Saturday, March 28, 2009

I love the weekend

The weekends are such a relief...no trips to the city. Instead I zoomed over to Ace Hardware at 7 a.m. today to buy Todd a garden sprayer. In talking to Diane last night about Todd's difficulty eating, she told me how she had used a garden sprayer to spray the back of her her throat for a good 10 minutes to thin out the mucus before drinking the Ensure. It was a great idea, as Todd has had 3 bottles of Ensure today (over 1,000 calories). This is a nice breakthrough--bless you, Diane! Between that and the IV fluids yesterday and today, Todd is feeling much better. He's even regained his sense of humor. Boy, this is such a relief!

He doesn't want to do the feeding tube, so we will see how the next few days go. If he can keep the calories up, I think he will do fine. Lauren and I went to Costco for a case of Ensure today. Thank you all for your comments.

Thursday, March 26, 2009

How low can he go?

I picked Todd up at noon today for his 1:00pm radiation appointment so he and I could meet with his oncologist. (Thanks to Glen, Beth and Roni for driving earlier this week -- it was a relief to be back at work for three days in a row!).

Dr. Yom decided today that Todd needs a feeding tube. They calculate his weight at 172, down from about 193 when treatment started (10 lbs of that was from the cheesecake-and-pie binge to fatten him up before the rigors began). In his "birthday suit" he is probably 168 or 169. In the past week, the most he's gotten down in a day is a can of the fortified instant breakfast and a few spoons of applesauce, maybe 300 calories if he's lucky. I am hoping the feeding tube will help us get enough nutrition in him to help with the fatigue. He currently does not have a big problem swallowing, it's that the thick mucus triggers the gag reflex which causes him to vomit. So he drinks and eats just a tiny bit at a time, rests, and eats or drinks a tiny bit more, and the amount he consumes over the course of a day is just not enough. If he tries to increase the rate or the amount, it all comes back up.

Dr Yom wants him to have the tube for 2 months only. He will continue to go for IV fluids tomorrow (Friday), Saturday, Monday and Wednesday. We hope to get the tube in early next week; it has to be scheduled at Kaiser around his 1:00 radiation appointment at UCSF. We will see how it goes.

We left UCSF at 3pm, and then drove back to WC Kaiser for his IV hydration. I met with the oncologist there to discuss the feeding tube with her, got more hydration scheduled, got 2 prescriptions from the pharmacy, and sat with Todd in the infusion lab until he finished with his fluid infusion. We finally got home at 6 pm. (Luckily we're only 5 minutes from the hospital). He slept for half an hour and I woke him up to take some meds and he ate a few spoonfuls of vanilla pudding before going back to sleep. Jim and Kristie brought dinner (thank you, thank you!) and stayed for a glass of wine (on Kristie's recommendation I will try a glass of wine more often). The kids and I had dinner together.

Over the weekend will try and talk to Diane and Tom, two cancer survivors who have experience with a feeding tube. Meanwhile, it's bedtime. We have to be on the road to UCSF by 6:45 am for the early radiation and nutritionist appointments tomorrow. Vince has the afternoon trek back to UCSF so I can go in to work for a while. Good night!

Wednesday, March 25, 2009

Wednesday, March 25

Another day...I got Todd to sit out in the garden with me for a little while today. All the tulips are in bloom: intense pink, red, orange, yellow and a deep dark purple, the color of a grape popsicle. Our neighbors came over for a few minutes to chat.

Todd seems to be slowly getting over the effects of last week's chemo. He said it hurts a little more to swallow now (due to the radiation), but it still is manageable. Eating and drinking are still difficult things to manage. It seems to me that he hasn't really eaten anything solid or substantial in quite a while. Since he can only handle small sips at a time, drinking a few ounces of Ensure or fortified Instant Breakfast can take a really long time. And, if he is tired, he will fall asleep between sips...I think an alarm that would go off every 5-10 minutes would be good. Each day we start with good intentions regarding eating and drinking, and in the end we learn that it is whatever it is.

Eight more days of treatment. On the last day I think we will need a long nap. Maybe even before that!

Tuesday, March 24, 2009

A good morning so far...

Todd got up and took a shower and his meds.
"How do you feel?"
"Weak and tired and hungry"
He's lying in bed sipping his breakfast drink. Hopefully he will drink enough of it to feel better.

