Home and healthy

I went to Chicago. My whole family was there thanks to Conor and Mark getting Mark out of OKC before they closed the airport Thursday morning. I played with Harrison. And I came home healthy. Very remarkable considering I have almost no white blood cells.


Mark got up there Wednesday evening and the kids scoured the house again getting ready for me. I so appreciate all the work and special food so I could be comfortable and safe.


I wish I could have stayed longer because I was just getting the hang of Harrison's routine when I had to leave. I spent most of the day Saturday at Loyola hospital getting refueled. They transfuse at a much slower rate than KU. I persuaded the nurses to speed it up a little but not enough to get much HB time. Conor and I got home in time to bathe him, which is very fun.


We made keepsake plates with penguins made from everyone's thumbprint. Conor and Mark didn't laugh at me for once and were very good natured about painting their thumbs. Harrison wasn't so sure. But we got a print from him.


The clinic visit Monday was uneventful. I saw Dr. Aljitawi but don't have any news or even speculation. We have to see what's going on in the bone marrow and the biopsy is scheduled for Thursday. After that I expect news to trickle in, starting with no news is good news.



Meanwhile, I'm still at home. My birthday is tomorrow and I'm hoping friends drop by. If you're in town, stop by. I feel good and energetic. I loaded Christmas pictures up to Facebook, and I will put them out on Snapfish or something so more folks can see them. But here's the prize.



~Cathi

Dang the flu anyway!

Well I missed my planned flight to Chicago today. But not because of anything here, because the poor kids in Chi-town have the flu. We're hoping it's shortlived and I can go up on Thursday. Meanwhile Walt took me to the clinic bright and early this morning where I got platelets. And the counts from the lab were not so hot. Even after a neupogen shot yesterday my white cells were at 1.7. Not much resistance in that.

So I have done the things today in preparation for Christmas that I had decided didn't have to be done. There's always one more thing to do to get ready I think. I always have one more thought for a stocking stuffer, or one more recipe I haven't made this year. I plan to bake again tomorrow, but today I picked up a couple of those stocking stuffer ideas. I wear a mask in the store, use lots of sanitizer, and try to resist picking up too many things in the process of making my decision.

Last night my old Venturing Crew paid a visit. Venturing is a boy scout program for boys and girls age 14-21. Our crew had a trip planned to Packard High Adventure Base near Salida, CO when I got sick. Fortunately they were able to find women to accompany them so the trip went off nearly as planned. Three of the four kids who took the trip visited me, returned my borrowed gear, and delivered a wonderful photo book. Jerrod created the book and his sense of humor and writing skills are excellent. They had a poster with them on the trip "We miss you Cathi and wish you were here." The book includes a couple of shots with the poster. There is a pic at the top of Mt. Shavano, a 14er, and I'm reasonably certain they would have missed me for that leg of the trip even if I wasn't in the hospital!

To cap it off, they wrote a song about the adventure for the last night campfire that they sang for me last night. It's pretty special to have 3 teens in your living room singing. It was a wonderful holiday visit.

Clearly my counts are not recovering after being off the Revlimid. Perhaps the Revlimid just hastened what was already happening. I am just focusing on the here and now. I still feel energetic and upbeat. I have a bone marrow biopsy scheduled for Monday the 28th to see what is really going on. Hopefully a booster will still be possible. Hopefully the 5qs will not have taken over. The sinus infection seems to be completely cleared up. I have a new humidifier on my furnace that is keeping the house less dry. Plenty of Ocean spray. (That would be from the pharmacy aisle, not the fruit juice aisle.)

I have more time to finish the laundry and pack and get ready. I would like to be playing with Harrison, but soon.....
~Cathi

Chicago, Chicago. Oh that toddlin' town....

It's been a week of ups and downs. The graft v. host is driving me nuts. Itching, nothing tastes good, mouth tender. The blood work showed rising liver counts so I'm on an additional drug to deal with that.

