Still Home sorta

Spent thursday night in the hospital with a fever, getting loaded up with platelets and the inevitable potassium. Left the hospital to go straight to the clinic for more potassium I can't eat enough to get the potassium up and the oral medicine is hard on the gut, so more IVs.
I'm now getting 3 antibiotics at home via IV. The doctors think they are very clever "CDE" Caspofungin, Daptomycin, Ertapenum.

The full effects of the chemo are kicking in. I'm losing my sense of taste, spending a lot of time sleeping, and not very witty when I'm awake. My sister Janice is here for the next two weeks and it will be nice to have that consistency though everyone has been very generous about stepping in and staying with me.

Hopefully I'm about halfway through the low spot and can get across the other half with no mishaps.
Walt has done a fine job updating the blog and you will probably hear more from him.

There's no place like home

Cathi woke with a spring in her step and the wind on her back on Wednesday. This could only mean one thing - home again.
After more lasix and subsequent loss of fluids, the oxygen came off and she was walking laps. Since the fevers were also gone, she was allowed to come home. She is back in her house, keeping a low guest list and resting and recuperating.

A Day Hanging with my girl Robin

Today finds Cathi still in the hospital hanging with her pal Robin. Robin was the nurse that was there in room 4101 when Cathi checked into the hospital back when this all started on July 11, of 2008. (Now better known as 2000 Late). So Robin is there to say hi and help Cathi through the days. Robin is such a great nurse with a presence that just fills a room with smiles. Great to have such help.

The fevers have come down and Dr Ganguly says, 'You had an infection, and we have fixed that.' Her esophagus is also healing and she will start soft food again. So this good progress and Dr Ganguly is always quick to point out that "We have fixed this to."

But now he is not committing time to go home and is keeping her in the hospital because of her lungs. There is some noise from fluid in the lungs. A CAT scan was ordered to look at the tissue in her chest to see the progress from the Chemotherapy and also to look at her lungs.

No news on when Cathi will be getting to go home, but every morning the question is asked 'When can I go home?'

Another Day, Another plan

It was another up & down night in the hospital. This time it was up and down fevers all night. The pic line cultures came back positive for Staff, so the culprit for the fevers has been found. In the middle of the night new pic lines were ordered and at 2:30am the team was assembled to insert new pic lines into her right arm. This time a new location was picked and the lines went right in. So after all the excitement was over and the X-Ray came in and verified the pic lines were in correctly on the first pass.

Dr Ganguly came in happy that the staff was identified, noting that these things just happen. Not the cause of anything that anyone does, it just happens. So the treatment is a daily antibiotic drip. The good news was a going back to the original plan and going home on Monday if the fevers disappeared. But, he was quick to note that she was very susceptible to infections and it may happen again and she would be back at the hospital.
The fevers did not go away and the day was spent watching fevers get up to 100.5 degrees, then some Tylenol and then the fever would drop.

Food is still slow going down and the diet is mostly jello and orange flavored ice. But the esophagus is healing well and even though pills go down slowly, they go down without damage. j Just when all the excitement had settled down the Dr ordered Lasix to drain the fluid build up. Being in the hospital with constant fluids coming in the IVs' can create fluid build up in the chest. So the Lasix was ordered to keep the fluids buildup down, even though the lungs still sound clear.

So with the fevers it is unlikely Cathi will get home on Monday, but it is encouraging to know that the infection has been identified and the cause of the fevers is being treated.

Not another boring Post

The day of the boring post ended with a trip the hospital for some platelets. The platelets were the easy part. It was when the nurse showed up with 4 bags of potassium that it was exciting. Each bag is only 50ml, but has to drip over an hour. So Cathi got fluids, platelets, potassium and fell right to sleep. While her donor host stayed up in the hospital. This was Thursday evening.

Friday after losing to much weight she was admitted to the hospital, in order to watch her closer. The below is Cathi's note going into the hospital.

Hello everyone,
After a somewhat chaotic week I have checked in to the "big house" room 4101.
I was having trouble eating and drinking without pain and I vomited blood a couple of times. So today they did an endoscopy and determined the problem is my esophagus is oozing blood--a side effect of the chemo.
So I'm in for the weekend and I'll have a diet of clear liquids along with a Nexium IV. Who knew they could do that? Already I have been able to swallow liquids without pain so I expect the gullet to heal quickly. The good news is there is no esophageal damage causing the bleeding.
I cancelled my trip to Italy today before all this happened. I was using a lot of energy fretting about it and I need this energy to work on my recovery. Janet and Robbie were magnanimous about it which helps.
I learn bits and pieces about my treatment plan every day. I guess it is going through revisions constantly as the doctors talk to other transplant centers. Today I heard that there is a plan for a second round of chemo 8 weeks after the first. It is frustrating to feel like I am not on top of things as I think I usually am. Perhaps getting Italy out of my head will make room for more treatment info. And hopefully seeing docs regularly will net more information too.

