protein isolate. Many of them contain sodium caseinate, which is a dairy product, but in very small quantities.

That does not change the fact that I am grateful for them and am relieved to know they are available after future rounds of chemo. They are easy to prepare, easy to clean up, single servings and free.

Next round...

I am scheduled to start my next round of chemo on Wednesday, Feb. 11, 2009.

If all goes according to plan, I will have an appointment at my doctor's office that morning, to ensure my numbers are high enough to start chemo. They will send me across the street to the hospital. I would expect them to start the chemo pretty soon after I'm in my room. I'll spend the night and come home the next day. I don't have any details on how long I would be there the next day.

Woo Hoo! I can print!

I've whined about my infrastructure issues for months. The lack of a working printer has been especially difficult. I finally figured out last month that my beloved laser printer was just not going to work with my new-to-me Win XP laptop. I put it back near the old computer, but needed to reinstall it.

This morning I woke up 30 minutes before I planned to get up, and decided to try.

And it worked!

This is a huge relief. My daily tracking form is the key to getting my medication on time and recording my status for my doctors.

Hair loss...

When I washed my hair Sunday I was surprised by a cascade of strands. It came out easily, but only if I ran my hands or a comb through my hair. The process has continued. If I run my hands through my hair I come away with handsful. Totally painless -- it just ... comes out.

Good thing I'm not vain about my hair!

I now leave a trail unless I wear a bandana. Ok. It's just a little trail. And I wake up with hair in my face and all over my pillow.

When I have some spare energy I want to sit in the bathroom and brush it all thoroughly, to get the loose stuff out.

Brief update

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.

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.

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

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!

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.

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

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.

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

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!

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

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

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

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

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.

Inpatient chemo packing list

I asked my friend who just beat leukemia what I might want at the hospital. Here's her reply:

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

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.

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.

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.

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!

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.