Feel like S-H-I-T

I get pain meds every two hours, and I am the biggest wuss I know right now! As long as I sit still for those two hours all is fine. If I try to do something really ambitious like use the toilet, the peace and calm is ended. Stay tuned for updates on this one.

Other notes, because at this point in time, blogging is ambitious.

• Even though we have exposed the "P" word, we have not heard the accompanying "F" word to go with it (fungus,) meaning there is a prayer of uncovering the cause of this rise in in pneumonia.
• The thoracentesis yesterday was successful. None of these things would even be on the table for discussion otherwise.
• The number of bags hanging on the IV pole has been reduced by half. I am now taking only one anti-biotic, one anti-fungal, one anti-viral, a couple of pain meds, MULTIPLE anti-nausea meds and one anti-dementia drug. (seeing if you're as awake as I am. I can't remember what the last medication is. And one immune suppressant drug.
• Counts continue to rise. Platelets were over 50 today!!!! Get me a normal toothbrush. Woo hoo!
• White count is staying in the normal range.

Nedra, your post stuck and stayed. I'm most anxious to hear your interpretation of the verification words. LOL Though PLEASE do not let that keep you from posting! It is not a requirement.

That's all folks. All I can stay awake for.

Much love.

Cathi

the big word

Pneumonia!

Now it's been said. That's what we're dealing with primarily in the right lung. Tomorrow we have a thoracentesis scheduled. Might be viewed by some as awfully late in the day, but it looks like a good idea to me and I'm the patient. I'm not looking forward to the procedure so much, as I am to later in the day when the effects of less fluid will be felt by me, the patient.

I have been listening to ipod tunes from classical to soothing. Samuel Barber Adagio for Strings, Beethoven strings. Music box waltzes. So I really should fill in with a couple more things. Merely an excuse to spend more time in the itunes store.

I am taking more pain meds and working crosswords puzzles. Combined with the itunes that seems as soothing as anything I've done lately.

Keep writing because I am still reading. My own writing is tough. I fall asleep in the middle of a sentence and when I wake up I either can't remember where I'm going or I've gone of with an odd statement and I cant remember whatever that's about so I delete and start back at the beginning.

I reckon I am entering a period of no recall....when I likely will not remember much of this so I am curious to see if those little close to home genes work. Anyway, lest I don't I'm signing off tonight.

Love Cathi

Back in the "Big House"

Between the clinic and the hospital, insiders call the hospital the Big House and that's where I am again as of yesterday.

I went to the clinic twice on Friday, once for my regular appointment and again in the evening after I spiked a fever. When I went back on Saturday, they were waiting for me. Seems like it took most of the day but we had a verdict of hospital about 1 or 2 pm. The deciding factor was the fever spike Friday night.

So, Dr. McGuirk is the doctor making rounds here right now; he is also the guy who called the shots on Friday and Saturday.

He told me today that he wants to make sure the fluid problem in my pulmonary cavity is not caused by an infection. I'm sure that a literal dozen bags of meds have hung from the IV pole in the last 24 hours. I felt much better this morning than yesterday and walked the halls several times. So I'm in favor of his theory so far.

Yesterday when I came in, [sister] Rhonda brought me while Mom collected my gear at the house. I had her drop me off at the front door with my oxygen bottle so that I could wait for her inside and we could walk up together. However when she got inside I had given up on the idea of walking and she got a wheelchair for me. We loaded me and my stuff in it and I put the oxygen bottle between my legs where I put an IV Pole for transport. WRONG! the wheels of the oxygen dolly were steering as well as the wheels of the chair and we made a few loop de loops in the lobby before figuring it all out.

I will be in here "for a while" to keep a close eye on me (oh how I missed having my vitals checked at midnight and 4am every night.) He also suggested that I cut back my guest list. Since my guest list is pretty dang short I'm pretty sure this was triggered by yesterday's clinic visit which got a little confusing. However, no guests til it's time. I'm not interested in adding H1N1 flu to the already confusing symptoms I have.

I am resting fairly comfortably, thanks to generous pain medication. I am breathing easily but must use oxygen to keep the blood saturation point high enough. Once again I am building strength. The lungs remain the focal point; we want them healthy.

The white count remains high! yippee. The platelets haven't needed transfused for 2 weeks or so. I got red blood today but they tell me that is the last count to rise and take care of itself with donor marrow.

