To illustrate how much improved I'm feeling I will just tell you that I ate a McDonald's happy meal for lunch yesterday. The fries didn't taste so great but the burger was fine. And no womiting. I ate at McDonald's because Mari and I were on a major shopping trip and simply didn't have time to stop. We hit JoAnn fabrics, Marbeck's, and Aldi's. All in one trip. I came home and took a nap but I take naps most days.

Tuesday I got a call from the clinic that my CMV came back positive. That would be why Mon and Tues were not so great days. Changed my meds again but at least I can swallow pills again these days. So I take this big honkin expensive pill for a week and check again. Then I think I'm off a week and back on a week. I have felt good since Tues.

I'm pretty weak and not really getting stronger, thanks to the prednizone. They cut it back 10 mg on wed so now I'm taking 5 pills a day instead of 6. Of course I have to split them between morning and evening so that means I'm still taking 6 pills because 1 is cut in half. The new antiviral is 2 big pills to replace 2 big halves of 1 very big pill; and of course they added a nice size capsule to the mix--all twice a day. So it will be a while before I'm driving. Tractors anyway.

My niece's wedding was lovely and she was beautiful. It was fun to see all the family. I was pretty tired after just the wedding though so we headed home instead of to the reception. Mark and his buddy came to the wedding which was a nice benefit--Nice to get his big bear hugs. When we arrived at the church for the wedding I checked my blood sugar and it was 48! yikes! so I sat in the car and drank juice while the kids rustled up some chicken nuggets for me to eat. It took a while to get the blood sugar count up to normal but I scrambled in to the church at the last minute.

Well it's another long day at the clinic. We've been here 2 hours and just got lab results. I could still be here at 5 the way this is going. One fellow just sat down outside my door and got his labs in half an hour or less. I seem to get the short end of the lab stick every time this week. sigh.

~Cathi

Another focus shift

I am still at home. I feel surprisingly good. I have only womited twice this week. My blood sugar is pretty stable so incidents of lightheadedness are infrequent. The clinic actually suggested staying by myself in the afternoons.

A few weeks ago I did not expect this. I did not expect to be shopping for November birthdays or Christmas presents. My white count and my red count are holding up pretty good; no neupogen or blood transfusions for a couple of weeks. Just the platelets need supplementing.

I ask the providers what's going on, what's likely to happen and the universal answer is "we don't know." So I could continue improving and enjoying life for months, a very indefinite number.

I have to change my thinking. Shorten the horizon. Do what's possible today. And be very very grateful for the opportunity and for my caregivers who make it possible. I have approached this illness from the start with a lot of energy, with specific recovery goals. Now then I am coasting. My family and friends who are such diligent, loving caregivers are putting in the energy. The folks at the clinic and the hospital are no longer surprised by the number of people involved but they are amazed. Few patients are so lucky. I think this is the reason I'm still here and feeling good.

So feeling good means that yesterday Mari and I went to a quilt shop and bought fabric for Ella's quilt. Today we are driving down to Ft Scott for my niece's wedding. We cut an article from the paper about driving routes with good fall color. Obviously I hope to sew the quilt. So short term plans but not staying home.

The visit with the kids was awesome. I could not lift HB or Ella but once someone put them in my arms we were good. Harrison went across the street to play with Jake and Clare each evening which tickled them all. Conor and Annie took very good care of me and the house without complaining. It really added a lot to their workload but they just got after it. Annie's Mom, Cheryl, drove up from Liberal with baby things so we were well equipped.

Between Walt and Margaret/Craig, little things around the house are getting done. Mari makes the house shine every day. Last night she tried a new recipe which was fun and tasty. Margaret is now expecting a baby in May...we're all very excited.

Meanwhile I am at home. I visit the clinic every other day. I'm semi busy and semi content.
~Cathi

Home in the zone

Sunday night and I am home. I got out of the hospital Thursday late afternoon and have been enjoying being here. I have the TPN to carry around most of the time, and baby bottles of Caspofungin, the current anti-fungal I'm taking.

The rest of the pills are a crapshoot. I try to spread them out so I don't take too many at once but my stomach still revolts against the pills. The womiting continues but there is no blood.

I'm trying to eat so I can gain some weight and most things stay down. But it's not enough to stop the weight loss.

