Saturday, December 25 2010

It's been almost four years since Ian left us. I've left the story of his six month journey with esophageal cancer posted here in the hopes that others might be helped or inspired. Before he died, Ian asked me to live my life, MY life and doing so has included a continued battle against cancer. He fought so hard and suffered so much but I am determined that his death will not be meaningless. Help me raise the dollar that funds the researcher who finds a cure for cancer. Help me raise money to support free programs and services for cancer patients. Help me fight cancer for Ian and for all the friends and family we've lost along the way to this dreaded disease.

Two years ago, I took a job as a director for the American Cancer Society but I also volunteer for ACS. This year, I've committed to run/walk the Country Music Half Marathon in Ian's name and raise money for ACS and you can help me.

Most of us have been touched by cancer in some way. This is my way of fighting back against a disease that has taken too much. When I cross that finish line, I will be doing it for you and for all the people we know who�ve been touched by this disease. More than 11 million Americans who have a history of cancer will celebrate another birthday this year. Please support me with a donation so that together, with the American Cancer Society, we can help save lives and create a world with less cancer and more birthdays.

Give what you can, if you can and/or help me spread the word. Visit the Team Wallace page here: http://main.acsevents.org/goto/nashvilleteamwallace

Happy Christmas,
Margie

Monday, February 26 2007

In lieu of flowers, I ask that donations be made in Ian's name to one of the following:

MusiCares
3402 Pico Boulevard
Santa Monica, CA 90405

or
UC Regents/Mary Maish MD
c/o UCLA Center for Esophageal Disorders
10833 Le Conte Avenue
CHS 64-124
Los Angeles, CA 90095
(310) 825-6167

Thursday, February 22 2007

It breaks my heart to tell you all that Ian left us this morning. He slept through the night and was, to my mind, very comfortable. He was still fighting I asked him to let go and fly away...and he did.

Monday, February 19 2007

Sunday, February 18, 06:38 PM Margie
The continuing battle with the chest infection following the medical-mistake-induced aspiration is a difficult one. Ian must take breathing treatments to open up the bronchia and allow him to cough up all the junk in his lungs, additionally he must wear an oxygen mask giving him moist, heated air to further encourage him to cough. The breathing treatments include a drug that makes his heart rate go through the roof. The oxygen mask makes him feel claustrophobic and anxious. The doctors give him medications to lower his heart rate but they also lower his blood pressure which is fine at the moment and will only go lower with the drug...making him feel weaker. The only thing that he can have at the moment to help with the anxiety is morphine which makes him groggy, disoriented and suppresses the ability to breathe.

See where I'm going with this? It's a vicious circle in which we are running and all because some nurse made a mistake, a mistake that is costing Ian dearly. I'm tired...he's more tired.

Saturday, February 17, 11:28 AM Margie
When last we left you, dear readers, things were beginning to settle down. While he was still a little disoriented from the ill-advised dose of fentanyl, Ian was tucked in bed asleep under the watchful eyes of our friends on the 4th floor. In the bed next to him was a very nice, quiet little man who was apparently transferred to another floor in the night. His replacement - a fat, obnoxious, loud, bitchy old heart patient - has caused as many problems as the new nurse yesterday. Apparently, his eggs weren't properly cooked this morning and he let loose with screaming stream of expletives that would make a sailor blush, all while refusing to turn the television to a volume lower than a Megadeath concert. He screamed at the nurses, the care partners and person who delivered his food. He screamed so much that Ian couldn't get a moments rest and even worse, began to develop more paranoid delusions (courtesy of the fentanyl patch). There are no other monitored beds available in the hospital and so there is nowhere to move Ian but he is still #1 on the list to move to a private room when one comes available.

I confronted Mr. Asshole when I arrived and his behavior has improved marginally but he's teetering on the edge of a verbal ass-whooping. Meanwhile, Ian is now listening to a little Jobim on the iPod and dozing in and out of sleep.

On the good news front, he seems to be bouncing back from the aspiration. His oxygen saturation rates are back in the normal range and he's slowly being rehydrated. He's still coughing up gastric fluid and mucus from his lungs but he looks better.

I'll update again later today...sooner rather than later if Mr. Roomie doesn't pipe down! ;-)

1140pm update
The girls came through for Ian again and found him a lovely private room on the VIP floor (read: fewer patients per nurse) and relocated him late this afternoon...it was either their affection for him or their fear of me suing them for a major medical mistake or maybe both...anyway, he's got one of his favorite nurses tonight, his favorite care partner and the charge nurse on the floor tonight is his very favorite nurse, Sharon. So all was well when I left...pray for a good night, folks!

Friday, February 16, 09:23 AM Margie
Ian had another aspiration after receiving his morning medications and is now being moved to a different room where he can be monitored. I have a meeting with the doctors this afternoon to discuss the game plan.

430pm update
A small amount of investigation revealed that the relatively new nurse, in who's care Ian was placed this morning, put too large an amount of fluid in Ian's NG tube. She was giving his morning medications and flush the tube to keep it clear then took the tube off suction. Normally, this wouldn't be a problem but she used too much water to flush the tube and when Ian coughed he aspirated some of the fluid.

When I arrived at the hospital, I quizzed her on exactly what happened which lead me to the cause of this morning's setback. The aspiration and resulting low oxygen levels required a transfer to a monitored bed, meaning a different floor. The only room available, I was a semi-private one on the dreaded 5th floor (infamously bad). I insisted they wait until I could talk to the doctors which resulted in a little spat with the charge nurse - I won. Then I went to the charge nurse on 4 East and found him a bed myself, albeit in a semi-private room. So now we are firmly installed back with all of our friends on the 4th floor and they are taking such good care of him.

It's just a shame that one inexperienced nurse could screw things up so badly when just 30 minutes before he sounded great and had just told me how much better he was feeling. Does anyone know where I can buy this guy a break?

Thursday, February 15, 05:26 PM Margie
It's been a rough few days and Ian isn't feeling any better being home so we're headed back to UCLA tonight and will probably start chemo tomorrow. If we do, it will mean no visitors for a couple of days but I'll post it as soon as that changes.

Thursday, February 15, 11:11 AM Margie
It's been 4 days since we brought Ian home. We've managed about 4 hours of sleep each night, none of them consecutively. He coughs, pants, shakes all night on most nights. If he takes the morphine for pain, he has bad dreams and hallucinates, if he doesn't he's uncomfortable. When he can't sleep, we have few options to help without risking over-sedation. He doesn't sleep at night and is disoriented and exhausted all day which makes him ill-prepared to visit with anyone.

Further, as best as we can tell he's been dehydrated. Dr. Wainberg phoned in an order for saline and I ran one bag last night but he felt only a small improvement. The home health nurse that stopped by last night said that all things considered he looks pretty good although his heart rate is still a little high. He had normal blood pressure, temperature and blood sugar. Why are they never around at 3am?

As for me, I'm up and down all night long...up and down the stairs, up and down to give him medicine, up and down to move him in the bed, empty the urinal, cover him up, turn on/off the ng tube suction, etc, etc, etc. I share this not to garner sympathy or solicitations about how I'm doing but to explain why most of your calls are going unanswered and when I do answer I can't talk. Having him home is very difficult, more difficult than I imagined and while I am in the process of getting some help there just isn't enough of me to go around. If I leave the room for too long, he gets anxious and yells for me. I'm afraid to leave the house long enough to walk the dog or go to the grocery and can't get my head screwed on straight for long enough to make a list for anyone else to go. It's a vicious cycle but I'm taking baby steps toward getting things together, it's just taking a lot longer than I thought.

The bottom line is - please just bear with us. We are so grateful for the love and support...I know it has helped Ian so much...and we don't want anyone to think we are ungrateful...we are both just overwhelmed and doing the best we can. So forgive us if we can't talk and haven't been able to accept your offers to visit...we want to more than you'll ever know and we will as soon as we can.

Wednesday, February 14, 09:37 AM Margie
It's been a very difficult transition to home. We're still trying to get settled and comfortable. More later when I have a moment.

Sunday, February 11, 04:01 PM Margie
Well it took 3 doctors, 2 nurses, 2 ambulance guys and 2 nieghbors to make it all happen but the eagle has landed! Ian is tucked up in his own bed watching a football (English not American) match. We're just waiting on the home health nurse to stop by for my training session on all of the IV equipment and then we'll both settle in to watch the Grammys!

Give us a couple of days to settle in before calling as he's quite wiped out and there is still so much to do to get everything arranged.

Saturday, February 10, 04:34 PM Margie
What is it they say, "the best laid plans of mice and men...blah blah blah". Despite our best efforts, we couldn't move the UCLA machine fast enough to secure Ian's discharge today. He's now scheduled to go home tomorrow and will hopefully be tucked up in his own bed by the late afternoon. It does take a lot of coordination to make these things happen and while I was coordinating things at home, nothing was being coordinated at the hospital. Consequently, Ian gets to spend another night in the care of one of his other girlfriends and much to my dismay he doesn't seem to be all that disturbed! ;-)

The biggest delay was making arrangements for the IV antibiotics he'll now be taking. He does officially have a lung infection which was caused by aspirating gastric fluid during Thursday night's "incident". The home health pharmacy will now be delivering Ian's IV nutrition and antibiotics tomorrow and we'll be transporting him home via ambulance (mostly so they can carry him up the stairs!) around midday.

As soon as we have him comfortable, he'd love to visit with some of you who've asked about stopping by and hopefully we can get Project Drum Therapy up and running soon, if only for a while since he'll most likely be returning to the hospital for an in-patient stay for his next dose of chemo. We'll keep you posted and this page will stay current...or at least as current as I can manage!

Friday, February 09, 08:20 AM Margie
Yesterday, Dr. Maish removed Ian's NG tube for a trial run to see if he could cope without it. Last night at around 1130pm, the phone rang at home, it was the doctor on-call for the surgical team. He told me that Ian had vomited in his sleep and possibly aspirated some of the gastric fluids. The three teams were testing him and consulting with one another to see if he should be moved to the ICU and entubated. While he was conscious, Ian was not coherent and they asked me to come to the hospital immediately as the person responsible for making decisions on his behalf. To say that this was terrifying would be an understatement but while he was very anxious I didn't see much difference in his condition from when I'd left just two hours earlier. I asked that they take no action until the blood tests and x-ray results were back and when the arrived my actions were supported. His blood gases were great, his oxygen levels were great, his chest x-ray was not much different from the last one he'd had. The problem with putting someone on a respirator is that it can often be hard to wean them later and I didn't want to take that chance if I didn't have too. It took a lot of convincing but when Ian fell asleep and his heart rate, blood pressure and breathing settled down the "team" decided I was right. It was a rough night and definitely means we won't be taking him home today but I think he can make it over this hurdle.