So I'm putting my money on the Revlimid and getting ready to paddle like crazy.

A boring post

Clinic day today. I had a restless night with heart dancing. I guess that's part of the chemo and other drugs I have. I can sit up and bear down to stop it, but it kept starting again last night. Very distracting. Gives me a better understanding of why it rattles my mother so much. I've never had it last so long.

WBC .3, Platelets 5, Hemoglobin 9.8
Counts are going down pretty fast. I got platelets today but still a pretty short day at the clinic. Besides that I slept most of the time. I came home and slept some more. Sara and I hooked up the Caspofungin, simple. She is a pro.

Cousin Jason came over and helped cook dinner and Walt is here to spend the night. Sara went off for a night with her husband.

Mom and Dad are still at the lake with Mari and her husband and sister Lori. Having a great time. This is a good thing.

Seems like there should be more news or humor or something but I'm flat out of originality. I'm taking Ativan to keep from getting nauseated and plenty of other meds as well.

The current schedule is clinic every other day. It's nice to have a day off in between. Not that I am accomplishing a whole lot, but it's nice to not have to get up every morning and rush to shower and eat and get down there. Thanks home health care for the IV Caspo.

From your boring patient.
Cathi

Some relatively good news

I have a day off from the clinic today. I will be getting the anti-fungal drug Caspofungin daily via IV, but home health care is going to set me up with the tools to do it at home. So I'll be free to move around and do things. These last five sedentary days have taken a toll. The caspo is to protect my lungs since they are prone to pneumonia when the counts drop. So far only the platelets have dropped significantly.

The good news is that the chloromas tested positive for 5q-. This is the enemy we know. I started taking Revlimid last week as soon as I had the diagnosis so we will continue that. Together with the chemo we hope to knock it out quickly. 8 weeks.

An odd note is that I met with Dr. McGuirk who is normally ultra optimistic and he had a long face. "This sucks," he said. He had just returned from a long vacation and the first thing up was my boob leukemia. I think his head was not quite in the game yet either. We are still positive with the marrow being 100% donor. Whether a booster will be possible at the end of this treatment will depend on the amount of graft vs. host still present. Right now there is still quite a lot.

My cousin Gail returned to Denver yesterday but not before scoring all 3 Austin Powers movies so I'll get all up to date with the Fembots and go around saying stupid things like "yeah baby." Cousin Sara will be here the next few days. Friend Sara brought dinner last night and neighbor Jenn brought fresh roasting ears from her parents' place. All kind things.

All much appreciated.
Today I want to run some errands, set up the sewing center, and perhaps begin clearing things off the dining room table. It has become a clearing house for items on their way someplace else. And it is a BIG table so lotsa stuff.

Conor sent some new pics of the babies so I will post a couple of those when I get them on the right computer.

Friends are sending much appreciated jokes. And I am thinking about what to do to get my mojo running again.

~Cathi

Monday, Final day of chemo

The chemo has been going smoothly. I'm actually gaining a little weight so that's a pretty good indicator that the stomach has stayed settled. I'm aiming to eat 70-90 grams of protein every day and if I slip in a little snack like an ice cream bar, that ups the calorie count considerably.

Plus I have been laying around a lot. Four hours at the clinic to get the chemo, then not a lot of activity at home. I seem to rev up around 5 or 6 o'clock in the evening and go tidying. I walk the halls of the clinic, though they are VERY busy at times. And I've walked the aisles of a couple of stores just to get some steps in.

I expect to see Dr. McGuirk today and get results of the outstanding tests. All the cultures that they have run following the two fevers I've had came back negative. So that leaves the biopsy for which I'm holding my breath.

This all came up kind of suddenly. I do regular self exams of my breasts. But one day in the shower I noticed a very large mass in my right breast. I often get cysts and I'd been drinking a lot of coffee so I assumed that's what it was and I didn't say anything for a week or so. Then I told the nurse I needed a mammogram to look at this weird lump and she said oh, it's probably graft v. host and just have the doctor look at it next week. The doctor said that doesn't feel like graft v. host and ordered a biopsy. This was in the middle of all the 1 year workup tests and I didn't say anything because I didn't want to worry folks, and because nobody at the clinic was particularly worried.

