Gemzar III, Day 6

So as the week progresses, I keep hoping for a return of taste so that I can look forward to eating real food. I think I sense a little more with my morning OJ, so I am optimistic that the week off will bring the opportunity to enjoy some solid grub. I have spent a week fantasizing about places I want to eat! Needless to say, if this doesn't happen, I will be really disappointed.

Otherwise, I continue to feel quite well, but weak. No energy at all. Of course, what would I do with energy? The weather is way too cold to spend time outside and there isn't really much to do anyway. There are two BB games on campus again today and if I am up to it, we will likely go to part of one at least. I doubt if I will be able to try a hot dog, but who knows what will happen when the popcorn aroma hits me? There I am, dreaming again.

Questions? Go to "The Source"

Readers, Deb is a long, long, time dear friend--and we share a birthday. She is a cancer survivor and a research nut--there is very little about cancer and cancer treatment she does not know--and if she doesn't, she will find it. If you have questions, she would be glad to respond. And, she may bring you some guardian angels like the ones that watch over my bed and sofa.

Her suggestions have been very helpful to me over these weeks and I will certainly try this latest tip--now! And she is right, she knows I slight my fluids. I have never liked to drink (water that is) and just don't have the "carry around the water bottle" habit. I know how important it is, just have to keep trying to do better. Thanks, Deb.

Gemzar III, Day 4

I feel quite well actually, clear headed, on my feet, able to work on some things. The Pred is likely responsible for that, though I usually need a quick nap early in the morning. On rising, I am quite weak, hit it quickly with a couple OJs, and an Ensure or Boost as a chaser. That allows me to take the Pred and get the day started. A bit later, I try to eat something solid--now that is still hard. I can get down soft scrambled eggs and crisp bacon as long as I have a glass of something in case it gets caught up in the slime. Yeh, I still am fighting the slimes.

No one, especially me, is surprised that nothing has any taste other than a non-descript brown kind of flavor, including plain water. But I am having trouble finding anyone who has experienced the slimes. It feels like my saliva has thickened, as my tongue and palate are always coated with what feels like petroleum jelly. If you chew anything (and especially something spongy) more than three times, it turns into this ball of slime that CANNOT be swallowed! I have tried using my salt/soda/warm water rinse several times as well as brushing my tongue and palate-- that seems to help some, but it quickly reverts to slime. Gentle Readers, any clues would be welcome.

I will certainly continue to use liquid diets as a way to try to get adequate calories--all agree this is desirable and that I can live without a lot of solids. We have the blender out and some fresh fruit-- strawberries actually almost taste like strawberries to me. With some canned fruit as well and one of the liquid enhancers--or ice cream--I am able to add some calories throughout the day.

We had a little snow last night, again the neighbor blew it off our drive-- how great to have friends like that. The snow has made everything clean again, nice to look at out my patio doors and hope that this brings us one snow closer to spring.

Plan detour

So this was to be Gemzar III with Zeloda week-- but because of my mouthsores, Dr. Muler (who is on vacation and unattainable this week--can you imagine how badly an Oncologist must need a vacation?) does not want me back on Zeloda until he sees me. That is not until a week from Friday. So I just had the Gemzar infusion, despite having a slightly low platelet count. My white count was good, near normal. Have been off Zeloda for over a week now and it will be three before I restart. Now the good thing about this is that my full week of recuperation, next week, will be one that is distant from Zeloda. That is good news, Barrs and Adams!

My MMW has done a good job on the mouth sores, most are gone for now but I am told that they will come and go as a side effect of the drugs. I was doing OK on liquids but this morning I threw caution to the wind and had bacon and two scrambled eggs. Went alright but it becomes more difficult as the day wears on. It is reassuring to know that I have the fortified liquids to fall back on and that they seem to restore some energy. I have been off Pred for two days now, don't need it with the boost from the pre-infusion drugs. Matter of fact, I had my Monday night problems in getting to sleep last night-- probably 11:30 instead of the ritualistic 9 p.m.!

WEEKEND HEADLINES

Highlights:

The New Lenox Moehle's visit Defiance - Beth and and whole tribe come for a weekend visit, fun was had by all as there was always babysitting available

Kaylin Jane enters into the church of Jesus Christ - a family baptism ceremony honors the youngest of the clan, age 3 months

Grammie has abundant baby time - Great Gram, Emily, has Kaylin the majority of the time

Kaylin, the wonder child - a baby who doesn't like to sleep, alert, prefers to sit up all the time, enjoys her swing in front of TV cartoons, rarely makes a fuss, and smiles at the merest suggestion

Maestro finally shows for a concert - managed to go to the Sunday at the Center performance by the Toledo Trio - magnificent, and the hall looked great, very proud.