Monday, March 23, 2009

Thank you all for your comments. They lift me up like little wings!
Glen was taking Todd to radiation today, so I was going in to work early, only I got there at 11:00 am! I came back home after dropping off the boy carpool at WCI and Todd was not feeling well. He had vomited right after his first meds of the morning at 6:45 am. I left him rest, then washed and dried his face and put lotion on his face and neck. His neck is bright red from the radiation. The sides of his neck look dry and flaky and he has some slight scabbing at the front and sides of his collar area. I doused them with the "Udderly Smooth" lotion, which can't be applied closer than 3 hours before radiation. I combed his hair, which he is definitely shedding a bit. He just lay there, propped up on 6 pillows like a doll, the poor guy! He did drink a little gatorade and a little fortified Instant Breakfast while I showered. We finally got ahold of the radiation department and they told me to have him there "One-ish" instead of noon. Glen picked him up for the trip to UCSF after I had left.

I asked Glen to drop him off at Kaiser for his IV hydration and 3:20 appointment with the medical oncologist there. When I arrived at 3:20, the infusion nurse was poking him for the IV. After she tried again, unsuccessfully, I asked her if someone else could try. Donna's first try failed as well, and I suggested the heating pad process they had used over the weekend. After warming his arm for a few minutes, they finally got a vein to cooperate. It's tough when you're getting fluids bcause you're dehydrated, but too dehydrated to make it work.

Once he was hooked up, we all walked over to the doctor's office for his appointment. I went over his list of meds with her so she could refill a prescription and give us advice on dealing with the vomiting. She said that more antiemetic drugs were not the answer, as the vomiting now is a result of the radiation -- the thick mucus brings on the vomiting reflex (gross!). She suggested lots and lots of rinsing with the salt/baking soda/water solution and spitting, and using the Biotene mouthwash. Tomorrow Todd will try that before he takes any meds. I've fashioned a pretty good spittoon out of a 2.5 gallon plastic bottle. I left him to get his prescription filled and run home to check on the kids. Carolyn cheered me by playing some Christmas carols on her keyboard (she was practicing for her piano lesson) as I slumped on the sofa.
When I got back, the front of Todd's navy sweatshirt was covered in little bits of what? Dandruff? No, they were his whiskers! He had been rubbing his chin, and they were just fallling out like rain! He still has plenty left, but I guess he really doesn't have to shave if he doesn't want to. We finally got home at 6:30 pm and Todd climbed in bed, feeling cold. I wrapped him in 3 blankets and found Dash's knit hat to keep him cozy.

Saturday, March 21, 2009

(I have finally figured out how to allow comments from non-registered users, so everyone is free to comment at will!--bb)

We make it to another weekend

Todd was nauseous after the chemo on Tuesday and so hasn't really eaten anything since then, except maybe part of a popsicle. (He has had fluids). At Thursday's meeting with Dr. Yom he was feeling really down, so unlike himself. She said he was doing great, medically (he's responding to the treatment, his skin still looks good (but very bright red from the radiation), he can still eat solid food (but he has no appetite), pain is not a problem (although nausea is). After Todd went off to his radiation treatment she told me that the feelings of depression kind of go with the territory. But when Todd gets depressed, I get depressed, and it's a feeling I truly hate.

I tried to get him to eat today, and he did have about a scant 1/4 cup of miso soup (the nutritionist suggested eating salty foods to help settle his stomach), and later, about a teaspoon of applesauce. At 1:00 I dropped him off at Kaiser for his IV infusion to help hydrate him. The doctors thought that if he was more hydrated, he'd feel better. When I met up with him in the infusion center he was throwing up. So much for food. I felt defeated...and went out in the empty waiting room to quietly wah wah it out. Alright. Then back downstairs to the pharmacy to order his refills. I'm becoming a 3x a week regular.

I know in talking to Joyce, and another woman who's husband was just finishing radiation, that the eating thing can be the absolute most frustrating for us caregivers. They don't want to eat. They have no appetite. It hurts to swallow. Food doesn't even taste good. Beef is nasty. Certain flavors of popsicles burn, as does pineapple juice, or any citrus. They feel bloated and or nauseaus most of the time. Or they hurt bad. I can see why two of Todd's friends lost 50 lbs each during this ordeal, and why the doctors insist it can be the most difficult challenge. I'm giving up directing this for the time being, as I need a break from the frustration. I provide Todd a glass of peach juice and one of Instant Breakfast made with whole milk and added fiber powder. I'm having an egg on toast. Carolyn's doing soup in a bread bowl. The other two teens are out for the evening.

Jazzy and I took a walk in the dark, and it was the best part of the day for me. We started out at dusk and walked to Mountain View and then up and back down Norris, Poppy Court and Hadden on the way back. Two blocks from our house it started gently misting. Then real rain--we ran home, steamy and wet. When we got back Todd was on the couch, watching the basketball game, his drinks still beside him.