I went in for the biopsy and the radiologist (very pointed head) would not do it because my platelets were only 67. He insisted I had to have an infusion of platelets before he would do a biopsy, pointing out that we weren't in a rush here. So we scheduled another day to go to the clinic and get platelets, then go downstairs and get the biopsy. Surprise, the platelets were 73 and the blood bank wouldn't even send platelets for a count that high. Three hours with needles for nothing.

So I go down for the biopsy and Dr. Pointed Head comes in and blows smoke up my skirt about having platelets on standby if I need them. I'm laying on the table with no IV. I KNOW the blood bank wouldn't send them over, and even if they did by the time the nurse put in an IV and hooked up platelets, simple pressure would have stopped any bleeding. Bite me.

So he proceeds with the biopsy, all the while telling me how good he is at doing it and calling me ma'am. I said "I'm Cathi and I'm fine." He finished and he said "Now that wasn't bad was it?" I replied "That's what I should say to you, you're the one who didn't want to do it." When he came back in to do the second breast he was slightly more solicitous but he is a poster boy for doctors with a poor bedside manner who become radiologists.

Everyone thought, including Dr. Pointed Head, that the biopsy was to determine whether the lumps were graft vs. host or cysts. Nobody was expecting them to be leukemia. The second lump turned up in between the biopsy order and the appointment. It's not as large, but still good sized. Just overnight.

So these are chloromas. Colonies of leukemia cells in tissue rather than blood. The treatment is basically the same. Kill the leukemia. The chemo we are using has a 35% success rate. As always, I might as well be in the 35%. There are some other options, but this looks like the best one.

Dr. Abhyankar gave me a little pep talk about how positive I am and how no matter what happened, I've stayed positive through a long course of treatment. So just keep the positive attitude and we'll get through this as well.

He is careful to say that they don't have a lot of experience with this; that none of the bone marrow centers do. I can tell when one of the doctors or nurse practitioners sees me after they've been chatting and they come up with ideas. They are always more upbeat, sometimes even excited.

Of course today I expect to see Dr. McGuirk and he is always excited so I'm looking forward to that.
~Cathi

Early start to Chemo Day 3

This morning I woke up with a high fever about 4am and after calling the doctor, Gail and Mark and I loaded up and went to the hospital. Blood cultures, antibiotics, fluids and sleep. We went from there straight to the clinic and got the regular chemo.

Still no results of anything. Not from the biopsy, not from the other little tests they've been running.

This morning as I left the hospital, the day shift was getting started and the nurses were all so happy to see me (in the bittersweet way.) They said I looked good, and even sick I probably do look better than when they last saw me. We talked about my new grandbaby and their new dogs. It was just really positive. "If anyone can do it you can." "Just a bump in the road for you."

This afternoon I went back to the hospital to get the take home pack disconnected and saw a different bunch of nurses and they were very positive. It was good to let all that wash over me. We had a laugh about boob leukemia.

And the best part is if I have any more fevers, take Tylenol and go back to sleep. I don't have to call. Long as the fever goes down I'm good. They reckon the fever is just from the chemo and nothing sinister.

Still eating and drinking. I am a little weak but I get bursts of energy through the day and get a few things done. Conor went home today to spend time with his babies that he hasn't seen for about 10 days while Annie has been visiting her parents. Having him here was a shot in the arm. Mark is just awesome to have around. Both boys waited on me as much as I would let them. Mark will be here through tomorrow.
~Cathi

Chemo - Day 2

No biopsy results yet. I saw Dr. Ganguly today at the clinic and he was very upbeat. He said it will take 7 to 10 days for the counts to bottom out, then 4 to 5 weeks for them to come back up. When they come back up we will do another PET scan to make sure there is no more chloroma. I like the sound of that.

He described the chloromas he as seen as small, describing a very small circle with his finger and thumb. That's me, always different. My dad told me from a young age to "be an individual." I guess it's in my blood (pun intended.)

My kidneys showed high uric acid so I got another drug for that. That is one of the things they will be watching closely. This morning they drew blood in different color tubes for the special tests of my liver and kidneys. I'm pretty familiar with what each colored top on the vials for blood means so now I have added a new blue to my knowledge base.

Conor is here and took me to the clinic today. We watched the British Open, even during the hour or so it was called for high winds. He did a lot of work, I did a lot of trying to get comfortable. For some reason my butt just hurt. No matter how I adjusted the bed. I did the crossword puzzle and it was handy having Conor there for the sports questions I didn't know. (Sometimes I text him with these questions to solve a puzzle.)