Conor and Annie arrived today with Harrison & Ella and I am totally charmed by both of them. Harrison is having the most fun with my Halloween candy bowl that has a green hand in it that reaches and talks when you reach in the bowl. But we have plenty of toys for him. Zack & Jenn loaned us some, and Annie's mom drove in from Liberal with all sorts of baby gear to make life easier.

My counts are holding pretty steady except for platelets. I went in for one unit today and I go back Tues mid day to be checked out. I must check my blood sugar 3x a day and take insulin if called for. Though yesterday I had a spell of low blood sugar that we like to never got to sort itself out. Juice and peanut butter and finally hard candy.

So I'm going to meander over to the pill cabinet and see what I think I can safely take this evening that will stay down. The puzzle is made more interesting because the prednizone interferes with my sleep. Did I mention that? Prednizone is now part of the regime.
~Cathi

blog update

Wed. 10/6. Discharge from hospital. Vomit 1st thing I try to eat. It's late, I went to bed.

Thu. 10/7. Margaret and Craig arrive. They are so kind and loving and hard working. Eat just a little. Vomit.

Fri. 10/8. Craig takes me to the clinic and I see Dr. Aljitawi. All kinds of ideas which have been tried. Get some platelets.

Sat. 10/9. Eat a big breakfast that Craig cooked. Coffee cake and baked eggs. Then have a big supper that brother-in-law Mark cooked--bit of steak, carrots, baked potato. Followed by healthy serving of Mom's cherry cobbler. yum

Sun. 10/10. Mom takes over from Margaret & Craig who head back to Kentucky. She is on a mission to get food and drink into me. My throat is blocked somehow and I can only drink a couple of small sips without choking/vomiting. Same for food. Vomit often, with lots of blood. While taking ambien to just get rid of this day, begin vomiting violently with lots of blood and clots and 1 very large clot that obviously had been blocking my esophagus. I'm happy to be able to take a large gulp of water, not happy about going to hospital.

Sun 10/10. 9:30 pm. Get admitted to hospital. Room 4112. a nice big room.

Mon. 10/11. Much commotion because I've been given 2 units of blood with no corresponding rise in Hg count. "You are still bleeding internally somewhere." Rock and roll the GI docs and an endoscopy, meanwhile drawing blood about hourly to check levels. Scope finds a protrusion in esophagus which is not currently bleeding so took pictures and backed out. Vomited at end of procedure while still all trussed up, very messy. Doc said that was good, "all green bile no blood." (Have they forgotten the original problem is vomiting?)

Mon. 10/11. 7pm CT scan with contrast to check for fistula relative to protrusion located above. Extremely weird sensations go with that contrast. Overnight goal is to get platelets over 50 for another scope on Tues to fix it.

Tues. 10/12. No food or drink after midnight til everything was ready for the repair mission. Platelets 57, woot woot. Scope finds protrusion was another blood clot, easily removed. Completed scope but did not take biopsies (don't know a good thing when they see it.) However two recent scopes with biopsies showed no GVH.

Tues. 10/12. 5pm. Ate a bowl of cream of wheat and a pancake both of which tasted great. Watched Wheel of Fortune and The Biggest Loser. Got in bed and vomited. No blood.

Wed. 10/13. Vomited. Ate Blue Koi noodles for lunch. BMT doctor wants GI docs to step up and help diagnose the vomiting. Waiting on sonogram of liver. Expect to vomit again before then. However food tastes better, and the food appears to be digesting and leaving the stomach.

sorry updates are so long in coming. I feel pretty good right now, just frustrated and tired.
~Cathi

Muscling through

I came home yesterday. It's very nice being here. Sleeping in my own bed and moving around without a pole even though I have a heavy backpack of nutrition to haul around.

However I have not been keeping my food down. I am bound and determined to muscle this out and figure out how to eat and keep it down. Today my stomach has actually made hungry noises and I have obliged it by eating and since breakfast that's been successful.

Yesterday after the neupogen shot my wbc was 3.2 and my anc was 4.760 or some ridiculously high number. This means I can eat anything I want if my stomach was cooperating. I go to the clinic at 8 tomorrow morning. We're going to try an every other day schedule. That should be enough to keep my platelets and hemoglobin in the functioning range.

