Will the Y chromosome cause that?

Happy Halloween.

I tripped out to the mall this morning and walked a whole 12 minutes. My joints ached this time unlike the last time when my legs got shaky, like muscle overuse. "Time" here refers to events. The "last time" being that interim period post hospital and pre transplant when I had a little bit of freedom. and "this time" being post transplant when I have a little less freedom than last time. (Watching all the political ads is affecting my lexicon.)

When we arrived home, Dad was blowing leaves. Smiling and having a great time. He made us wait at the end of the driveway while he blew them out of the garage. Mom remarked on how happy he was handling that blower. And I said "Just like the guy at the lake who comes down and runs the power washer all weekend." Janice warned "It's the Y chromosome. It could happen to you, Cathi!"

That's fright enough!

My end of the see-saw goes up

Visited the clinic today and the counts are up. As if they were never down in fact. They are recovered and then increased. I may have mentioned before that the Hg is now in the range where I have been operating for the last 11-12 years so I'm feeling energetic and maybe a little ADD.

My reaction today is one of relief more than exuberance. I am pleased to have guest privileges back and mall walking privileges. Still no eating out or movies. But what I really want to do is have a really long browse through the tile samples at Lowe's or Home Depot to choose some for my house. But that isn't authorized either.

Here are the rules for guests. Not sick (I know...a no-brainer) and not been sick for 3 days. And not exposed to any sick person for 3 days. No children under 12 (not my own but that's moot.) So if your kids are sick, that renders you inelgible darnit. Be clean. Like showered with clean clothes if possible. I'm plotting a post for myself in a front window away from the door to watch the Trick or Treaters tomorrow night.

I have not had any blood products or chemistry through IV for several weeks now. I still visit the clinic twice a week to have blood drawn. But as soon as it goes to once a week, I think the PICC line will come out.

I'm not going to list any current projects...see note about ADD above.

We are on Day 36 of the 100 days. 1/3 of the way through.

Cathi

Word Associations

Meltdown
Three Mile Island
three lime island
key lime pie
lemon meringue pie
lemon tree
"very pretty and the lemon flower is sweet. but the fruit of the poor lemon is impossible to eat"

Post some jokes, folks. That was fun.

Cathi

The bear market affects everything!

A downturn today! Alas! No going out, no guests!

White cell count was way down. Ganguly was the doctor today and he delivered the news and instructions in his clipped way of speaking.

Good Mooooorning! How ARE you? yes?
your counts are down.
I am not worried. this is normal. do not worry.
When did you start taking Bactrim?
ok. do not take it tonight. do not take it again.
I am going to draw more blood, sorry. You have a line? oh well then no problem.
We will see if you can take a different antibiotic.
Magnesium is down. How many are you taking?
ok. take 2 at lunch too. so 2,2,2.
I am also going to check and see how much of your blood is you and how much is your brother. that will take a while, you will find out on Monday.
come back on Thursday. we will check your blood without the Bactrim.

I asked my questions.
"I'd like to get back in my house with my dogs in December. Is that possible?"
"yes, I think so. We have a little drop now but that will go back up. should be fine by then."
He didn't bat an eye about the dogs.

I ask "how long will I take Cellcept?" and he explains the taper process.
"40 days. then taper. Right now? 2,2. 40 days, 2, 1 for 2 weeks then 1,1, and so on"

And I said "well I'm not going to ask the last one"
He says, "the one about eating out? no you can't do that yet. no going out. no guests"

I reckon there must be some way of reading my mind when he reads my blood.

So I will close with this. I received a card today. with a flowery angel and script flowing on the front that read "Every germ has a little angel watching over it"
Inside in the same flowery script: "saying Die, Germ, Die"

Watch out for bears.

Just letting everyone know that I am still here and still feeling good. I finished plowing through the insurance paperwork that is in my hands yesterday. A real slog, but something that was too discouraging to do til now.

Last night I had my first guest. Peggy joined Janice and I for dinner. Janice is a great cook and she tries new recipes often. We critique them and decide whether it's repeatable or not and what might make it better. However, last night was comfort food, meatloaf and baked potatoes. and salad of course!

