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!!

Womit, or not

Friday night was the Light-The-Night walk to raise funds for the Leukemia and Lymphoma Society. I and my family missed out entirely but Team Lucky Hikers did have some walkers. I'm posting the picture here. (Chris, Jordan, Sarah and John.) It makes me laugh and makes me cry. I was so disappointed when the nurses walked out of here Friday with their red shirts. But our team did great on the fund raising. Thanks to all who donated. And thanks to Sally for pulling my weight after I got sick right when things began to heat up for the race.

Sunday HB and Ella were baptized and all went well despite my absence. Conor posted a video which is amusing. Harrison was not at all sure about that water.

Life goes on whether I am upbeat or depressed.

I can report that my outlook has calmed even though I often have moments of glum. Sometimes I start thinking that perhaps I can get well. Those moments come, of course, when I feel good which happens more and more. As long as I don't eat.

More changes in the drug routine. As of today's change I'm back on clear liquids, which frankly, is more than I've eaten in a week or more. The doctors are not unified on this situation at all. Dr. Abhyankar is the hospital doc right now and he wobbles about the things Dr. Ganguly thinks are the right thing to do. As in all such situations, mom has made a list, asked her questions and come up with a plan. Everyone is good with this plan so we're off and hopeful.

A fellowship doctor came in one day last week wanting to do something or other procedure and he said to me "did you womit this morning Mssss Maynard?" I squinted and asked him to repeat himself which he did exactly. My sister was here and she started laughing. "Vomit, he said. He wants to know if you vomited!" I told him yes but I was NOT having his procedure and ran him off. But "womit" has become a new amusement around here. If you were commenting on the blog and you got that as a confirmation word, would you ever think "the way a turkish doctor pronounces vomit?"

~Cathi

Reality is

We had a family meeting this morning with Dr. Ganguly, me, Mari, Mom & Dad & Walt in the room and both Mark and Conor on the speaker phones. Dr. Ganguly was laying out options for the next few weeks. At the end of the session I was pretty depressed. Essentially no respite living or dying. Lots of "we don't know what will happen." Lots of "WHENS" and "IFS"

It made me pretty crazy and very very glum. I'm missing the babies' baptisms in chicago. I can't really eat and I'm sick of vomiting. I wish I had never agreed to this last bit of chemo.

So the upshot is I'm going to be around and I may be miserable for much of that time.
Just a little dose of the real world of cancer and chemo.

Thank you for the prayers and thoughts and cards. I love the idea of knowing people are out there on my side.
~Cathi

Travel Detour

After a hard day of keeping food and pills down Cathi has landed back in a room at KU Medical center. Her sister Mari took her in early this morning and she was admitted into room 4102 in the BMT section. So we are back the social hours with the nurses and limited guests in the BMT section.

This week had progressed well with Cathi getting back home last Saturday and slow improvements in the WBC's. Her count reached .9 this week, and the absolute neutrophil has reached .6. The magic number on the neutrophil is 1 and then a whole new diet opens. Except that food rarely stays down which is a downer.

Her spirits are not where they should be as the plan was to board a plane and travel to Chicago for the baptism of Ella and Harrison. With the exception of the vomiting the she was progressing towards being able to go. Tuesday she had to concede and pass on the trip to Chicago. So now it is just another weekend with her brother and Mom, and not the fun and excitement of grand kids and the big city.

Her resolve and target remains the same; to get past the vomiting and keep the dinners down.

Courage to Travel

I arrived at home Saturday afternoon and immediately was buried in the commotion of home. Where does this go? Do you have any...? Can x come over? But the priority was home health care bringing me TPN, otherwise known as IV nutrition. It's a little more complicated than the other IV hookups we've had at home. And requires 16 hours to drip into my body. The backpack with the food, pump and power pack is large and heavy. We hook it up in the evening and it runs until mid-morning the next day.

I wish I could say that soon I won't need it but the barfing is just about as frequent and just as unpredictable as ever. This morning I felt good and ate a "real fruit frozen bar," but lost it on the way to the clinic. (We never travel without a barf bin.) No nausea, just upchuck. It's frustrating.