Wednesday, February 07, 11:20 PM Margie
Bernie and I have spent the better part of two days preparing the house for Ian's return. He will be confined to the upstairs bedroom until he regains some of his strength and so we wanted him to be comfortable. The plan at the moment is to bring him home on Friday. And as I have said to many of you, this indicates nothing good and nothing bad...it's just a change of venue but hopefully the change will bring about some good.

Dr. Maish did another endoscopy yesterday and said everything looked fine. While he still has the drainage tube and will definitely come home with the NG tube in his nose, his outputs have dropped and things seem to be moving in the right direction, if somewhat slowly. Once the ileus, which they now believe was caused by the lymphatic fluid buildup and only exacerbated by the narcotics, clears up he will be able to begin eating some soft food almost immediately. Lastly, the unexplained cough remains and only time will resolve it....apparently.


Monday, February 05, 10:33 PM Margie
While it would mean that he will still have a tube down his nose and one drain, the doctors have begun the process of preparing Ian to come home. They are switching his medications around...ditching the ones he no longer needs and changing the delivery methods of others...all to make the transition easier. If all goes well, and barring any further complications, he may come home at the end of the week. If he does well at home then he may have his next round of chemo out-patient, if not then he'll go back into the hospital.

All of this is not to say there is a change in his condition because we are still awaiting some kind of response. It is only to allow him to be more comfortable and recuperate at home...with Hagi-dog.

Sunday, February 04, 12:45 PM Margie
Up and down. Up and down. One minute we're up the next we're down. Ian's numbers are all moving in the right direction, liver down, white count up, blood pressure down, red count up. The problem is that the amount of fluid in his abdomen is going up and his chest is constantly and rapidly going up and down so the breathing problem is just that...a problem. He's still experiencing increased pain and the medications for pain increase the breathing difficulties and paralytic ileus. He doesn't look better but he says he feels better and he's been at least better enough to fight with me over whether or not the Bears can beat the Colts today (which they can't! ;-) ) but not better enough to sit up or walk in the hall. I used to be such a fan of roller coasters and now...not so much.

Friday, February 02, 04:02 PM Margie
Okay, so whatever it was that you were doing to help Ian...keep doing it, it's working! This morning his white blood count went from nearly zero to the low end of the normal range. Additionally, his red counts are increasing and his liver enzymes are decreasing. His blood pressure is good, his heart rate is good, he's had no fevers and his cough is lessening...and if you ask me, I'd say his belly is less distended today than it was yesterday.

I thought you all could use a little good news...I'll tell you another time about the nurse who gave him Ativan when he requested Valium...sheesh! He's been asleep all day!

Thursday, February 01, 02:51 PM Margie
The neutrophil count hasn't gone any lower but it also hasn't gotten any higher, coupled with the fact that his gallbladder is filled with sludge (another side effect of not actually eating) and is causing his liver enzymes to creep...all in all it's not been a good week.

We're having conversations with the staff about moving Ian to a care unit at UCLA-Santa Monica. I've been told it's a little nicer and would be more comfortable than our current location. Also, because it is a palliative care unit, they have additional resources we can tap like rehab and emotional care. One of the doctors who run the unit has been summoned to meet with us and I will try to tour the unit as soon as possible.

Ian's first question when I told him about the place, given that it is also a place where dying people go for end-of-life care, was "Am I dying?" We don't know the answer. We are still in a holding pattern waiting to see if the chemo works but the doctors say he is not "actively dying" and there is still reason to hope and fight. So we soldier on...hoping and fighting...basking in the love and support of our friends and family.

Wednesday, January 31, 09:20 AM Margie
Ian is neutropenic. Neutropenia is an abnormal decrease in the number of neutrophils in the blood. Neutrophils are the body�s first line of defense and work by going to the site of infections, damage, or inflammation to join "the battle". Neutropenia means the neutrophil count is too low to adequately fight infections, which is a normal side-effect of chemotherapy.

So what does this mean? In the short-term, it means that for the next couple of days, Ian can't have any visitors. He is highly susceptible to infection and we have to be very cautious.

Saturday, February 3 2007

Start at the bottom...



Tuesday, January 30, 08:37 AM Margie

Sorry for the delay, it's been a rough couple of days. Ian has a chest infection of some sort, which is either pneumonia, or he has aspirated something when drinking. His breathing difficulties have affected everything and the pain has returned. I stayed with him all day Sunday, through the night and all day yesterday when he began to looking more comfortable. Hopefully, he will get past this and turn a corner this week.



Yesterday, he had his first acupuncture treatment, which will help with the pain, bowel problem and the accumulating fluid in the abdomen, according to the Integrative Medicine Department. He seemed to feel comfortable during the process and better after so we'll see. He's scheduled for treatment every other day so we should know something soon.



No sign of the NG (nose) tube being removed, as yet but now that he is no longer allowed to drink anything we'll get a very accurate idea of how much fluid is coming out and if the numbers drop we'll know that he's improving. He may have to come home with that tube still in place and on I.V. nutrition but we'll see.



Saturday, January 27, 10:32 PM Margie

It's always a roller coaster...today's ride was particularly up and down. The oncologists decided that Ian was doing well enough to come off the monitors today which basically just means they have removed all of the heart monitor leads from his chest. Later in the afternoon, Ian spiked a fever, which can be very dangerous in a chemo patient. They've drawn blood for bacterial cultures but the results take 72 hours. Then in a turn of events, the team decided that Ian could have his PICC or long-term I.V. line removed...that's one more tether removed! The mouth blisters are already healing and the oncology docs say he'll feel better in a day or two.



Dealing with the oncology team is just so incredibly different from everyone else we see in the hospital. They are so laid back and totally in touch with the little things that make such a huge difference in a day, like having tubes and lines removed and being free to move around more easily. Their goal is to get Ian out of the hospital and back home as soon as he is comfortable and healthy enough so that he can resume a life that is as normal as possible.



Saturday, January 27, 07:21 AM Margie

One dose down. He made it through the first dose with, so far, only one side effect...mouth blistering. The inside of his mouth and lips blistered and turned red but he said it wasn't painful though it looked like it. He had a massage in the late afternoon and it helped him to relax considerably. So, considering the circumstances, he passed the day in reasonable comfort. The fact that he had his favorite nurse, Sharon, only made things better.



Friday, January 26, 08:42 AM Margie

Yesterday was a particularly grueling day. Every step forward was a battle against bad nurses, incompetence, pain and discomfort. The only real joy came during a visit from Dr. Maish. She allowed Ian to switch back to full liquids and watched gleefully while I made him a real cup of tea (PG Tips and everything) he loved every minute, guzzled it down and then in true Wallace style, belched loudly with a huge smile on his face.



Unfortunately the joy was short-lived. Ian had an allergic reaction to something, possibly the transfusion but also possibly the morphine. I watched as his lips and face turned red and began to swell then asked the idiot with the R.N. degree if she noticed anything different about him...she said she didn't. When I pointed out the reaction she jumped to call the doctor. He got a dose of benadryl, which did the trick. After shift change and with a nurse of our choosing, they began Ian's pre-chemo medications, which consisted of more benadryl, a steroid and some pepcid. Then while waiting for the chemo-certified nurse to come we had a "heart scare" in the evening. The monitor room said there were some problems and called the on-call doctor who ordered blood work, a chest x-ray and an EKG, which showed nothing remarkable. I mentioned that there appeared to be a technical problem with the remote box connection earlier but no one paid much attention. His blood pressure and heart rate have been elevated since the last operation (not uncommon) so they were just being cautious.



At 11:15pm the chemo nurse started Ian's first dose of Taxol. She said it was the first time she'd given this particular chemo to a man as it was first usually used for gyno-related cancers. I told her he was totally in touch with his feminine side and explained that there was new data on using Taxol for Gastro-Esophageal cancers. She said it was a good drug...from her lips to God's ears...and we waited. Taxol can cause anaphylactic shock, usually in the first hour, which is why they pre-medicate for those symptoms but fortunately he lay quietly watching the final episode of Dr. Who and she left at midnight.



It will be a couple of weeks, at least, before we know if the Taxol works. When Ian goes for his next dose in three weeks, Dr. Wainberg will add a second drug to the arsenal which will kick even more of the little bastards out of his body. For now, we wait some more.



Wednesday, January 24, 07:24 AM Margie

Yesterday, Dr. Maish completed most of the scheduled tune-up. She accomplished everything she had planned except finding a way to remove the NG tube from Ian's nose which will remain until the intestinal problem is resolved. Additionally, she decided to place two polyflex stents into the area of Ian's esophagus/stomach near the small hole that has yet to heal. She feels strongly that the hole will close and that the stents will help this happen. The bonus is that as soon as the paralytic ileus clears up, Ian will be able to start having soft food immediately and in the meantime he can drink whatever he likes. The intestinal/ileus problem will resolve itself; it just takes time...so we wait. At the moment, he is experiencing a lot of pain in his neck, throat and chest area from the procedure and having a difficult time speaking but this should also clear up with time.



Chemotherapy will begin this afternoon or early tomorrow and he will most likely remain in the hospital until early next week. Next Tuesday will mark two months in the hospital with only those three days home earlier this month. It will be so nice to get him home.



Monday, January 22, 08:47 PM Margie

We may be heading into the home stretch. At some point tomorrow, Dr. Maish will take Ian to the OR for what we are calling the 15,000 mile tune-up...she'll change the plugs and oil, rotate the tires, the whole works. Actually, she's planning to put in a port-a-cath, change out Ian's j-tube for a larger (less leaky) size, drain some fluid from the right side of his chest and lastly find a way to combine his ng tube (the one in the nose) and the drain in his neck into one tube via the incision still in his neck which would be really cool, unorthodox and much more tolerable.



On Wednesday, Zev the newly-dubbed Rock 'n Roll Oncologist (yes he has a new title as he was concerned about the expectations of being called the Wonder Oncologist) will start the chemo and when Ian is feeling up to it, provided there are no complications, he'll get to go home and it's about time too.



Saturday, January 20, 06:18 AM Margie

Well, it only took 30 hours to actually get that CT scan but the good news it that it was remarkable only for what it did not show. It did not show fluid re-accumulating in the abdominal cavity, which is brilliant. It also showed no sign of a bowel obstruction or any twists or kinks in the intestine. It showed nothing that required surgical repair. While she is not a radiologist and hadn't received the official radiology report Dr. Maish feels that Ian's current issue is the originally suspected ileus which is basically the absence of muscular contractions of the intestine caused by months of narcotic pain relief and which just takes time to correct itself.



The bottom line is that while Ian won't be discharged from the hospital for some homebound R & R, he is beginning to feel better despite the tube down his nose...did I mention they put that back in? At this point we'll probably just stay in the hospital until his first round of chemo is completed.



Thursday, January 18, 10:40 PM Margie

Today was just another in a long list of days that weren't Ian's day...if you know what I mean.



