Driving Privileges!

Yesterday Dr. Aljitawi told me "I don't have a problem with you driving." so today I drove to the clinic. Accompanied by Mom...not alone yet. But perhaps in the near future. Of course I can't really go anywhere except the clinic.

I am feeling good, and according to everyone around me, looking good. I've gained 10# now which I think is plenty. The bone marrow biopsy has nothing terrible in it, even though I don't have the complete results yet.

So the new plan is to start "consolidation" chemo-therapy on Monday. This will be a less toxic chemo and is intended to keep the Leukemia in remission. I get a shot every day for a week (during which I am warned about upchucking) then 2 or 3 weeks off then a week of shots again. We are hoping to buy time with this plan for my lung to finish healing. The pneumonia this time only affected my left lung; the right one still looks clear.

The liver counts continue to improve. Since the caspo fungan was stopped. This is also why I feel better. Which I stress each time I see a provider. "I feel really good without the caspo!" Yesterday Dr. Aljitawi said perhaps I would not have to take it again if the lung gets better without it. Music to my ears.

My white cell count and absolute neutrophil count have been up permitting me a little more freedom. I've been eating out at restaurants and whooping it up. I had a jolly night with some girlfriends this week that was a second wind. The dinner was interrupted once for me to be disconnected from the potassium pump I had slung over my shoulder. Janet and I went out to her car which was parked square in front of the restaurant door, got in the back seat, and went to work. I got my arm out of my sweater and she went to unscrew the PICC line connection. But she had some trouble so turned round in the seat with her back to windshield and front to me and leaned over to get more traction on the connection. Who KNOWS what passersby thought? and who cares? We got the business done and went back in to enjoy a hot drink after the meal.

The counts will drop when I start the chemo next week so I'll be back to the neutropenic diet and more restrictions. I have been fortunate to enjoy the meals being provided by my Troop 91 friends and my mother appreciates them even more.

No time line has been set up yet. The BMT doctors would like to get me healthy enough to undergo a full bone marrow transplant. So that's the goal. Slowly. I'm not even writing surely because who knows what might happen next. I'm thinking I have caught a break and will heal nicely.

Cathi

One day stay

First things first. My friend, Janet, is here from England for the week and has been loyally ferrying me to the clinic daily and hanging about for the long hours I am there. Though she has found a good massage therapist at Woodside and has snuck over there a time or two. We are having a good time catching up and just spending time together. She has whomped me at all the games we've played and claims it is because she plays Mah Jongg. So something else for me to learn.

We are staying at Mom's house because the latest work on my house (pulling up the basement carpet) revealed a lot of mold and mildew in the basement, result of an apparent leak. So theories and fixes are being tossed about for that problem. Meanwhile the house is spotless and ready...sigh.

Walt is coming to town today. He has finally bought a house in Overland Park and now will be spending more time in KC. The family won't move until April when ski season in New Hampshire is over.

Last week my niece, Margaret, was here and worked like the dickens on my house, besides keeping me company. She bought me a lot of green stuff to wear on St Patrick's Day, which kept the hospital staff amused. They might have laughed even more if they had seen the knickers covered with clover!

I am in the hospital this morning, thankfully just overnight. Dr. Aljitawi sent me here yesterday from the clinic for what looked like a pneumothorax (pocket of air under a lung.) I've been on 100% oxygen since I arrived but I slept good. Dr. Ganguly just came in and reported that there is no pneumothorax and I can go home after the treatment I need today. I still have a little bit of pain which gave rise to all this, but presumably it will go away soon.

The CT Scan also showed slight improvement in the pneumonia. Pneumonia is just so slow to heal. I should be specific, FUNGAL Pneumonia is slow to heal.

I have been feeling good and that helps my spirits tremendously. They stopped one of the anti-fungal drugs because my liver is inflamed and life without it is better. No nausea, less fatigue. I've eaten enough to gain a couple of pounds!

I appreciate the comments on my blog. I reread them constantly. They are important to me. I guess they remind me of my life and the people who love me, all the people praying and cheering for me. So keep adding comments! and silly jokes too.

Cathi

Recovering at home

Life out of the hospital is nice in spite of the long hours at the clinic. Last night I slept straight through til 6 this morning without waking up....or being woke up. The bed here is better and nobody cares what my blood pressure is at midnight.

I am still at Mom & Dad's house because turns out there is more to do at my house before I can live there. The bathroom remodel is finished but the vents needs to be cleaned again. Then the very old carpet in the basement needs to come out, and the vents cleaned after that. And of course the house has to be cleaned again after all this other commotion. But we have a plan so it will get finished.

Medically the plan is to ride out the next 30 days using the time to get ready for a transplant. I'll visit the clinic daily for the anti-fungal drugs. Sometime in the next week or so I will start a mild chemo-therapy to prevent the recurrence of leukemia, and then be ready for a transplant.