Forgive me for possibly long periods between posts here. I'll try to keep you up to date. The truth is I tend to sleep frequently with all the drugs I'm taking and there is a lot of commotion in my room all the time to get all the drugs delivered.

Cathi

TMI

I think I call this "finally friday" today. What a crazy week, taken as a whole or day by day. Yesterday I headed to the clinic bright and early to get a CT Scan before seeing a provider. Scan was uneventful but when we got to the 3rd floor, they practically had admission orders when we walked in the door. They read the scan and the lungs were worse; more fluid under my right lung. My color was awful.

So they drew blood and sent me off to the hospital, Room 4101. I was really grateful that Robbie did laundry Wednesday night. Wednesday's clinic visit was spent mostly in debate about going back into the hospital or going home.

Dr. Aljitawi was making rounds at the hospital and he said "you shouldn't be here. The scan is better." The Pulmonary doctor wouldn't even come in my room. Various respiratory therapists came and went through the day, each one imparting some bit of information that I'm not entirely sure I need to know.

Robbie left to run errands like get me clothes and hospital necessities like real kleenex. Even after Dr. Aljitawi was certain he didn't want me in the hospital, we didn't see any way I was going to get out without spending at least one night. But one should not underestimate Dr. Aljitawi. He had strings to pull that seemed to be unending. The ultimate was a visit from a different pulmonologist who said "you don't need to be here" (along with a ton of other stuff I didn't want to know.)

About 7:30 or 8pm last night we finally got on the road home. Not really any the worse for the wear but I'm sure there are more gray hairs in my bald head.

I slept good. I feel good this morning. Each day, the pain is a little less. Each day I must exercise more which I feel ready to do.

But I am NOT going into the clinic until after noon today. And I am about to call the clinic and make my wishes known.

Cathi

d + 23

Transplant Day plus 23.
I spent all day today at the clinic. I was only a little bit surprised this morning when Wendy called and said "we'd like to see you today because... well you know how we are...." So Robbie and I gave up our leisurely morning in our PJs and headed to the clinic. The intention, which worked out, was for Robbie to work her way down a list of errands while I hung out at Belinder and SM Parkway.

I think I had a better day than Robbie though. I was on home turf, not in a strange car, not figuring out which Costco to locate for filling scrips, finding the Apria home health care office and so forth. I was merely hanging out in a recliner, maybe holding court a little bit.

Had I felt better I would call it holding court. Everyone was glad to see me and likewise I was happy to see them. I didn't feel 100% though and that cut into the pleasure. My lungs are still squishy with fluid and that is a little bit alarming from this perspective. I am on oxygen and I have a little bit of pain, reduced to discomfort by some really good pain meds.

My counts were up. WBC 5.1. ANC 3.4. Platelets 38. Hg 6.7. However they gave me a unit of blood simply because I am having trouble with shortness of breath. So the counts are doing great. Right now what we need is a little bit of graft vs. host disease (gvhd) to solidify the graft.

When the platelets get to 50 then they will "do something" about the clots in my left arm. I'll be grateful for that too. Right now the arm is undependable and painful at odd times. All tolerable though and nothing to worry about vis a vis the blood clot. It just requires some contortions on my part to do things like move the computer to the nightstand, or take a sip from a drink on the nightstand.

Some debate this afternoon about going back to the hospital. I am uneasy when my lungs hurt like this, but my lungs have hurt terribly before during this year. Dr. Ganguly came in and said ok you've done the transplant. This is going to take some time to recover. We think you can recover better at home, but you must promise to call if ANYTHING changes. I solemnly swore on behalf of me and Robbie that we would. I remarked that Robbie had shown up in my bedroom about 1:30 am today when I coughed so I know she's a good watch guard. She corrected me later by saying it was when I groaned rolling over. It is a bit painful to roll over, to shift position at all.

We made it home with instructions to just sit still. Not the time for exercise. Robbie hauled me and my gear upstairs and here is where I will stay. This oxygen thing is kind of a big deal, coping with these machines and yards of tubing and so forth--Robbie handles it like a pro. And I feel better having it. So we've had a quiet couple of hours in the bedroom. Watching TV, putzing on the computer and gearing up our brain cells for a crossword contest.

It's a fairly self contained unit up here with a large bedroom/sitting area and attached bathroom. The main oxygen machine is positioned where I can actually get down the stairs if I need to. I have a bell to ring for help which I know works because it brought Robbie to my bedside this morning with pain pills. I also have two large windows through which I can see the outdoors, the trees, the neighbors' flowers. A nice place to be holed up.