After having all of the excess fluid drained yesterday, leaving him thinner but cramped and stuck in bed, Ian awoke with yet another accumulation of fluid. This time the fluid appears to be gathering in the digestive track and could in fact be the suspected blockage or ileus that sent us to the hospital last Tuesday. It took hours for the staff to drain off this new fluid and give him some relief from the discomfort and belabored breathing. The doctors scheduled another CT scan and began to refill him with contrast liquid and then we waited. We waited and waited and waited and waited. For five hours he waited with his tubes no longer suctioning the accumulating fluid and with the added contrast fluid...five hours of cramping and more breathing difficulty...five hours of discomfort...five hours while the CT department was backed up with trauma patients who get first priority (understandably). Finally, we told them to put the tubes back to suction to give him relief and to try again when CT was available. I left the hospital at 10:30pm and he was still waiting but much more comfortably. He instructed his nurse to tell the CT department that he was not available between midnight and 5:30am and they could wait for him. We'll see what happens.



Dr. Maish didn't really have any information to share but indicated that if the CT scan showed nothing particularly remarkable, Ian might still be able to go home for the weekend. If it shows something concerning, we'll know by noon tomorrow. I will try to post something as soon as I know what's going on.



Wednesday, January 17, 05:14 PM Margie

Well it took almost 24 hours to get him in but once they did they removed 5 liters of fluid from Ian's abdomen. He looks so much better and while he's still experiencing some cramping as a result of the draining he is improved from what I can see. To celebrate Ian requested apple juice and has deemed it "nectar of the gods". He can only have small sips as he still has a small hole in his "esophagus" that has yet to close but Dr. Maish has given him permission to drink a little and he is relishing every last drop.



The team will watch him tonight to make certain that the fluid doesn't re-accumulate and if not he may leave the hospital tomorrow. If it does then he will stay and start chemo immediately. Once again...let's all cross those fingers!



Tuesday, January 16, 07:25 PM Margie

This afternoon, we met with Dr. Maish, Becky and Dr. Wainberg to discuss the future.



The immediate future will include a large needle and some ultrasound to drain all of the fluid that has built up in Ian's abdomen. Dr. Maish said that pregnancy was not a good look for Ian so we're going to schedule a delivery! If the parasentisis (that's what the draining procedure is actually called) works and Ian is comfortable and doesn't swell back up we are planning to go home on Thursday. If all goes well, we're going to pay a visit to the NAMM show.



Next week, Ian will come back to the hospital to have a Port-A-Cath surgically implanted in his chest. Following surgery, he will be admitted to the hospital and receive the first dose in his new regimen of chemotherapy. Then it's all up to the gods...



Saturday, January 13, 04:29 PM Margie

Apologies for the delay in posting but the last 36 hours or so have presented us with a lot to consider, the details of which you will shortly understand but suffice it to say it has been difficult.



On Friday afternoon, Ian and I had a long conversation with Dr. Maish during which time she revealed the results of the full pathology report on the tissue and lymphs removed during Ian's esophagectomy. The results were not as good as we had hoped, in fact they weren't very good at all. The report indicates that the tissue removed from the site of the tumor still contained active cancer and that the lymphs all showed live microscopic cancer cells.



Dr. Maish presented our best and worst case scenarios. The best case is that we get Ian started on chemotherapy, the cancer responds well and he spends the rest of his life "managing" the cancer. The worst case scenario is that the cancer does not respond to the chemotherapy at all and we just wait for it to take him. Ian pointedly asked her if there was any hope for a complete cure and she responded that she did not believe that was a reasonable expectation but that if he responded to the chemo he could live for a long time while controlling the disease. She stressed that statistics don't take individuals into consideration and that to her Ian is one in a million and anything is possible but this was not probable.



To say that Ian is devastated would be an understatement and he has vacillated between despair and hope from minute to minute. He still feels that he isn't finished, that there is so much music left to be played and life left to live but he is overwhelmed by the discomfort and anxiety at the moment so it's hard to tell where he will finally land in that spectrum.



The complications that landed Ian back in the hospital now appear to include trouble with the lymphs that remain in his abdomen. Dr. Maish believes that some of the distention he is experiencing is caused by the live cancer cells in his lymphs causing them to weep fluid into the abdominal cavity. The treatment for this is chemotherapy, not sooner or later but now. The plan is to give him I.V. nutrition for a couple of days and then have him start chemo before he leaves the hospital. We'll know more specifically when his oncologist returns to the office on Tuesday. I would guess he'll get at least 5 days of constantly infused chemo and then need a couple of days to recover before being discharged. If the cancer responds then the oncologist will have to devise a regimen of chemo to keep Ian ahead of the disease. It could mean every month, two months, quarterly or bi-annually he would come in for treatment.



In the meanwhile, we are making additional inquiries into the integrative medicine department here at UCLA for alternative and complimentary treatments and will pursue all other options presented to us. If ever we needed your prayers and good wishes, now would be the time.



Thursday, January 11, 09:25 AM Margie

I suppose he was just completely exhausted from our 12 hour emergency room ordeal but Ian slept through most of yesterday afternoon and a large part of the night...which was nice. The feelings of anxiety from the weekend are still present but manageable with a bit of distraction and occasional doses of medication. As of yesterday, he is no longer taking any narcotic pain medicine and while he is somewhat uncomfortable he is coping. The doctors want to observe him for another day or two and then he'll be back home.



Tuesday, January 09, 11:49 PM Margie

Ian was readmitted to the hospital tonight for another complication. He will remain there for at least a couple of days receiving fluids and being monitored. It's not a horrible condition but just an annoying one at the moment. I'll write more in the morning when I can keep my eyes open.



Wednesday 8:24am update - So basically, we're dealing with a complication caused by too much pain medicine. It's a catch-22 because it took so much medicine to control his pain and he was told repeatedly that keeping it under control would speed his recovery but because he took so much for so long he now has a section of his digestive tract that has taken a vacation. The treatment for this most recent complication is lots of i.v. fluids and walking which requires a return to the hospital. The good news is that he's back on the same floor with all of the gorgeous and caring nurses who adore him.



Tuesday, January 09, 08:37 AM Margie

Looks like we're on our way back to UCLA....ARGH!!! For two days now we've been trying to get Ian back on a regular tube-feeding schedule and for two days now he has woken with a bloated and severely distended stomach. Dr. Maish has asked us to go to the UCLA Emergency Room this morning...not to hurry but to go...and request an abdominal evaluation. Poor guy, he can't even buy a break! He says he feels okay but this can't go on. Keep your fingers crossed that it's nothing serious.



Sunday, January 07, 05:31 PM Margie

It was a tough night and a rough day dealing Ian's physical discomfort but we're making progress. No major setbacks just more pain and he's experiencing some anxiety which he says he knows is irrational but cannot control. We're going to try a different tack and see where we end up.



Mutsy & Peter Erskine dropped by today. Peter is trying to get Ian started on what I'm calling Drum Therapy. Ian has lost so much muscle tone that he's basically starting from scratch. Peter brought a nifty little Roland Rhythm Coach and an exercise book. This week, we're hoping to have some of our drum friends stop by to hang out and work out, helping Ian on the emotional and physical road to recovery. We're hoping the drum workouts will have him speeding down that road.



Saturday, January 06, 07:49 AM Margie

We got Ian home yesterday around 3pm after a lengthy departure from the hospital. After waiting for approximately an hour and a half for the UCLA Patient Escort Team who were backed up and running short on wheelchairs, I went to the parking garage, retrieved a wheelchair and escorted him from the hospital myself, much to the amusement of the charge nurse for the day. She completely understood and wished us well.



The journey home, over Beverly Glen, was bumpy and uncomfortable but we made it home without incident. Joey Heredia (Thanks to Joey and all the others who offered to help us!) met us at home in case we needed help getting Ian up the stairs but Ian managed on his own without stopping. The best part of coming home was Ian finally getting to see his beloved Hagi (that's Hagi the dog who was named after Ian's dear friend of Yamaha drum fame who resides in Japan and occasionally posts here - HELLO HAGI SAN!) for the first time in almost a month. Hagi spent the evening leaning against Ian's legs or lying at his feet in complete adoration.



The final challenge of the day, and one of Ian's biggest worries about coming home, was the trip up the stairs to the bedroom which he met without pausing...another victory! He settled in and fell asleep without much difficulty and with the exception of one interruption slept through the night. In fact, he's still sleeping now, undoubtedly making up for all the sleep you never get in hospital.



So what now? Well, for the next couple of weeks we will focus on regaining the lost weight, muscle tone and sense of normality that we've been missing. In two weeks, we'll meet with Dr. Maish for a follow-up appointment to discuss the pathology reports and then with Dr. Wainberg, his Oncologist, to decide on the next course of action. We know that Dr. Maish did a cursory examination of the lymph glands she removed and found live cancer cells which means that Ian will require more chemotherapy. The method, type and timing of the chemo is all negotiable. Ian suspected this would be the case and was not surprised when I told him what the surgeon had found. All in all, he's taking it in stride and is still moving forward bravely and resolutely. I am constantly amazed at his strength, physical and emotional. I know that he derives a lot of that strength from the love and support of his friends and family and I thank you all for keeping him in your thoughts and prayers.



Thursday, January 04, 07:33 AM Margie

The guys from Physical Therapy didn't show so we're experiencing a one day delay in Ian's departure from UCLA which is fine because he felt he needed one more day to prepare and rebuild his strength. I'll take him home tomorrow (Friday) but we'll keep this page up and running to let everyone know how things are progressing and when he's ready to see all of his friends and visitors. We've not reached the end of this journey but the end is in sight.



Tuesday, January 02, 06:22 PM Margie

Happy New Year everyone!



Ian managed to get through the past few days with little victories and a few minor setbacks. Over the past three days he's had eight chest x-rays, a swallow study, two major chest tubes removed and one drainage tube removed from my neck. All of which leaves him with two remaining drainage tubes, a feeding tube, a P.I.C.C. line (semi-permanent i.v.), numerous scars, three healing incisions, various bandages and a sore bum but things are progressing.



Dr. Maish returned today from vacation. The removal of the remaining chest tubes means that the lymphatic duct leak is repaired. The swallow study showed he has a small leak in his new "esophagus" which I am told will heal itself by scarring over. The location of the leak was first indicated during the swallow study this morning when he was placed on a rock hard surface, made to drink barium (the bitterest thing he's ever tasted) while they scanned his chest and watched him swallow. This afternoon, to confirm which drainage tube it was safe to remove, he drank water colored with neon blue dye. The tube, which contained the blue liquid, was left in and will go home with him, the other was removed. Another small complication but only a small one.



