Truly a DOG Day

Conor reporting briefly tonight...

Medically it wasn't a positive or negative day, but it was more dog than hydrant today (more later). There are no results from yesterday's endoscopy which was targeted to determine why Mom's vommiting - either a virus or (hopefully) graft vs. host disease. The positive is there aren't bad results in that area. In another attempt to reduce the vommiting, her meds were changed substantially.

They're doing a bone marrow biopsy so stay tuned for those results. Hopefully now that we're 30+ days out we'll get some good numbers.

The big reason it's a dog day is we got bad news regarding our beloved Hayward. His liver is not functioning properly and they think he may have to be put down tomorrow. Needless to say the past 12+ years with him in the house have been amazing.

I personally have to say I never perceived my mom as a dog person prior to Hayward. Then she got him for Mark and quickly trained him into one of the most well-trained dogs around. For those that don't remember the final straw to getting Hayward, mom fell and cracked her tailbone on some ice one morning while going to get the paper. That was it - she needed a dog to get her paper. And Hayward did that daily for years. He would even seem lost in the morning until he had served his morning purpose!

If this is the end, we'll miss you buddy. Here are a couple of Christmas 07 pics with Hayward being Hayward - licking the dishes and chewing a bone at the top of the stairs (candy cane-shaped in this case).

Tapering Off

I began tapering off the steroids yesterday.
I am breathing better, and easier.
The catheter came out this morning.
The peripheral IV line (in the opposite arm from the PICC line) came out yesterday.

All is well. all is better.
I walked several times yesterday and several today.
I am still vomiting occasionally, but less often.

I am still sleeping a lot but feel less demented than before
I can operate the television, but still cannot get the closed captions turned on (that might take more dementia.)
Walt came by tonight and left a list of questions for the doctor then stayed nobly through the latest round of vomiting, sigh.

Cathi

New Plan...Change of Plans

Today I'm reporting a new Plan. Ahead of the plan. so that it doesn't derail me when get to the plan. If you see my blog monetized, you will know I have been derailed and someone will be in here soon to figure out a solution. In the meantime, hang in there.

The new plan is steroids. The wonderful terrible drug. It comes with 24 hour diuretic and a catheter. Another issue of "fewer guests please." So we'll try to get to get it down to a personal perspective.

Last time I was out of it so I don't really know how it went from a person perspective. The new plan has already been implemented because it doesn't. We'll just have to be watching from a plan from a planetary perspective to see what happens.

I also don't know how current the the blog updates will be. I will work on finding a sub. But I remember that I had trouble reading anything at all on on the computer.

Meanwhile I think you commenters have a live one on your hands with "one-eyed Nedra" on board again.

GRIN> Cathi

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.