We will go back to the clinic daily (because I know how they are.) Tomorrow's visit starts with a fresh CT Scan of my lungs. The team figures they will be drawing more fluid off in the next week or so. Meanwhile, I just take the diuretic and give thanks for the short hike to the bathroom.

I am very comfortable right now. Grateful for your thoughts and prayers. Turning all my energy to getting better.
Cathi

Goin' Home

Hi everyone. Guest blogger Robbie here. I arrived here from Vermont this morning and now am at the hospital with Cathi and Lori playing the waiting game. We anticipate leaving around 4 this afternoon; all the pieces are falling into place, however slowly. Cathi is reallly looking forward to getting out of here and getting back to her own space, with her own bed and Wii and other toys. Here's today's data: the WBC (white blood count) is at 4.5, which is great. Hemoglobin is 6.2 and platelet count is 33. Cathi still has pain in her lower right chest area but she feels that it's muscular, relating to the clots at the picc line in her left arm and having to haul herself in and out of bed with her right arm all the time. Once she's home it should improve quickly. She says she feels pretty loopy and tired. That's about it for now; we expect the next post will be from the house.

Monday, Still on the Hospital

Conor reporting tonight...

Mom's still in the hospital due to some unexplained shortness of breath that they're trying to identify the cause of. They'll re-evaluate tomorrow and see where things stand. Hopefully we'll have more to share tomorrow regarding a discharge. Keep the faith!

Going Home Monday

Hopefully it will still be as mild outside Monday as it is today. I have had visits today from several people. Mom, cousins Gail and Sara and then P-L-O-P, Mark turns up. He has walked with me a time or two and rearranged my room. And escorted me up and down the hall


My WBC is up to 3.9. All by itself. Normal is 4.

I have taken so much time to get this much written for the blog that I have tossed my more ambitious update ideas out the window.

I have a new pain in my lower front chest cavity. I've had a heating pad on it most of the day. And in between the pad some pain killer that I can't be held responsible for.

We're calling this Engraftment!

White Cell Count - 1.7

I'm writing a little bit earlier in the evening today hoping the message is more cohesive. I've been seriously out of it for a couple of days.

But Eureka! Today they did the thoracentesis. Early today. I slept through a chest x-ray (still trying to figure that one out.) I got more platelets, and I got outta Dodge. They drew 1.7 litres out of my chest cavity through a single poke. Looked like a large tankard of beer: Golden with a frothy head. A marketing option to consider I think.

I believe the only way I can sleep through a chest x-ray is being deaf. A portable chest x-ray machine is a very large, boxy, daunting apparatus. It comes through the bedroom door like ghost busters accompanied by two green figures, one of them waving a monstrous blue screen (a nightmare for a geek like me I promise you.) It barely fits into my room (the smallest on the floor) and has to be positioned so that the camera arm slues exactly across the top of the bathroom sink and counter. Plus last night I was wearing pajamas with little buttons that had to be unbuttoned. (why I much prefer CT scans--as long as it's plastic the scanner doesn't care.)

But that was really good news.

My mouth has healed a lot. Today I "ate" an Ensure shake, and a red Popsicle. One day this week, I think it was even on the weekend the Nurse Practitioner changed orders so all my meds were liquid or IV. That changed life so much for the better. Even taking the pills with the Morphine swish & swallow took 15 or 20 minutes to work up the nerve to swallow. My nurse just brought in the twice daily Acyclovir which is 20 ml. of not very good tasting stuff but it is tons better than a huge honkin pill I was taking before.

I also have been free from oxygen all day today, since the procedure this morning. And I am bald....have I mentioned that? My poor ears have become very tender supporting my hearing aids, my glasses, oxygen tubes and a hat. The glasses are not a 24/7 item but it's enough. I think the respiratory folks will still be visiting for another day or so but my blood O2 is hanging tough.

Going bald happened last week and it was so messy and anti-climactic compared to everything else going on that I may have left it out. Mom was here Wednesday and I showered and pulled out a couple handsful of hair. She got some scissors and trimmed all the curls from the back and sides and it looked cute. But thin. The next day Dad came down and he did not have the headgear that I wanted. So I took a shower and pulled out 3 or more handsful of hair and did nothing. Then Walt showed up on Saturday and asked with a curling lip "do we need to do something here?" I asked what he was talking about and he said "your hair! it's everywhere! Do we need to take charge here?" Short answer is yes and the razor was duly acquired from the desk and Walt shaved my head. Many thanks. On Sunday he showed up with cotton balls and polish remover and removed the dregs of nail polish from my toes.