I have one more gift that I am trying to locate the giver. Lavender body lotion and pillow spray. Anybody remember? So far I have discovered two gifts that I thanked the wrong person for! sigh. This is what happens when you lose your memory. I'm grateful that didn't seem to happen this time, though feel free to remind me that it has if it did. (if you can make sense of that sentence....)

Today we are taking another field trip to see "St. Norman's Cathedral", the new house that Sally and Norman are building near Paola. It is, apparently, very large; and set up on a high hill. Thus the local's name for it. (Janet, I do not believe it has a steeple to designate it Norman or Saxon as in England, but I will report back.)

Everytime we flush the PICC line, I think about getting it out. Now that the subject has been introduced, I am anxious to get it out of there. It will mean more sticks, but those will get fewer and further in between. There are two little valves hanging out of my right arm just above the elbow. If the dressing is not just right, they crunch against each other in the crook of my elbow, usually pinching some skin in between. Plus I can't easily wear long sleeve shirts, at least for clinic days. Something that would be comfortable these days.

Today is my niece, Margaret's, wedding in Lexington, KY. I am hoping that someone in attendance sends me phone pics so I can see what is going on. Conor and Annie are counting down the days to the due date...22 to go. whoop whoop.

Later, Cathi
p.s. and I identified the "Soup Nazi" post on the blog! LOL

Privileges

I now have mall walking privileges and guest privileges. The mall walking feels like a hall pass. I am looking forward to that as much as seeing friends. I have lost some strength during the confinement of the last 30 days.

Guests! I can have guests. One or two at a time. Very clean, no touching and sit yea so far apart. Don't come if you have a drippy nose or anything else, or if you have been exposed to such in the last 3 days. (I know...how can you live your life this time of year without encountering someone with a cold.) Anyway, I'm sure that plenty of people will qualify and I'm anxious to see people again.

I saw Dr. Abhyankar today and he was just full of good news and very friendly. Occasionally the question still comes up, "Could I have done anything to prevent this?" And the answer is always, "probably not, don't torture yourself." It just happens.

I have enough hair on my head now that it looks dark and Mom & Janice are encouraging me to go without a hat and wear big earrings. Which of course means someone will have to dig them out of my house. I've no idea where my earrings are at this point. The yoga bricks have never shown up so I am using rectangular kleenex boxes instead. So far I have not crushed one. Which is more an indication that I can't stretch down even that far, than that I have good balance. I did find my MP3 player this week which has been missing since before I got sick.

The problem with going hatless is that my head gets cold. I do not understand why the bald head is so popular among men these days....it's freezing!

Clinic visits appear to be down to twice a week. I don't return until Monday. The counts are stable. We are back to flushing the PICC line daily here at home...always an exciting event!

And I no longer keep peanut butter in the fridge, Diane. Because Conor made fun of me for it.

Cathi

Salad Days

Hello,

Nothing like a good crunchy salad to lift one's spirits. Janice went on a special trip to the store to get the freshest vegetables and fixed a deluxe salad that was on all 4 plates at the table Monday night. No longer a forlorn dish of canned fruit in front of Cathi to offset the crispy greens at the other 3 places.

It was outstanding. Every bit as good as the beef broth and applesauce in the hospital after I hadn't eaten for 10 days or so. I never thought beef broth could taste as good as it did then. I don't remember a lot from that time but I do remember that!

I am spending these 2 days off taking charge of my life. Things like why the trash service thinks I owe them a $10 late fee and why the state of Kansas insists my second quarter sales tax return has not been filed. (I pulled it up on their web site and then had to fax that to the KDOR. Is that crazy or what?) Getting the pictures off my camera (and helping mom with hers) and, sigh, going through the insurance paperwork. I would rather deal with the KS dept of rev than the insurance company. ugh. But that's life and I've got one so I'm not complaining too loudly.

Mom and Dad are busy preparing to go to Kentucky for niece, Margaret's, wedding. I can't believe I'm not going to be there, but I'm sending an awesome gift. and Margaret has promised to text photos from the event. Janice and I are preparing to run rampant while they are gone.