Concert Dedication - The Small family, sponsors of the performance, did a very nice - and touching - dedication to Maestro

Lowlights:

Maestro was not the life of the party - the end of the second week of Gemzar came with some mouth sores, and the inability to get any solids down-- a liquid diet is the present situation, tough to get enough calories that way, more weight loss is certain

Suck it up

You know that old thing about "when the going gets tough," well I am trying. And a couple of my gentle readers have suggested the "magic mouthwash" thing and it is on its way. Only the insurance company is not amused. Again, that is Medicare Part D, which has paid very little to this point compared to Medicare A that gets hit with the $3600 monthly Zoloda tab as well as the infusions. If the MMW doesn't do the job, I will likely be held back from the Zoloda a week until my mouth heals.

So my Doc says that the best hope to control my bowel problems is to stay on the Senna and Colace everyday, increasing the dose if it isn't sufficient. I will do that, but anticipate some abdominal cramping as that has been a problem as well. Guess I will go ahead and double the dosage on Monday with the third infusion to try to head off the block I have had the past two weeks.

Boy, I never thought I would have trouble eating. Absolutely nothing the past couple of days is appealing, quite the opposite, and nothing tastes good or tastes at all for that matter. So Emily keeps bringing things home from the grocery and I keep studying them over and the back stock keeps grows. Gentle readers, not even McD sounds good right now--or that hot dog with ballpark mustard. Can you believe it?

Two weeks of Gemzar

So the second week of Gemzar infusion has been more difficult than I had hoped. Primary problem is coping with the constipation which is incessant, but I also have increased mouth soreness which completely voids any sense of taste. That makes it more difficult to eat. Have to eat to live. Nonetheless, I got out Wednesday to have lunch with two very dear friends and to have a nice long visit. An outing like that tires me rather quickly so it's back home for a deep nap. I seem a bit better this Thursday morning, so perhaps the infusion is waning a little and I will have a couple of better days.

This week was an untested one and I can certainly see why my Docs thought a week on, a week off was a good way to start the Gemzar experience. I wanted to see if the side effects were Gemzar or Zaloda, found out in no certain terms. Next week should be fun. Day by day continues to be my plan. Will get out today and get some fresh air, that always helps.

Periodic update

Sunday was good, felt well enough to go to church the second Sunday in a row, and to the hospital for lunch. Enjoyed a huge piece of beef, billed as Prime Rib, but closer to pot roast. Mashed potatoes, gravy, corn, enjoyed it all. May have over done it as I felt less well the rest of the day. We had Kris over to watch an "instant" movie, something with talking dogs. So I kind of absented myself, spent the time working on one of the most frustrating picture puzzles we have ever attempted. It will be a struggle to finish it by Friday when we need the table for our company.

Monday, back to DRMC for a Gemzar infusion. Didn't really feel well in the morning and less well after the infusion. Spent most of the day down, with general lethargy. Did manage to eat some and spent some more time on the puzzle. Had to go back out to visit with Dr. Bob for what turned out to be a fungal infection in a place I don't want to discuss. Though I am seeing increasing problems from the treatments, I have yet to really have any serious ones that are debilitating. That is good. Everyday I hope for a good one. Need to get on my feet and move, maybe today is the day.

Score Board

Lady Jackets - 81, Franklin - 63; DC men - 99, Franklin - 83; Maestro - 2 McBurgers, McFries, plentiful catsup, 1 Hotdog, ball park mustard and more catsup; Glucose meter - 411 (gasp); MVP - 14 units of insulin.

Pred Report

Well it looks like the Prednisone is working pretty well for me. I have been up and around, went downtown yesterday afternoon (in my little car which hadn't been on the road for a couple of weeks, it is terrible in snow) and had coffee with Vince for an hour. Man, it was good to be out with real pants on and see folks going about their normal lives. I don't really have any appetite, but I can eat when it is time. Put down half a Subway yesterday in good order. Thinking hamburgers already today. I feel a little edgy and am awake a bit more in the evening, but only mildly so. If I could get my bowels regulated, I think I would be in good shape. This is, after all, day six and I am headed for a week of no Zeloda. So Pred is a good thing.

There are two home basketball games on campus today and I think that we will be able to go to a portion of them. One of the new problems is that I have lost some of the padding on my butt--sitting on hard benches is different than it used to be. Just realized that if we go to the game, there are hot dogs! Now I haven't tried one of those yet. Note how I seem drawn to the things that I tried not to eat before. I am certainly less concerned about my fats these days. Bring it on!