Tomorrow(Sunday): another day. Todd has an IV at Kaiser at 9:00 am.

Tuesday, March 17, 2009

Two long days

Monday I picked up Todd at 11:00 and drove him to UCSF for his noon radiation appointment. Unfortunately, his radiation machine was broken, so after waiting nearly 2 hours we moved on to the appointment with his medical oncologist, Dr. Dubey. We discussed the chemo infusion happening tomorrow and she gave us a prescription for a higher dose pain patch, which Todd will switch over to as needed. Back down to the basement, we found that the radiation department was still running way behind. Finally, he was done--we didn't get home until 6 pm.

Tuesday, St. Patrick's Day. We leave the house around 7 am for Todd's chemo infusion at 8 am but run into nasty traffic, backed up way before the toll booth. We get there late, but nothing much is happening anyway. Diane, Glen and Todd's favorite infusion nurse is dressed in green for the ocassion, even down to a watch with a bright green strap! She gets Todd started. He must be more dehydrated than last time as he hardly leaves his recliner to use the bathroom (with the first infusion, it was every 15 -20 minutes!). At 12:30 I leave to take a walk and head down Sutter to Filmore and then up the hill to Broadway and a gorgeous view of the bay and the fabulous homes surrounding me. I get back and get Todd some lunch from the cafeteria: pasta salad and tuna salad; he eats a decent small portion.

The radiation machine is still broken and even though they knew we were coming down at 2:30 after the infusion, Todd does not complete his radiation until 4:50 pm. I knitted 2 hats today for the cancer patients, so it wasn't a complete waste of time! We talk to someone in the first floor radiation office to try and insure we get closer to our schedule -- we have friends and neighbors planning on driving, and we can't have them sitting there all afternoon (plus it is so wearing on Todd--he said he kept dozing off on the radiation table today and then jerking awake. Hopefully that didn't affect the placement of the radiation). One of the supervisers assures us tomorrow will be better. We hope so, as we get home again at 6 pm, so tired! Thankfully, the Jacknows have brought dinner!

Saturday, March 14, 2009

Neighbors and friends have been wonderful about bringing dinner on Tuesdays and Thursdays, and we have had brownies and soup and pasta salad show up fortuitously. We are so thankful for all this, as dinner is just one more thing to add to the day's long list of tasks. The food has made us feel both nourished and cared for and I thank you Joyce, Glen, Chris, Dan, Jim, Christie, Christine, Carolyn, Anne, Peg and Sharon.

Neil often stops by over the weekend on his bike to chat for a few minutes and Tom came by today to pick up Earthquakes tickets and check in. It's nice for Todd to have those short diversions that take his mind off himself. He gets very tired if he keeps it up for too long, but short visits can be good!

As for me, I recharged a bit this weekend by going to my investment club meeting on Friday night, here in the neighborhood. Although we only had about half the group in attendance, it was nice to see everyone and catch up, have a glass of wine and relax. They are all so supportive, and came up with some good suggestions for me and additional offers of help when needed. Donna offered to drive us in her van on Fridays so Todd could lie down on the bed in back and sleep the way to UCSF and back. It may be something we definitely want to do that last week or two. Fridays, with the double radiation 6 hours apart, have really been wearing for Todd. This week, Ken took him for his Friday afternoon appointment and Todd totally enjoyed talking about soccer and the WC soccer club all the way there and back. By the time he got home around 5 pm he was sooooo tired. He didn't nap between the morning and afternoon appointments as he usually does, and didn't sleep on the way home as he usually does. (He sometimes forgets he needs to pace himself, and rest more). He was in bed the rest of the evening, and only came out for a few minutes to eat a couple of bits of food, and then crawled back under the covers.
Saturday, March 14, 2009

This coming Monday will mark the halfway point of Todd's treatment, and so far Dr. Yom is very pleased with the way things are going. On Thursday, she said he looked great (for where he is in the treatment plan) and said she couldn't see or feel the tumors anymore. (And "NO!, we are not stopping treatment. That has proven to be a VERY bad idea!"). His face looks thinner, I notice his neck more, as it looks sunburned; his voice is huskier, quieter (I have to buy a bell so he can ring it when he is in the bed and needs something. A friend suggested a china or glass bell, so I can smash it when this is over. Yes!). He moves slower, more cautiously. He seems fragile to me, and then he is his old self for a while and cracks a joke and all is good!

Todd has been very tired this past week. Constipation (a result of the drugs he's on for pain and nausea) comes and goes, and unfortunately he seems to be experiencing it more often, which means he feels too bloated to eat or drink much without vomiting. Nasty business. The amount he ate yesterday was miniscule. He is currently on 9 medications, including a patch, the easiest of all to handle, since he doesn't need to swallow it. Swallowing has become painful, as expected, these last several days and Dr. Yom said it will only get worse. Todd said it is unbelievably painful to burp.