It looks as if Ian will probably go home in the next two or three days. The doctors have asked Physical Therapy to prepare him to leave for home focusing particularly on stair-climbing. So tomorrow they will begin evaluating and instructing him should he need it. If everything goes well, he should be well-recovered from the chest tubes and be jogging up and down the hallways tomorrow and we'll be home on Thursday....keep your fingers crossed!



Saturday, December 30, 12:43 PM Margie

This afternoon, the doctors switched Ian from IV nutrition back to tube feedings which is a step forward. They will watch the remaining drainage from his chest tube and if it doesn't change then they will know, for certain, that the surgical repair was successful. If it is then he should have his swallow/leak test on Tuesday which, if successful, means he will be able to have clear liquids by mouth for the first time in a month. If that is successful then the remainder of his tubes should come out and when that happens he will be fit for discharge from the hospital. Lots of "ifs and whens and thens", huh?



Friday, December 29, 07:19 PM Margie

No news is good news I suppose. No new developments, no major improvements and maintaining is just fine with us for a change.

There wasn't much to tell yesterday except that they pulled one of his three chest tubes which provided some relief but most of his unmanageable pain is on his left side at the sight of his new incision. Today, his feeding tube popped out which was interesting but Dr. Mark was right around the corner and stitched it back into place. Otherwise it's been fairly uneventful.





Wednesday, December 27, 03:38 PM Ian

In hospital, sometimes, waking up is hard to do especially after a restless night with little sleep in the beginning due to things like being bathed, having dressings changed, moments of anxiety whilst trying to breathe and various other sundries. Last night was no exception but once I finally went down, I was well and truly down for the count. Which further surprised me when around 6:05am, I was awakened rather abruptly by two of my doctors.



After turning on the lights, they proceeded to divest me of my sleep accoutrement and started peeling off dressings to take a look-see at what was underneath. This was all happening while I was slowing waking up. They discussed between themselves various changes in my physical state, much of which was in a somewhat alien tongue. They had me roll over onto my right side and stripped off the dressings for my new incision, acquired on Saturday night. Upon which they said I was doing really well and promptly left the room, leaving me half-laying and half-sitting, completely exposed, surrounded by tubes and wires, old dressings and disturbed blankets and alone. "No problem," I thought, lying there somewhat naked amidst the gently plowing breeze of the air-conditioner, "I'll just call my nurses on the handy-remote-push-button- pager-thingy. But where was the handy-remote-push-button- pager-thingy? It was somewhere amidst the detritus of the tubes and wires and bedding. Seems like, in situations like these, one can always find everything but for what one is looking. Meanwhile, the soft and gentle breeze of the air-conditioner continued to waft lazily down upon the exposed goose bumps (slowly becoming goose-mountains) of my flesh. Ten minutes went by, the thing to do I thought to myself with gritted teeth, was not to panic. After all someone would be in, in at least half an hour. After 10 minutes I thought, this isn't going to work and I used the time-honored traditional call of people in distress. I shouted the word, "Help!". Nothing but silence. I tried it again somewhat louder, "Help!" The only sound that returned to me was that of the now gale-force air-conditioner and were those flecks of sea water I felt? Well, just one more try I thought, "HELP!" Three times really is a charm. As Nurse Donna, came through the door, asking "Are you alright?" "I am now," I said and with some artful maneuvering I was able to return to a somewhat semi-comfortable state and greet the morning with it's usual swab of ice water upon my fevered lips. I guess we'll all look back on this in 50 years time and laugh...I know I will. And how was your morning? Just a little something to amuse you folks out there.



Love,

Ian



Tuesday, December 26, 01:09 PM Margie

12pm Update: Well, it�s back to the regular floor, into another semi-private room and the struggle for privacy and dignity continues. Ian was a little down this morning but cheered up when he got the news that he was losing one of his drainage tubes...then came the semi-private ghetto room with the roomie watching gameshows, broken lights and garbage cans, the bed tray table with the missing drawer and the missing room phone. We're working on a room transfer but it's not looking good. In the meanwhile, we're in room 412. AAARRRRRRGGGGGGGGHHHHHH!!!!!!!



7:00pm UPDATE:

We love the nurses on this floor! They scoped out the situation very quickly and found us a private room! One more trip to the admissions office to lay down some green and we're now settled into cozy little room 402 and we're even back online! To top it all off, Ian even walked the hallway to get there, that's how much he hated the semi-private room.



Monday, December 25, 07:29 PM Margie

The doctors decided to leave Ian in the ICU for another day, not because he isn't well enough to go to a regular room but because they had the room and he can have his own nurse...so why not stay! He's doing well and seems to improving so he may move tomorrow.



Sunday, December 24, 02:07 AM Margie

I was able to see Ian in the ICU around 9pm and while he was still coming around from the anesthesia, he looked good. Over a period of the next four hours, we managed to make him as comfortable as possible and when he drifted off to sleep I came home to catch a few winks myself.



By all accounts, the leak seems to be repaired. It was in fact a chylothorax or lymphatic fluid leakage from the thoracic duct or one of its main tributaries into the space between the lungs and the chest wall. Dr. Lee, subbing for Dr. Maish who is out of town for the holidays, was able to ligate the major leaks and says that any microscopic ones left should heal themselves but that everything "looked pretty dry". While he was in the operating room, Dr. Lee took the opportunity to do another endoscopy to check the status of the Ian's graft from the the original surgery and reported that everything was healing well.



Ian will now have to remain in the hospital for at least another week. He will be in the ICU for at least another day but may go back to a regular room on Christmas day. Thanks to everyone for the prayers, as usual, and apologies to those of you who had the misfortune to call/ring today while all of the excitement was going on. I am so sorry if I was short or rude, there was just a lot going on and I hope you all understand.



Saturday, December 23, 09:47 PM Margie

Ian is out of surgery and by the doctor's comments it appears to have gone well. I will post something more when I have seen him. Thank you for all the prayers and good wishes.



Saturday, December 23, 06:15 PM Margie

Ian is out of surgery and by the doctor's comments it appears to have gone well. I will post something more when I have seen him. Thank you for all the prayers and good wishes.



Saturday, December 23, 11:04 AM Margie

The doctors are planning to do a CT scan to help them determine the best route to access Ian's leaking lymph duct. Once a plan is in place they will take him to surgery this afternoon to attempt to repair it. In the meantime, they will insert another chest tube on his other side to help drain some of the fluids accumulating. I won't know more until later in the evening.



Saturday, December 23, 08:21 AM Margie

Yesterday was awful. Today isn't shaping up to be much better. Ian is in an incredible amount of pain despite large amounts of oxycodone and morphine.



The doctors had begun to suspect that the leak was a pleural effusion or fluid build up between the chest wall and the lung. The treatment for this involved inserting a chest tube into the area and injecting the pleural space with a talc solution to basically irritate the area causing the pleura to swell and essentially seal the leak. Ian likened this to putting a can of Fix-A-Flat into a punctured tire...he wasn't wrong. The treatment, called pleurodesis, was excruciatingly painful and required that Ian be turned from side to side every ten minutes to spread the talc solution evenly. He was in intense pain during and following since they performed the procedure and remains so this morning. He was scheduled for a second round of the same treatment but the doctor has decided to hold off as he know believes that it looks as if the leak is not pleural but lymphatic (the original but more complicated suspect). Ian's surgeon is out of town for the holidays and will be consulted via phone but what this means in terms of treatment, we don't know yet but it definitely means he'll be in hospital for a while longer.



I know everyone has sent up a lot of prayers for Ian in the past couple of weeks but he could use another round if you have any to spare.



I will post again later if there is any more news.



Thursday, December 21, 04:28 PM Margie

I'm starting to call him Juicy McWallace as he's still got a leak. Tomorrow morning the doctors are going to try to fix it. They've been trying conservative treatments and the leak hasn't responded. If this procedure doesn't work then Ian may need an additional operation but it will wait after his surgeon returns from her trip home for the holidays. In other words, it is not a life-threatening complication but it needs to be fixed and we'd like for Dr. Maish to do the procedure.



Other than that, he's doing well, if not for the leak he'd be home already. He's walking more and may get a couple more drains out tomorrow. The cards, letters, emails and visits have been a great comfort and gone a long way toward keeping him cheered so thanks everyone.



Wednesday, December 20, 08:19 PM Margie

When I rang Ian at 7am all was well (despite his late night visit from Joey Heredia, Dave Weckl and Freddie Gruber). When I arrived at the hospital, a mere four hours later, he looked like he'd been in a war! Super-nurse Sharon said he started out with bang and ended with a definite whimper...or at least with Ian whimpering. It seems that today's lesson is always insure that the start of your walk coincides with the delivery of copious amounts of narcotics. No pain medicine long walks = intense pain far away from your hospital bed. Never mind, by 1pm all was well and pain was managed. We walked again at 3pm with lots of Oxycodone and without incident! The doctors are still trying to stop Ian's lymph leak which is a serious complication but one that they are managing.



Today's good news is a) Ian has internet access thanks to the hard work, persistence and cunning of Sharon, Sean and Sylvia (the crack care team for today) and b) Ian had one of his five drainage tubes removed. Like I said, they're small victories but victories nonetheless. Still we're not out of the woods/hospital yet so don't stop praying and keep your fingers crossed.



Tuesday, December 19, 10:28 PM Margie

Today was a long but good day. Ian had his central line and NG tube (or as his surgeon says "the nose hose") removed and it looks as if he'll get a one or two of the remaining drains removed tomorrow. He slept like a baby last night is his luxurious private room...no beeping, no pinging, no alarms, no chatter...just peace and quiet like a hospital should be.



The bad news is that Dr. Maish says he'll be in the hospital into the weekend possibly longer but we'll see. Christmas at UCLA...shouldn't be too bad because Tim Landers brought Ian a lovely Christmas tree and lights for his room today. I hope Santa will find us...oh wait! he already did!



Merry Christmas everyone!



Monday, December 18, 02:07 PM Margie

Well, we made it to a regular room, albeit a semi-private one. He's doing as well as can be expected and still taking tiny baby steps forward. More later.



6:00pm - We are moving to a private room! WAHOO!!!



Sunday, December 17, 05:34 AM Margie

15 hours after moving Ian to the more private room they informed us that they needed said room for more critical patients and moved him once again to a small curtained room with a challenging neighbor. Beeping all through the night, this patients alarms sound at an alarming rate, how are patients to heal when they can get no sleep. Still, Ian seems to be taking it all in stride and continues to make slow and steady progress. He sat in the chair for a total of 5 hours yesterday and seems to have no trouble standing for several minutes while they adjust all his various wires and tubes. Both of which were goals set by the surgeon...he cleared them with a lot of extra room.



Just so you all know he hasn't lost his sense of humor, Ian told the nurses that he looked like a map of the London Underground...they didn't get it...he would then have to explain the joke about all the tubes with a roll of his eyes. The only thing sadder was that I keep having to explain to them that he is not in agony when they quiz him on his pain levels. The hospital uses a 1 to 10 pain scale and when he says it's "a 7 right now but my pain goes to 11" they begin to look worried. Still, it's a good sign to me.





