Todd is doing much better these days. One of the lowest points for me was about 2-1/2 weeks ago when Todd was feeling very poorly and very needy (SO, so unlike him!) and I just didn't know what else I could do to help him. I felt I had done everything I possibly could, and just didn't have a lot more to give at that point. Luckily a dear friend came over the next day and talked to us about his similarly "down" experience a few months after treatment. It made a big difference, hearing what he had gone through, and what had frustrated him, and what he did to get through it.
I think that discussion and a little more healing time, combined with the family needing Todd to be "Dad in charge" when Dash broke his toe and Carolyn needed major "only dad can do this" help with her delayed flight and lost luggage, has helped Todd really start to regain his place in the family. He is, of course, still physically fragile due to all the weight he has lost and some of the meds he is still on, but this latest "bump up" in his recovery is most welcome.
In addition, he has given up on drinking those bottles of Ensure, and is eating more "normal" food. Just this week I FINALLY felt that he had three reasonable meals on the same day. Although not large portions by any means, it was a nice variety. For dinner I made him bay scallops, sauteed with tiny shards of fresh crookneck squash from our garden, and peeled plums (the peel is too bitter for him) with white nectarines. Such a relief from all the weird baby foods that were neither appetizing nor that nourishing! Lunch is often a quesadilla with cheese, chicken and corn. French toast with maple syrup is often the breakfast of choice, as it stays warm long enough for Todd to finish it. Eggs get cold too quickly, as he eats slower than his normal slow.
He is more open to trying a bite of something now, which is great. Today we shared a hot fudge sundae; he said it wasn't as tasty as it should be. (Hot fudge, how can that be??) So some things don't taste as good right now, some are still too difficult or dry or spicy to eat (nothing with black pepper, no citrus or tomatoes, for instance). But the list of edibles is growing, which makes it easier for me to come up with appetizing choices. This week the plums on our tree are ripe, so we we are enjoying them with almost every meal. In the next few weeks we will have white nectarines and apricots.
Tuesday was our 20th wedding anniversary, and we actually went out for dinner for the first time since Valentine's Day, before treatment started. Dash and Lauren came with us, also our neighbors Vince and Mary. We went to the little sushi place down the hill from us. Todd and Mary had tempura, the rest of us ordered unagi, tobiko, spider roll (with soft shelled crab), california roll with scallops and a few other things the sushi chef recommended. I brought a framed photo from our wedding day to decorate the table. We had such a nice time! We've had a lot of fancier dinners for our anniversary, but this was one we will always remember.
Thursday, June 25, 2009
Saturday, June 20, 2009
Sorry we haven’t blogged recently. There hasn’t been too much new to report on the cancer side, while the home life has been absolutely crazy.
I made it through both graduations, though I was really tired afterwards and I had to leave each shortly after it ended because I was freezing, even though I dressed like I was in Tahoe in January! Just don’t have any insulation left and the thermostat is still busted. Dashiell’s 8th grade graduation was pretty low key emotionally, as expected. The high school graduation was a different story. As expected, seeing my little girl take one more step toward the edge of the nest was intense. We are so proud of the fine young lady she’s become, but it is bittersweet.
The following week was I was apprehensive about attending the customer mtg in San Ramon due to my lack of physical stamina, but the mtg went really well. I was able to stay through lunch and my condition never limited my participation. It was the best morning I’ve had in months, since I was so preoccupied with the mtg that I went for long stretches of time without thinking about the big C. Kevin invited me to the dinner that evening and although I was concerned about eating in public due to my limited diet, low appetite and really slow eating speed (yes, even slower than normal for me!) I decided, what the heck, I’ll go for it.
One of the reasons I wanted to attend the mtg and dinner was it would be the last mtg for Vince C. and Dick V., who are both retiring in the next few months. They have both been great to work with but more importantly, they are also my friends. So I went home for a nap and later drove off to the restaurant. Yes, that is something new -- I am driving again. I’m still on enough pain killers to knock out a horse but I finally convinced Bonnie that they don’t really limit my coordination. Also, it’s not like I still drive a hot little sports car (ye olde Camry is 16 now). Well, dinner went great too, although toasting with a glass of milk while everyone else was drinking some nice red wine wasn’t much fun. It did get some laughs though! I managed to find courses that I could handle although it was a bit depressing to have my choices limited that way. There were a bunch of dishes that tempted me but I knew I wouldn’t be able to eat them. As expected, I paid for such a busy day. My stamina was much lower and I felt a bit more fragile over the next couple days. But, it was worth it!
