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.