I feel pretty good. Much better than when I went in the hospital last week. I don't have a lot of energy but I expect that will come over the next few days. I'd like to wake up and think "today I want to get this and this done." Right now I just wake up and think "today I have to eat 1800 calories and 90 g. of protein."

Eating is easier when I'm not upchucking. Plenty of meat for protein, and at least one protein shake to get close to the 90. My first goal is to stop losing, then start gaining.

Feeling better has improved my confidence too. I believe I can recover from all these things...pneumonia, leukemia, or whatever other infection gets thrown my way. I can't do it alone; I need my friends and family and my faith. But eventually I'll be on the outside again, living a new life.

Cathi

Day after St Pat's

I am scheduled to leave the hospital today. Based on the results of the lung CT scan yesterday. The scan showed the pneumonia reduced by about half in my lung but still not gone (I'm not sure "gone" really happens.) The doctors are changing all the antibiotics to oral pills so I am not so tied to the IV pole. However, the anti-fungal medicine is still IV so I'll be going to the clinic every day to get those. The infectious disease doctor wants the drugs delivered daily for a month then repeat the CT scan.

It would be nice to actually have a month to recover. However, as my body proceeds through these ups and downs the original diseased bone marrow becomes more strange and perhaps stronger and leaves less time to recover and make decisions. The doctors expected to have the full results of the bone marrow biopsy sometime yesterday afternoon. I have not heard and probably will not til the end of this week or first of next week.

I feel much much better. I haven't vomited for several days nor run a fever. I can't seem to eat enough calories to satisfy the nutritionist but it feels like all I do is eat. Food isn't particularly appealing either, especially hospital food. I'm looking forward to getting home to some regular food. I am not neutropenic so I can eat more things, like salad, which will be nice. But I will still be drinking protein shakes to get the calorie and protein counts up. The goal is 1800 calories and 90 grams of protein.

Mentally I'm still not at the top of my game. I'm scared and I wish I didn't have to deal with this. I know the doctors are going to lay out some choices in the next week or so and I'm going to have to choose. The options and risks change each time I get sick and have a setback.

I'm trying to keep the horizon short... living in today. I will be redecorating my room with my "real life" pictures including new pics of the grandbaby. And I will be leaning on my friends and family for support. Looking for people who believe I can get well and convince me of it.

Cathi

It's a Mad, Mad, Mad, Mad World

Back at the hospital Cathi is in a new room. Room 4101, albeit a tiny room it is a relief after the long days at the clinic that were starting very early and ending late. It's also a wee bit less frustrating as most folks at the clinic are getting well. Noticeably better.

No results from the marrow biopsy performed on Thursday. (Cathi) 'Personally I think this means they didn't find what they here hoping for or expecting.' So more consults with more docs. Maybe we will know on tuesday.

They did performa a bronchoscopy, however, which revealed a staph infection in the upper left lobe. Now yet another change of antibiotics. Which hopefully will be followed by dramatic upturns in Cathi's well being.

Then they performed a thoracentesis (drain placed in the chest cavity) to draw fluid out of Cathi's pulmonary cavity which was collapsing the lung slightly. The pain was immediately better after the procedure, and appears to be improving still.

From Cathi
My head is improving. Distracting movies and comforting friends and family. I need to be reminded who I am and what I'm capable of doing. E.g. Setting a goal and reaching for it. That I have banked years of good wishes for everyone and I need to withdraw for myself now.

Mostly I am tired. I don't have the same energy I had last summer. And I am mad. Mad about spending 9 months in a bedroom. Mad about having the pneumonia complication. Mad about the failed transplant and the gall bladder. I'm ready to walk out in the world in street clothes and see my friends and family.

I do have some WBCs though: 1.5. And some neutrophils backing them up. So more things to try to hit this ever moving target.
C.Maynard. fumbling from the Blackberry

A Fever! I know it's off to the hospital I go.....

That used to be a catchy little tune back when Conor had enough hair to actually style it. Young MC is now old and relegated to bad jokes for VH1 and Cathi has now adopted Conor's youthful short spiked hair style. But that was the tune on Monday night. Cathi and Lori left 7:30am Monday morning for a day at the out patient spa for KU med cancer patients. After lots of tests and two units of plasma Cathi came home at about 6:30pm not feeling rejuvenated so she just sat down to warm up. That lasted for as long as any normal person can take the smell of fried Salmon patties. So it was back upstairs to the room.

After a bit she had a fever of 100.9. So a couple of Tylenol some rest and the fever is gone?? Right? Wrong!
'I know it's off the hospital I go...' So Walt went to take Cathi to the hospital for a check up, & Lori went to console Walt who had an offer accepted on a house Monday that he just realized he did not like. The entourage arrived at destination before the paparazzi could amass to greet them, so they went to ward 41 with closed doors, then ward 41 with open doors, then finally to ward 42 with Ola the nurse. Gotta stay on the down low with Ola the nurse.