The sinus infection is not going away nicely. I'm getting daily IV antibiotics at the clinic. I assume they haven't switched me to oral antibiotics because my counts are bobbling all over the place. I've had several transfusions this week. Platelets were 22 one day, 38 the next and 8 the day after that. This is down from well over 100 for weeks.

The only real news I've had is that they are going to make sure I get to Chicago for Christmas. The NP said "we will just transfuse you and throw you on the plane." KU will set something up with a BMT program in Chicago for a pre-flight refuel on the return trip. So I'm wrapping and packing. A person has to have platelets of 50 to fly.

We will do a bone marrow biopsy after Christmas to see what's going on. I expect the counts to be back up by then. Revlimid has a long half life and its effect on my counts can last quite a while after I stop taking it. The team is very worried about losing the graft again, but always in the past when I had GVH the donor cells were working. I just cannot reconcile all the symptoms I have with losing the graft. So I remain optimistic. Most of the time.

I've been a little teary worrying about not being able to go to Chicago, and about the transplant failing again. So the key is to stay rested and stay busy. There is lots to do here at Christmas time.

I made Rocky Road candy today and I felt pretty smug about not having to hide it from Mark. I used to make it, then try to fan the chocolate smell out of the house, then hide it somewhere because if he knew I made it, he would be busy looking for it. And half the pan would be gone in the morning! However, I underestimated how much Walt and Caroline could eat in mere minutes when I offered it to them during a shopping break! I will be making more tomorrow.

I stayed at Mom's for a couple of days and Walt stayed here with me for a couple of days. I ran a fever every day with the sinus infection and that just took the vinegar out of me so I needed a companion. Walt has fixed a lot of little things in the house and is here again working on a humidifier. Hopefully that will help prevent more sinus problems.

I still have lots of energy, except when the temp goes up, so I'm enjoying baking and cooking. Wrapping and nesting. What we do when it's cold outside.
~Cathi

Revlimid and why I did not get a booster

The goal of a bone marrow transplant is for the donor cells to graft to the host environment and the host cells then disappear for lack of use. (Think of grafting a beautiful rose with a weak root onto a stronger root stock.) Gauging the progress of the transplant is some art, some science based on watching the body's reaction.

While the donor cells are working on the graft, Doctors are looking for symptoms of graft vs. host disease (gvhd.) These symptoms commonly include rash, nausea, diarrhea, facial flushing, loss of appetite. As long as one or more of these symptoms is present they know the donor cells are busy.

Another indicator is the blood counts, specifically hemoglobin, white cells and platelets. If those counts are rising while gvhd symptoms exist, then we can be pretty sure the donor cells are active.

Results of bone marrow biopsies over time show exactly what is happening in the marrow, but this is invasive and is generally called for when there are no other signs to rely on.

The results of my last bone marrow biopsy showed 66% donor/34% host. And 95% of the host cells had 5q-. So I started taking Revlimid to kill the 5q- and preparing for a booster. Two separate courses of action. By the time of that biopsy, most of the gvhd symptoms had disappeared, indicating the donor cells were slowing down. But the blood counts were still high and rising which was a good sign. So the booster was to "rearm" the donor cells so they would go back to work. The Revlimid is to kill the 5q- cells so I don't get Leukemia again.

After taking the Revlimid for a week, the gvhd symptoms reappeared in the form of a rash. The rash first showed up on the day the booster was scheduled. There was a lot of debate about whether it was actually gvhd, but the doctors felt they had time to see if it developed further before they proceeded with the booster. Having gvhd symptoms again indicates the donor cells are back at work.

And it has developed into full blown, uncomfortable gvhd. Now we still have the booster option in our arsenal of backup ammunition.

Revlimid has an impressive track record at curing 5q-. It has some side effects that include blood counts dropping. Stopping the Revlimid for a few days usually sees the blood counts return to normal. My counts are rising daily so I will probably start taking the Revlimid again by the end of this week. The only sure way to check the results of Revlimid is with a biopsy and as long as things on the outside are looking good, we won't do a biopsy for a few weeks.