Friday, December 15, 07:40 AM Margie

Late last night they moved Ian to another ICU on the fourth floor. He now has a room with a view and no neighbors on the other side of a curtain. The nurse who took over this morning told me that while he's running a fever, he's doing well and was sitting up in a chair watching television when I called, which is one more small step towards the front door of the hospital.



330pm - It looks as if he will be in the ICU for the weekend...too many tubes and wires for a regular room but he's still improving slowly.



Thursday, December 14, 07:01 PM Margie

It's been a challenging day. Ian is still in the ICU and will probably remain there for another day. He's doing well despite a few small hiccups, including a small surgical procedure bedside in the ICU! So still no visitors but maybe at the weekend. I've said it before, cancer is a mean roller coaster!



Thursday, December 14, 06:07 AM Margie

Checked in via phone with Julian, Ian's ICU nurse for the night, to receive more good news. Ian had a good night, managing to "sleep like a baby" for about four hours. He's still having some pain management issues but the doctor who visited this morning from the surgical team told Julian that he'd probably be moved to a regular room later today. He's right on track, moving forward slowly but steadily.



Tuesday, December 12, 10:34 PM Margie

Dr. Maish's exact quote was "he sailed through surgery like a 10 yr old!" She was obviously quite pleased to be able to complete the surgery laparoscopically which will result in a shorter recovery time in the end. The big test will be this evening so let's hope for no complications tonight.



I was able to see him at approximately 5pm this evening in the ICU and spent several hours with him. Eventually, he was conscious, alert, quite jovial and upbeat, even cracking jokes despite being in a lot of pain. He will be in the ICU for tonight and probably Wednesday night then move to a regular room on Thursday. Based on the many calls and requests, I know that there are many who would like to visit but I ask that you check with the visitation status at the top of the page before traveling to UCLA. As soon as he is up for visitors, I will let everyone know.



Tuesday, December 12, 12:55 PM Margie

He's out of surgery and Dr. Maish says it was a success. He'll be in the ICU for a couple of days and when he can see visitors I will let you all know.



Monday, December 11, 01:51 PM Margie

Ian's surgery is schedule for Tuesday, December 12, 2006 at 7:30am. I will post an update on his condition as soon as there is news.



Sunday, December 10, 03:57 PM Ian

I'd just like to thank everyone who's sent their prayers and good wishes for me. My surgery, as you all know, is on Tuesday. I believe they're going to start pretty early so get up earlier than usual and start praying!



Seriously, thank you all so much. It's humbling to know there is so much love out there. I'm looking forward to getting this behind me and making music in the new year!



Love to you all,

Ian



Saturday, December 09, 07:04 AM Margie

Alert the media! Ian ate solid food!!!



Last night, we were joined at our favorite sushi bar, Ahi Sushi, by Bernie, Mary (a.k.a. Dr. Maish or Ian's surgeon), Becky (Clinical Coordinator for Dr. Maish) and Terri for some delicious dining! After one small misstep involving some Ponzu sauce, Ian enjoyed an entire order of Yellowtail sashimi and a bowl of miso soup. It was so fantastic to see him eating something that couldn't be slurped! Mary commented on how much better he looked and reconfirmed that we're a go for surgery on Tuesday. She even mentioned that she had performed the same procedure yesterday and the "8-hour" operation went so well that it only took 3.5 hours so all things being equal, he could be on his way to recovery sooner than we expect both literally and figuratively. We are so very lucky to have these wonderful people in our lives and we're lucky to have all of you as well. I told Mary that when she feels the hand of God on her shoulder on Tuesday that it would be the result of all the support, prayers, good wishes, white light and love of all of our many friends and family. Thank you everyone.



Thursday, December 07, 10:04 PM Margie

Today's news was very good. The last of Ian's blood tests came back and the results indicate there is no reason he can't have the surgery on Tuesday. He seems so relieved to have a solid date and has begun to talk about all the things he wants to eat as soon as he's able...it's a strange list including steak pudding with mushy peas and chips; mashed potatoes and gravy; lots of SUSHI!; In 'N Out burgers...the list goes on...none of it sounds very healthy but considering he's not really eaten much for the past 2 1/2 months I figure he's entitled to whatever he wants! Plus...I've got to figure out how to get some of the weight back on him...even though he's telling everyone that he "looks like a rock star...from the neck down", he's a little too thin for a guy his size but we're working on it. He's managed to keep the 11 lbs on that he gained after they put in the feeding tube and feels stronger every day so it's all progress.



Thanks to everyone for all of the calls and emails and messages. And a special thanks to Joe Testa and all of our Yamaha family members who are mustering their support and prayers for Ian. We are both so very touched by all the good wishes and love...it really is amazing and we are so very grateful.



Monday, December 04, 03:00 PM Margie

The news is mostly good today. While he is still slightly anemic, all of Ian's blood counts look pretty good. We're adding liquid iron supplements to his "diet" now and he had another shot of Aranesp today so keep your fingers crossed that we can get the numbers up before surgery.



Sunday, December 03, 04:20 PM Margie

Nothing dramatic to report today. Ian's very tired, he's had two bad nights with little sleep and a lot of reflux. Nothing seems to help relieve his discomfort. He's still trying to eat, if you can call coffee and soup eating; and he takes at least one mile-long walk daily. Tomorrow we'll check in with Zev the Wonder Oncologist, he'll get blood drawn and get a shot of Aranesp to keep his red blood count moving in the right direction. Hopefully we won't get an surprises and he'll still be on track for surgery on the 12th. It can't come soon enough for Ian, he's really getting fed up with all of the discomfort and so desperately wants to get well so he can play and eat again.



Thanks for all the lovely messages, emails, phone calls and visits...they've made a world of difference.



Friday, December 01, 09:48 AM Margie

180lbs...Hooray!!! Ian has gained 11lbs in just under two weeks! Won't Dr. Maish be pleased!!! And the infection in his arm is nearly gone! He still feels rough but he's getting better day by day.



Wednesday, November 29, 07:14 PM Margie

One quick update...the surgeon had a scheduling conflict and consequently has changed Ian's surgery date to December 12th...one day sooner!



Today was a little better than yesterday. Ian walked twice, a mile each time and only took one pain pill. Eating has been difficult due to an increase in reflux activity but he keeps trying.



Tuesday, November 28, 08:23 PM Margie

Ian has decided to go public. He's posted a blog on the Crimson Jazz Trio site and as soon as possible, we'll post it at his site...currently experiencing technical difficulties over there.



The best part of doing it was the emotional release. He's still not let everything go and a lot of what he posted was what I wrote below but he shed some much needed tears and told me how completely overwhelmed and grateful he's been for the incredible outpouring of love since this whole journey began. It was a rough day emotionally but physically he's doing great. He walked a mile today and ate when he could. He visited with his stepdaughter Amy and her daughter the incredible Izzy who does an amazing impersonation of Minnie Ripperton...or a dolphin...I can never tell the difference. Later in the day, Tim came by for a visit and we watched a dvd of the Yamaha Groove All Stars show from January. I love watching him watch drummers...he marvels and loves them all so much!



Tomorrow, Tim will return and work will begin on the new CJ3 cd mixes...nice to have music around the house again.



His arm is already improving and Becky from Dr. Maish's office called to say she wants blood work next Monday. I doubt this means the surgery will be sooner but you never know. We're still planning on December 13th.

Tuesday, November 28 2006

You may have noticed that since the beginning of August, my journal entries have been non-existent. I think it�s time to explain:

About a week before I left for my European sojourn with CJ3, I started having difficulty swallowing food. Prilosec cured this problem albeit only temporarily. On August 10th, 2006, I was diagnosed with esophageal cancer. This was to be the start of what has become a long journey. And I�m still only halfway through.

On Sunday, August 7th, I arrived home from England at 6pm in the evening. All week, Margie had been helping my mentor, Freddy Gruber prepare for his impending carotid artery clearing surgery. She accompanied him through various doctor appointments, lawyer visits, banks, etc. She even retyped his Trust. Little did she know she'd soon have to go through it all over again with me. On Monday morning at 9am we picked Freddy up to drive him to the hospital. While he was in surgery, Margie and I, along with our friend Edy, Joey Heredia and Fred�s friend Cindy, went to the cafeteria for a bite to eat. When my first bite became stuck in my chest, Margie looked at me and said, �That�s it, you are going to the doctor�. The problem was I hadn�t found a new doctor since my insurance changed and you know how hard it can be to get a new-patient appointment. Edy suggested we call her doctor�s office to see if they had anything available. When Margie called the receptionist indicated that it might be hard to get in but she persisted and said we�d take anything. The receptionist said, �Tomorrow at 3pm?� That was miracle #1.

Following my physical, my new physician said I was in great shape but the food-swallowing thing was a red flag. He wanted me to see a gastroenterologist and recommended one who happened to be in his building. Margie and I decided that instead of phoning for an appointment we�d just go straight there. The receptionist said, �His 4 o�clock just cancelled, you could see him now if you want.� Miracle #2. It was the only time in my life that I�ve had two rectal examinations in the space of one hour. He told me that he wanted to perform an endoscopy, that he happened to be doing procedures the next day and that he could fit me in before he went to the Dodgers game. Miracle #3.

It�s hard to explain how I felt initially, when given the diagnosis by the doctor, over the phone on Thursday. For around 24 hours, it felt like a death sentence. I tried to keep it light and make sick jokes about it but inside, I had absolutely no idea what was going on.

The next day I had a CT scan which revealed that the cancer was localized and didn�t appear to have spread�a reprieve! Miracle #4. The next thing was to do something about it, this where a series of minor miracles occurred. Margie took the bull by the horns; it was amazing to watch the professional, no-nonsense, business-only side of her take control. And I honestly believe I wouldn�t be around now but for that.

Margie called everyone and anyone who might know what to do. The phone was constantly in use with not only that but having to tell friends and family. The physician knew a guy at UCLA who recommended a surgeon, Dr. Mary Maish. The gastroenterologist had a recommendation for a local surgeon. Edy had a contact at Stop Cancer!, Armand Hammer�s cancer research center. They said that the top two research facilities for esophageal cancer on the west coast were both in Los Angeles. They recommended Dr. Jeff Hagen at USC and Mary Maish at UCLA. Margie called for appointments but they were 4 and 6 weeks away, respectively. Margie�s next call was to her brother-in-law Stacy, a chef in Nashville. Normally you wouldn�t call a chef for help with cancer, unless it was on South Park, but Stacy is the executive chef for the Vice Chancellor of Health Affairs at Vanderbilt University & Medical Center. Stacy was just on his way to deliver breakfast for the department head staff meeting. He spoke with the Vice Chancellor who asked for Ian�s medical records. Margie emailed them immediately, Stacy delivered them to the meeting and the department heads reviewed them. The information was passed from hand to hand; to make a long story shorter�.Dr. Tom Cleveland at the Vanderbilt Voice Center knew both Dr. Hagen and Dr. Maish. He made calls. Suddenly, my appointment with Dr. Hagen was the next day and Dr. Maish would see me at the beginning of the following week. Miracles�more miracles.

