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!

Another day at the spa

The KUMC spa, that is. Update from Janice. Things are going better for Cathi. Compared to the last time she was here, as in chemo timeline, she is doing better in most ways. More energy, perhaps less pain, more strength. She is getting dietary supplements and that is surely a big part of the picture. There was the surprise visit from parents and sisters/sister-in-law yesterday--all at once, but the hospital staff didn't seem to be upset with us having a family reunion in room 4227. So now the goal is to get home. Cathi is hoping for mid-week. Stay tuned for updates.

To the Hospital we go

Conor here...

Mom landed in the hospital yesterday with fevers and general not feeling well. She was feeling better prior to fevers kicking up today (but better tonight again). Much of her discomfort is not eating. So this evening they started IV nutrition in order to help her out.

Dr. Ajitawi leaned down today and told Mom that he loves her. I asked if she gave him a hickey like he had several years ago. :) We had a good laugh about it since she'd forgotten about that one. He's obviously the youngest of the crew yet has been a great doctor the past 2 years.

Not a lot else to report. Main update is she's in the hospital but they do anticipate her checking out sometime soon so long as she can get some food in and the fevers will stay low.

"I am not a Pollyanna." Joseph McGuirk

I'm sorry for the long dry spell of news. I've been trying to get organized a little bit and figure out next steps.


I spend most of every day at the clinic getting supplements (blood, platelets, potassium) and have been coming home with overnight packs of more fluids. Since the second round of chemo ended Sunday I feel pretty lousy most of the time and have had trouble keeping any food down at all.


Yesterday I met with a pain management doctor (palliative care) who I met with in the hospital last summer. She came up with a couple of creative ideas that have reduced the vomiting considerably. So I am more comformtable than I have been.


Today, Dr. McGuirk stopped by my little pod at the clinic and we had a one on one conversation. He opened with "I am not a Polyanna. I have to tell people they're going to die frequently in this practice over the last 20 years." He also predicted that I will feel worse before I feel better after this second round of chemo. For about 5-10 days. Hopefully I will not experience all the uneasy options, but I guess it's likely I might have one or two more than I do now. I can't imagine anything worse than the nausea and vomiting but my mind has kind of shut down much of the pain and symptoms from last summer.


Anyway, the upshot of our conversation is that he thinks it's possible to get me a couple more years on this earth, always reminding me that I am in charge. Right now the track is set until we reach the point of deciding whether to do a T-cell booster from my brother. Some other things have to fit into place between now and then (PET scan, bone marrow biopsy) but that is the next non-passive decision.


A T-cell booster, if successful, will cause more graft v. host disease. It will also be a long shot to hit the little window of success that McGuirk believes exists because the biology of my leukemia has been very different than any other he's worked with. My personal reaction is I may not want to live two more years like the last two. Isolation, pain, nausea, vomiting, midnight runs to the hospital, etc. No matter what McGuirk believes and hopes. There is a quality of life question here to be considered.


So I am setting in motion the actions to wrap up my life. Things to leave for my grandkids, nieces and nephews. Sorting out my business, which if you are a customer, I will be contacting you with some options in the next 10 days to 2 weeks.


Chloromas are terminal. Sooner or later. There is something about the science of the cells needing to be able to move in and out of the lymphatic system. And repeat transplants make the cells stickier and stickier so they don't move easily. They get stuck and they create chloromas.


I welcome your comments as always here. Love your cards. I'm interested in ideas and plans for this end of life stuff. Feel free to call and schedule a visit. I'm open to talking about all of it, crying about it, laughing about it.


My sisters, brother, and cousins and parents have been steady sentinels for me over the last weeks. Conor and Annie and Mark visited last weekend with the grandbabies while I was still feeling relatively sane if not "healthy." This Saturday we are having a blowout family gathering in my backyard, moved from its previous destination of the park. I am fortunate to have a huge backyard, overlooked by a huge deck (which I built myself!)


~Cathi

Editor's Note (Conor here)
Mom asked me to review this post and I wanted to leave what she'd written in tact as they're her words and there's nothing I want more than for her to 'own' the rest of her earthly time.

That being said, I want to add that McGuirk said there's a 'glimmer' of hope she could make it through this. Yes, it's < 1% but it's a glimmer. The only things we know definitively are what Mom alluded to above as well as the fact she is completely done with chemo. There's no reason we would do another round, which is welcomed news after who knows how many rounds the past 2+ years.