I get tired easily and only occasionally have a nice burst of energy to get something done. However, Mari called in her friend Cheryl, who has worked a miracle in my house. Cleaning and organizing til I hardly recognize the place. All the junk is out of the front room--even the Nordic Track brought in for cousin Gail. My friends, Mark and Deb Paton from Arkansas City came and cleaned up the weeds around the deck (remove the mulberry tree from the viburnum.)

The stack of pills is overwhelming, even parsed out in 4 batches. And it is sickening to see one of the $100 plus pills hit the bucket when I vomit. I have to say, vomiting is the worst side effect. The worst. I just get tired of it. I'm nervous about eating.

On the up side, the counts are continuing to recover. WBC was .9 yesterday with ANC .467. Perhaps I will be able to go to Chicago for the baptisms of Ella and HB this Sunday. I will have to get willing to haul all this stuff with me and either not eat or be willing to lose it.

Dr. Ganguly nearly drove me crazy in the hospital playing games with when shall I go home? He kept saying "You tell me when you want to go home and I will make it happen." I kept saying "I'm still puking everything I eat. Do you want me out of here?" "Oh no, no. You're in charge." he says. Nevertheless this conversation plays out day after day. Finally I said "Ok I'm ready to go home Friday." His reply was "oh no you're not. You told me you wanted to feel good and then go home. Do you feel good?" uhhhhh NO! What a jumble he made of my head.

Dr. Abhyankar has just stopped in and suggested an additional dose of Reglan. That is a drug that purports to keep food moving through the digestive system. I take it on a strict schedule each 24 hours. So one of those doses will be doubled. I don't have much hope for respite from the vomiting but maybe I'll be surprised.

My WBC is .9, and the ANC is .7xx something. Both good enough to go to Chicago if I am courageous enough to go.
~Cathi

But where to now - Home?

Cathi is in the hospital keeping a vigilant eye open for signs of improvement. They are there but do not come quickly or easily. This week has seen slow but steady improvement. The Sunday afternoon biopsy results came back empty or negative. Empty is good. That means no blast cells, which are leukemic, but also no bone marrow cells. This is what the two treatments of chemo are supposed to do, kill the Chloromas. Chloromas as you recall are concentrations of leukemic cells, and at the same time the type of chemo also kills the bone marrow. So it is a wait and see game. Wait until Walt's cells grow back into Cathi's marrow. To help with this she is starting shots of neupogen. The neupogen shots cause the bones to ache and the joints to have a little pain. Damn youngest kids they do great, but are always late bloomers.

Today her WBC rose to .3, which is higher than it has been all week but only cause for guarded optimism. The WBC will go up and down and take a while to recover, but we are past what the Dr's think is normal recovery. But much of what we have been through has not been normal, so we are buckled down and waiting for increases in WBC counts. Continued increase is a really really good thing.

The throwing up has lessened and little bits of food are staying down. Her esophagus is also healing and she is on less IV medications as the nurses switch the medications back over to pill form. Tonight she was able to celebrate Jodee's birthday with a chocolate cupcake. A cupcake that knew its place and stayed there. Jodee is a nurse on the floor and part of Cathi's fan club. Little happy dance....

Going home is the big news today. Dr Ganguly came in and said she can go home at any time she chooses. So she has decided that she is going home on Friday, and will tell Dr. Ganguly on Thursday morning. So again is back to the wipes and sanitizing at Cathi's house to get it ready for her.

Janet and Cathi had a wonderful visit this past weekend and there was much sorrow as they hugged and said good bye on Tuesday. Janet is a long time friend of Cathi's from England. Sad to see her leave, but we will look for her wisdoms on the Blog comments. Mari has taken over watch with Cathi and will be here until next Wednesday.

Sunday

No Chiefs game today. We're saving all that energy for the stadium tomorrow night. But k-State won again yesterday. Good things.