The hospital took cultures, administered an IV of antibiotic, which took about an hour to get it all figured out and actually started. Lori went home early and Cathi & Walt grabbed some shut eye and were finished by 12:30am. The drive home was uneventful and the two went to bed with Cathi's cough causing a stir every couple of hours.

Tuesday 7:30am Cathi and her Mom were off the clinic again for a blood work & a cat scan of the lungs. Janice came up to spend a couple days of hooky at Cathi's side, and spent the day at the spa together with her as they marched around for the cscan & then the results. "What the pneumonia is worse in the Cat Scan?
I know it's off the hospital I go..."

So that is about the best of the past two days. Janice took Cathi back to the hospital BMT ward in room 4101 to be treated by the yellow coats. She received two units of plasma on Monday, had a cough, and what goes down, must come back up. All of this to end up back in 'The Ward'. So the song ends in a little diddy and happiness. So where is the happy ending. Robin.

Cathi is like a regular celebrity each time she goes into the 4th floor. So many of the nurses stop to say hi "Great to see you, but sorry to see you here" They chat as if they were friends from another engagement and then it's off to the next stop and next a new nurse around the corner. Ah but Robin, Robin is an event each time that leaves a smile and a stronger Cathi. So it was great that Robin was there to help her and spend some time to lift her up.

Robin was working the hospital when Cathi arrived and really had a nice chat with her and picked her back up. Robin always has that charm that lifts Cathi up. Cathi's close of the day was a text that read "Am very tired but spirits better. Pep talk by Robin helpful."

Not so up to date, Weekend Update

Another day at the clinic. Another dollar.
Each day Cathi has plugged along to the clinic visits. Friday & Sunday her friend Peggy took her to the clinic. Saturday & Monday it was her mother who attended with her. Most of the time she is coming home with the IV bag giving medications to treat the fungal pneumonia. One day it clicked off at 3:15am, and another fortunately it was just before bed.

Her current residence is in the upstairs bedroom at her Mom & Dad's house. She is very reliant and grateful for care from her parents. She does well to make it up and down the stairs even after all that time at the hospital. Her food and energy intake has not been what it has been in the past. Much of the time the food comes back as fast as it when down or even faster a few times. Some of the medications are creating a haze which makes it hard for her to focus on her recovery and health. But true to herself she is marching according to her doctors orders & keeps on working to put food down.

Brant Tidwell and some scouts (his son) came by on Saturday and did some yard cleanup & trimming to spruce up the house. Cathi drove by it later in the day and was so pleased to see the work & how nice the bushes looked. She had forgotten about the request made to the scouts a while ago. Cathi sends a big thanks for trimming the bushes and the yard work.

Work begun on her house this weekend to get it ready for her to live in it again. The demo crew (Walt, Dennis, Jeff, & Mike) gutted the guest bathroom to remove the molded items and clean it in preparation for the builder to start on Monday. The builder did check in and started on Monday, but a there is a little misdirection on the work instructions. 'I wonder how Cathi would have handled this?' But anything worth doing is worth doing twice. So work should be completed by the end of the week. After another round of sterilization she should be ready to move into the house. Ready, but a little timid after the last time that resulted in a rush to the hospital.

There is little progress on a timeline for the transplant as the focus has been to rid the lungs of the fungal pneumonia. The transplant is still eminent and they plan to do a bone marrow biopsy later in the week to check the status of the latest shot of her brothers cells that she received while in the hospital.

Cathi's spirits are not where they were or need to be. She needs to see a positive bone marrow biopsy and a date for the transplant. Each day the lungs continue to sound better, but each day little bumps keep happening. She had did not feel well on Sunday after the clinic visit that ended at noon. After staying in bed for the rest of the day, she had a fever in the evening and it was decided that needed to back to the hospital. After a few hours at the hospital she did come back home and had a clinic visit that was uneventful on Sunday.

Once again, "home"

I got out of the hospital yesterday, not exactly free of all hospital commitments, but able to spend time in my own bed and my own place. Which is still Mom and Dad's upstairs bedroom.

Getting up the stairs is tougher than it was 32 days ago, but I can do it unaided. I don't try to do it carrying anything. I am really glad to be home because I had begun to notice daily the loss of strength. and that is why I am out. To get strong. To eat and put some weight on. Get healthy.

I'm still having trouble keeping food down which I have since I went in the hospital Feb 1st. I'm eating something that resembles 3 meals a day, to a cow or sheep perhaps. little bits all day long. It's tricky to know if the last meal is processed before I start eating the next one. But the bin is never far away.

Long days at the clinic to receive two pole anti-fungal drugs aimed at the pneumonia. Since the DLI I've had extraordinary growth in WBCs and neutrophils. This is great and is just what we hoped would happen. I'd like to see the same best possible outcome from the bone marrow biopsy next week.

and now I find myself drifting off to sleep while writing even though I'm watching that stimulating show "My Name is Earl?"

In your prayers please include my attitude thank you.

Cathi