Today I took Dash and teammate Derek to their soccer game over at Tesoro at 8:20 am. It was REALLY cold and windy. Luckily I had the dog blanket in the car to wrap up in (what's a little more dog hair, I say). Because they were really short of players, Dash was pressed into service as the keeper, so it was an exciting game (he did pretty well for being totally inexperienced, but no, he did not save the game. They lost 3-2).

Carolyn is in Lemoore, down near Fresno for her Association Cup soccer tournament. I was originally going to take her, but felt more comfortable staying close to home, so her coach kindly offered to take her with his daughter. I can't put the burden of caring for Todd on the kids. It's not a physical burden at all -- it's the mental worries (Is he eating / drinking / medicated enough? How is he feeling?) -- the constant followup that I try not to do to constantly, for his sake and my sanity. The kids are concerned, and frequently check in with dad, but's it's not at the same level or consistency, nor should it be.

This coming weeks brings his second (and last) chemo infusion. The doctors said this should not be a problem -- it will be the fatigue brought on by the cumulative effects of the radiation and the increasing problems with swallowing (eating and drinking) that will be the concerns. We will see how much longer he will be on solid foods. I have filled small custard cups with a few spoonfuls of various things (risotto, pasta salad, sweet potatoes, soup, tiny cubes of chicken, vanilla pudding) and set them on a tray in the refrigerator so he can "self serve" whatever appeals to him when he gets hungry and I'm not home. He said food is starting to taste very bland, so between that and the frequent bloating, he is not eating much.

Having drivers this week was wonderful. Glen drove on Monday, Roni and Wednesday, and Ken took the Friday afternoon shift. I drove for the Tuesday and Thursday noon appointments and the Friday morning one so I could be there for meetings with the oncologists and the nutritionist.
The nutritionist suggested papaya (fresh, or 100% juice) to help thin the thick oral mucus he is starting to experience. Last week she gave us a recipe for "Power Pudding" for constipation: 1 c applesauce, 1 c ground flaxseed and 3/4 c of prune juice. Dosage: 2 T followed by a big glass of warm water. Ug! Only works if you're not too bloated to drink the warm water with it.

Friday, March 6, 2009

21 more to go...

Todd has undergone nine of his thirty treatments as of today, March 6th. We saw Dr. Yom, his oncologist, again yesterday. She examined his cancer sites (tonsil and lymph nodes) and said he was doing very well. Keep up the good work! He's feeling better, eating more (small meals, but more often) and the only problem seems to be constipation. We got more drugs for that, which he will try on Saturday when he is home all day. I remember what Glen told me: you get drugs to help your body deal with the treatment. But the drugs have side effects. So you get drugs to deal with those side effects. And sometimes drugs to deal with the side effects of the drugs dealing with the other side effects...and so on.

Todd has many drugs right now (mostly for the nausea), and more, different kinds for later. Plus all kinds of mouth rinses and a spray, gel, gum and special toothpaste with extra soft brush to help with the nasty mouth sores he will have next. I finally put away everything he isn't using now, as the countertop was getting too cluttered! He has been organized enough to write it down on a post-it each time he takes something.

I do need to create some kind of daily schedule for meds and the like because we keep forgetting to put the lotion on 3 hours before radiation to protect his skin from the "sunburn effect." His neck was bright red today when he came out after his second radiation session and I felt badly that I hadn't remembered about the lotion. On Fridays we have to be at UCSF at 7:45 am for radiation and an appointment with the nutritionist, and then back again at 3:30 pm for his second radiation session (the 2 sessions have to be at least 6 hours apart). We didn't get up early enough this morning to put the lotion on the required 3 hours ahead of time (no way were we going to get up at 4:30 so he could shower and then put it on!).

Driving to UCSF usually is a 50 minute drive each way, but can be longer depending upon traffic. Todd normally dozes on the way home, and then heads straight to bed for a nap or at least a rest of half an hour or more. He does have periods of energy, but you can't predict how long those will last. He told the doctor that in the last 2 days he's had short periods where he felt "perfectly normal," and that it was a little depressing when the naseau or bloating or fatigue came back.

