Chemotherapy and Related Issues

Tuesday, April 13, 2010

Had an appt. with a speech pathologist this morning. She checked how well I ate various types of foods (did fine) as well as water. Had many recommendations.

Do mouth opening exercises; first apply a warm washcloth to affected jaw area for about 5 minutes; SLOWLY open moth as wide as can and hold for 5 seconds. Do 20 times. Do throughout the day.

Recommended Carnation Instant Breakfast 560 (calories). Comes only in vanilla. Pharmacy at MD Anderson was out but ordered a case for me; will pick up when I have Dr. appt. on Thursday.

Recommended seeing the dietician as she would have many food/eating suggestions.

Talked about possibly renting a Dinasplint; will have to talk to Dr. Schellenberger about this as it may be too much for the jaw.

My mouth opens 25 mm; 40 is normal.

I will see her again after jaw reconstruction surgery; all appears to be as well as can be expected right now.

Nothing much to do about bad breath other than what I'm already doing; is dying bone that is causing bad breath.

On Thursday I have two dr appts. Dr. Tseng at 11:45 and Dr. Schellenberger at 1:45. Dr. Tseng is usually not too late with appointments so is good that her appt. is first. Will probably wait forever for next appt. Will pick up the Carnation drink between appointments.

Sunday, April 11, 2010

Took it a bit easier today and am not as tired. Did some yard work, weeding mainly, and tomorrow afternoon will "instruct" Phil in planting the two roses Emily won for me in the Rose Society raffle. Herb/patio garden is really looking nice; I enjoy watering the garden each day; gives me something easy to do outside. Phil will also do some major weeding tomorrow in the rose area. Am getting a lot of really pretty roses and the foliage also looks great. Thrips haven't hit them yet.

Still on hydrocodone pain meds for pain in late afternoon and evening. Will drive tomorrow to my cello lesson so need to stop the pain medication early in the morning.

Saturday, April 10, 2010

Seem more tired than usual today; may have overdone it with trip to Home Depot, planting herbs and perennials, walking Basil, practicing cello; may have been too much. Had scrambled eggs and soft toast for lunch and ate without too many problems. Still drinking three Ensure a day though. Paulette brought over some tapioca pudding and will have some of that with my dinner later today. Should go down easy.

Phil is watching Precious; I can't watch it; don't know why but can't get into the movie.

Friday, April 9, 2010

Slept well last night. Still on a pretty much liquid diet; will have 3 Ensures, 2 yogurts and soup for my meals. Dr. Schellenberger's office called with an appointment with the speech therapist next Tuesday morning at 7:30/8:00 am. Said it would last 1 hour.

Worked a lot around the house today and also got some yard work done. Weeding in the herb garden and getting some containers ready for various basil plantings; maybe after dropping Emily off at Kaylee's birthday party I can run over to Palmer's Nursery and buy some basil. Phil bought some rose dirt and will plant the two roses I won in Rose Society raffles.

Pain isn't too bad today.

Thursday, April 8, 2010

Home from the hospital about 3 pm today. Surgery went well; some pain but hopefully that will pass in a few days. Would have been home earlier but issues with going to the bathroom kept me in longer. Will be on a soft and liquid diet for a few days, but hopefully will be able to eat better and put on some weight.

Played some scales, OK, when I came home; will start back practicing tomorrow especially the easy Bach pieces.

Have an appt. with Dr. Schellenberger next Thursday at 1:45.

Tuesday, April 6, 2010

Left early for appt. for pre-surgery testing as there was a major water outage on Orange Avenue just south of Gore. Got there really early, but they took us early also.

I'm getting to know these people and they me. Connie, very nice anesthesia nurse told me about a new greek yogurt with 14 g of protein; Chobani. Picked some up from Publix on the way home; is GREAT!!!

Weight is still going down and is worrisome. Am up to 4 Ensures and day and will add some of this yogurt. Should be better after surgery.

Phil sat in with all the tests, etc. and was probably less bored than usual.

This afternoon, after walking Basil, called the speech therapist appt. line. She was able to set up something for me when I am in the hospital tomorrow. Will do an evaluation at that time to see if I need their services. I would think Yes.

Am packed and ready to go. Alarm is set for 3:40 am as either the water line will be fixed or we will be early enough to avoid any traffic problems. We have to be there at 5 am for a 7:30 am surgery time; first of the day for Dr Schellenberger, or so they tell me. Goodbye tissue.

Monday, April 5, 2010

Easter was WONDERFUL!!! Great visit; best day I've had in ages. Laurie had some concoction called a cake smoothie that she whipped up with mix, milk and ice cubes. Was wonderful; she sent me home with the rest of the mix. Comes from one of these in-home food sale organizations.