Conor and Annie are preparing for the advent of baby Harrison around Nov 16th. The car seat has been installed. They seem to have classes several times a week for hospital tours, breast feeding and baby burping. I wonder how I knew what to do without all those classes? ha! I grew up with 6 younger siblings....I knew exactly what to do when Conor was born. Nevertheless it's good to have up to date information and I recall women in my own pre-baby clases who hadn't any idea how to care for an infant. I admit to having a leg up.

So from a satisfied consumer of fresh vegetables, I'll sign off and go have some celery with peanut butter.

Cathi

The significance of a flu shot

Hello.
Today I got a flu shot. This is significant because I could not get one until the blood counts reached certain sorta healthy levels. (All things being relative in this post transplant world.)

My white count more than doubled. My hemoglobin is in the range I was accustomed to operating before I got sick. My platelets are high enough to use real toothpaste. The ANC (Absolute Neutrophil Count, which is some ratio of the others) is 800. So I can have salad.

I was so excited about having a salad I forgot to ask about guests. I will ask that when I return to the clinic, which is not until.......Thursday! A change of routine here.

I am getting rid of one prescription (not the expensive one) and am going to try an oral magnesium. If I can tolerate that (magnesium as in Phillips Milk of.....) then the central line will come out in 2-3 weeks. (central line goes from arm to just above my heart in a vein which just makes life simpler for cancer patients...aside from being useful for drugs I don't have to get stuck every day when they draw blood.)

I am excited. I am still bound by the isolation and companion for 100 days, but I appear to be at the point where the restrictions will begin to relax.

Thanks everyone again and again for your support, prayers and good wishes. And wish me luck as I go off to try to best Janice at Scrabble again.
Cathi

The weekend off

No salad for me yet. But I do have the weekend off from clinic visits. The ANC was just 500 yesterday and the white cell count dropped a bit. So it's good to have the weekend off.

And y'know, that's about all that's new in my life. I could tell you how far I am in my book, or list the words from it that I've written down to look up later. But y'all have better things to do.

So I might sneak a cookie from the community package. I always have my own package of cookies, and sometimes the one M&D are eating from looks better. But I won't be mall walking yet.

Cathi

Dreaming of salad

Day 22. Day 2 of high counts. So if day 3 has high counts I hope they term that engraftment. I am feeling pretty good these days. Sleeping better and doing more stuff. not very much more, but a little more. My bones don't ache very much and aside from a little tingling here and there, no other side effects.

I'm hoping the counts are high tomorrow and I shall indulge in a huge salad tomorrow night for dinner. At the clinic on the treatment floor (where I go for magnesium every day) a cart of sack lunches comes around at noonish. I get the lunch but ironically, the sandwich has lettuce on it, a no-no for my diet. So I give the sandwich to my companion of the day and I eat the chips and Oreo cookies. (Today I have sent mom out for a 3 Musketeers candy bar...and it is not nov 5th yet.)

Yesterday I wore my new t-shirt to the clinic (see the picture) and got some big laughs out of the staff. There are a lot more patients at the clinic these days. When I first started going I rarely saw another bald person, now there are dozens. I reckon this is the surge of folks who were keeping the hospital so full near the end of my stay and now we're all visiting the clinic. So while I have to wear a mask everywhere except in a treatment room, it's nice to have company.

Three jack-o-lanterns appeared on the back deck yesterday along with a big white mum for background. Mom lit them last night and permitted me to take photos from inside. One fellow is lopsided and Sally carved a startled face on him. It's a total smile out there!

I'm reading more but nothing too deep. Current book is "Notes from a small island" by Bill Bryson. While I have never lived in England, many of his observations are like those I have recited from my visits.

Yesterday I saw Dr. Abhyankar and he spent a few minutes discussing politics. The subject of "Field dressing a moose" came up and he said he had never heard of that before this election. Then he asked me how to do it. His final remark was something like "so as long as you have the back at the top and you stick at the bottom it's good." Who am I to argue with a hero? Though I have to say, it's a pretty good simplification of the process.