Last Saturday there was a picnic down at the park for our neighborhood's 13 graduating 8th graders. Dash stayed to play soccer while the rest of us came home. Later, he limped in the house with a swollen, bloody big toe and asked me if his messed up toe (from slide tackling someone bare-footed) would keep him from attending camp the following week. He was planning to attend camp in Minnesota for the next 4 weeks. It is a camp that some friends have attended and highly recommend. I took him in for x-rays the next day and they confirmed his toe was broken. Not only that but the doctor thought it would probably need a pin but he said the podiatrist would make the final decision on the treatment. We couldn’t get an appt. until Wednesday so we cancelled his flights and camp. He was pretty bummed. We did get some good news on Wednesday: no need for a pin (just a big boot) and he will probably be healed enough to attend the mid July camp.
Today Carolyn left for 3 weeks as an au pair for a friend in France. Unfortunately, she had some bad luck too. Thunderstorms in Chicago delayed her departure from SFO long enough that she missed her connection in Chicago and they diverted to Minneapolis to refuel and let the storms clear Chicago. So she arrived over 5 hours late and was in a mile-long line waiting to get rebooked as I write this. Luckily I called hours ago and got her rebooked on an Air France flight tomorrow evening but she needed to wait in line to get the paperwork. It helps that her aunt lives 45 minutes from O’Hare so she can stay with them tonight and tomorrow. Her aunt and uncle and cousin Max spent hours waiting for her--they all finally left the airport at 2:00 a.m. What a long day for everyone!
I’ve got an appointment next week with Bonnie’s oral surgeon for consultation on the cracked molar. The uncertainty and potential severity of removing the tooth has been weighing on my mind. It even overshadows the cancer prognosis which seems strange when I think about it. Perhaps it means that I’m more optimistic about the cancer than I thought, although the worst case scenario with the tooth is loss of my jaw bone, so it’s all relative.
I was supposed to see my ENT surgeon next week also but he cancelled due to a need to operate on someone. My check-up needs to be rescheduled, but he has no slots available for the next 2 weeks.
The good news is my diet continues to widen and I can now maintain my weight without drinking any Ensures. That is really nice. I still should drink 1 or 2 a day to regain some weight and I will later but for now I’m enjoying not having them. Maybe not… GOD, how I hate Ensure now!
I made it through both graduations, though I was really tired afterwards and I had to leave each shortly after it ended because I was freezing, even though I dressed like I was in Tahoe in January! Just don’t have any insulation left and the thermostat is still busted. Dashiell’s 8th grade graduation was pretty low key emotionally, as expected. The high school graduation was a different story. As expected, seeing my little girl take one more step toward the edge of the nest was intense. We are so proud of the fine young lady she’s become, but it is bittersweet.
The following week was I was apprehensive about attending the customer mtg in San Ramon due to my lack of physical stamina, but the mtg went really well. I was able to stay through lunch and my condition never limited my participation. It was the best morning I’ve had in months, since I was so preoccupied with the mtg that I went for long stretches of time without thinking about the big C. Kevin invited me to the dinner that evening and although I was concerned about eating in public due to my limited diet, low appetite and really slow eating speed (yes, even slower than normal for me!) I decided, what the heck, I’ll go for it.
One of the reasons I wanted to attend the mtg and dinner was it would be the last mtg for Vince C. and Dick V., who are both retiring in the next few months. They have both been great to work with but more importantly, they are also my friends. So I went home for a nap and later drove off to the restaurant. Yes, that is something new -- I am driving again. I’m still on enough pain killers to knock out a horse but I finally convinced Bonnie that they don’t really limit my coordination. Also, it’s not like I still drive a hot little sports car (ye olde Camry is 16 now). Well, dinner went great too, although toasting with a glass of milk while everyone else was drinking some nice red wine wasn’t much fun. It did get some laughs though! I managed to find courses that I could handle although it was a bit depressing to have my choices limited that way. There were a bunch of dishes that tempted me but I knew I wouldn’t be able to eat them. As expected, I paid for such a busy day. My stamina was much lower and I felt a bit more fragile over the next couple days. But, it was worth it!
Last Saturday there was a picnic down at the park for our neighborhood's 13 graduating 8th graders. Dash stayed to play soccer while the rest of us came home. Later, he limped in the house with a swollen, bloody big toe and asked me if his messed up toe (from slide tackling someone bare-footed) would keep him from attending camp the following week. He was planning to attend camp in Minnesota for the next 4 weeks. It is a camp that some friends have attended and highly recommend. I took him in for x-rays the next day and they confirmed his toe was broken. Not only that but the doctor thought it would probably need a pin but he said the podiatrist would make the final decision on the treatment. We couldn’t get an appt. until Wednesday so we cancelled his flights and camp. He was pretty bummed. We did get some good news on Wednesday: no need for a pin (just a big boot) and he will probably be healed enough to attend the mid July camp.
