Monday, November 29, 2010

Thanksgiving commotion

Here I am, too long about posting again. I guess I just overlooked it in the commotion of Thanksgiving. Thanksgiving was fun, even though there were just 3 of us, Mom and Dad and me. I stayed at their house the night before and went to work cooking fairly in the morning. I made the stuffing. parsnip/carrot/leek gratin and a new recipe, brussels sprouts succotash. Mari and I also made a superb apple pie the day before which didn't have any takers at Mom's house as she had made 2 pumpkin pies that were delicious. Of course we had turkey and mashed potatoes and gravy. A nice satisfying meal. and I so enjoyed cooking.

Being neutropenic and all, I don't think that technically I'm supposed to cook like that but it was nice to not worry for a day. I can't eat out. I'm not supposed to eat food not cooked in my kitchen (but I fudge this one occasionally.) And I can't go to the store. Not for groceries, not for Christmas presents. I've been leaning on people to go pick up things for me. I find them in the ads or on line then send someone to buy them.

Meanwhile I've had Janice and Mari and Walt and Peggy staying with me. Looks like I will stay at Mom's most of this coming week. I still have days of being sore and wobbly, the occasional womit, and low blood sugar from time to time. This is why I need someone with me--Mostly the blood sugar. It goes with the prednizone. Likewise the Caspo goes with prednizone.

My counts have gone down, but today was better news. The white count was 1.3. It was down under 1, so this is good. Platelets and red blood cells were in the "don't transfuse" range, which is way below normal. So this is good. I think the Revlimid is working. Because of this and because my joints hurt. My clinic visits have bumped up to 3 per week for now. We'll see how this goes.
~Cathi

Saturday, November 20, 2010

Slight change on the course

Visited the clinic yesterday and saw Dr. Aljitawi. We were just talking over one another--it was a scramble. I gained 2#, all by eating. No TPN. I only needed 4 units of potassium (compared to 7 on Tuesday.) Thanks to everyone who sent notes about potassium rich foods. Bananas don't even fall at the top of the list! Baked potatoes do, offering 1031 mg of potassium.

My counts were down. I got blood and platelets and potassium and magnesium. My ANC is .5; my white count was 1.7. ANC is the part of the white cell that actually fights germs. It needs to be over 1 for me to be able to fully participate in food.

I brought up Revlimid and he said "no, we're not ready." But we do think that the 1.4% of your blood that is you is 5q- and that is why your counts are not recovering. We argued a bit and I trumped with "my counts are already in the tank so why not go ahead with the Revlimid before things get any worse." Ok, he says, you've convinced me. Take the Revlimid. Take one less Prednizone--that could be keeping them down too.

He was very happy with the weight gain and kept saying "That is you. you have done that. I am very proud of you." So I just need to follow instructions and continue.

Robbie, your comment a couple of blogs ago about my spirit and my friends is the kind of thing I can wrap up and keep in my pocket for weeks. No matter what the docs say, what my friends say is most important. Barry's simple "proceed" was fun. I am what I am and I love it. Because it brings all these wonderful people into my life. I was thinking a while back about how sometime in the first couple of weeks I asked to have someone spend the nights with me at the hospital and they just did! What an enormous thing to ask for and have people just do it. My kids, my sibs, even my parents took shift or two. How lucky am I?

Other minor things going on include shaving my legs, nurturing the hair growth on my head. Choosing my food carefully. Last night I womited, I think a piece of asparagus triggered the gag reflex right during the meal. I actually came back to the table and ate a biscuit and enjoyed a cobbler for dessert. So it wasn't really nausea, just weakened muscles.

I've been picking at Christmas shopping by pointing at something in the Sunday paper ads and dispatching someone to pick it up. Janice was shopping for new dishes and I insisted she get something she really loves. She's taking my leftover silverware but it's no prize. Sharlyne insisted I get that. She said "I can't believe you have all these plates and bowls and not enough flatware to set a table." If you have ever been scolded by Sharlyne, she has a way of making you feel like a really smart person except for this one stupid thing. So you want to fix the one stupid thing ASAP! which I did.

Today is HB's birthday party and I am web cammed in so I'm going to be on line a bunch I reckon. The kids' house looks ever so festive.
~Cathi

Wednesday, November 17, 2010

more Dang

I went to the clinic yesterday and the counts, except for hemoglobin were all down. I am really neutropenic now. No salad or fresh fruit or leftovers. Not that I'm big on salad or fresh fruit right now with the wobbly stomach, but there are some very fine leftovers in that fridge.

And a new twist, not major, from living without the TPN. The TPN had a lot of vitamins in it and now I'm low on Potassium and Magnesium. I have to take Potassium through the IV because it irritates the stomach. Same for Magnesium. They told me I could take Slo-Mag but be careful because it irritates the stomach sometimes. No thank you. Keeping the stomach calm is number one.

