Monday, April 27, 2009

Todd's first blog post-treatment!

I'M BACK. I finally have recovered enough to help Bonnie out with the blog updates. Man, the last few weeks were indeed a journey through hell. Bonnie tells me some detail from the last week of treatment or the first 2 weeks after treatment and I can’t recall any of it. There are massive chunks of those 3 weeks that are just holes in my life. The recovery so far has been pretty much as advertised in that I can’t look for day-to-day improvements. The recovery process is too slow for that. We look at things now week to week.

We did get some good news today at my 1st post-treatment appointment with Dr. Fong at Kaiser. We set up my monitoring schedule for the next few months. He finished with a detailed exam: my neck from the outside, inside of my mouth & throat, and inside again with the camera down the nose. He said he saw and felt no evidence of cancer. He also said that my quick early response to radiation was a very good sign. The next milestones are an MRI to be done at the end of May and a PET scan at 12 weeks.

Although I’m still living on Ensure shakes, my weight seems to have stabilized. I have lost 24 lbs that includes a fair amount of muscle. I have almost no endurance and I get cold very easily. Now my focus is eating enough Ensures a day (6 is the target), staying hydrated (drinking 1-2 liters), getting an appropriate amount of exercise and keeping a positive outlook. Bonnie has been the key to everything. I couldn’t have survived this without her. Yesterday she mounted all of the cards from you folks on the fireplace mantel and told me that I have all these folks and more out there rooting for my recovery. I have to admit it did feel good. So thanks to all of you who have sent cards or flowers or responded to the blog. I’ve managed to read them all and they do help.

This week is better than last week but life is still far from normal. Last night we got distracted and forgot that my opiate patches needed to be replaced. At about 8pm my throat started hurting much more than normal. It hurt so much that continuing to drink was out of the question. I just curled up in a ball and waited for the new patches to take effect.

Dr. Fong suggested that I try eating some soft foods to keep all my swallowing mechanisms working, so I just had my first non-liquid food in weeks, some cherry jello. Progress is so slow that it’s tough to keep a positive outlook consistently. Patience has never been my strong suit.

Tuesday, April 21, 2009

Two steps forward, one step back

Two positives: yesterday Dr. Liu cancelled one of Todd's three weekly IV fluid infusions, as she said his creatinine level was good. We will see what that means for next week. And, he actually was feeling hungry!

Unfortunately he came down with thrush last night, which made it more difficult to swallow. He stopped at 4 Ensures (he had 5 the day before). I visited my friendly Kaiser pharmacy for the meds this morning after I dropped off the boy carpool and delivered something to Carolyn at Las Lomas. Luckily the high school is just across the street from the hospital.
Hopefully the thrush will respond quickly to treatment as he doesn't need anything else to make his mouth sore. He had a rough night last night, with a lot of coughing and night noises that kept me up for parts as well. We will both need a nap today before the kids bring all their energy home. I'm dragging!

Sunday, April 19, 2009

Starting Week 3 Post-Treatment

Sunday, April 19th
Todd is doing very well today, thank you! When I woke this morning at about 8:30, he was already up and had a list of things he wanted to get done today (if that's not Todd!). He spent a few minutes trying to figure out why our cordless phone system is not working, and then we went out to check the irrigation system, truly the job I despise most in the universe!

The entire yard, front and back, is overgrown, as I haven't done my (gradual) spring pruning, which I normally start in February. So it means climbing between, around and under overgrown plants and bushes, trying to find the irrigation heads to check that all the tiny hoses are still connected. Often if I run a section of the system I can hear the hissing of the water where a hose has become disconnected, but that's not always the case. It's dirty, dusty, allergy-inducing work and my nose is usually raw by the time I finish a section. I chopped as I went, just to cut through the underbrush, and Todd turned the system on and off for me and help load the green bin. I later found him on the back stoop with our dear neighbor Vince, who has just cut down a small tree for us in the backyard. Vince was sitting in the shade, chainsaw at his feet, having a beer and Todd was sitting there next to him, drinking an Ensure! -- a scene that just warmed my heart!!