Peggy "styled" my wig though it didn't need much; looked pretty good though I really don't know how often I'll wear it; glad it was only $40. Had a burst of energy when we got home and even managed to watch "Pacific" (not nearly as good as Band of Brothers, but maybe that's because my dad and most of my relatives fought in ETO).

Major eating problems; pretty much limited to ENSURE. So, this morning I tried to make an appt. with the speech pathologist at MD Anderson as I know I will eventually need some type of feeding tube, whether stomach or nose. My weight is getting down, so I will try and drink at least 4 ENSURE each day. Hopefully, after the tissue removal surgery Wed. morning, I'll be eating regular food and can begin to put some pounds back on.

Was told that I couldn't schedule an appt. with the speech therapist but that my Dr. had to do so. I actually thought Dr. Tseng did that last month, but guess not. The lady I talked to was going to check into things and call me back this afternoon.

I am considering calling the mental health counselor also. I checked out a book called Distress and Cancer that had some checklists type quizzes. I scored OK and am not feeling as bad as what some patients must feel like, based on the test questions, but I'm thinking it might not hurt to have someone with a mental health background at my disposal down the road. Of course, this is probably something I can't do myself, but must get Dr. Tseng to schedule in which case I'll get her on it when I see her the end of the week.

Saturday and Sunday, April 3 and 4, 2010

Stopped all post chemo meds, as instructed by Dr. Rostofer and Dr. Shaw, and SLOWLY am feeling slightly better, less chemo lethargy. Sat. and Sunday took dog walks which always makes me feel better; weather is great here; mild and no driving wind to whip my turban off my head. Sunday we are going to our dear friends, the Sparks for Easter dinner, which will feature all soft things this year. I should manage with the baked potato soup and the banana pudding. Had ENSURE a few minutes ago, so I won't have to eat if I can't. Am pretty much limited to ENSURE and so am looking forward to the tissue removal surgery on Wed. mornings (5 am arrival; surgery is set for 7 am; first of the day and hopefully home the same day).

For evening "pain" which in my case is more discomfort, I've been using Hydrocodene and for day time, a small dose of liquid Tylenol (am off Advil until the surgery).

Tuesday, March 30, 2010

Saw Dr. Schell....... this morning; he will remove all the excess tissue in my mouth around my mandible on Wed. April 7th. Surgery is scheduled for 4:30 pm and I have to be at MD Anderson by 2 pm. Nothing to eat or drink after midnight the day before, though the nurse "secretly" told me I could have something up to 12 hours before. This will be either an out patient procedure or possibly overnight. As it is a Wed., I don't think it will affect my cello lesson which is on Friday; will wait and see and let B know either way.

Will be good to get the tissue removed as it is very uncomfortable.

The drooling seems better today; I'm thinking it takes as many days as you are in chemo to get over feeling crappy after chemo, which means I have until Thursday. Played scales this afternoon as well as the open string, metronome exercise at 60. No Problem but when I tried to go to Schroeder #40, there were problems so I put the cello back in it's cradle. Knock on wood, but still not back pain from the nulesta injection yesterday.

Sunday, March 28, 2010

Came home from the hospital this late morning. Round 2 of chemo was a bit rougher than round 1; my fault as I didn't keep on the times for the two different anti-nausea drugs. ALSO, nurse Carmen noticed late in the cycle that brought on the nausea, that the flow rate of the chemo was faster; I finished almost 3 hours before I was supposed to finish. That combined with negligence on the drugs were probably what caused the problem.

Once the drugs are in my system, things were OK. Unfortunately, I sort of got behind the system and never fully recovered, though the remaining day and a half were basically OK. Very hard to eat this time; will insist on better food and take some of the dark chocolate ENSURE with me to drink. In fact, I'll go have one right now!! Am back, with my ENSURE. Overall, boredom is the main thing about the chemo stay. For round #3 I plan to build a spreadsheet to keep me and the nurses on track with the meds.

There is also a third drug, which starts with the letter F which I need to look into using. It causes drowsiness so they don't give as much.

Paulette's T-shirts were a hit; Carmen, my favorite nurse, thought there would be a market because it would allow patients to wear their own clothes and wouldn't be expensive because Paulette would only need to charge for labor and shipping and the actual velcro and strip material. These really worked well!!! Yea for Paulette!!!

Played cello shortly after arriving home and did not have same problems as last time. Perhaps the various adaptive techniques B suggested worked as well as the Zen Health Balls which I really love; love to roll them in my right hand and am getting better at rolling them the opposite way.