Dr. Hagen was impressive in a dry, no-nonsense, almost militaristic kind of way. After after leaving his office, I felt confident that he was a good surgeon. Before making any decisions, I decided to wait to see Dr. Maish, although I was leaning heavily toward giving him the job. The appointment with Dr. Maish was extraordinary. In walked a 30-something, blond, hot-looking babe, she pulled up a chair in front of me, sat down knee-to-knee and said, �So are you THE Ian Wallace? The drummer?� To which I embarrassedly mumbled, �well�I suppose so.� Turns out she�s a huge music fan, into King Crimson, and told me that if she hadn�t become a surgeon she would have been a jazz trombone player. What are the odds?!?! Bye Bye Dr. Hagen!

At the suggestion of my friend, Tim Hinkley, Margie set up a web page to keep my close friends and family updated which chronicles the past few months, which have been surreal to say the least. I�ve had four endoscopies, a stent placement, three CT scans, two PET scans, four kinds of chemotherapy, five weeks of radiation, a feeding tube, innumerous punctures from various hypodermic needles, weeks of vomiting and diarrhea, passed weeks without food, had pains from remarkable places, all this and I still have my hair which is sort of like someone telling me that they wouldn�t take any money from my account when I don�t even have a bank.

The upside is �is there an upside, absolutely�I�ve heard from old friends, old wives, people I never thought I�d see or hear from again, reconnected with my lovely stepchildren, and the outpouring of love and above all, time from everyone leaves me breathless. There are so many people that I can�t possibly name them. I never knew�

The Crimson Jazz Trio will be on tour next spring, most likely in Europe and the UK just as soon as my surgery is complete. I am looking forward to being cured and getting back on the road.

So now I�ve decided it�s time to share a little bit of the journey with everyone. And below are excerpts from Margie�s journal. It�s important that you all know that this was preventable. Please read carefully and if you have these symptoms or know someone with them, PLEASE, PLEASE SEE A DOCTOR IMMEDIATELY.



August 14, 2006

Ian has, as most of you know, esophageal cancer located at the base of the esophagus just above the stomach. It is adenocarcinoma and requires surgery followed by chemo and/or radiation. We saw his physician today and unfortunately he hadn't received copies of all the official reports (although we tracked them down after leaving his office...I'm a pit bull about this stuff!) so he couldn't tell us much more than we already know. Ian completed a couple of new tests and was cleared for surgery and we've received referrals to two different surgeons, one is local (i.e. in the Valley) and one is at UCLA. We've made appointments for the next two Mondays and asked to be put on the waiting list for any cancellations but it is a list... Tomorrow I will send all of Ian's information off to Nashville to be reviewed by one of Vanderbilt University's Vice Chancellors and his staff in the hopes of a recommendation or two and a second opinion or three. We're calling in all the favors we can get in the hopes of getting in a little quicker but this part may take some time. However all suggestions and recommendations are welcome. If you know someone, by all means tell me...

Just to prove that he's feeling okay, Ian ate a healthy dose of sushi following his appointment (thanks Kenji & Jimmy) and is ensconced on the sofa to view a movie recommendation from Bernie (thanks Bernie!) and then we'll start again tomorrow.

We'll keep you posted in the coming days to come and thank each of you for your love and support.

Margie & The Gimp



August 15, 2006

Well, we got a consultation at USC for tomorrow with Dr. Jeffrey Hagen. Dr. Hagen is the Chief of Thoracic/Foregut Surgery at USC Medical Center. He focuses on diseases of the esophagus and lungs. So we've got the top guy at USC. Ian and I spent 30 minutes on the phone with his nurse practitioner today and she gave us a realistic view of the process which looks to be even more challenging than we had suspected. We'll fill everyone in as soon as we have the game plan but special thanks to Edy and her connections at Stop Cancer and Stacy and his connections at Vanderbilt who managed, respectively, to get us an appointment and then have that appointment moved up three weeks to tomorrow.

Thanks to each of you for thoughts and prayers.

Margie & Ian



August 21, 2006

Hey everyone! Sorry for the delay, I know many of you have called and we've not been able to reply yet but here's what we know as of today:

Ian has picked a surgeon. He has chosen Dr. Mary Maish at UCLA. We were both comforted by her honesty, frankness, thoughtfulness and consideration but the thing that put her over the edge is....wait for it....she's a jazz trombone player!

While Ian has a couple more tests to complete, Dr. Maish is feeling (and that's the operative [no pun intended] word - feeling...who ever met a surgeon with feelings!?!?) very optimistic and positive. Upon leaving her office, Ian was visibly more comforted and positive. We should have a treatment plan to share with everyone in approximately a week following an endoscopic ultrasound and a PET scan. Keep your fingers crossed for us and know that we appreciate all of the love, support and encouragement.

Love,

Margie & Ian



August 26, 2006

Hi everyone,

Here's the latest...following a week of testing, the news wasn't as good as we had hoped. While we haven't received the official staging, Dr. Maish (surgeon) tells me that it's most likely late stage two or early stage three cancer but given the manner in which Ian has presented, it appears to still be highly treatable. It's just going to take us longer to get there. So this is the plan:

Next week Ian will have his third endoscopy. We'll go to UCLA for this one as with the second one because the drugs were apparently better! :-) The intention is to fit him with a stent to hold the esophagus open while treatment commences as it is currently very narrow. Then he will be scheduled for 4 weeks of daily radiation for 10 minutes each visit and 4-6 weeks of chemotherapy which should be able to run concurrently. Following radiation and chemo he will require 2-4 weeks break to rebuild his red and white blood cells and platelets. Surgery will be scheduled following the break at which time he will be in hospital for 2 weeks. Then they tell me that his recovery time is a minimum of two months.

So what's the good news? Well, while we are still awaiting the results of the PET scan...the Endoscopic Ultrasound showed only one enlarged lymph node and the tumor appears to still be localized in the distal (lower) esophagus. That said, we still have to wait to see if the PET scan shows any activity anywhere else. For those of you who don't know about PET the patient is injected with low-level radioactive glucose and then scanned. The glucose will circulate throughout the body and basically move toward the areas in the body where the cancer is. How does it know? It actually goes to the areas with the highest metabolic rate. Cancer has a very high rate and will light up like a Christmas tree. Could we get additional bad news? Yes we could but we don't expect it. I don't know about you but I think we've had enough for this year!

Lastly, Ian is still feeling physically well. He has a little trouble swallowing but the stent will resolve that. He is moving through the typical stages of serious illness and is currently in the pissed off stage. You all know Ian, he's not an angry guy but this week has been tough. He's not been terribly good for company or conversation which if you called and got no response...you now know why! That said, this morning he shows signs of simple weariness. He's wiped out from a week of testing as we did a lot of pre-surgical stuff in the hopes of possibly getting him in for surgery next week which we now know won't happen. He's emotionally drained and a little down but promised me that he won't give up and intends to keep fighting. Music is what will keep him going and he intends to play as much as possible so don't hesitate to call if you need him. Dr. Maish says he can do what he likes as long as he feels up to it, including tour next year with the CJ3...just no gear humping!

Each of you and many others have called to see how you can help us. Right now, there's not much to do but please know that we really are very grateful for your offers of love and support. The time will come when we really need help and don't worry...I'll ask! For the time being just give him a little space to acclimate to the bad news and send your prayers, good vibes, white light and love. He needs it all.

Email tends to be the best way to reach him, so write him directly or you can just hit reply as he has access to my email as well. He's not answering the phone much when I'm not around as it's really stressful for him to explain everything so leave a message if you get the voice mail particularly if you have your caller ID info blocked...we will get back to you as soon as we can!

As always, suggestions and advice are welcome...please let me know if you have any questions....and thanks for everything guys!

Love,

Margie & Ian



September 2, 2006

Hi everyone,

First, let me apologize for not writing with an update this week but there wasn't much to tell. The word from those of you who called is that an update is needed so here it is:

On Thursday, Ian had another endoscopy with an esophageal stent placement. This was the third endoscopy he's had in two weeks and with infinite wisdom, the anesthesiologist decided to change medications and for the first time Ian received Versed & Demerol in lieu of the previously-used/successful pairing of Versed & fentanyl. Now I generally subscribe to the (pardon the bad grammar) "if it ain't broke, don't fix it" theory but not this guy apparently. Ian had a bad reaction to the Demerol and has unfortunately had a slow recovery from this procedure. The nausea and vomiting may have caused the beginnings of a case of pneumonia but he's on antibiotics now and while they too are a challenge to his compromised digestive system, they appear to be working. He's experiencing a lack of appetite, is tired and sore, but mostly just disappointed with his progress. Needless to say, his medical charts now reflect an allergy to Demerol and we won't have this problem again.

Coming up this week, he will have the initial consultations with his selected radiation and medical (chemo) oncologists (sorry to disappoint the guys but we've eliminated Dr. Lewinsky from consideration so we won't have any cigar stories for you!), which means we should have a schedule for his radiation/chemo regimens by late Friday or early the following week. As soon as we know when, where, how etc. I will keep you all posted, until then, let's just say that no news is good news.

The many calls and messages he received this week have cheered him up immensely. Thanks to everyone for their continued love and support, it means the world to us both, truly!

Much love,

Margie & Ian



September 9, 2006

Greetings everyone, here's the latest:

Ian has steadily improved since the esophageal stent placement and Demerol disaster. He's managed to avoid pneumonia and is slowly regaining his appetite...which is nice! He even ate sushi last night...had few problems as a result in the night but most were related to the fact that we ate too late and I don't think he'd change anything if he had to do it over again...you all know how he is about his sushi and the toro really was incredible!!!

We met with the radiation oncologist, Dr. Withers on Wednesday and then he snagged an appointment for his "simulation" that the same day, which is just fancy way of saying special testing to determine the treatment area for the coming external radiation therapy (Ian calls this his ray-gun zapping). He had yet another CT scan to determine the exact place in the body where the radiation will be aimed. The area was marked with Ian's very first tattoos...four tiny permanent dots the size of freckles. Radiation treatment begins on September 18th. Ian will be zapped for ten minutes each day from Monday through Friday for four and half weeks. They tell us he may experience some nausea but for the most part radiation is painless.