As he still isn't getting the number of calories he needs, I need to be careful that he only burns them on internal healing, as much as he might want to do other things. He does get tired pretty quickly. But it is good that he is thinking outside of himself! I am so utterly thankful that he is getting better. I simply can't imagine life without him, as he completes my world.

I am so thankful, as is Todd, for all your prayers and positive thoughts, and cards and flowers and fruit and food and driving and emails and everything you have done for us. Every single thing has made a difference!

Wednesday, April 15, 2009

Getting stronger every day...slowly

Sorry I haven't updated you in a while. The first week after treatment was harsh. Todd's voice was rough and raspy, he was very fatigued and it was very hard for him to keep anything down that he drank (he was on liquids only). As a result, he was very discouraged, and because of that I decided I would take some time off work to support him and his recovery. It wasn't going to be good for him to be home alone all day (during his treatment weeks he spend large chunks of the day going to and from UCSF), and trying to work and take care of him and the kids was going to be way too much.

Monday, April 13 was going to be my last day for the month but I couldn't even make it to the office during the day as Todd needed me here. And when the kids came home from school, they needed attention as well (they've been getting so little), so I waited until 9:30 pm when they were nearly in bed to drive the ten minutes to work. It was blessedly quiet (except for the short time the cleaning guy came in to vacuum), and I read and sent a pile of emails, updated all my PSAT files, finished off designing the summer mailer, and several other items. I finally left the office at 6:06 am, feeling a weight gone off my shoulders! When I got home, I was still wide awake, so I made the kid's lunches and got them up at 7 a.m. Suddenly I started feeling sooo tired. I called Christine to switch carpool mornings so I wouldn't have to drive Dash and the boys at 8:00 a.m., and fell into bed next to Todd. I slept until 11:00. I made it through the rest of the day pretty well!

We are now in the 2nd week post-treatment. Everyone has said that the first 2 - 3 weeks after treatment are rough, and so far that has been the case. However, I am already seeing some improvements. Just last night I realized that Todd had his Todd voice back! It still gets raspy when he talks too much, but for the most part he sounds like his old self, a wonderful thing! His neck looks great; it is still pink, as if from a sunburn, but all the dry skin and scabbyness is gone. Since we dropped two of his meds this last weekend, he is much more alert, much more "himself." And although his throat is sore, and gets worse the more he irritates it by drinking his Ensure or Instant Breakfast, he does not have the nasty raw mouth sores the doctors were expecting as a result of the radiation.

On the down side, he is very restless (he definitely has a case of "happy feet") and it is still a major chore for him to get enough calories. He is down to 162 lbs from his regular weight of 182-184 and his pretreatment "cheesecake" weight of 192. He has lost a lot of muscle and definitely has well-defined cheekbones. We are hoping that in the next few weeks as his throat slowly heals, we can get more calories into him. He has tried baby foods, carrot soup, yogurt, sweet potatoes, pasta with cream of chicken soup, mashed avocado, ice cream. Right now he has decided to stick with the liquid diet as it has the most calories for the work involved it getting it down.

Sunday, April 5, 2009

Are we done yet? No...

Friday night Tracy M came to congratulate Todd on finishing his treatment. She brought dinner and a bouquet of balloons and sat and chatted with us and the girls. She had gone through this with her husband Tom a few years ago. It was a nice visit, and Todd was in good spirits. I was surprised he stayed up as long as he did. It's great that in spite of all the craziness and in spite of how nasty he feels, he usually shows us his sense of humor. How could we not keep him?

On Saturday and Sunday he had IV fluids at Kaiser. Lauren took him on Saturday and stayed there the 4 hours with him; she did her homework on her laptop while he dozed on and off during the IV. Sunday morning I dropped him off and she picked him up.

For various reasons (some unknown!) he is still not doing well nutrition-wise. He should ideally be drinking close to 6-7 bottles of Ensure daily, and lately he's been doing 2 or 2.5. Today he had 2 plus a banana. If he drinks it too fast or tries to drink too much, it all comes back up, so he can't be rushed (I know, I have tried!). We just have to take it easy these next few weeks until things gradually improve.