Played Schroeder 40 and first part of gigue for Bach Suite III. Both sounded OK, though not my best which I will work up to for Friday's lesson. Will give B the new cello handbook at that time. Will also play the C G and D scales from Emily Whitaker's cello handbook.

This afternoon I think I discovered what was bothering my cello playing, I think; the right arm is slightly swollen where the IV was in (they needed an IV in addition to the PowerPort). Nurses suggested using a heating pad, which I've done, to help the swelling go down. Will see if this helps. I noticed a difference in playing from when I came home to just a while ago when the swelling was more noticeable.

Wednesday, March 24, 2010

MD Anderson called and I am supposed to be there at 10 am this morning. Hopefully that means the chemo will start early and I will get home early; probably late Saturday or early Sunday.

Wig came yesterday; looks OK though I don't know how much I'll wear it. Peggy shaved my head and surprise surprise!! I have a decent looking shaved head. All agreed that my head has a good shape; still is hard to get used to looking at it though. It is a little scratchy but I found it best to sleep without any hat on last night. You don't realize how warm hair is; my head is really cold. Will take three or four different head things with me to the hospital; my favorite is the first one Phil bought for me at the pharmacy at MD Anderson; fits the best and is the warmest. Of course, if the weather ever warms up, it may be too hot.

Practiced my scales, Schroeder #40 and the gigue this morning. Hopefully I won't have the right hand bow grip issues like I did after the first chemo.

Tuesday, March 23, 2010

Will get my head shaved this morning at 10 am. Started falling out in big chunks yesterday; slept with a little cap on my head last night to keep hair off the pillow. Wig hasn't come yet, but that shouldn't be a problem as I don't plan on wearing the wig as much as all the head scarfs, etc.

Will call the in patient booking nurse today to find out what time I need to show up at MD Anderson. Began packing this morning. Paulette will drop off the second top with the velcro arms today on her way to the Plant Clinic.

March 17, 2010

Am undergoing 4 chemotherapy sessions for cancer of the mandible. First was March 3rd to March 6th. Went better than I expected though was not exactly a walk in the park. Very boring actually as long as they keep the anti-nausea drugs coming on a regular basis.

Following chemotherapy I have about 2 weeks at home to recuperate and regain strength. Unfortunately I got an infection and spent 4 days in the hospital building up my blood counts. All seems to be OK now, knock on wood.

My friend Peggy cut my hair really short this morning. I've noticed some of has begun to fall out, but nothing major. The short cut, which actually looks good, should make the hair loss less traumatic. I've ordered a wig online, $40, as well as various hats, scarfs, etc.

Paulette has taken two old baggy T-shirts and is going to adapt the arm areas with velcro so that I can wear them during chemo. This should be more comfortable than always wearing a hospital gown.

All my friends are trying to find something to do to help. There really isn't much. Especially with food; it is not that easy to eat and I keep telling friends not to bring me food as I would hate to not be able to eat what they brought.

I've been mainly eating soft, slippery types of food. Macaroni N' Cheese, scrambled eggs, cottage cheese, various soups, oatmeal, TONS of dark chocolate Ensure (pretty good), milkshakes, are just a few of the staples of my current diet. I need to put some weight back on. Currently I weight about 113 to 115 depending on when I weigh myself. Would like to get back to about 125 pounds.

I've got about 6 days before heading back to MD Anderson for round 2. Need to start thinking about what to pack and how to pack it. Last two hospital trips I had way too much stuff by the time I left the hospital; I started out good, but seemed to keep accumulating stuff. By the time I was ready to leave it took 2 people to carry out stuff.

This next time I will use a small carryon as my only hospital bag. Should hold everything and be easier to deal with.

Some must haves for the hospital stay:

IPOD and dock

Kindle loaded with "trashy" fiction to pass the time; wireless connection is fantastic at MD Anderson

Suduko

DVD; will take the entire Anne of Green Gables series for round 2; the Family Room has about 100 Videocassettes so should be able to find something

Water Pic

Non skid slippers

Couple of magazines

Green Medical diary to keep track of everything

Toothpaste, mouthwash, salt, body wash or wipes, eye glass cleaners

extra socks

extra underwear, enough for double the time spent (not to be indelicate but you never know what hospital meds, etc. will cause your intestinal system to come up with, or come out with that is a surprise; better safe than sorry!)

two adapted big, baggy T-shirts with velcro arm openings

two or three lounge slacks

yellow but cushion, just in case; I spend too much time sitting while in the hospital

Kleenix and

VERY IMPORTANT, Good, home style toilet paper (the hospital tp is like sandpaper; plan to take rolls that are 2/3 finished so they fit into the hospital bathroom despencer.