Writer's block

Yeh, blocked all right, but in the south end. I haven't really had a chance to evaluate how much the Pred has helped me the last couple days because I have been struggling with the worst case of constipation that I have ever had--by far! I knew this was a developing problem over the weeks and have tried to get out front (well that doesn't sound right either) with the recommended over-the-counter treatments. Too little, too late. This afternoon I finally managed to breach the dike. Or something. Sorry for the distasteful stuff, but you have no idea how important it becomes in my life (Emily's too, as she had to run to the Pharmacy a few times).

A note to those of you who noticed the editing on the last posting: I had some upset folks who were taken back by a negative turn in the last couple of sentences. I am not negative, haven't had a day of depression so far, don't plan on having any. I am in this all the way, will do what ever I have to do to live everyday out to the fullest. What I was trying to express: it is a real challenge to be able to do anything on a daily basis other than care for myself, but we have to look for the opportunities to get out, see friends, walk on campus and drop in on folks, go out to eat on the rare day I am hungry, and stay in contact with all those that have been so important in our lives. I am dedicated to doing that, haven't exactly figured out how to handle all the needed tasks to create the opportunities.

Thanks to all of you who are taking the adventure with me. Your comments and encouragement inspire me. My love to all of you.

Periodic update

So the week progresses much like the previous double chemo weeks. Feeling pretty good the first couple of days, beginning to crash a bit today. So it is a .5 Pred day, we'll see how that goes. The days go so much better if I can eat! When that becomes difficult, it just wears me down even quicker. I continue to have folks who come to visit and that is really nice. Having lost all my usual social contacts as I resigned from all my responsibilities makes a visitor with things to talk about other than the next med a welcome relief.

So, life goes on, one day at a time, good days I hope, looking forward to spring, it would be nice to walk around the yard, search for signs of flowers, rather than look at the snow out the window. Can anyone get it to speed up a little bit?

Prednisone by half

So after a spirited day on Saturday, I split a tablet on Sunday. I am in better control now. It was a good weekend for me. I had a great appetite and felt good. Likely to be a long time until I have a weekend as good. Took advantage of it-- went to church for the first time since Christmas eve. Realized I had never "heard" the choir before, in thirty five years of being in that church. It was a bit surreal. Went to the hospital for lunch (as if I don't see enough of that place) and put down a huge plate of Salisbury Steak, mashed potatoes, and green beans. That was about noon.

Still feeling chipper, we made a trip to Fort Wayne to visit Sammy's (another puzzle for you folks) to restock all our paper products, garbage bags, etc., and picked up some things that we thought I might eat over the next month. Not to miss a golden opportunity, we stopped at Cassa Grille (our very favorite Italian Restaurant ever) where I downed a salad, a loaf of bread with dipping oil, and a great Chicago style pizza (actually I just finished it as Monday lunch). And that was about three o'clock. When you have the opportunity, you take it-- my new life plan.

So today is day one of a month-long plan: had my Gemzar infusion and started a week of Zeloda. Next week will be a new experience with just the Gemzar and without the Zeloda. I am encouraged by my reaction to the Prednisone (didn't take any today and likely won't need it tomorrow, as the pre-infusion drugs are pretty good joy juice), hoping that it will give me a helpful boost late in the week which is the toughest time in the sequence. Peace.

Prednisone

Took a Prednisone Saturday morning on a day when I probably didn't really need it at all and felt a little jittery and had a good breakfast and carried boxes of Madrigal Feast/Dinner Theater stuff out of the basement room so Bob and Randy could haul it away and had a good talk with them afterwards that was very pleasant and went out for dinner at Bobbie E's and ate a large helping of chicken Parmesan and a salad and a biscuit and watched some design shows and had a little trouble going to sleep--gottagonow.

Modified plan

So it was a day spent mostly visiting my Docs. Began with my Oncologist. First a blood draw, which alleviated my concern with looking at old tests--then a wait for some of those results. The scales (haven't really lost a lot of weight yet, about 15 pounds, most of which was excess anyway), a physical exam which revealed no evidence of progress of the disease, and a nice long talk. Based on the evidence that I am tolerating the Chemo quite well, the decision was made to move to the "usual" dosage and increase the Gemzar infusions to three weeks on and one week off. The oral med (Zeloda) will continue to be every other week. So once a month there will be a full week off both drugs. At the end of that week, I will have an appointment with the Oncologist. I find this "leap of faith" covering a month at a time reassuring somehow. I left feeling much better about the plan and what he is trying to do.

