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

The Big Green "N"

N is for Nausea. And that is the hurdle Cathi is faced with now. (Janice posting again.) The constant throwing up has ceased and the plan for each day now includes NPA (No Puking Allowed). But the stomach is queasy much of the time and food just isn't quite making it to the top of the list. Slowly but surely, with the help of a number of anti-nausea and anti-emetic drugs, this is improving. In the meantime, we are still at the hospital, getting TPN.
Seven laps around the floor today, in two installments, so the strength is returning. Chemo-brain is gone, if the completed crossword puzzles are the evidence. All we need now is blood counts to start back up (Doctor M. says next week on the counts. "It's too early."), and appetite to make an appearance.

No one has actually mentioned a discharge date yet: Cathi says when she can consume five or six hundred calories in a day and keep it all down, she will feel ready to discuss home-going. Stay tuned!