On Thursday, Ian met with Dr. Wainberg, the medical oncologist to discuss his chemotherapy treatment. Chemo will run concurrently with the radiation treatment and is designed to complement it, making it more successful and further shrinking the tumor prior to surgery. It will also treat any stray microscopic cancer cells lurking anywhere else in his body. Ian will be treated with two cancer killing drugs, either Cisplatin or Oxaliplatin, which is essentially platinum and 5-FU which would require a pump or Xeloda which is 5-FU in tablet form. The pump/catheter method of delivery would require that he have a portacath surgically placed and then he'd have to wear a pump the size of an 80's era Walkman...not a pleasant thought for this iPod-style boy! The pills have a slightly elevated percentage of potential side-effects but he seems determined. The second drug would be administered bi-weekly (weekly if he chooses the pump) in the oncologists' office via IV for approximately 3-4 hours...so he'll go in for three doses during his five weeks of chemotherapy.

Following radiation and chemo, if his blood counts are sufficiently high, he could possibly have surgery as soon as the first week of November but we'll have to see how things look then. Following surgery it looks like a two month recovery and then all being well...off to tour in Europe in the new year with the trio...so get busy Jeff!

As always, thanks for the good wishes, vibes, thoughts, love, support and friendship...we truly are so grateful.

Much love to all of you,

Margie & Ian



Wednesday, September 20, 2006

Ian started treatment on Monday and was so relieved to just be doing something that he had a smile on his face for the whole day. Radiation was very quick and painless, followed by a visit with the radiation oncology doctors and some blood work for the chemo department. His chemo nurse was fantastic and moved Ian quickly through the process. He only has three chemo appointments at UCLA for IV therapy and this one lasted just over 2 hours. He read and listened to his iPod, using his new Shure noise cancelling earphones...thank you Ryan!...to block out the beeping and voices around him. If you don't have any, Ian definitely recommends these things, they worked like a dream.

The chemo department may be the most depressing part of the entire process. It's not so much the treatment area as the friends and family members of patients in the waiting room. It's just awful, they are loud, inconsiderate and so self-involved. It's a miserable place to be. Once you get in the back it improves but it's still challenging. The nurses and staff go to great lengths to make everyone as comfortable as possible but it is chemo.

We met a lovely woman named Nancy who shared the chemo pod with Ian. The pod consists of two large recliners and a couple of chairs overlooking a small paved garden area. Nancy had 5 people with her and was quite distressed but looked stunning in her Jackie O glasses. Her nurse discussed her case openly and loudly, and Nancy became more and more distressed. She wanted to go to another facility and talk with them there. She didn't like the nurse and wanted to see her doctor. He came and they talked. Her family tried to cajole her into beginning treatment. Ian turned up the headphones and I went into the garden to give them privacy. I have to say that this process can be very dehumanizing at times. Later, we chatted with Nancy and met her friends/family. Ian explained that it was his first day as well and told her how much better he felt after getting started which seemed to convince her. She settled in and they ran her IV as we chatted. Nancy has an inoperable brain tumor and has been through other treatments but was just beginning her chemo...my heart just breaks for her. When Ian's IV finished, we said our goodbyes and packed up only to be stopped by Bo, one of Nancy's friends, outside the treatment rooms. Bo asked if we would mind if Nancy scheduled her appointments with Ian's as she said it wouldn't be so bad if she could pass this time with us. We exchanged phone numbers and appointment times and told her that if she couldn't time the appointments together that we'd meet her for lunch before or after. What a strange feeling that on day one of treatment, we could offer some comfort to this gentle woman in her situation.

Ian's treatment will proceed over the next 4 1/2 weeks as he takes the remainder of his chemo orally and returns to UCLA twice for IV chemo. Every weekday he goes for radiation which takes only minutes and the rest of the time, he's just living life. He's working, playing, writing and reading. Thusfar he's doing well and we hope that won't change. I'll keep you posted.



Monday, October 02, 04:11 PM

Well, the birthday party on Saturday was a smashing success and Ian cleaned up in the areas of Scotch and chocolate! Just in case you are worried, his surgeon attended the party and encouraged him to drink to put on more weight! He thoroughly enjoyed himself and was completely exhausted on Sunday but not so tired that he couldn't make his scheduled appointment for sushi lunch - a luxury he is only allowed the day before IV chemo.

So how is he? Well, to be honest, he's a little tired but mostly because he's been doing too much, all in the name of good fun. He's also in a small amount of pain but the doctor's have prescribed morphine (sustained-release) and vicodan for acute pain but he enjoys the effects of neither. We've enquired about medical marijuana to address the nausea caused by the morphine and his lack of appetite. We have only to await a response from his oncologist tomorrow so we'll see. Otherwise, he's doing remarkably well. He keeps moving forward, determined to beat this and that's all anyone can ask. As always, the love of his friends and family has made the biggest difference to him and I can only ask that you all keep it coming!

This week is the beginning of his third week of treatment so we're almost half way through the chemo & radiation. All things considered, it's going well.



Saturday, October 14, 05:36 AM

Apologies for the lapse in updates...the past week or so have been variations on the theme of Ian feels awful and cancer sucks...so not much to report.

He's having trouble sleeping, he's most often in pain and a state of discomfort but all of that is to be expected. It just means the chemo and radiation are doing their thing. His last round of IV chemo is this coming Monday and the last chemo pills and radiation are on Wednesday. This is going to be a hard week so he's requested that we call in the big guns and so my mother Tillie arrives tomorrow morning to help us out. For those of you who don't know her, Tillie worked for Ian's physician in Nashville and was his nurse. Mom has agreed to come for a week to help take care of him during his last few days of this round of treatment. She is a most welcome addition to our home.

The plan now is to get through this week, and then do all the appropriate tests to reevaluate his case then we'll get him feeling good again and probably go in the hospital for surgery in mid to late November.

We'd like to say a quick thank you to Mutsy and Peter Erskine who visited this week with an astonishing variety of Japanese treats, which have stimulated Ian's appetite and helped to relieve his nausea...not to mention the good company and love which cheered him up no end! Who knew that miso soup, rice gruel (apparently it tastes better than it sounds) and barley tea were just the ticket!?! Well, Mutsy did of course...thank you so much.



Tuesday, October 17, 03:23 PM Margie

Ian's last dose of IV chemo was Monday and with some careful planning and attention to detail, it went as well as could be expected. He met with his radiation oncology team and they are pleased with his progress. He had his blood drawn and while the results show that his red and white counts went down, it was only slightly and his platelet count actually went up. We can only attribute this to his change in diet and again thank Mutsy Erskine for her japanese barley tea, rice porridge, aloe vera juice and miso soup!

Today, Ian met with his oncologist who was also impressed with how well he's doing. He said that most patients in Ian's condition have to be hospitalized and he was pleased that Ian didn't have to be! Yippee!!!

The plan now is to have another PET scan in two weeks to see how the radiation and chemo worked and check his blood counts, and he is currently scheduled for surgery on November 15th. We'll keep you posted!



Sunday, October 22, 09:29 PM

Will it sound like a broken record if I say that the past week or so have been variations on the theme of Ian feels awful and cancer sucks? Yes? Well, that's pretty much the name of the tune. He finished his chemo pills and had the last radiation treatment on Wednesday and has spent the last 5 days in bed basically. The doctors say this is to be expected as the cumulative effect of the chemo and radiation have totally kicked in. He's having trouble sleeping, eating, breathing...basically everything but we hope this will change in the coming days. Keep your fingers crossed!



Thursday, October 26, 07:57 AM Margie

We may be on the road to temporary recovery! For the first time in 2 weeks, Ian asked for solid food last night. Seems he'd been craving yellowtail sashimi all day and that's exactly what he ate...a whole order plus miso soup! Combined with the fact that we may have finally found a way to manage his pain issues, things are looking brighter.

The next step is another PET scan on November 2nd and then depending on the results, he is tentatively scheduled for surgery on November 15th.



Friday, November 03, 09:50 AM Margie

I guess I spoke too soon. Ian spiked a fever last Sunday which has remained throughout the week. Blood work and labs didn't find an infection but the fever is persistent. Consequently, he's off the food again and the pain has returned. The PET/CT scans were completed yesterday and we hope to receive the results sometime today but it may be Monday before we know if there is any improvement. The best case scenario is the the chemo/radiation worked and the cancer has left only necrotic tissue. The worst case is that the chemo/radiation had no effect and the disease has continued to grow. The mostly likely scenario is that the tumor is smaller and the treatment went as we expected. Keep your fingers crossed!



Friday, November 03, 05:41 PM Margie

The news was good. The tests showed that there is less uptake of the radioactive glucose which indicates one of two things, either the cancer is all gone and the dead and/or radiated tissue is still there or it's mostly gone with some evil pockets of resistance. Either way it was a very good result. Now if we can get Ian to regain some of the 35-40 lbs. he's lost then he can have his surgery to remove the damaged esophagus and get back to playing music!!!



Monday, November 06, 08:52 PM Margie

This stuff is like a roller coaster ride...one minute you're up and the next you're upside down. Here's the latest:

Ian's big surgery has been postponed until November 29th. Tomorrow, Ian will be admitted to UCLA hospital. Dr. Maish will be putting in a feeding tube. She and Dr. Wainberg have decided that while he's there, they'd like to have him receive a few days of IV fluids and another dose of IV chemo. Dr. Wainberg thinks that we should throw everything we can at this while he's waiting for surgery and that keeping him in the hospital for a few days is a good opportunity to really make certain this stuff is as dead as possible before Dr. Maish goes in to remove the tumor/espophagus. Thank God for Mary, Becky & Zev, they really are working so very hard to make certain he sticks around for a long, long time.



Thursday, November 09, 12:50 AM Margie

No problems with the feeding tube placement and they have just put in the IV for his chemo. Dr. Wainberg and his team have tweaked the chemo plan to keep him from having severe nausea and he will now only get two days instead of the original five, which is nice...or as nice as chemo can be. They feel like there is most likely still active cancer in the tumor and want to down-stage or shrink it as much as possible before surgery. Not exactly what we had hoped but to be expected. The biggest challenge, right now, is the emotional stress and strain but Ian is soldiering on. Thanks to everyone for all of the love and support.



Saturday, November 11, 01:03 PM Margie

Good news...every day Ian gets better and stronger and juicier! He's being pumped full of chemo but also with lots of nutrition and fluids. The doctors say he can go home tomorrow, he could have gone home late today but he felt like he needed one more day. He finished his chemo at 4am this morning and they removed that IV and as soon as he finishes the current bag of fluids they will pull out that IV and he'll have the use of his arms back! Yippee, he's almost untethered.

Thanks so much to everyone who has called or written. We appreciate all the love and support.



Wednesday, November 15, 08:10 AM Margie

Ian came home from the hospital on Sunday. We've got him all hooked up at night getting his nutrition and slowly he's beginning to feel better.