Conveniently, that week off coincides with the visit from our "out east" friends, a minor miracle in itself. Looking forward to it.

Then we visited with our family practice man. The purpose of the visit was to evaluate my glucose management. It was decided that was going well, that it simplified the management of my diet which is really regulated by what I can get down. The discussion of loss of appetite led to a consideration of beginning Prednisone. Several people had asked me if I was using this--it has been known to help with appetite and energy, two problems that I have had for a couple of weeks. After a check with the Oncologist, I had a new prescription, a new addition to my med shelf, and a new entry in Emily's drug list--which is threatening to spread to a new page! So I began the Prednisone this morning--stayed tuned.

Periodic update

So here it is Thursday, and I am still waiting for that "week-off-euphoria." At least today I was able to eat a decent breakfast and I have on real pants. And I have felt well enough to have a series of visits, mostly from college friends. Sure nice to have someone to talk to whose life goes beyond keeping track of the meds, injections, and trying to think of something to eat that doesn't repulse.

Yesterday, for what ever the reason, was not that good. I was exhausted all day, took three or four long naps, and never got outside. I think I am over due for a blood test to see what is happening. That is one of the items to be discussed tomorrow with my Oncologist. I am feeling that I don't see him frequently enough (it has been three weeks), that the blood draw before my infusion is inadequate--coming at the end of the week off--and that I don't have a good enough sense of what we are trying to do with my regimen. So unlike the first visit with him, I do have some concerns to address. I would like to see him become a bit more proactive.

Looking forward, the next two "interim weeks" have something to get excited about. The next will include a visit from our daughter's family, including Kaylin. Holds the promise of some "great poppie time." And the following will be extra special. Our life-long friends, the Barrs and Adams, are planning a weekend visit. Haven't seen them for some time. It will be great, regardless of how I am feeling.

Here's a Miracle

So meet Kaylin, our great granddaughter. She's a miracle. OK, so, all babies are miracles! She is a special miracle. Though her conditions of conception were perhaps not ideal, and her single mother's life plan didn't exactly include this just now, she is a bright, alert, active, smiley, happy little tyke who is loved to death by her mother, her grandmother, and her grandfather. Yeh, we like her too. Regardless of what happens to me--or when--Kaylin is going to be the center of attention and offer unconditional love to everyone that needs it. Miracle indeed!

Periodic update

The end of the week of Zeloda was tough--the problem is not being able to eat, with no appetite at all and increasing nausea. Finally used some nausea pills but they sure don't create an appetite. So I had hoped for the relief of the week off--but so far it is disappointing. Monday passed without a hint of appetite, Tuesday has begun the same way. I do feel better, of course, without the Zeloda taking its twice a day toll. I have been bothered by some abdominal cramping which is nothing new to my GI system but is painful enough to put me down on my back for a few hours until it passes.

At least I am able to be up, to go on errands, and yesterday, to work with DCCC Board members to prepare for the January concerts in the two series. I have removed myself from nearly all of those responsibilities now, but still have to work on finding someone to plan a new series. I knew I needed to mentor someone to do this, but didn't think it would be so soon. My "ten year plan" has been decimated. Life is more day-to-day now.

A Multitude of Angels

Since my effort to let everyone know my condition and allow them to track my progress, I have had dozens of cards, notes, calls, visits, and--of course--postings expressing concern, wishing me well, and promising prayers. You are angels, all of you. Though this is a very personal battle, knowing that there are all those folks out there who are sharing my journey is reassuring and uplifting. Your presence is felt on a daily basis. Bless you.

Periodic update

This week of chemo has been different the the first series-- I completely crashed on day three of the first go-round; day three and four were good this time. I felt well, ate very well (even worked in another McFry day), and was up and around most of the time. So here we are in day five and I am as limp as a noodle, spent most of the day on the sofa. Still, so far this week, no nausea pills. That is a good thing.

I think a lot of the exhaustion I had been having the previous weeks was related to my blood glucose levels. When discovered, it was in the 300s (100 - 150 is considered normal). Since I have been checking four times a day and controlling it, I never go much above 200, with normal readings first thing in the morning. Another good thing. Just two days of SBs left before I get another week off. I have checks with both my Oncologist and GP a week from today. I feel well cared for.

Note to my Gentle Readers: I am getting a lot more sleep than the posting times in this blog would suggest-- that comes up from the software and is--like--Pacific or something.