Today Carolyn left for 3 weeks as an au pair for a friend in France. Unfortunately, she had some bad luck too. Thunderstorms in Chicago delayed her departure from SFO long enough that she missed her connection in Chicago and they diverted to Minneapolis to refuel and let the storms clear Chicago. So she arrived over 5 hours late and was in a mile-long line waiting to get rebooked as I write this. Luckily I called hours ago and got her rebooked on an Air France flight tomorrow evening but she needed to wait in line to get the paperwork. It helps that her aunt lives 45 minutes from O’Hare so she can stay with them tonight and tomorrow. Her aunt and uncle and cousin Max spent hours waiting for her--they all finally left the airport at 2:00 a.m. What a long day for everyone!
I’ve got an appointment next week with Bonnie’s oral surgeon for consultation on the cracked molar. The uncertainty and potential severity of removing the tooth has been weighing on my mind. It even overshadows the cancer prognosis which seems strange when I think about it. Perhaps it means that I’m more optimistic about the cancer than I thought, although the worst case scenario with the tooth is loss of my jaw bone, so it’s all relative.
I was supposed to see my ENT surgeon next week also but he cancelled due to a need to operate on someone. My check-up needs to be rescheduled, but he has no slots available for the next 2 weeks.
The good news is my diet continues to widen and I can now maintain my weight without drinking any Ensures. That is really nice. I still should drink 1 or 2 a day to regain some weight and I will later but for now I’m enjoying not having them. Maybe not… GOD, how I hate Ensure now!
Thursday, June 4, 2009
It's always something!
Well, the ups and downs continue. Dr. Fong looked at my MRI from May 29th and said, “Looks pretty good, especially for only 7-8 weeks out. The tonsil and the lymph nodes have dramatically reduced in size.”
Next I expect to hear back from Dr. Yom and the UCSF Tumor Board, but due to bureaucratic delays in getting the info to them that won’t be until next Wednesday at the earliest. After that I get a PET CT done at 12 weeks out and we will get a new number. Numbers greater than 90% are welcome, greater than 95% especially so. :)
My dentist gave me glowing reviews on the job I’ve done on my dental hygiene but found a dip pit between the gum and tooth at one corner of a tooth that had a root canal last May. This usually means a cracked root and replacement with an implant. Since any extractions expose me to severe bone infections due to the intense radiation that bone has already suffered, an implant is not an attractive option. (Per Dr. Yom: absolutely NO EXTRACTIONS.) We may end up leaving the injured tooth in place and fighting the inevitable bacteria infections with antibiotics for the rest of my life. Not what a person who is looking forward to getting off all of these meds wants to hear.
With Bonnie’s encouragement and help I’ve added more non-liquid foods to my diet. That’s a nice plus and it lets me keep an eye on the status of my taste buds. So far, taste is starting to return except for sweet.
This coming week I need to build up my stamina since I have back-to-back graduations to attend June 11 & 12. That will be a dry run for me to help decide how much of a customer meeting I can attend the following week in San Ramon.
Next I expect to hear back from Dr. Yom and the UCSF Tumor Board, but due to bureaucratic delays in getting the info to them that won’t be until next Wednesday at the earliest. After that I get a PET CT done at 12 weeks out and we will get a new number. Numbers greater than 90% are welcome, greater than 95% especially so. :)
My dentist gave me glowing reviews on the job I’ve done on my dental hygiene but found a dip pit between the gum and tooth at one corner of a tooth that had a root canal last May. This usually means a cracked root and replacement with an implant. Since any extractions expose me to severe bone infections due to the intense radiation that bone has already suffered, an implant is not an attractive option. (Per Dr. Yom: absolutely NO EXTRACTIONS.) We may end up leaving the injured tooth in place and fighting the inevitable bacteria infections with antibiotics for the rest of my life. Not what a person who is looking forward to getting off all of these meds wants to hear.
With Bonnie’s encouragement and help I’ve added more non-liquid foods to my diet. That’s a nice plus and it lets me keep an eye on the status of my taste buds. So far, taste is starting to return except for sweet.
This coming week I need to build up my stamina since I have back-to-back graduations to attend June 11 & 12. That will be a dry run for me to help decide how much of a customer meeting I can attend the following week in San Ramon.
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