Sunday, May 31, 2009

Updates from BB and TB

Sorry we haven't blogged much lately. I keep thinking, hoping we are back to "normal" and of course we are not. Todd is still recovering from treatment and will be for a while. Meanwhile, life rolls on -- Dash is graduating from 8th grade and Lauren from high school in the next few weeks. They are busy with end-of-year projects, finals, and in the case of Dash and Carolyn, getting ready for their summer trips. Carolyn is taking her last driving sessions, hoping to get her license in July. Lauren has been working after school and getting ready to flee the nest. I fear summer will just fly by -- our last summer with the three kids still at home!

We were recalling that last year at this time we were getting ready for our big trip to Europe with the kids. I was apprehensive about traveling with 3 sometimes crankypants teenagers for 3 weeks, but we really did have a great time, and we all have lots of nice memories of the trip. I remember how carefree we were then -- nothing but blue skies! I tell you friends, take those trips, don't put off those things that make you happy, as those memories will help sustain you through the crazy times!

Todd's sister Penny (from PA) and her children Heather and Chad came to visit us last weekend. Heather is now 27, Chad 24, and our kids adore them both (and also Heather's boyfriend, who was unable to make this trip). I snuck away to drive up to Napa with them one of the days, and we had a great time. They came to our 59th Annual Memorial Day neighborhood picnic. The weather was a little frigid by dinnertime, but they were good sports! It was a really nice visit. Last year his sister Amy and her family came from Boston for a visit just before we left for Europe.

One day last week I drove Todd to Richmond (Chevron) to get his laptop fixed. The tech team quickly dealt with it while he waited. He had a short meeting with his boss, Kevin, while he was there. I'm sure Kevin was shocked to see him. Guys, I'm doing my best to get him better!! I know Todd will be happy for this to be over and be back at work, because he really likes his job and the people he works with. As it was, he slept in the car on the way there, and most of the way back. It doesn't take much to tire him out, unfortunately, but give him some time!

TODD REPORTS:
We met with the UCSF doctors on Tuesday for a check-up. If feels like months since the treatment ended. I still have bouts of nausea, constipation, thrush and throat pain, but overall I feel better than those first couple of weeks after treatment. (Bonnie's note: he was so drugged up then that he doesn't really remember how nasty it was, thank goodness!) Life would just be a whole lot nicer if those other symptoms would disappear. I've been told that it happens, but very slowly.

The highlights of the visits were the comments from the oncologists. Dr. Dubey, the medical oncologist, said she couldn't find the secondary lymph node site. Dr Yom, the radiation oncologist, who is usually conservative in outlook, was saying things like "excellent" and "95% sure that the cancer is gone." Despite the pain and hassle associated with the onging symptoms, this was pretty heady stuff to digest.

I had an MRI on Friday afternoon, which should give us some numbers on the primary site, if there isn't too much inflammation still visible. The results will go before the UCSF tumor board on Wednesday (if all goes well), and Dr. Yom will call me with their findings later this week. In July I have a PET scan scheduled to take a close look at the lymph node. Those two scans should give us more info on the prognosis. Realistically, I can't get a clean bill of health for 5 years yet. I just get examined closely and frequently every 3 months, then 6 months, then yearly for the next 5 years...looking for bad news and hoping for none.

Still, the "95%" number is cause for celebration. My friend Glen who is 5-6 months ahead of me and doing really well, was given a "70%" by Dr. Yom at this stage, so I am blessed so far! Thanks for all your support!

Saturday, May 16, 2009

This is the start of Todd's 7th week post-treatment. It goes by so fast, yet things change so slowly. But there is good news this week! Todd started the week off still not eating enough, and vomiting once a day, which made things even worse. We were both pretty down because of that. Joyce and Glen came for a visit and cheered us up. Glen had mentioned using an appetite stimulant to good effect and so we talked to Dr. Liu about trying one. It has made all the difference!

The one he is using not only stimulates his appetite, but helps control the vomiting and also helps a little with the pain. Because his throat is hurting less, he is actually eating a little solid food. Since last night he has had tiny bay scallops, most of a poached egg, three tortellinis, a spoonful of mac and cheese, a little ice cream, a few bits of chicken and pork. Ensure Plus, Jello and cling peaches are still on the menu, but it is wonderful to have it expand! The next big (huge!) step will be when he can eat solid food without the help of drugs, but for now we will take this interim step.

Todd is still pretty fragile. He pulled a muscle reaching behind himself to pick up a pillow(!)--and it hurts whenever he revisits that movement. He has lost a lot of muscle mass. Today we bought new jeans size 32 (he normally wears a 34), as his regular ones were just getting way too baggy. They are still a loose fit in the leg. We also got him a summer hat so he can avoid the sun on his face and neck. I took him for a haircut and she did a nice job of camoflaging the sparse spots on the back of his head. We went for a walk around the block tonight once it cooled down from the 97 degree heat we had today.