Mark arrived this evening. Cousin Gail arrived this morning. Mari and Mom and Gail went to work on the house and it is now thoroughly sanitized and ready for neutropenic living. Which is the plan from now on. No fresh food--it all has to be cooked. No raw nuts or pickles or tofu or anything fermented. Lots of protein.

Then there is the "use only this bathroom" and nobody else can use this bathroom. Sanitize hands all the time and wash them in between.

But I will be at home and I can sew and I have a few projects sitting here waiting for my needle.

I have been able to stave off the nausea with Ativan so far. I can feel the chemo brain fog drifting in. I keep saying I don't have my fight on, but Conor says I do, and Mark says I do. They say you're asking what's the next thing and you're doing it. That's how you do these things. That's fighting. So maybe it's just that I still have moments of tears and fears that are rattling me.

I reckon that's normal. Got tougher odds, got oddball cancer, and got a tired trooper.
~Cathi

Outpatient Chemo

Things have changed and morphed by the hour over the last few days so I'll just get the current situation ticked off and another time I will give the low down on how we got here.

The first good news is I'm getting treatment as an outpatient. It took an extra day to get things organized but it started today. I spend several hours at the clinic, then leave with a take home pouch of chemo and a special chemo-spill kit. We civilians are not allowed to disconnect the pump because it's chemo, but my nurse of the day, Mary, volunteered to come to the house an unhook it so I don't have to wear it all night long. (And so I can shower and change clothes.)

The next good news is the PET scan shows no cancer except the lumps in each breast.

More good news is the insurance company approved the chemo drug clofarabine. They were balking and said it would take days and Dr Abhyankar didn't want to wait days and KU decided they would cover it if the insurance company would not. They put their money where their mouth is. However after Dr. A sent journal articles citing its efficacy, they agreed to cover it.

The PICC line went in smoothly--I was not looking forward to that. The last time I had one inserted it was a very uncomfortable, hour long slog with a lot of bleeding. Today's was just a few minutes.

This type of recurrence is rare. Not only has the KU team not seen it much, neither has any transplant center in the country. So they are all taking and sharing information to plan next steps.

The hope is that the chemo and the Revlimid will work together to shrink the tumors. And of course that my liver will not choke and the bone marrow will remain 100% donor or close.

Tomorrow we hope to have results of the biopsy showing 5q-.

I am bit horrified to be in this elite group. The fight in me has not taken hold. My sister Mari is here with me now. Conor and Mark are coming. My cousins Gail and Sara are coming and my sister Janice. So I have a lot of coverage up front here.

I'm guessing this will take about 2-3 months to work out. I want to stay at home, but of course I cannot be alone so I will be looking for companions. Mom & Dad are ready and willing to have me move back into their house but I have my place fixed up and comfortable and I would really like to be able to stay at home.

Ok. Check tomorrow. The plan changes at least twice a day. yesterday it changed hourly.

I'm thinking Fembots for a visual. Robot breasts firing bullets full of cancer cells. Anybody else remember this from Austin Powers?
~Cathi

Some not good news

I have leukemia in my breasts. Big lumps appeared overnight and are apparently escaped leukemia cells that have now colonized. The medical term is "chloroma." Dr. Abhyankar hasn't seen one in 10 years.

So I go in the hospital tomorrow and start chemo. A 5 day regimen so hopefully I will get out Sunday or Monday. I started taking Revlimid again today. We think these two things will combine to kill it and seal the entry.

However, we are still gathering information. Tomorrow I will have another biopsy to determine if 5q- is present. We hope it is. We hope this is renegade cells still swirling around my body. Today I had a full body CT Scan that showed no other chloromas, but tomorrow I will have a PET scan to make sure.

The lumps or even the breasts could be removed surgically, but that is not a solution. The problem would still exist. You have to cut off the cells as they circulate.

PICC line, nausea, hair loss (no leg shaving!) neutropenic diet (no salad,) isolation, and all the other stuff that goes with chemo. This is another full blown round. I cancelled my hair cut and dentist appts.

The good news is that the bone marrow graft appears strong and 100% donor. We will see how things hold up through the chemo but at this point we're not talking about another transplant.

I don't quite have my head in the game. My head is saying "I thought we were finished paddling this canoe." But I am sure that I will figure out a way to consciously fight this.