So I'm feeling tidy, if not gorgeous. I walked today, sans oxygen. Slow and steady as they say. It takes a couple of turns in the hallway to ease the restrictive feeling about my middle. I have many walking companions. On one very bad day, a nurse picked me up every time I left my room and gave me a pep talk up and down the hall. My sisters and my parents are good walking companions. Peggy, who visits often, "drove the pole" one time down the hall. In one trip she managed to bang into at least half of the people in the hall, some of them high maintenance family members, so I took away her driving privileges for now. She is a good companion.

I have a card here from Peggy with photos of 4 dogs and 3 fire hydrants on the cover. Inside it says "some days are dog days and some are hydrant days." So we're hoping for all dog days ahead.

Tuesday

1. Nurse woke me up at 3 am to begin procedures to get ready for the thoracentisis (drawing the fluid off the longs.
2. Was awake pretty much from 3 to 7 and the surgery being rescheduled and unscheduled and more platelets rolled in to the requirements. The nurse was doing something to me all the time and she was a bit messy. I was always rolling over into wet spots or some syringe cap.
3. At 7:30 the Pulmonary Doc "train wreck" pulled in; they seemed so pleased with themselves that I thought they were here to take me to surgery. But no, they explained "no surgery this morning" blaming it all on my counts.
4. My counts were low on platelets and red blood cells. But it must have been low on something else because I checked my phone for text responses from Lori and realized they were all still sitting on my phone!
5. *****************WBC are 1.0 this morning********************
6. **************Brain cells are way way down this afternoon*******
7. Every time I wanted to take a shower I heard a "not now, Cathi"
8. My room wasn't cleaned until about 5pm this evening. Trash cans were very overflowing. Everyone who comes in here has to gown up in a different bone marrow gown every time. Makes for a lot of trash.
9. aljitawi was very complimentary.
10. Most mouth sores have lost the original scab but will scab over again.
11. Plan a chest x-ray early tomorrow morning, after sleeping with oxygen-thin blood)


I'll try to remember more so I do an update.

Something Old, Something New, Something Blue

After a tough weekend with the runs, Monday is off to a dry start. Kind of a dry start. The chemo sickness attacks the mucus membranes in the mouth causing the dreaded mouth sores. Those same sores run through the entire intestinal track, thus leading to the runs. Another theory is possible Graft vs. host disease, or a side effect of the Daptomycin. But Monday saw all that come to and end and two of the three stool tests have come back negative for infection allowing the use of Imodium, but now I no longer need it.

The news today is low blood oxygen levels, which has lead to "moisturized" oxygen tube to the nose. Now I am not only attached to the IV pole, I am attached to the wall via the the O2 source.
Another dose of Lasix today has helped drain off some of the fluid buildup. But there is fluid build up in the lung cavities right now. I have an appointment to have it drained off at 7am tomorrow morning via Thoracentesis. This is a procedure that has been done before with results that are felt immediately. The lungs still sound clear, but the fluid buildup affects both the heart and the lungs so they are working to drain that fluid and free up some space for the two to work.

The mouth sores and scabs are falling off, which is a huge deal to Cathi as it feels so much better. She was able to drink an Ensure protein shake today. This is the one accomplishment today and our step back to normal food consumption.

All this good news was clouded blue by the new fluid buildup and challenges with the lung cavity. They do not think that this is the fungal pneumonia. Her body is working double time with the cell grafting that is going on from the brother's stem cells. The liver is working to flush out platelets and other foreign bodies of being used in the grafting. And the liver counts are normal except one element with a slight rise. The kidneys are running out flat to keep up with the Lasix that keep her flushing fluids out of the body, and they too are only slightly elevated. Blood pressure is high, which is not uncommon.

So all this happening at once, so the old cells mixing with the new cells is making Cathi a little Blue. Each improvement is followed by another function needing attention. But Cathi is keeping her head in it, walking her laps, and giving a few less orders and listening a little more.

I thought that an update from Walt on the transplant process would be good, while Cathi is on Chemo brain delay. After four days of giving myself shots of Neupogen in the belly it was transplant day. The Neupogen makes the bone marrow produce & release mass quantities of WBC's and Marrow stem cells (the prize) into the blood stream. It also makes the bones hurt, alot, as Cathi has pointed out. The pain started on Friday while I tried to sit and work all day, soon I found the more I moved around the less it bothered me, so I was up & down all day.