Todd's sister Penny will visit us over the holiday weekend with her two grown children. We are looking forward to seeing them. Chad has visited us a few times, as he is living in Alameda and working with an engineering firm on the Bay Bridge. We haven't seen his sister Heather or mom for a while. It should be a nice visit!

It's great that the week is ending on such a high note, as the first part of it was definitely depressing! Thank you all for your good thoughts and comments and cards. They really keep us focused on the positive.

x

Sunday, May 10, 2009

Mother's Day 2009

I had a lovely Mother's Day. Todd and Carolyn snuck out to go shopping yesterday under the guise of her getting some driving practice. He got me a beautiful "mushy" card and two really pretty necklaces.

Todd and I were up well before the kids this morning, so we went out and sat in my garden. Daisies, orange California poppies and roses are all in bloom! The kids eventually joined us in their pjs. Lauren made me a card in the cut-out shape of the word "MOM", painted in green and blues with tiny pink waterlilies -- Monet inspired! She is so creative. She made Todd a birthday card this year that looks like a little box. When you slide off the ribbon bow, the box opens to 5 little Brookhart people - each with a photo head! She also gave me some flowering plants for the garden and she and Dash each got me a glass "mushroom" garden ornament. One is orange with yellow swirls, the other is irridescent green. Dash made a card all in Spanish! We all look forward to his special cards, as he has an offbeat sense of humor. Carolyn said her gift was still being worked on. She likes to do hers after-the-fact. She will surprise me with her creativity! She did let me hug and kiss her several times today, which is a lovely treat. The kids washed my car, had a squirt gun fight and then I helped the girls clean out the garage a little (mostly Lauren's doing). Carolyn helped me hang the hammock in a secret place amongst our redwoods. Dash played "Blackbird" on the guitar for me as a final treat.

I didn't want to go out for dinner, as Todd is not up for that. I thought about taking everyone to see Star Trek, but nixed that idea for the same reason. I didn't want to leave him home. He is still only eating jello, besides the Ensures, and being out yesterday for that bit exhausted him for the rest of the day. So the kids and I piled into my clean white car and we went to In-N-Out for burgers! Fabulous! We went through the drive-through! We brought Todd a vanilla milkshake, but he wasn't up for more than a few sips.

Both today and yesterday Todd had good days, but then vomited in the evening. I have emailed his doctor to see if she has any ideas why, and I will try to get him IV fluids tomorrow to make up for what he's lost. He is now entering his 6th week post-treatment. Doctors have said that people often see some good improvements 6-8 weeks after treatment, so I am hoping that will be Todd's experience as well. His throat is still so sore. We are very careful now to renew the pain patches a bit early to avoid more unnecessary pain.

We just so want this to be OVER! It is amazingly depressing how debilitating the cancer treatment is. People told us over and over how slow the recovery would be, but I guess it is human nature to believe that your experience will be better, just through sheer force of will.
You slog through the treatment phase, counting down the days until you are done. But you are NO WAY near done! These 5 weeks post-treatment have really gone by quickly, and Todd has markedly improved his quality of life, but he still can't eat, and who knows when that will happen. Ah well, onward we forge...we will not give up...

Improvements we've seen:
He's on fewer drugs = he's more himself.
His voice is back.
He has a little bit more energy each week.
He can eat jello, canned peaches (cold and slippery works best)
He can taste some things (but can't taste sugar)
He is sleeping better (and can sleep on 1-2 pillows, instead of sleeping sitting up).
Issues with night phlem are maybe 1x, not 10x (which means I am sleeping better, as well)
Dr. Yom said his salivary function was better than she expected at this time.
His ability to concentrate has increased a little bit each week.
He is ocassionally grumpy, an emotion he was too out of it to express earlier. (My grandma always said, "When they're a little crabby, you know they're starting to feel a little better!")
He is taking a little more interest in the world around him.

I always feel better when I do my list, whether it is like the one above, or my list of people like you who have kept us close. When I have trouble falling asleep, I think "I am grateful, I am so grateful..." and I always fall asleep before I finish my list of things or people I am grateful for. Good night!

Wednesday, May 6, 2009

Todd blogs again!

Sometimes is it one step forward and two steps back. This past weekend I had 2 rough days back-to-back. We tried reducing my last antiemetic drug to 2 doses per day instead of 3. That didn’t work out too well so I’m back at 3 a day. The good news is that this antiemetic doesn’t have any noticeable side effects. The pain spiked, a new thrush infection started, my ensure and water intake dropped and I felt crummy. How many times have I read and repeated here that improvements occur week to week (or more realistically fortnight to fortnight) but I think it’s human nature to look for changes day to day especially when I don’t really have anything else to focus on. Two back to back rough days really set me up for being depressed. Bonnie does a great job of not allowing me to think that way. So we reviewed all the improvements I’ve experienced over the last 4 weeks. That helped get me into the right mental state.