Yesterday I could hardly keep awake the last few miles home. I cracked the window open and bit my fingers to stay alert! Todd was sound asleep. When we got home I decided to take just a tiny 15-minute nap before I went back to work. I slept for 2 solid hours! Thanks to the advice of Joyce and Glen, I put out an S.O.S for help driving to UCSF and for meals twice a week (Tuesdays and Thursdays). Everyone has been wonderful! Food has been arriving and I now have some help driving for the remaining 4 weeks. Although I love being there for Todd and really don't mind the driving (except when I am tired), it definitely has been crazy trying to get things done at work. Bill (and Jess and Shirley) have been so supportive of me during this time. A blessing, they are!

Today (Friday) was a double appointment day and we didn't make it back from the afternoon 3:30 radiation until 5:30. Then I went to Safeway for a few things (applesauce, non-citrus juices, whole milk) and stopped at Kaiser for yet another prescription. Lauren was still at work, but Carolyn and I met up at Kaiser's parking lot, where I tossed her a bag of Swedish Fish to take to the movies with her. Dash was at futsal practice, so the house was quiet when I finally got home.

Todd likes to have dinner as a family whenever possible, but can't deal with the sight of a lot of food, so Carolyn takes great pains to arrange candles and other decorations on the table so Dad cannot see the serving dishes from where he is sitting. We use little dishes for him, just a spoonful of this, 3 spoonfuls of that at a time. The nutritionist said that was important, not to overwhelm him with food. He enjoyed leftovers of Christine's ziti (including half a large meatball) today, and Carolyn's enchilada pie with fresh avocado was a big hit yesterday. Dash made sure there were no leftovers on that!

I am looking forward to the weekend, when we have relatively few obligations (just a soccer scrimmage here and there). I want to go out and see the tulips blooming in the garden and pull some weeds. It is good therapy, and (un)fortunately I have enough weeds for weeks of therapy!

Wednesday, March 4, 2009

Wednesday, March 4

Last week when Todd had his meeting with Dr. Yom, the radiation oncologist, she and her resident looked in Todd's mouth and palpitated his lymph nodes. "Excellent!" she said. "I can see that the tumors are already shrinking." Dr. Yom is not one to sugarcoat news (so we've heard) so this is great news after just 3 days of radiation! It's got to be easier to go through painful treatments when you KNOW they are working, as opposed to just hoping that they are working.

I have been concerned about Todd as he hasn't been eating much at all since last Wednesday. He has already lost the 10 lbs (cheesecake) he gained before his treatment started on Feb 24 (just over a week ago). He has just been feeling so bloated. Earlier this week we changed to bird-like portions on saucer-sized plates because just seeing even a normal portion of food made him feel sick. Then, last night at dinner he had TWO tiny portions of Christine's baked ziti. The breakthrough came this morning when he ate half a scrambled egg portion and a WHOLE PIECE OF TOAST! I drove him to his noon appointment and back, and after a 15 minute rest he was ready for lunch: applesauce and a mini quesadilla. I went back to work and he called me with the good news -- he was still hungry after that "lunch" and ate more! Maybe the effects of the chemo are finally dissapating. Dr Yom says he should stay on the anti-nausea drugs anyway.

I sent out an email last week to neighbors, friends in our gourmet group, and my ladies' investment club asking for help during Todd's remaining weeks of treatment. Both Joyce and Glen Thomas (Glen is a UCSF cancer treatment alum who when through this last spring) said to ask for help early, because it is very hard. They were so right! With no family west of the Mississppi, I quickly realized I couldn't handle driving to the city 6x a week, caring for Todd, working, and keeping up with the kids and their activities.

Roni Jacknow organized a sign-up email of kind people willing to bring dinner twice a week and / or help drive Todd to his appointments. These first 2 weeks I have just been taking time off work, which makes for a chopped up day. I work a bit in the morning, run out at 10:50 to pick Todd up at 11:00 and run back into work somewhere around 3:00. Having drivers will help me a lot, although there are several appointments a week that I will still drive to so I can talk to the doctors and the nutritionist. Having dinners delivered has been a blessing, as twice a week I don't have to even THINK about what the kids and I are having!

Lauren's been great about picking up prescriptions and driving to Safeway for popsicles or whatever Dad needs today. She works after school though, and usually has a lot of homework, so she doesn't have a lot of spare time.

Todd got our taxes done today -- I don't know how he did it (he was curled up asleep when I got home from work at 6 and said he felt really tired). He had been so lethargic over the weekend and for the first part of this week that I thought he was going to be like this or worse the whole time. He worked a little bit on the taxes yesterday, but to tell the truth, I was thinking that I would have to figure out Turbo Tax in my spare (?) time. (Nooooooooo!)

It's good to see him with a little more energy. He is doing a good job today of pacing himself: taking short rest and nap breaks throughout the day, and trying to eat more often. Today he's probably eaten the equivalent of 1 normal-sized meal, which is a big improvement.