Cathi

Tues, 10.14 - Grafting is very individualized

I have a day off from the clinic. yippee! It's gray outside, Mom is running errands, Janice and I are still in our pajamas at 11 am.

Yesterday I talked to Nurse Practitioner Mary about how long it's taking to graft and revealed that I am worried. She said "we're not worried so you stop worrying." Grafting is "very individualized" and can take 30-45 days. Well my dad always told me "Be an individual" when I wanted to do what the other girls were doing...so I reckon that advice is still ingrained deep in my psyche.


The effects of the chemo are wearing off. I have a little bit of hair on my head including that pesky corkscrew gray hair right on top. and a forest on my legs. (I would count hairless legs among the pluses of chemotherapy.) So far the hair is all brown...no red from that Y chromosome.

I feel more energetic which doesn't necessarily mean my body can carry that out. Sunday I unrolled the yoga mat, then walked around it all afternoon, never putting a foot or hand on it. I'm counting the walking around it as exercise.

I'm still getting magnesium every time I visit the clinic. It got very low last week and I had a day where my breathing was heavy. Not difficult or short, just heavy. So I am a believer in magnesium. The body needs it to graft. The word of the hour.


Cousin Nancy sent a good visualization from her private car whisking her from the NYC airport to the office in White Plains. "a private car escorting Walt's cells to work in your bone marrow" I like it.

I have been a little blue for a few days. The combination of worrying about the graft and being so dependent on folks to do things for me. So I got the directive to stop worrying, then came home and issued a list to Janice and Mom of things I want. This feels very bold and demanding but y'know? They were so happy to hear it and those things are part of mom's errand list today. It's odd watching my head process all this stuff, but gratifying to figure it out.

Signing off today.

Fri, 10.10 - No Weekend Off :(

Hi everyone, a posting from Conor. I know you missed me. :)

The ANC (Absolute Neutrophil Count) did not stay up so Mom will be visiting the clinic this weekend. Per the subject, no weeekend off. That's the disappointment. However - it's not the hospital. So as Mom would say, 'we're grateful for that.' Also, the WBCs and hemoglobin continue down which is good.

Her bones are hurting now. If you can imagine (I could not quite when she said it), it's in-between the joints as well as the joints. Talk about an odd feeling and a new meaning to the phrase 'I hurt all over.' But this is a good sign so we'll take it.

Gist of all this is there are true signs of engraftment but it's not done yet. There's a long road to go in the near-term as well as long-term, and we're all marching to that one day at a time. After all, it is day 15 and engraftment is supposed to happen 12-15 days. So hopefully the neutrophil count will stabilize at a high enough level that they'll consider her 'grafted.' :)

Mom was ecstatic that Oreo cookies tasted good today at the clinic...evidence that her taste buds are recovering. She also visited Starbucks on the way home for a Caramel Macchiato. Those haven't tasted good for a long time!

Janice's husband, Chuck, is staying at Mom's house to look after the dogs. This includes walking them. It's especially good for the senior citizen, Hayward, as he seems to be particularly lonely.

Mom's looking for some new visualization so if you have recommendations on engraftment and the appropriate neutrophil count, send them on!

Hope everyone has a great weekend!

Good News from the Lab

After a blue day yesterday, and very long day at the clinic, today's blood work showed real progress. If the levels remain this good for 2 more days, I can skip a day at the clinic. woo hoo, maybe I'll get the weekend off!

Nurse Mary was on duty today and she explains things so thoroughly to me that I feel like I understand exactly what is going on in my body. When some things are low, others should be high. All according to plan and presenting more signs of engraftment.

My joints still ache but not as much, with one exception. The tailbone. Ever think about that joint? only when it hurts!

I figure at this rate my diet restrictions will be lifted before I can taste those things I miss. Today's craving is for apples. Fresh, cool, crispy apples. And the outdoors. All in good time.

Signing off before I get maudlin.
Cathi

30 days til chocolate tastes good again

I like that count much better than Day 12, etc. Nothing really tastes good right now and chocolate doesn't even feel good in my mouth. How weird is that? Don't you think they should list that as a side effect "may lose taste for chocolate"?