The transplant day started with a lovely 'good luck' note from Janet #2GOT, who pointed out that the oldest always wins, and breakfast with Sara Beth and Suzanne. We arrived at the hospital with Starbucks and a paper for a good morning sit with Cathi. Then it was off to the throne room. I called it the throne room as it was a small room with lots of equipment all centered around one chair. Kai was there to harvest the cells (he did it last time and was excellent). Kai hooked me up to a centrifuge machine about the size of an office copier. All the blood ran through a contained set of aquarium lines that were installed. A large needle was put in the right arm drawing blood and a smaller needle in the left arm returning the leftover blood parts (RBC's & Platelets). The centrifuge spun the blood into three parts and lines: WBC's & stem cells (they are both about the same weight), RBC's, and Platelets. The WBC's & stem cells were collected in an IV bag above the machine, which someone would come by, make a cheeky comment, then turn and squish as if to mix, every now & then. The remaining blood products were heated on a coil and returned back to me. Dr. Ganguly came by early on talking about getting 5 Million stem cells. They tested my blood for parts per Micro Liter. They said above 15 was OK, and preferred anything above 40. Score was 70 PPML for Walt.

The harvesting process took 5 hrs, and then extra for setup and teardown. All while Walt and Sara watched Star Wars (Sara Beth leads a sheltered life as she has never seen all of Star Wars, who could imagine such a thing?). All this time the R arm has to be stretched out with no movement. No BB prayers or pecking on the computer, R arm extended out and straight all the time.

Once completed the cells were tested for a final count. A total of 436ML were collected with a count of 12.5M stem cells. score another for Walt, Now he does not have to get another shot or donate for a second day. Cathi received all the cells, right out of the IV bag that collected them earlier that day. They just carried them down the hall in a playmate cooler and hooked them up and dropped them in. Not much drama, but they did make an exception to the two guest rule on Cathi's unit and let Mom & Dad and Walt & Suzanne stay in the room for lots of pictures.

Now the waiting begins. Waiting for Cathi to get over the Chemo sickness. Waiting for her counts to get up and immune system working agian. Waiting for the cells to multiply and then take over the hostile marrow cells causing the Leukemia. The cells should make Cathi sick, with the cells fighting each other (Graft vs. host disease), but in the end it will be all Walt's cells in Cathi's Marrow. Final Score Cathi.

Cathi is fighting and doing well to recover from the Chemo, but this chemo was twice as harsh as the chemo on the first transplant. She always enjoys the support of her friends & family & can have visitors as they are scheduled. The address on the blog was updated so cards will go direct to her hospital room. (It needs some decoration and pick me ups) Waiting for the counts to go up before going home, as Dr Abhyankar noted this morning may take a while. Time that is shortened with good company.

A special thanks to Sara for taking the day to help scratch my nose and tie my shoes while donating. Great to have family like that. Walt

Happy Anniversary (2 posts today)

Thank goodness it's Friday?

I was going to post yesterday after the doctor visit but I kept thinking there would be more changes to the regimen so I kept putting it off. But here is what I know today. Which still has some questions in it.

We are doing nothing about the PICC line right now. My platelets are too low to give me a blood thinner. Dr. Abhyankar thinks the clots have been there a long time (and I agree with him based on similar kinds of pain in the past) and he doesn't think they will start moving after all this time. We don't want to move the PICC line because my counts are so low, there is a HUGE risk of infection. So the bit of discomfort surrounding the line is going to be a trade off.

Lungs are holding their own. Here is a link to a picture of an inspirometer. http://www.eecs.wsu.edu/~schneidj/accident/Pages/inspirometer.html
I suck air in through the blue tube which is tucked up there on the right. That raises the white disk in the fat central tube, which I want to get as high as possible. And to be perfectly compliant with the requirements of the thing the yellow thimble in the left tube should only go as high as the top of the line for the "best" section.

I am walking extra laps to help with the lungs too. That is the thing that makes me feel most comfortable. Yesterday one of the nurses inquired about my Wii Fit. I told her I didn't have it with me this trip as I was only staying "a few days." However, I have to agree with the premise for being in the hospital. Especially when I woke up in the night with a fever and a chipmunk cheek.