Potassium takes a loooooong time to drip. So 4 hours at the clinic yesterday getting platelets and Potassium, then I brought a backpack home with a few more units. Fortunately potassium does not usually go all night so I can go to sleep unhooked. But this is what it will be till we sort something out. Like my stomach gets well enough to take the pills, or I figure out how many bananas it takes to maintain a healthy potassium level. This is more than appropriate since the prednizone creates a very hairy face and while I don't look like a chimp at all, I feel like one sometimes. And I'm not very crazy about bananas.

Janice is with me this week and she is just full of interesting trivia. She is a schoolteacher on a break so is seeing doctors and getting lab work and picking up scrips. Her husband is on a long term assignment in Connecticut right now.

One time when I was in the hospital and my potassium was low, it seemed like no matter how many units the pharmacist ordered it was never enough. One evening during shift change I overheard the night nurse in the hall. "Give her to me tonight and I'll just drip Potassium all night long and we'll see if that gets it up in the normal range." She had a good idea and it worked.

So limited guests right now, no restaurant food, no fresh, uncooked food. Serious attention to sanitizing. But the blog and the Christmas shopping goes on.
~Cathi

Friday, November 12, 2010

Three YIPPEES and a Dang!

Today is a day to celebrate.

I went to the clinic and I saw Dr Aljitawi. I had my little food journal all prepared and the calories for the last 11 days all tallied up. So he ordered away the TPN. YIPPEE! TPN is the nutrition bag that I carry around in a 10# or more backpack most of the time. From about 7pm til noon the next day. It carried me when I couldn't eat, or couldn't keep anything down. Dr Al thinks my appetite will increase now. Which will be nice. TPN was also hard on my liver so we're glad to get that stopped.

So that's one yippee.

Then he reduced the prednisone by 25% which is a lot. Hopefully I will notice this difference in the ability to build strength and stamina. He also asked about constriction in my body and I have quite a lot of constriction in my hands, which has got worse and now a bit better. So I should not vomit either.

That's two yippees.

And the final yippee was unexpected--the chimerism results show my blood is 98.6% Walt!! We expect this to continue up to 100%. Voila! another successful remission.

Three yippees.

Then one dang!
I got platelets today; blood and platelets Tuesday. I'm still on the Tues/Fri schedule and see a doctor every 2 weeks, a nurse practitioner the week in between. Tuesday the counts had dropped enough to make me neutropenic again. Dang! So that cancelled a few plans including a Rosary for a scout friend's wife. It wasn't high enough to eat out yet today so we had a fine celebration dinner right here at the house. (with just a little bit of wine. ;)

I've had a steady stream of company and companions which has been pleasant. Mom and Dad have been filling in the blanks here and there. Meanwhile I am getting birthday presents ready for Harrison who will turn 2 on the 24th. I've decided not to try going up there for the party or Thanksgiving since I'm just not sure what life will be like til I've tried this method for a few days. I still have to get Caspofungin via IV every day. It comes in a baby bottle like container that we just attach to my arm. There is a balloon inside the bottle filled with the Caspo. And the balloon, being rubberish, creates enough pressure to push the Caspo out of the bottle and into my arm. Very clever these Chinese.

Janice is coming up to stay a week next week. Mari is coming the week after that. Mom & Dad and I are having Thanksgiving together. Perhaps with another friend. I will cook a turkey breast and some favorite recipes and perhaps spring a fine new dessert on them. I've watched a lot of FoodTV since I got sick this time.

And that's the news! Sort of Dang, yippee, yippee, yippee. Not quite Chitty Chitty Bang Bang but we're getting there.
~Cathi

Friday, November 5, 2010

Pep talk at the clinic

I've had a completely unexpected day, starting with getting home from the clinic at 11 am! I didn't need platelets or anything else. They cancelled the biopsy and did a "peripheral blood chimerism" meaning they drew the blood from my arm and will determine how much is Walt and how much is me from that.

McGuirk stepped in after I was already on the procedure table for the biopsy and cancelled it. Then came by to see me and gave me a nice pep talk. He started with a lot of questions about how I feel and eating and all that. And he said "you're in this spot because of your spirit. You have a wonderful spirit." (This practically rendered me speechless.)

We talked about grandkids and my nephew Mason earning his Eagle and calling me and he said "these are the things that make me feel I am doing God's work. These are the important things in life--buying costumes for your grandkids and answering the phone call from your nephew. Thanks for trusting us to take care of you. He also asked when I was going to visit Chicago. That will be a while, but I know it's going to happen.

It was a humbling encounter. He is still amazed that the chloromas melted away. I don't think about it too much; I just keep on truckin' That's my approach and I'm sticking with it. Just proceed.

Mom got sick this week so she is at home recovering (minor gut issue) so I've scrambled around to fill in the blanks. Peggy stayed last night and we watched our recorded "Biggest Loser" from Tuesday. My out of town friends, Mark & Deb Paton are in town today and will stay tonight. Then they head to Manhattan for the showdown against Texas tomorrow night. Mark cooks a fabulous breakfast and nearly always cooks it when we are together, so he's cooking in the morning. And we are going out to eat tonight. Which is why I'm blogging instead of napping.

