Still Tired....

Keith continues in a pattern of good days/bad days with fatigue the key feature of the "bad days". It is difficult to know if his weakness and exhaustion are lingering effects of the radiation, a result of the very high dosage of the lastest round of chemo and other meds, or simply a factor of the disease. Either way, we find that there is little we can do on those days beyond "getting through".

Now that radiation is behind us, we have turned our attention to some major work on restructuring Keith's medications. First, we are attempting to elimate the steroids which have been essential up until now to curb the inflamation and swelling associated with surgery and radiation. Other brain tumor patients have warned us that this is a slow and difficult process. In the initial stages, we are finding this to be true. Although Keith has not experienced any headaches or discomfort, he has had 2 major incidents of "break-through" seizures both of which coincided with a day in which we had stepped down the steroid dosage. Because of the negative effects of long term steriod usage we are cautiously continuing with this process with the goal to have him weaned entirely by mid-January. In the meantime he takes Fosamax weekly to counteract the bone loss which is associated with the use of these steriods.

In addition to the gradual removal of the steriods, we are also working to swap out the current anti-seizure medication for another. The current med (Keppra), like most of the anti-seizure drugs, creates a significant amount of fatigue and fogginess. We also learned this week that another of Keppra's specific side effects is that it promotes irritablilty and anger - both of which are clearly evident -- and both of which are certainly very unwelcome at this stage. Keith has been on the maximum dosage of Keppra - which seems to translate into maximum side effects -- yet in spite of the dosage, he continues to have some seizure activity. Our approach to changing out this drug is also very cautious: we will gradually layer in the new drug in addition to the current regime -- and only remove the old drug once the full dosage of the new has been attained. This is expected to be a 3-4 week process so we will need to work around the side effects for a bit more time.

In addition to work on the medications, the whole family has begun to focus more attention on taking up the opportunities offered by the support groups and couselors available to help us through this difficult time. Both Sammy and I have experienced "hit the wall" episodes - very common for caregivers - in Sammy's case quite devasting. We are fortunate to have wonderful and understanding guidance available through the Wellness Community and through some counselors who specialize in working with cancer patients and their families. These are well-worn paths and there is much comfort to be found with others who are working through or have worked though similar experiences. Keith has also found supportive help from the community of other cancer patients - and we all exchange notes on doctors, medications and the various challenges of managing the health care system to best advantage.

Calls and visits continue to be welcome - just bear in mind that there are some days when Keith is "not up for much". I can't begin to know how we can express our thanks to all who have given us so much during this challenging time - yes it is cliche, but there just aren't words. Thank you all.

Finally, for those of you who can make it, we will see you at Catalina's on Thursday night!

Good news!

This morning's MRI showed that the tumor has not grown over the last 2 months - in fact, it seems to be a little bit smaller - at least based on a comparison of the before and after MRI's. The doctors are very pleased.

So....pending results of blood work, we will start on the next round of Temodar this evening. This course of the chemotherapy will be a bit different from the last: we will go 5 days at a much higher dose than we used before - and then we will break for 23 days. At the end of the 4 weeks, we will do another MRI and assess our progress. If all continues to go well, we will repeat the Temodar at yet a higher dosage in the 5 days on, 23 days off mode. This loop can be repeated for as long as the Temodar continues to be effective...

Wheatgrass juice tastes great

...as long as you add an apple and a carrot and some fresh ginger. Yes, we are now among the official juicing crowd having purchased an Omega 8003 and identified a steady source of wheatgrass (Whole Foods). We are having fun experimenting with various concoctions - most of which are designed to mask the flavor of the wheatgrass and pack in as many beneficial nutrients as possible. Since Keith is not allowed any sugar or honey, apples are a mainstay for delivering "sweet" results. Samantha thinks we should grow our own wheatgrass....perhaps the next adventure.

Keith is doing quite well, although he has been very fatigued. Monday, December 4th is the last day of radiation - a makeup day for Thanksgiving which we skipped. The effects of the treatment will continue on for a few weeks, and then his energy level should begin to pick up. For now, there are some really really good days -- and some days of utter body numbing exhaustion. This is a completely normal response to radiation - particularly brain radiation - so we shouldn't be discouraged.

Tuesday morning we will have an MRI followed by a consultation with our neuro oncologist. This will be our first look-see at what we have accomplished so far. If the tumor is stable or smaller, we will start up a new course of Temodar (we have been on a 2 week hiatus) and do another MRI in a month. If we are not happy with the current results, we will swap to an alternative protocol - potentially avastin combined with another chemotherapy.

Occupational therapy continues weekly and we think we are beginning to see some results. Keith has regained part of the strength in his right arm and he seems to be having less problem negotiating the computer keyboard. (Fewer typo's, right?) We added massage (thank you Kerry) over the last week and Keith has found this to be particularly helpful - a real plus in this last stretch as we finish out the 6 weeks of radiation.

Other news on the home front: in case you haven't heard, Tzara has been diagnosed with a mean case of mono - she has been sleeping as much as (or more than) Keith. We are looking forward to having her home for the winter break so we can get her healthy again. In the last few weeks, we have enjoyed a succession of visitors from near and far and this has been very cheering. Thanks to all; we continue to be overwhelmed by the warmth, generousity and strength we have received from so many.

Finally, a bit of "shameless parental self promotion": Sammy and her band will return to Catalina's Bar & Grill (jazz club) for one night (Thursday, December 21) - if you will be in town, Keith would love to see you there.