It is again a game of action and reaction. Check the research. Check with other transplant centers. Check where we've been.

I guess I should think about some inspiring things to take with me tomorrow and have on the wall of the hospital room. Perhaps some pictures of Harrison and Ella. Perhaps that one big card that flushes when you open it.
~Cathi

Tiles of Hope and 1 yr workup

Today I hit the hospital and the clinic for my "1 year workup." The tests went as expected, but things happened that were thought provoking.

I started down at the hospital for a Pulmonary Function Test and that went well. The technician said my numbers were higher than last time. Hopefully this means that the GVHD is abating perhaps a teensy bit. The tech also mentioned that she had seen some patients whose lungs were really compromised by GVHD. Now, how lucky am I? My lung function is over 100% of normal. I was frustrated after the last one because it was only 115% or so instead of the pre-transplant 150%. I had a horrible time with my lungs after I got leukemia and I often asked if people with these kinds of lung problems ever recovered completely.

But I am one of the lucky ones today. I remember well not being able to suck in a proper breath when I was in intensive care. I was so irritated! I thought "I know how to breathe. Several different kinds of breath. And I can't do any of them." Today I do not ever have to gasp for breath.

Then I headed for the clinic for the blood work and bone marrow biopsy. I stepped off the elevator on the 3rd floor and there is a board with "Tiles of Hope" on it. I looked it over carefully and sure enough, there was my tile. Tiles of Hope was a program held at the clinic in December after I had the news that the graft was slipping and before Christmas. Patients and clinic staff had the opportunity to paint a ceramic tile with the design of their choice. I was worried I would not be able to go to Chicago for Christmas; the BMT team was pulling out all the stops to make sure I would. On the one hand I appreciated their efforts, but this fella at the conference table in my head was shouting "It's because this is your last hurrah. You're not going anywhere else after this."

So I got him shut up for a bit, and boldly painted a globe with a distorted map on it. An oversized Italy and Florida. Big black dots for Captiva Island, Chicago, Florence and Rome. I wrote "the world at my feet" and added some ruby slippers at the bottom. Mom gave me a pink Life is Good hat with a globe on it and when she handed it to me to cover my bald head, she said "Cathi, you have the world at your feet." I remember nurse Maurya sitting with me while I painted. As we walked back upstairs, I confided my fear that this was my last trip and she looked at me with complete sincerity and said "oh no. This is not your last trip. You're going to be going to Italy and to Florida." I believed her. So here is a pic of the entire board and of my little tile.

I marvelled this afternoon at the difference in me between when I painted that tile and when I spotted it today. I have been to Chicago three times! And I have a trip to Italy planned in October. I am one of the lucky ones.

Abby did the bone marrow biopsy and answered all my questions. The results of the liver biopsy showed nothing more sinister than GVHD and too much iron. I will find out later next steps for the liver. She counseled me to eat more protein, not because the number is low, but because I'm still having trouble with my feet swelling. So I reckon I will add a protein shake to the daily regimen. My hemoglobin was 11.8 today, something of a relief to me. It has dropped the last couple of times and that makes me nervous. My platelets were still 73 which Abby was happy about. She laughed and commented that other hospital departments went nuts when platelets were that low but bone marrow doesn't worry til they are much lower!

The liver counts have improved a little since they increased the dose of the medicine I'm taking for it. Other counts are beginning to hover around normal. I am very lucky.

Nurse Jenny in the biopsy room said I might not see her for a year now! I can't imagine going a whole year without a bone marrow biopsy. But Jenny and I will keep in touch via Facebook. Nurse Lauren drew my blood today and announced she is getting married in 10 days. Lauren was on the night staff at the hospital when I first got sick. She took care of me as I was getting very sick, running high fevers, and needing all kinds of care all night long. I ran into her often throughout my recovery but it seemed like every time I asked about a beau, she had just had her heart broken. I quit asking--I just hated to bring it up. So this was great news to hear, though I'm sure my son, Mark, will feel just a twinge. He thought Lauren was "hot."

So this day has given me many reasons to be grateful. I have pains and I am still weak, but I am getting better every day. I have lovely curly hair that I am enjoying. They tell me the curl won't last forever--just a couple of years. I went to a couple of social engagements over the long weekend and enjoyed myself, but I lasted for the duration of the parties. Today is Walt's birthday and I am so grateful that I have such a generous brother. That my entire family is so generous. It was very soothing when I was very ill, to know that my family was all pulling together for me.

And did I mention that my hairless days are over? I must shave my legs every day to wear shorts!
~Cathi