My theory is that 5q- is what powered my cells and made it impossible for Walt's cells to graft. Killing the 5q- weakens my cells and his cells can get busy. My hope is that we can maintain this balance of weakening my cells and strengthening his til a full and effective graft can occur.

~Cathi

Neutropenic again

Neutropenia means my white cell count is too low to fend off any germs and I must follow careful guidelines to avoid them. The no raw food diet, the don't go anywhere precaution, the guests check germs at the door.

The low counts are likely the result of the new drug, Revlimid. The prescription advisory says that 80% of patients have to stop it during the 1st 4 weeks because of low blood counts. Which makes me part of the normal majority, whatever normal is. I think that it won't last long because the counts this morning were much higher than last night.

Last night I went to the hospital because I had a fever, most likely from another sinus infection. Of course they drew blood and my hemoglobin was 5.5 so they would not let me leave the hospital without receiving a unit of blood. The good news is the hemoglobin this morning was 8.4 which is a much bigger jump than the 1 point or so expected from a unit of blood. So the factory is still working, it just can't keep up with the consumer demands here at Christmas time. I also got a neupogen shot this morning to boost the white count.

So my plan is to finish my shopping on line and do some baking here at home. I needed a reason to stay home and hit the paperwork. As if the forecast of 18 degrees high today isn't enough to keep a person home!
~Cathi

Lucky tractor socks

Tuesday, December 8th, yesterday, was Booster Day. I had a clinic appointment at 10:00 and then off to the hospital. I showered and dressed carefully in all my lucky items: tractor (John Deere) socks, "Life is Good" hat, and my Cabbage Key t-shirt. Walt and Dad went to the apherisis unit very early and Walt was hooked up to donate the booster cells.

Robbie and Charlene and I loaded up and rolled in to the clinic. I persuaded the nurse at the clinic to put in an IV so I only had to be stuck once, then I visited with Dr. Abhankar. I reported a rash on my chest and blotches on various other parts of me. Dr. A looked the spots over and asked me a lot of questions about the bright red flush in my cheeks that seem to just happen to me occasionally. Finally he sent me to the hospital to the dermatology suite to have them look at the spots.

The resident I claim as my dermatologist looked at the rash spots. Then she called in her supervisor who looked them over. Everyone seemed to agree they looked a lot like Graft vs. Host Disease, but nobody was certain a biopsy would be conclusive. So the dermatologist called Dr. Abhyankar and reported. Then Dr. Abhyankar called back and told me that they (Drs. A and M) hoped the rash is GVH and so they decided to not give me the booster. "But go ahead to unit 42." The purpose of the booster was to boost Walt's cells into waging war again with mine and inciting GVH so the graft will get stronger and more permanent.

So we three trooped up to the 4th floor and finally found our way to my room on unit 41. Robbie and Charlene went off to find some lunch and the doctors continued thinking out loud. Finally my nurse came in and said "you are the easiest patient I've ever had." She removed the IV line and gave me a printout of my labs and shooed us out of the hospital.

Seemed like a very big day on which virtually nothing happened. And another surprise was an email in the afternoon scheduling my next clinic appointment for a week later! A longer leash is always enjoyed. Walt's cells have been stored in the freezer for possible future needs.

Today the rash is plenty itchy. It's still inconsistent, moving from my neck to my back to my abdomen and it doesn't look very red. I expect it will be more itchy tomorrow.

Robbie left for Vermont today but Charlene is still here. She cooked a fabulous gumbo for supper tonight and there is plenty left over for another meal. We had bar-b-q last night. Visited the Boulevard brewery Monday, had a fine dinner Monday night with other friends. I have enjoyed myself and maintained my energy through it all. Feeling energetic is WONDERFUL.