I confess I don't feel very good. This may be the normal pains of taking neupogen or it may be something else. I don't have the energy that I had even earlier this week.

My niece, Margaret, and her husband Craig are my caretakers this weekend then after a day with Lori, Trish will come for a few days. I think that gets me to the weekend that Conor and Annie are coming with the kids.

Hi everyone,
Robbie here, posting for Cathi. I'm heading back to Vermont later today but have enjoyed hanging with Cathi in 4102 in the ol' KUMC BMT. She's doing pretty well and is anticipating going home tomorrow or Thursday. Dr. Abhyankar ordered another neupogen booster shot for today to kick those white blood cells into gear, the first one since Thursday. Cathi's making progress with eating and has two meals down today so far. She's still using Ativan (an anti-throwing-up drug) to keep things settled but no womiting so far today. We're heading out soon to walk a few laps around the unit.
I'm getting this hospital figured out, and my routines here. Because it takes several minutes to enter the unit (push wall button to open first set of double doors, wash hands thoroughly for 15 seconds, dry hands, sign in, pick up the phone to request second doors opening, wait for doors to open, enter unit) I try to group things together. I go down the stairs, get the newspaper, peruse the options in the cafeteria and plan lunch; see if there's anything new in the gift shop; climb the stairs back up to the 4th floor, stop by the Resource Room to see if there's anything new and to heat up a cup of water for tea; then go through the process of entering the unit again.
The unit is very well staffed - plenty of nurses and aides. When Cathi pushes the button asking for help, response time is excellent. Of course, she knows them all and they all know her. The nurses in particular are caring and seem to be on top of her needs. It's a small unit - only 12 rooms. Transplant patients are usually admitted for a four-week stay so they often bring their own TVs, DVD players and other things from home to make their stay easier. When we were walking laps yesterday we saw a darkened room lit with several candles (or those battery tea light things that look like candles - I can't imagine that real candles would be allowed). Of course, Cathi has her purple-jacketed dancing Elvis clock on the wall of her room, thanks to Mark who brought it from her home. Each to her own!

Grallace & Womit

Gail updating the blog this afternoon.

Cathi has steadily improved since earlier this week. 2 days of no womiting, followed by 2 days of womiting. Very little vomiting, but vomiting, nonetheless.

Meds have been changed. Cathi is getting only overnight nutrition (TPN) and some other antibiotics via IV. After those finish, the IV pole is pushed aside. More meds are showing up in pill form, including Ativan for nausea. Dr. Abyankhar has also provided a base rate of Klonopin to battle the nausea. It seems to be working well since over the last 36 hours Cathi has only had to womit twice and only upon waking in the morning.

Her counts continue to rise slowly. She had received Neupogen shots to boost the neutrophil production in the bone marrow and the latest test puts her over the neutropenic threshold, meaning she can eat anything she wants to! (the irony is obvious in that statement...)

The neupogen shots have stopped for a couple of days to see if things will maintain on their own. If the numbers begin to decrease, then more neupogen to urge those buggers back into production.

Her white blood cells, hemoglobin, and platelets are slowly improving. Dr. Abyankhar seems to think that those counts will jump aboard the healthy train any moment. Every day that they inch up is another indicator that the bone marrow is working.

Cards keep showing up in the mail and Cathi is DELIGHTED to open and read each lovely written note. Friends from around town have popped in for a few short minutes to say hello and catch up very briefly. It is good for Cathi to see people and know that she is not forgotten in our busy lives.

I (Gail) spent all day Thursday taping Cathi's stories about her growing up years. I ran out of time Friday to finish the project, but Cathi's friend, Robbie, who will be here over the weekend, will take up where we left off. The stories are poignant and funny at the same time. I've learned things about Cathi I never knew - such a treat to get to know Cathi through the telling of her memories. If you've ever listened to NPR's Story Corps programs, you will understand the format of this project. I have a lot of editing to do, but will be able to help Cathi cross a few things off her list very soon. It will help relieve some of her feelings of too many things to do in too little time.

Cathi's days seem to blend one into another. Having emails, cards & blog posts is such a treat every day. Keep 'em coming & keep up the NO WOMITING karma!!