Yesterday they changed my pain meds "because she wasn't getting adequate pain relief." This resulted in a low back ache the rest of the day. What they gave me was a Fentenuyl pump along with a base delivery of Fentenuyl all the day. Apparently I'm hard to please.......

However a push of Fentenuyl seems to send me to sleep for an hour or so, so that's relief of a sort.

I have a "sucker tube" like those the dentist uses to get the saliva and mucous out of my mouth so I don't have to cough. I'm not very high on eating still. I weigh plenty. I take my pills with a morphine swish n swallow. This is a combination of morphine and Mylanta that I swish around and hold in my mouth for a few seconds if I can, then swallow. There is a milder version that the staff associated with the BMT unit calls "Magic Mouthwash" which is equal parts of Lidocain/Benedryl/Mylanta, but it burns a bit going through the throat.

I have been told my WBC count was .2 today which would be up .1. Not a huge difference but going in the right direction. The nurse practitioner today said my ANC has to get over 500 to show white cell recovery. It's a different answer than "couple more days" but essentially means the same thing. She's also going to have the pain management team call on my again.

Finally, the last bit of my treatment protocol is a dose of Methotrexate today. This may or may not happen (because it affects the condition of my mouth.) If it doesn't happen, it just doesn't happen. It will change the protocol.

Barry, I'm so happy to see your comment from yesterday; I wondered where you had got to. I love seeing your comments. Sara, tell Tom and Paul to bring their pictures and stories from Boundary Waters. I'm anxious to see those smiling faces. Thanks everyone for commenting and be sure to watch the blog tomorrow when we'll be celebrating my 1 year anniversary date of treatment for Leukemia. Damn! what a ride!

Cathi

This is really boring

From my perspective, it's been an eventful day (and prior night) but this might bore y'all to death. I slept great last night. Nurse Susan kept me comfortable with pain killers and mouth numbers all night. She is my nurse again tonight so I do expect to sleep good tonight.

This morning my list of questions for the doctor included complaints about my left arm. It acts like a rotator cuff problem but is painful from time to time. Rotator cuff because I can't raise my arm. If I lift it up with my other arm I can use it over my head (like to wash my hair that has begun to fall out) but that's not always possible.

Today's nurse, Marla, was sitting in just the right angle this morning to see both arms and noticed some swelling around my elbow in my left arm. This sore arm problem has come up more than once on the agenda since I've been in hospital. And after an ultra sound this afternoon we know there are not one but two blood clots in the vein with my PICC line. I don't know if I mentioned here how much trouble the nurse had getting this line in, but it took over an hour and was very uncomfortable. That procedure and the ultrasound today are the most painful procedures I've had during the last year, mostly because the discomfort/pain lasted so long.

Don't have a solution for this yet. Marla says they will probably put a line in my chest. Ugh. On the other hand, it will make getting dressed easier. I'll be able to wear things with long sleeves. Gotta look on the bright side.

My blood oxygen level has been dicey over the last 24 hours so I asked for blood even though my hemoglobin count was 6.1 (the threshold is 6.0) I got blood but I'm still having trouble drawing a deep breath. I thought this was because my throat and neck are so swollen, and perhaps it is, but it also raises the pneumonia flag. So walk more and do the breathing toy more...which reminds me I never posted a picture of that thing for you. This worries me the most. This relies most on my body and least on the skill of my treaters.

I've had several visits from food people today. The nutritionist because I'm down to only what goes through a straw. Two from food service people because some of the folks who work down there are orangutans. Most of the ones I interact with are and I no longer bother trying to get the right thing; I just ask the nurses here on the floor for what I need.

Let's see, the pain person came in. Mom came down early this morning and brought me a protein shake for breakfast because the shakes here in the hospital all have some dairy in them (which surprised the nutritionist.) Suzanne stopped by just as I was falling asleep after the ultrasound.

My final conclusion this afternoon was to get up and walk. Sitting in my room feeling sorry for myself is getting me nowhere. Prayers and/or positive thoughts for the lung expansion. I have to be able to draw deep breaths to keep the bottoms of my lungs expanded so no pneumonia can take up residence.

Dr. Abhyankar coyly says "couple more days" when I ask anything like "how long til the mouth sores heal?" or "when can I go home?" or "when will we know the answer to ...?"

So couple more days folks.
Cathi

Happy Birthday Walt!