Let's see Sharlyne is coming in the morning and staying into next week. Lori and I worked on Ella's quilt and put together each of the blocks. I need to lay them out and then we will sew them together with all the borders and stuff. We are both seasoned quilters and the work went very smoothly with me cutting and directing and Lori stitching and ironing.

I've had some time alone so I've worked in my kitchen and tidied it the way I like it. Same with the bedroom. Having my house look moderately organized is soothing to me.

I guess the final news for today is that Dr. McGuirk reduced my appointments from 3 a week to 2 a week. So I don't go back til Tuesday. I think this means I'm going to be taking the full dose of TPN for an extra week or so but we'll see. I must get the food journal updated to doctor style speed reading and perhaps one of them will make the call on Tuesday.

I wish I weren't still taking some of these "help me not vomit" drugs because most of them are anti-anxiety and I can't drive. But I'm sure feeling better and better.
~Cathi

Wednesday, November 3, 2010

The Very Latest!

and really, not much has changed. The clinic today only took 3 hours and Lori is now my babysitter. She is a quilter so tomorrow we will tag team the Ella quilt and hopefully get that pieced. I got platelets again today.


I am still happily eating along, though I did lose the Mexican food from Monday night. I knew that was a risk but I dared. I'm definitely still relying on the steroids for womit control. However the blood sugar has settled down quite a bit. We started measuring it more often so we could see what it's doing. Of course I have been eating regular for a couple of weeks now so it might be adjusting to the new intake.


My appetite is coming back and I'm actually beginning to wish for certain things to eat. Dinner things. Non-sweet things. Totally unlike the last few weeks. Soon I will be gaining weight and I'll have to lay down on the bed to zip my jeans.


I got a pedicure monday--did I mention that? A wonderful invention, pedicures. When I was young, very young, I sat on the floor at my Granny's feet and gave her pedicures. Of course I had no knowledge of the name of what I was doing but that was it. Soaked her feet, trimmed her ingrown toenails, tidied up and polished. I can't reach my feet properly to work on my toes so I think a storefront you can walk into and get this service for a little bit of cash is just wonderful. (I have made progress on reaching my feet because I can put my socks on by myself.)


And that's probably enough prattle. I'm still scheduled for a bone marrow biopsy on Friday. I'm still scheduled to see a doctor on Monday. I won't have results of the biopsy for a few days. We are most interested in the chimerism--the degree of donor and host cells in there.


Finally these are the grandkids' Halloween costumes in here. Ella was a strawberry and Harrison was DJ Lance Rock (look him up.) He was very cute because he totally gets the dress up and act like someone else gig. His 2nd birthday is in just a couple of weeks!

~Cathi

Monday, November 1, 2010

Blood Sugar Seesaw

After several weeks of blood sugar readings consistently around 100 they have suddenly started bouncing all over. Highs, and lows. Neither one of which is real comfortable for me. I reckon this must be because I've started eating enough to matter. So I'm now recording just about everything. Everything I eat, everything I drink, every blood sugar reading, all with times and other info. Today they did cut back the prednizone another 10 mg so hopefully that will help, at least with the high bs readings.

Friday I have a bone marrow biopsy to see where we are on this continuum. Today my WBC and my Hg were both "up" and healthy, but I still needed platelets. The platelets are just not being produced by the bone marrow. A dropping platelet count was the first sign of relapse before the whole boob leukemia thing. I'll just have to see what the biopsy shows.

Meanwhile Mom is staying this week and my big goal is to get Ella's quilt assembled but the days get pretty crowded with clinic visits and social calls. The courier for blood products at the clinic changed and sometimes I have to wait 4 hours for platelets to be delivered, before they even pour them into me. It's very frustrating. The blood sugar swings affect my momentum.

Gail asked why the vomiting stopped and I'm not sure but here's what we threw at it ultimately. Prednizone (steroids) which would reduce inflammation, and control GVHD; Marinol....more commonly known in its native format of weed; klonipin, another anti-anxiety drug used to control nausea. Meanwhile I worked very hard to avoid hitting that gag reflex, like don't even bend over the sink to brush my teeth.

Tonight is actually the first time I've even felt close to womiting for about 2 weeks. And tonight I went to Tequila Harry's for taco night with M&D and two nephews, Eric and Carson. Carson and his twin brother Blake turned 18 Saturday (Trish's kids.) Blake had to work unexpectedly so missed our dinner. Anyway I ate half a taco; half a very big taco.

I have spent a few afternoons on my own and I confess to enjoying them very much. But the blood sugar seesaw is going to ensure I don't sleep alone for a while. The TPN (nourishment) is also a factor. It is a real production to get set up, hooked up and going. It seems to stop arbitrarily sometimes, different people get different results getting it going. It's just a nuisance.

However today the clinic told me to keep a food diary and if I'm consuming a consistent 800 calories a day they will look at reducing the TPN. And then doing away with it. That should also help with the blood sugar. So it's just going to be a while before I am anything more than a patient. Sigh.

~Cathi