The way I've been explaining it the past week is that on 7.12.08 (the morning after her initial diagnosis), we sat in her hospital room and said 'ok, if you don't make it through this, this is what happens.' And we agreed to put the negativity aside and focus on surviving - never discussing again what would happen if she didn't make it. Now we do need to acknowledge that negative option is 99%+. So we make plans accordingly and enjoy the time we have.

This isn't the first nor last time I'll say this, but I want to let everyone know we, as a family, appreciate the tremendous support we've received since 7.11.08. It's been an amazing feeling getting everyone's emails, cards, phone calls, Facebook posts, and visits / caretaking. And as a son I cannot express how proud I am of the fight mom's put up. She's always been strong, but this ordeal has made it that strength even more apparent. I thank God daily for such an amazing mom to learn from and befriend. And I'm more than sure that everyone reading this would agree.

A beutiful World

Jason Black, Cathi's cousin, took this picture of the Lillie's in front of her house. It is a great picture, and was taken with the sunset in the distance, and it just brings out what is really nice in the world. All this just right outside Cathi's house. It is a reminder of the Louis Armstrong tune 'What a wonderful World.'

Cathi started Chemo again today at the clinic. This is the second round of chemo for the chloroma. It was planned for 4-6 weeks in the future. Since the chloroma has responded positively from the first treatment it was decided to jump while the iron is hot. Cathi is still not able to keep meals down regularly, but her counts are improving every day.

The treatments will be much the same as before. Chemo at the clinic with another treatment in a to go IV bag that she carries home. So this is a good thing to keep her at home for as much as possible.

Conor & Annie and their two babies will be down for the weekend. They come in on Friday and then fly home early Sunday morning. Gail continues her vigilant watch with Cathi. Gail will be going home on Friday afternoon.

The night before treatments was celebrated with a nice dinner with her cousins Jason, Sara, Gail, and her brother Walt. It was highlighted with a home made lemon meringue pie that he had a special recipe to make it with no dairy products for Cathi. The pie was great and as soon as Cathi realized it had no dairy products in it she quickly finished it. This was one meal that stayed down. The Pie was incredible. Jason is a great cook.

"Mondayness" is a good description

Thank you Robbie for the very descriptive word.

Gail writing again.

Mondayness. n. describes the feeling of overwhelm that arrives at the beginning of the week or accompanies any new venture.

That certainly describes today quite accurately.

Cathi put together a list of things she wanted to discuss with the medical team. When we arrived at the clinic today, the list came out and Cathi started looking for answers. When is the PET scan? When does the next round of Revlamid begin? Will there be another round of chemotherapy? Is there another Bone Marrow Biopsy schedules? Why is there still nausea even though chemo has been over for a couple of weeks? WHAT IS THE TREATMENT PLAN? IS there a treatment plan?

These questions have been accumulating for a while, but there has been such attention being paid to the day-to-day routine of "let's get through today first" that the questions have been pushed aside. Until now.

Neither the nurse practitioner nor the case coordinator had any real answers for Cathi. That lack of info has left Cathi in the dark about the future, creating a lot of anxiety. Since the beginning of the AML ordeal, there has always been a plan. The medical team knew what they were dealing with, what to do, when to do it. Chloroma is different. It is rare and it was not on anyone's radar to have a plan. Cathi was able to communicate her frustration very clearly today.

Cathi now has an appointment with Dr. McGuirk (the head of her medical team) on Tuesday early afternoon. She is expecting to get a lot of information about what the treatment for chloroma looks like. It might be good news. It might be bad news. But it will be more than what she has at this moment. Today, it is a distinct feeling of helplessness since she has no idea what any of the medical team has on the plan for the next steps.

She now has a plan to get a plan. It is a step forward.

There was positive news today with the blood work: the potassium is in the normal range. As is the platelets. Most of the other tests are either already at normal or very close to it. This is very good news - she did not have to have any IV supplements today and her next scheduled lab appointment is Wednesday.

The nausea is slowly abating and Cathi has been able to eat a lot more than just a few days ago. She lost nearly 30 pounds over the last few weeks. Time to get some meat back on those bones so I'm working at making appetizing food for her to eat. She likes eggs. I can cook eggs. She likes sherbet. I can scoop it into a bowl. She likes smoothies. I can work the blender. I hope she likes my cooking. (I'm kidding. I know how to use the microwave too.)

The pictures Cathi has been getting of her beautiful grand babies have been coming in regularly. Those are two incredibly adorable children, Harrison and Ella. They will be here to visit (with their parents Conor and Annie) in about 10 days. It is on the calendar in really big handwriting for Cathi to see and plan for.

Having plans is a very good thing.