I understand he won't be gaining any weight for several months, as he has so much to rebuild internally. I'm looking forward to the day he gets his butt back, as it has all but disappeared! He was 171 lbs today, only because he's had 2 days of fluids.

Glen came for a visit this afternoon. Glen and Joyce have been helpful beyond words! They have been our guides on this crazy journey, as Glen went through this madness just last year. He and Todd sat and talked, then they came out to where I was pruning the wild things back: an out of control climbing rose and a honeysuckle vine, both entangled in 2 trees. We sat in the shade and talked for a while, then Todd started tossing his cookies, so Glen made exit (he'll be back!).

Debra A. brought us some leftovers from the Gourmet Group dinner we missed this weekend at the Sankey's. The kids and I enjoyed the jambalaya, scallops and sausage, salad and bread pudding, plus the first watermelon of the year. Reminds me that I have bowls, a pot and several cookie sheets to return to folks. Must do that this week!

Tomorrow we have two doctors' appointments. I want to get the specifics on when and how to wind down the anti-nausea drugs and pain patches (I know it's not for at least a couple of weeks or more), and also find out when the follow-up CT or MRI scans will be scheduled in May. I consider them the definitive word on how the treatment went.

Thanks for those sweet comments! You all brighten our days and we are thankful you are part of our lives.

Thursday, April 2, 2009

Last Treatment Day

We found out today that tomorrow (Friday, April 3) is Todd's last day of treatment. Dr Yom decided today (Thursday) that she didn't want him to come on Monday; instead she wants him to have a good double-zap of radiation to end it.

I was counting down the days, and all of a sudden here it is! It is such a relief for me, I can only imagine how it will feel for Todd. Right now I think he is too fatigued to feel much of anything. (Tomorrow will be draining for him as well, as he has the 8:00 radiation/nutritionist and then back to the city for the 2:45 radiation/Dr. Yom appointment). Monday will also still be busy: I will try and arrange IV fluids at Kaiser for Monday a.m. as we have an afternoon appointment at UCSF to see Dr. Dubey, and another with Dr. Liu back at Kaiser (which luckily is only 5 minutes from our house).

But we are officially entering the next phase: HEALING. With no more treatments zapping him, he will gradually regain his strength and get off the meds. He will have IV fluids at Kaiser three times a week for at least the next couple of weeks, and then hopefully he will be drinking enough water on his own. We will see how it goes, as his throat is very sore now and it is taking a long time for him to down 8 oz because he is so, so tired (he falls asleep sitting up), and he can only take a small sip at a time. The mucus is very thick now, and his voice has completely changed. It is lower and quieter. His is face is much thinner, as is the rest of him. The other day I thought to myself, "Now I know how my husband will look when he is 80 years old!" (I guess I'll be keeping him! :) Dr. Yom said today, "You look beat up, like you've been through the war. " It's been a long, grueling time since that diagnosis in early December, but Spring makes everything seem possible, doesn't it?

The kids seem to be doing well. They came with us to UCSF today as they are on Spring Break this week. They met Dr. Yom and took photos for Lauren's senior project on cancer (her idea). The 8 of us crowded into the tiny exam room (5 of us, plus the doctor, nurse and trial coordinator!). Everyone was being a good sport about it, and it made me see my kids for a quick minute through the eyes of a stranger. How alive and vibrant they are! How did they get to be 14, 16 and 18 so quickly? They used to be constantly on my mind, and with Todd's cancer always to the fore these past several months, I found myself ocassionally thinking, "Oh yeah, the kids!" when many hours had gone by without even a random thought about them!

It is such a joy to see them hanging out together and having fun as siblings (I know it doesn't last long, but it is nice to know that it does happen!). Lauren has taken them shopping and out for food occasionally.Tomorrow she is driving them to Stinson Beach, as what is spring break without the beach. I want them just to have a great time and come back safe and sound.

Thank you all again for the meals and help driving, and positive thoughts and prayers, and text messages, cards and flowers. We have been blessed by your many kindnesses! I will keep up the blog, as Todd has quite a ways to go before he is himself again. I will do everything I can to get him back there!