News today is "My joints hurt"--that's the bone marrow working.
"Ridges inside my mouth"--mild graft vs. host
Platelets are up. They are the first to go up in a mini-transplant. I'm just tickled they never dropped below the sponge on a stick level.

and more magnesium. A body requires magnesium to keep the organs in sync with each other. And it must be delivered slowly so that the heart doesn't react to it. It comes in pill form but think "milk of magnesia" and that is why I don't take the pills.

The sender of the gifts owned up...thank you Diane. She told me they came with chocolate that made two trips between KC and Houston in August. The chocolate did not make it through the travel.

I feel sharper today which doesn't seem to translate to more energetic. It's probably a good day to have a Scrabble challenge.

But first, another protein shake.

Seriously drooping

Hello on Sunday, Day 11.
I am very tired and am not doing much besides lying in bed or the recliner watching the tube. (which is ever so painful at the moment since the Chiefs seem to be having an off day.)

I went to the hospital outpatient yesterday and today. Just returned home today after leaving here at 7:30. Things move slower at the hospital on the weekends, and I needed magnesium, lots of it. I don't feel like a new woman. I feel extremely apathetic. Dr. Aljitawi said to get up and walk around the house 3x a day and that is sufficient exercise. That is about as much as I feel like doing. This is because the action is all on the inside these days.

The good news is that on the inside engraftment is in progress. The counts are bobbing all over the place, but today the platelets were up and they are the first to rise. Of course they could go down and back up a couple of times before they stay up.

The mouth sores have cleared up. Plenty of rinsing with saline I guess.
Walt flew home today. He is feeling fully recovered and back to himself. No headaches, no joint aches and no feeling loopy.

My appetite is just about gone and food is not so tasty. But I keep on eating, especially protein bars. Hot tea is the best tasting thing around right now. Janice snuck into World Market and fetched me some P&G Tips, so I have GOOD hot tea to drink. And speaking of Janice, I beat her twice at Scrabble last night. So while I might not remember, I can still spell.

100 days of isolation is 100 days of no guests. I am hopeful that will be eased before the 100 days is up, but meanwhile I'm restricted to email and waving through windows.

Footnote: I have sent many thank yous for gifts whose source I could identify. But there are some I just don't remember and didn't get written down at the time. Some blue pajamas left on the kitchen counter at my house? a block of notepaper with black polkadots on the side and tied up in a big pink bow? Would the senders please own up? And if you sent me something and didn't hear from me, let me know that too. I'd like to have the opportunity to say thanks personally.

And that's the wrapup today.
Cathi

Day 9 - something's happening

Today is Day 9. The count begins the day after the transplant. Transplant day was ZERO. The days before were -4, -5, etc. The days after have positive numbers...all the way to 100.

Mom took me to the clinic today and I saw Ganguly. He was excited about what's happening. The white cell count was up .1 and the platelets continue to drop. Hemoglobin still holding at 8.4. But I have a "tender" spot in my mouth and a tender spot in my abdomen when he presses. So I will visit the bone marrow outpatient unit at the hospital this weekend so I can see a doctor every day.

One of the side effects of something...chemo, grafting, something is mouth sores. I rinse several times a day with saline water to prevent this, but nevertheless this time I appear to be more vulnerable and have the beginnings of a sore in my mouth. The first time around I vowed I could tolerate all side effects this one and I never got them. Perhaps I swore to the wrong deity this time?

The white cell count going up, however slightly, is an indicator that Walt's cells are starting to work. The tenderness in my abdomen is a symptom of graft vs. host. (Remember we want a little bit of this fighting to ensure a better long term graft) So Ganguly was excited.

Since about 7:30 last night I have been in bed or the clinic. I am extremely tired and even though I slept pretty good last night I have slept a lot this afternoon.

"Graft" means Walt's cells are grafting to my body and working. It could be compared to grafting a beautiful, weak rose bush to a stronger rose root. You want the rose to start drawing sustenance from the grafted root. We want the bone marrow to start operating with Walt's healthy stem cells.