So far this week is going pretty well except for the thrush. The heavy phlegm problem seems to have gone away so I can sleep only slightly elevated now and only wake up to clear the phlegm 2-3 times a night. We succeeded in reducing my pain killer dosage so I’m not sleepy all the time. I tried a number on new foods, some of them worked (canned peaches) and some didn’t (peeled strawberries—the seeds are too rough‑-caused me to throw up for some strange reason) but I still can’t eat enough of any real food to reduce the number of Ensures I need to drink every day @ 350 calories a pop. Man, I am getting sick of Ensure but I’m probably months away from getting off them.

Glen returned from his Scotland trip and stopped over last night for a visit. Talking with him really helps me in so many ways. Later last night Neil came over to watch the Arsenal Champions League match and Vince dropped by and watched the 2nd half with us. Unfortunately Arsenal lost but it was nice have the two of them over. I didn’t have to talk as much since they carried most of the conversation workload which saved wear and tear on my throat.

The other change for the worse this week is Bonnie has gone back to work half time so I don’t have my sweetie with me 24/7 anymore. ;-)

Friday, May 1, 2009

It's hard to believe that 4 weeks ago Todd had his last double radiation treatment. As he says in his entry (below), it is slow going, but he is moving along!
This weekend we will attempt to get Todd off one more drug . He would then only be on the pain patches and some mild anti-constipation meds. At the pharmacy today, I noticed the clerk had printed out Todd's prescription history since December. I counted them (many were refills): a whopping 49! No wonder I feel like I am there all the time--I have been!
We have cut the IV fluids down to just 1X this week, and will do that (or none) next week, depending upon how much fluid he downs on his own.
We will try some soft foods for Todd this weekend: more jello flavors, puddings, mashed sweet potatoes, maybe canned peaches, so he gets practice using those swallowing muscles and sees what flavors he can taste. It's interesting reading some of the cancer blogs -- to some people everything tastes salty, to others it tastes metallic, to others still, everything tastes like cardboard. The same with the recovery time -- it's all across the board.
Todd is still cold a lot of the time, due to all the weight he has lost. (He seems to be down to a stable 158 this last 1-1/2 weeks). Even in the house he often wears a coat. He looks pretty cute in that leather cowboy hat he bought years ago in Australia! He is looking better over all. It will just take time to get his energy up, his food intake, his swallowing and talking--but it will come!
.

4 weeks Post-treatment

Two steps forward and one step back – That seems to describe my current state. We met with Dr. Yom at UCSF yesterday. She wasn’t quite as pleased with my current state as Dr. Fong was earlier in the week. The good news: she couldn’t see or feel any tumor at the primary site but her vigorous massaging of my toasted tonsil sure did make my eyes water. Whew! The not as good news: she said the secondary site at the lymph node was still working things out. She is satisfied with the progress there but she’s not ready to give me a clean bill of health yet either. The good side of this is when Dr. Yom does say there’s no sign of cancer it will be with a great deal of credibility.

Wednesday evening my throat pain jumped up suddenly and stayed there long enough that I had Bonnie increase my opiate dosage so I could eat without too much pain. I told Dr. Yom that it was like some one peeled off an old patch of flesh and exposed the new but raw flesh underneath. She thought that may have been exactly what happened. The bad news is that now my constipation should get even worse, I’ll spare you the details on this side effect but it is not trivial. Also the higher dose makes me sleepy so we will be looking to reduce the dose again as soon as we can. No one knows when the throat pain will go away and the guesses are widely spread out (2 weeks – 7 months). Depressing.

Right now cherry jello is one of the highlights of my day. Amazing, but after weeks of eating (drinking) the same thing 5-6 times a day, that cherry jello sure hits the spot. It also represents the promise of other flavors reentering my diet sometime soon. We are making a list of other foods I could try this weekend (pudding, mashed sweet potatoes, applesauce).

The night time phlegm problem continues to worsen. I probably woke up 20 times last night to hack up some really gross ‘loogies’. The only good news is that Bonnie’s count is always less that half so she is sleeping through most of my attempts to clear. This is happening despite sleeping almost sitting up completely. The downsides are lack of sleep, especially REM sleep, and a sore throat from all the effort all night.

On the bright side I haven’t had any vomiting attacks recently so we are going to reduce my anti-emetic med today. That will be nice if it works but reducing the pain killers would be nicer.

An additional note to Monday’s blog – While we were waiting to see Dr. Fong, a blonde lady and her husband walked out and I thought to myself, she looks a lot like Diane F! Diane also had tonsil cancer with lymph node involvement and finished her treatment in late October. Glen knew her and put me in touch with Diane so I had one more person to get coaching and support from. She has a blog with a number of her photos on it so that’s how I recognized her. I ran after them and caught them just before the elevator came. It was really nice to finally meet one of my most significant supporters and to be able to give her a hug and thank her. Thanks again Diane. I’m sure I’ll be calling you again soon.