Today Walt turned 42. On the 4th of July Mark turned 25. And on the 29th June I started a new life. So we have three birthdays to celebrate in this one week from now on. Another moment of serendipity tonight, on the south side of the hospital, a curtain of rainbows. I am fortunate to be on the 4th floor, high enough to see the colorful sky over the trees.


I have some photos to post this evening from transplant day. The good news/bad news is that I am in pain. Everything hurts except my head. I have a lot of different drugs and I hope that they continue to bring at least little moments of relief. I have mouth sores. I am puffed up like a toad with water retention. And I have high blood pressure which has everyone here stunned. My normal BP is about 90 over 60. However, I did not vomit yesterday or today, even when I ate a meal.


I complained to Dr. A this morning that the hospital wakes me up when I finally do get to sleep at night and his remark was "we need to get you home but your counts must come up a little bit." I reminded him that I was keeping down my meals but he said that wasn't enough. Sigh. The nurses have been very helpful but they all say I have a few more days of this. So enough of this--check out the photo album.







Can it be that Walt is sleeping through this exciting procedure?




Cousin Sara and sis-in-law Suzanne standing watch in the Apheresis Lab.

A happy group just about ready for those cells. That's Mom and Dad behind me.
Me and my special birthday stem cells in my special pajamas. "Life is Good"

July 4th on the right side of the hospital

I was in the hospital July 4th, 25 years ago welcoming my son Mark. I missed the parties, obviously, and missed the fireworks because I was on the wrong side of the hospital. But here I am on the south side, well positioned for fireworks in Westport and the Plaza. Last night there were quite a few so I hope tonight is better.

Conor arrived mid-day today and will be here through Monday. He is out eating right now, choosing from the wonderful selections in Kansas City. Sonic DriveIn. Haywards BarBQ. Oklahoma Joe' BarBQ. Choices. Conor is a planner and I've no doubt that by the time he leaves on Monday he will have had his fill.

I, on the other hand, am not interested in BarBQ or coffee, nor much of anything else. It keeps coming back up. There is a discrepancy between the hospital's delivery of food and the nurses' schedule of anti-nausea drugs. I don't hit the magic moment very often. Plus the food here has deteriorated over the year I've been eating it. I'm relying on saltine crackers and apple sauce right now. The verdict from Dr. Abhyankar is that I can go home when I can keep down half of what I eat. Which begs the question of who determines "half?" I will just report today was better than yesterday.

I'm very uncomfortable with a variety of aches and pains. I think I showed up with some repetitive motion strain in my upper arms which is one reason I've not been on the computer. Usually sleeping comfortably a few nights while avoiding the computer will fix this but sleeping comfortably doesn't seem to be on the agenda here. My back hurts, my head aches, my knees ache, etcetera, etcetera, etcetera. (recall Yul Brynner in the King and I)

So I'm taking some heavy drugs both for pain and for nausea and snatching sleep gratefully.

I think most of the rest of the family has made it to the lake house. Walt and family, M&D, cousin Jason and Lori and kids for starters.

The boy scouts have begun delivering meals twice a week for which we are ever so grateful. And large group of scouts have set off for Boundary Waters for a week of paddling and camping. I'm SO jealous. I love it up there.

I am reading your comments and emails on my blackberry, another electronic convenience. Dr. Abhyankar is always smiling when he sees me so this is a good feeling. Today a couple of nurses from the Clinic stopped by which was a welcome visit. I have slept through several visits, and even a phone call or two. But I'm still getting out and hiking the hall several times each day (and several laps each trip.)

Meanwhile, it's a waiting game. You guys tell me what you're waiting on since my own list is so indefinite.

Watch that sky tonight.
Cathi

Not-so-much-fun

Today has been not-so-much-fun; Janice posting cuz Cathi is just too tired to manage it even though she did remember it needed to be done.
Nothing has stayed down today. The likelihood of nausea and vomitting is the reason for this hospitalization so all is as expected, even though it isn't much fun.
Dad brought up some hand-turned wine corks and Cathi has been gifting (and thrilling) the staff with them. That has been fun, at least!
Dr. Abyhankar says that when the nausea and vomitting is under control, then Cathi will get to go home.

short and prayerful

This will be a short post as I'm having trouble staying awakefor long no matter what I'm doing.

I have a lot of pain. My heard hurt ferociously tuesday, but today it is my shoulers, back and one hip. I have a heating pad, and some drugs that dull the pain. Tomorrow we'll see what the day brings.

I have dropped off twice during this post.
thanks for the prayers.