I've no idea what to expect. and fortunately I don't care much right now. I just go where I'm told and then back to bed. This might be the part I don't remember.

Cathi

The restrictions get tighter

Sure Happy It's Thursday. sigh.


The blood work today showed a very low ANC (absolute neutrophils) which means no more fresh food. No salad, no fresh vegetables, not even the celery sticks I had packed for lunch. They have been my vehicle of choice for eating 15 grams of protein via peanut butter.


It's temporary.

The good news is that I saw nurse practitioner Mary Burkhardt and she was a little more sympathetic to my hot flashes complaint. She gave me a prescription for something that might help them. Hot damn! In addition another friend suggested a small fan on the nightstand while I'm sleeping and that did make a difference last night. Pointed right at my head. (sigh of pleasure)


What is all this isolation and restriction about? The white blood cell count is .9. Normal is 4.5 - 11. So I am without defense against a bug of any sort. If I catch something it's going to be a big deal. and having such a low count means I've no defense against exposure either.


What's it like? I have my own bathroom that only I use. Someone cleans and disinfects it every other day. My bedding is laundered every other day. I am not permitted to clean or cook or launder. I have to sit around and let others do it (does the introduction of the Y chromosome make this easier?) All food has to be prepared here. There is a laundry list of things I cannot eat that runs along the lines of fermented or pickled. All food has to be cooked thoroughly...think well done steak and soggy asparagus.


Drink a gallon of water a day to keep everything working properly. Even my chair is disinfected regularly. I only wear my clothes once (I know I'm repeating myself.) I can eat chips and crackers but only if nobody else has had their hand in the bag. So some items in the pantry have rubberbands and CATHI ONLY labels.


The inside of the fridge has to be sanitized regularly, and all groceries sanitized before they go in there. To date that has been washing all fresh stuff thoroughly before it goes in the fridge. Now, I guess all bets are off. I can't eat it anyway. So mostly I eat vegetables and fruit from a can.


Nevertheless I look forward to first salad after this period. I remember clearly how tasty it was the last time.


So far no reactions to the transplant. and so far no indicators of graft either. All in good time. This is normal.


Cathi

Ganguly makes me laugh

Clinic today with Janice, ho-hum.


Here is a recap of the conversation with Ganguly.


G: any nausea or vomiting?
C: nope
G: diarhea?
C: nope
G: any rash or fever?
C: nope
G: any swelling?
C: nope
G: sleeping well?
C: nope
pause
C: the hot flashes wake me up
G: perhaps when your brother's cells take over you will not have them.

giggle


So things are going well. Clinic every day for the next 7 days. Things are starting to happen. WBC is 1, platelets are 108k, hg is beginning to drop at 8.4. Tomorrow will likely be a longer day for the magnesium.


I am still in the strictest isolation. Shower every day. Don't wear the same thing twice (like I get anything dirty sitting in a chair all day) No children not your own. No guests. Wear the mask even in the hall at the clinic. This is not the bottom yet. And I confess today I don't feel hunky dory. No telling how I will feel at the 'bottom'


The plan calls for 100 days of 24/7 surveillance. Never be alone. Never be more than 30 minutes from the hospital. No guests, no sitting outside on the deck. No eating food that anyone brings in. This is all to prevent exposure to or infection from any germs. The only time I get a hug is when the folks here in the house have showered and put on clean clothes. Another forbidden is shaving my legs. fortunately there is no hair on my legs these days....which begs the question of why they even list this?


When the platelets drop to a certain point, then no teeth brushing. They give me this odd green sponge on the end of a stick and something like mouthwash (nothing so abrasive as toothpaste) to deal with my teeth. They call this oral hygiene. It's more like camping. My dentist told me how important it is to keep the mouth clean as teeth harbor germs. I explained that I can't floss, and at a certain point I can't even brush. He made an ugly face.


But I don't make the rules, I just follow 'em. I'm amusing myself by taking photos through the windows. It's entertaining, I don't know how good the photos will be. My attention span for reading is about a paragraph. I am willing to be bored by the television, and I might get talked into a game of scrabble...or battleship.

Cathi