I don't seem to be able to get by a day without plenty of commotion and today it was puking, company, and a bone marrow biopsy. Dr. McGuirk was less certain of his glimmer of hope this morning. The white count is bouncing along the bottom .1 to .2 to .1 to .1 to .2. I am still getting platelets almost every day and blood several times a week. We need these counts to go up and stay up. The white count should lock in and go from .2 to .4 to .7 to 1.2, etc. So the bone marrow biopsy is to discover what's going on in there and whether we will try neupogen shots which typically stimulate production of white cells.

There are squishy (the doctor's term) sounds in my lungs. I spent as much of today out of bed as I could. In another chair, usually the recliner, but plenty of walking too.

I keep making my lists of things to do whether or not I get them done. And I'm working to record important facts I think my kids need to know. Where the owners' manuals are for tthe built in appliances. Which Christmas presents are most treasured and why. I think I am pretty organized, especially after the last 2 years, but it's just almost organized. There seem to things not quite finished all the time. Anybody who has this stuff in the bag, stand up and be counted. The rest of us need your assistance.
~Cathi

"I got you into this...."

A very busy week, with a post from Janice again.
The white count nudged upward briefly on Wednesday, then stepped back down to .1 again. Cathi requested some WBCs from Dr. McGuirk and he told her it would cost her a dollar. She reminded him that he told her "I'm going to get you out of this because I got you into it." Which he gamely conceded. So it seems that the rising white count, when it comes, will be gratis. Or would that be pro bono?? Doc says it's time for the counts to start recovering, WBC first.

After a couple of days of no vomiting, it came back again. Dr. McGuirk hypothesized a possible virus in the stomach and started medication for it. Now we are on day 1.5 of no vomiting, after losing breakfast on Wednesday but nothing since then. Good news!

Homegoing has not been discussed yet but Cathi speculates that when she can keep a thousand calories down, that will be the point. "A thousand calories--three candy bars," says Janice. And Cathi obligingly breaks off a piece of that Kit Kat bar and eats it!
It's been good to see old friends behind the yellow isolation gowns on 41. And some new nurses, who are doing a bang-up job as well.
It's time for the changing of the guard, as Janet has arrived from England and will be stepping in as caretaker. ""It's been lovely, Mma. Maynard. Thank you for the lovely visit!" "Yes, Mma Schlichting, it has been lovely!"

Unit change

Yesterday I moved into Unit 41, the bone marrow unit at the hospital. I wanted to be over here with my favorite nurses who knew me and my disease. There's been no shortage of excitement, even though I still feel lousy.

A hot spot developed on the back of my arm behind the PICC site, so first I got a new PICC line. Today, unexpectedly, I had an ultrasound of the arm even though it's much better. The scheduling on a holiday weekend has to be done carefully--omitting the word "staff" from the order caused the sonogram to be scheduled for the next business day.

Never mind, we forged ahead. Janice has booked a massage for me for tomorrow morning. McGuirk approved it and Janice has made careful plans for sterilizing the table and getting it all in here. and THEN we learn that I am scheduled to have an endoscopy first thing in the morning. This took some more calls to ensure I am the first scope of the day. Calls from the nurses, signs in Endoscopy. Threats from Janice if I am not back in my room by 9:30. Janice is a force. Today she shamed two nurses from Radiology into taking me back to my room, in lieu of waiting longer for "transport." (I shall have to write about transport sometime. It is an underground organization here.)

Currently I feel lousy. We have no target dismiss date. I am unable to keep much food down. Today even eating or drinking causes nausea. There are all sorts of creative solutions being thrown around. At the moment I have a seasickness patch behind my ear and that has been the most helpful. There is no shortage of anti-nausea drugs, but they're not doing the job. McGuirk has decided perhaps this is a stomach virus which is the reason for the endoscopy tomorrow. He already changed medication based on that. I am still getting almost all medication via IV.

Dr. McGuirk's closing comments today (aside from a crack about the massage) were to the effect that he had to get me out of this mess since he got me into it. The grace to feel bad.
~Cathi