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.

Eyes Wide Open

From Gail:

Today was more eventful than we thought it would be - all good - but it made for a very long day.

The "quick" stop for lab work at the Cancer Clinic (10:30 a.m. appointment) turned into a 3 hour visit. Cathi's potassium continues to stay JUST below the bottom of the normal range. So, they hooked her up to the IV pole for a mid-day boost. She also got platelets again. All the other counts are inching toward the normal ranges while the potassium and platelets are behaving as expected. Cathi goes back on Sunday morning - at 9 am or before - to get another dose of potassium. [Gail has learned an important lesson: do not anticipate the lab results. It might work for an office pool, but the reality is it's just like that box of chocolates - you don't know what you're going to get.]

The big accomplishment for the day is that Cathi stayed awake all day. Her first nap was around 5pm. Yesterday at the clinic we discussed with the nurse Cathi's lack of awake time. After reviewing the meds with the pharmacist, we learned that the anti-nausea med has an added benefit of causing drowsiness. The pharmacist suggested cutting the tablets in half and still getting an anti-nausea effect. BINGO. Wide awake almost all day while having fewer episodes of nausea. She is safely tucked into bed now.

Cathi's brother, Walt, stopped by this afternoon and installed a new phone jack in the kitchen, which is open to the family room where "Cathi's Chair" is located. The end of running to the front of the house to answer the phone. YEA!!

Thank you to all of you who have sent Cathi messages, texts, emails, and voice mails. It is helping Cathi get her mojo back with all the good wishes & love being sent to her. Keep sending that mojo!

Being Perky

Cathi's cousin Gail here. No, I'm not perky and it's not a word I would use to describe Cathi most of the time. But, today she has perked up. She woke up this morning with a little tiny bounce in her step and that great big smile we know and love.

Last night we implemented the policy of "take a Tylenol if your fever is going up to see if it goes down" and, indeed it worked! It's a fabulous policy allowing a decent amount of sleep and no calls or visits to the med center.

This morning, after a breakfast of a huge bowl of pills that we have learned can be split and mashed into tiny bits - making them ever so slightly easier to get down - we dashed off to the clinic where Cathi finished up the last of the IV antibiotics and another round of potassium. The potassium takes . . . f o r e v e r . . . to drip through - it cannot be delivered quickly due to some medical reason that I am not grasping but know that if it could be delivered faster we would demand it. It was almost 4 pm by the time we got Cathi home.

The good news: WBC counts continue to rise. This is absolutely great since it shows that her bone marrow is working. The other counts that need to be higher are slowly rising as well. It doesn't always look like a lot from one day to the next, but when it's charted out it is obvious that Cathi is on an upward trend! It will be a slow climb, but it is most definitely climbing.

Cathi's not scheduled for any time in the clinic beds over the weekend. She has only a quick stop at the clinic on Saturday and Sunday for lab work to make sure that numbers are where they need to be. That means more time at home working on getting perkier. (Hopefully she will find that as amusing as I do. Seeing her laugh is such a treat.)

Love you so much my dear cousin!

Crosswords puzzles and Disappointments

Well. Three days of steady improvement. Two days of no fevers. Time to go home. and then what?? A fever. Dang, I hate it when that happens. So Cathi is not going home today but the heavy duty antibiotics are dripping and the fever has broken and it will happen soon.
In the meantime, things are looking up. The blood counts are beginning to recover from the chemo, right on time. Thanks to the healthy marrow, Cathi's white count is now 1. The white count recovers first, so this is a celebrated happening around here! The general malaise that accompanies chemotherapy is receding, energy is gradually returning, color is improving and the tumors are all but gone. All great stuff.
The primary indicator of improvement has got to be the crossword puzzles. Even with what she describes as "chemo-brain," Cathi completed the NY Times crossword puzzle yesterday and is more than half done today. Those who have worked these puzzles (KC readers, they are in the sports section, NOT the comic pages) can attest to completion as a sign of progress! FYI, the Rap singer's road crew is called a posse.
Cathi's posse is still sister Janice, to be replaced by cousin Gail later this week. Stay tuned for further developments!

WBC-check! Fevers-check! Next; Home, James??

from Cathi: What I have now is a type of leukemia that colonizes in tissue rather than blood or marrow, as usual. It's very unusual, called a chloroma, but it gets treated like leukemia.
Chemo to the edge, neutropenic diet, isolation while the counts are down and high hopes for when they come back up. The two tumors happen to be in my breasts and they are shrinking rapidly. I have been in and out of the hospital a lot though I am staying at home with a caregiver. I am in the hospital now while they try to figure out the cause for an unknown fever. The tumors are positive for 5q- and this is good. Chances are we won't have any big information till near the end of August.
At that time we will do another PET scan and decide next steps, which could include another round of chemo.
I apapreciate everyone's thoughts and prayers. Cathi

from sister Janice: After several days in the hospital we are anticipating getting sprung from here on Monday or Tuesday. Two days without fever, the docs tell Cathi, and one of those days is history now.
There is some speculation that the fevers, and some lung congestion, could have been caused by one of the arsenal of meds, Revlimid. This stuff is the big guns, the stuff that boosted the slipping graft into the winner's circle last winter, and is really important. Fortunately, it is taken in 21 day cycles, and this is break time.
The blood counts are recovering from the chemo, Cathi's energy is coming back, and the idea of going home is the main thing right now!

Almost like home

From the conversations and hellos in the hospital Cathi is almost a regular in the BMT ward. Monday at the clinic the blood pressure fell lower than the clinic staff was comfortable with so it was off to the hospital. This time in her own personal carriage. Not the best way to go, but none the less a deluxe ride. It comes with the frequent guest program.

This time it was to the other end of the BMT ward to room 4112. While they did not dance like the last time she arrived, the nurses all commented how nice it was to see her. The blood pressure came back up to the normal range for Cathi, which is lower than most people.

Platelets, blood, & potassium (oh my) are all almost a daily routine. There have been a few days where the food came up just as easy as it went down. After a few days the food is starting to stay down better, and the nausea might be starting to let up. This is all normal, unwelcomed, but normal as part of effects of chemo.

Janice and Walt have been keeping company with Cathi. Walt brings the paper in the morning and Janice spends most of the day with her, with occasional visits from Mom & Dad, and a few select guests. Yesterday's highlight was a close cut from Robin, and Cathi is sporting that GI Jane look that she wears so well. It was tough to see the hair go again, but all part of the regimen.

Tomorrow the highlight is the much not awaited to take another look and biopsy's from her lungs. Never a good experience for them to stick and prod down inside the lungs trying to figure out what is down there. But the fight is all out and tomorrow Cathi goes in to get her lungs looked and poked at. For all the times they have done that before the results have been minimal, but they keep at it until they find something. Remember that Cathi has the pneumonia causing fungus in her lungs that is a permanent resident. Only by using the right drugs can they keep the pneumonia brothers at bay. While there has been some fluid build up and slight pneumonia in the lungs, she is doing remarkably better than in the past.

Spirits for Cathi are not always high, but each time the door opens, a new nurse or aide pops in and a smile comes on her face and they catch up on what has been happening in the past year or six months. After they leave Cathi fills in the rest of the story from the events they were talking about when she was in almost a year ago.