I am washing the lucky tractor socks so I can wear them again tomorrow. And every day after that they are clean in my drawer. They don't itch, but they seem to cause it.....

~Cathi

Don't wiggle the toes.

I have neuropathy in my feet. They tingle. Sometimes they tingle sharply and sometimes just barely. They only tingle from my toes to just past the ball of my foot most of the time.

The more I stand or walk, the more they tingle. Most of the time it's tolerable. Particularly if I am engrossed in something like the Barbie doll exhibit at the Toy & Miniature Museum.

But when I get in bed at night, the tops of my toes tingle. It feels a little bit like cold so I wiggle them inside my socks to warm them up. This is instinct or reflex, I don't know which: but it is NOT the right thing to do. Wiggling makes them tingle more. I lay a quilt over my feet whose heaviness forces the blankets down to the tops of my toes. And then I repeat a mantra, "don't wiggle." I forget sometimes and wiggle, then the voice in my head says "oh yeah, that doesn't work." doh!

I wish for the voices in my head to be more active than observant but that's probably another reflex thing.

Charlene is here from Oklahome City. I drove to the airport yesterday by myself. Remembered where it was and arrived a full hour early because I confused the times. Bought a Starbucks and read the paper. Her daughter, Hilary met us and we went to the Barbie exhibit and did some serious shopping. That would be lots of walking and browsing but not much buying. Today Charlene and I will drive to Baker University to hear Hilary's choral concert.

Robbie arrived today and Carla collected her. We will all meet up sometime tomorrow.

Tuesday is the booster. Walt goes in early to donate and I get the cells fresh. I don't have a time yet so I'm packing the scrabble game and a book and going along.

I am still in my house and still enjoying it. I have lots of energy and as long as the tingling is tolerable, I just keep on going. I went to Nebraska Furniture Mart this week and purchased a computer on behalf of a group organized by Sally. We are making a good Christmas for a young girl with chronic myeloid leukemia. I am tickled to be able to walk the aisles of NFM without tiring, and to be a part of making something good for someone else.

~Cathi

There's going to be a bump in the road....

I went to the boy scout court of honor last night with Brant. I had a great time. With adults, it was like I was at the meeting last week--we just picked up where we left off. With the kids I had to ask their names. They came up to me and said "Hi Mrs. Maynard. Remember me?" Weeellll, maybe.... Seems like they should stay short and scrawny til I give permission for them to grow.

When Brant dropped me off he had this to say which put things into perspective for me. He had been reading the blog and all the good news and had the thought "It really doesn't happen this way, just sailing on up. There's going to be a bump in the road."

So here we are at the bump in the road. The new drug arrived via FedEx today. Revlimid. Walt received his call from the transplant coordinator arranging the donation for next Tuesday. I don't know if I get the boost Tuesday or if they will freeze it until some designated time. A designated time would be after so many weeks of Revlimid, or when counts equal something or a bone marrow biopsy shows something.

I'm having fun living in my house. There are still bags and boxes of unidentified stuff around here and I've dug through one or two. Lots of laundry but I decided 2 loads a day is plenty. Yesterday I found my treasured recipes. The ones torn out of magazines and written on scraps of paper by friends. There have been lots of searches for them. "They are in sheet protectors in a file folder and they were laying on the island in the kitchen" I told everyone. The unsuccessful searchers insisted that nothing was thrown away! So yesterday I picked up a random pile of folders in the basement (where my business was) and there was the recipe folder, where all folders belong. Now if I can just translate that logic to a quilt top and the sewing machine....

There are clothes in my closet that I don't recognize. This is either a testament to chemo brain or my lack of interest in fashion. The clothes I have seem to be 80% brown. Brown is a fine color on me, and perhaps a good base color to build around, but 80% seems like overkill in a wardrobe.

I went to the grocery store by myself for the first time this afternoon. I found everything I wanted which would be counted a successful trip. But it was more tiring than I expected.

Tonight, Chinese in front of the television with Peggy.

~Cathi