On Monday we had an appointment with Dr. Wainberg, the wonder oncologist, for Ian's Neulasta shot (Lorna - note the plug!). Neulasta boosts the white blood cells and helps to prevent infection. He had two shots in the hospital before leaving and his white blood counts were excellent. While we were there he got a little light-headed and so they popped him into a wheelchair, wheeled him right into the treatment room and gave him two liters of saline...he'd gotten a little dehydrated again. The saline, some dilaudid and a little nausea medication perked him right up and he practically skipped to the car!

Yesterday, we finally had a visit from our home nurse. Not her fault it took 3 days as she's from the second company they sent to visit us. It amazes me that Home Health would have left him for three days with no nutrition but I figured out how to hook him up on Sunday and get him started. Anyway, Sandy his home health nurse says he's doing well and that she will only need to check in weekly...which is a good sign.

And that's the latest! Thanks again to everyone for the continued support and love!



Sunday, November 19, 07:39 AM Margie

I don't know what to say but didn't want to go too long without saying something. Thanks to everyone for the messages of support and love.

Ian continues to struggle forward, it's not easy and he's very low at the moment. Currently, he chooses between drug-induced catatonia and uncomfortable clarity. More and more he's choosing the clarity but it does come at a price. He's still not eating, hasn't had anything in almost two weeks. He's receiving all of his nutrition and most of his hydration through the feeding tube, along with most of his medications. He's fed up, angry, depressed, weak, has no appetite, nauseated most of the time and exhausted.

I know this doesn't sound good and it isn't but it changes with the hour. No one explained the roller coaster, no one mentioned that the victories would almost always be accompanied by more challenges. You want things to be different? Just wait a minute...they will be.

There are good times, moments when he looks bright and healthy and comfortable, when he isn't retching, grimacing or panting with the pain and nausea. There are moments when he's focused and determined, when he makes plans. My favorite ones are when he's just drifting off to sleep, right after I give him his pain medications. He starts to hallucinate, usually he's drumming. He smiles and his hands hold invisible sticks. Occasionally, I'll ask him what he sees and he says "music"...then he falls fast asleep...for a while. Sleep usually doesn't last long, maybe four hours. Then he wakes for hours, struggling with the symptoms of chemo, radiation and waning medications. Usually he'll go back to sleep around 7am, following his next round of crushed pills. Throughout the night, his feeding pump whirs and clicks, hopefully providing him with most of what he needs to heal enough for surgery.

We see the surgeon a week from tomorrow, the final determination will be made then. Until then, fingers are crossed and little prayers are whispered minute by minute.



Thursday, November 23, 09:53 AM Margie

Like I said, wait a minute, things will change...

Two days ago, he slept almost 10 hours straight. He had a great day and did some work in his office. Yesterday was tough, he sat around and watched Eddie Izzard and Ricky Gervais dvds while visiting with Pat and Greg but then last night was rough. He was up and down all night but woke feeling well, drank a cup of coffee and ate almost a full serving of Malt 'O Meal with butter and honey for breakfast. There seems to be little rhyme or reason and it's impossible to replicate the good days but today seems to be one of the few. We may venture out today to visit with our friends at Edy's house for a few moments.

10pm

The visit to Edy's was brief but great. After, Ian set a very nice pace as we walked the dog around the block. It's so great to see him moving around more even if there is so much less of him. The total weight loss is 48 pounds but hopefully we're reversing that now and will continue to do so after the surgery.



Monday, November 27, 12:23 PM Margie

The surgery has been postponed again, this time for at least two weeks but possibly longer. While Ian is improving daily, he has an infection in his arm from the i.v. infiltration and still needs to gain a few more pounds but even Dr. Maish was impressed with 7 pounds gained in a week. She's asked that Ian exercise more, cut out the pain meds and keep gaining weight while we get rid of the infection.

So he is now tentatively scheduled for December 13th. The only decision to make now is which operation to have...the one that is less invasive and has a lower risk of side effects doesn't allow the surgeon to remove the lymph nodes from the chest area vs. the more invasive one that does but also breaks a rib and cuts through muscles and has a longer recovery time. He is leaning toward the less invasive surgery.

We'll keep you posted.

Saturday, August 19 2006

Monday and Tuesday were spent in rehearsal at Tim�s. Chris had a difficult time initially (this isn�t easy stuff folks!) but things improved as we went along. Wednesday night we played at La Ve Lee. A good place for a warm-up show. Much better than doing it on the first night in Spain. But in doing so it did create a rigorous test of endurance. We had a 7am flight the next day, so after packing up following the end of the show I got to bed at 2am and got up at 4am. Tim picked me up at 4:30 and Margie drove us to the airport. This really is the only time to take the 405. It was almost pleasurable. Almost.

Our first flight was to Miami. I don�t know why American Airlines picks on travelers to Miami, but this was one of the worst flights I�ve taken in recent memory. The space between the seats was even tighter than usual. My knees were pressed tight up against the seat in front of me, and that was before any �comfort� adjustment from that passenger! And the actual width of the seat was so small I had to empty my pockets and take off my trousers before I could sit down. Well not really, but it was torturously cramped. The flight was around five hours and lasted for several weeks. No food was served.

We arrived at Miami airport facing a three hour layover. Miami airport makes third world establishments seem like the Ritz Carlton. No stores apart from the odd cart bits, no real restaurants-only bad fast food, the only semi-decent place (and this is a stretch) was a bar that sold hamburgers and pseudo Cuban sandwiches. Still the mojitos were quite good.

The 8 hour plus flight to Madrid was, if anything, worse than the flight to Miami. We all agreed that these two flights used old planes and I suspect that the designers of the seating worked from templates used in the Wizard of Oz. About six hours in, the devil on my cramped shoulder said,

�you�re getting too old for this�.

�No, no! Said I. �Get thee behind me Santa!� (I was going through a dyslexic moment).

Still I swore there and then that after this trip I would never fly American again.

Did I mention the white and muted toned sludge that passed for the meal?

Upon arrival at Madrid, we cleared customs and got a pretty decent (comparatively speaking) Iberia flight to Bilbao where we were met by some lovely people and whisked off to our hotel (an hour away) in San Sebastian. Almost 24 excruciating hours after we�d left.

Friday, August 18 2006

There�s an ancient Chinese thingy; I don�t know if it�s a saying or a motto or someone giving someone a blessing or a curse. More likely a curse. So for now I�ll call it an ancient Chinese thingy. It goes: �May you live in interesting times�. Or words to that effect.

Well I guess someone, somewhere must have laid it on me, �cause these sure are interesting times. Of late, some of them have been extremely good and some extremely bad. Very little in between. Consequently I haven�t had much time to blog as some of you will have noticed. Every time I approach the computer the daunting task of getting up to date becomes dauntinger and dauntinger as time goes by. So I�ve decided to just do a little at a time until I get caught up. In doing so this will take me back to the 8th of July or thereabouts and I�m going to have to be a little free with the dates. Anyway, here goes�

July the 8th was, if I�m not mistaken, a Saturday. My friend, guitarist Bernie Larson whom I played with in the early eighties in David Lindley�s band: El Rayo-X, had asked me if I wanted to accompany him on cajon for his sister�s surprise birthday party in Simi Valley. Sounded like fun to me so I concurred. A few days before the date, he called me up and suggested we ask Jorge Calderon, my neighbor and the bass player with El Rayo-X to play also, and that I switch to drums. I thought it a great idea, so that Saturday night El Rayo-X had a reunion. The last time we had played together was around 1982. It was great fun, we played some of the old stuff plus some soul and reggae covers and I hope we do it again.

Whilst this was going down, my friend, pianist Brian Trainor was, unbeknownst to me, also in Simi Valley, up from Oceanside attending a dog show with his Mrs. Kelley. Brian is the Trainor from our CD �Take a Train� which sold about three copies in the late eighties. After the show, he and Kelley were driving back home when Brian complained of feeling dizzy. Kelley leaned over to him, put her fingers on his neck and jokingly said,� you must be bad, I don�t feel any pulse�. At which point Brian jerked once and died. An aneurism. He was fifty-five. A great jolly bear of a man with a wonderfully infectious laugh. He called me �E� and I�m going to miss him.

On the 16th Chris Ishee and family arrived from Santa Fe, Chris to rehearse with Tim and myself for the upcoming CJ3 Spain and Italy shows. His wife is called Carrie and his daughter is called Teslin. Teslin is named after a lake in Alaska where she was apparently conceived. It�s probably fortuitous she wasn�t conceived by Lake Titicaca.

Saturday, July 8 2006

The time she ees flying.

Since last post mucho go on. First I type weeth Mexican accent.

There that�s better. OK so I haven�t posted in a while and I�m getting complaints. Right Joe?

Well in a nutshell:

Jody flew in to LA and we recorded the second CJ3 album to be called; �The King Crimson Songbook Volume Two�. How original! We are very pleased with the outcome and we have a few surprises planned for this 70 minute plus album. I�ve been listening to it a lot, especially when I take Hagi on his 70 plus minute walks in the morning. And I�m liking it. Whilst we were doing it we did a gig at La Ve Lee and my friend video director extraordinaire Nigel Dick came and shot some footage, some of which he�s going to edit into one or two of the new tunes for a DVD. He also came by on the first day of recording and shot us setting up and talking for a DVD for Shure microphones which is supposed to come out at the next NAMM Show in January.

Now here�s the thing.

We have some up-coming dates starting with La Ve Lee on the 19th and then Spain for 2 nights followed by Rome and Milan. Jody has for a long time had another, non-musical, personal commitment that he can�t get out of. So I�ve asked my old friend from Santa Fe, Chris Ishee to sub for him on these dates. Chris is a great player and a funny guy to boot. Chris toured for a long time with Maynard Ferguson and he swings hard. We�re lucky to have him and I�m looking forward to getting musically re-acquainted with him. However, Jody is our pianist and has commited to be with us apart from a little thing around September, (I think he�s getting married or something). He and his future bride Claudine are even kicking around the possibility of relocating to LA, which of course, Tim and I hope they do, but that�s still a little ways off. But whatever happens, Jody is it and we�re ecstatic that he�s on board. Not only that but we now have US representation. We are officially with The Agency Group who also represent a little outfit called King Crimson. So now we have management in the form of Jeff Neben and a US agency, plus European representation. Just like real professionals!

Plans are afoot. And we are serious folks!

Wednesday, June 7 2006

The show in Wilmington was most enjoyable. It was relaxed and fun. I was a little apprehensive about how we�d play, being that we hadn�t played with Jody since the CD release party last November, plus no rehearsal. But these guys are professionals and with a few run-throughs at sound check, plus a discussion of the forms during dinner, we managed to come up with something pretty decent. Imagine how it would be if we toured on a regular basis! Well, that is the plan. And hopefully by the fall, we�ll be doing just that. Plans are afoot! The people in Wilmington from the promoters and staff, to the hotel employees, to the stage crew to the audience, were all really fantastic. We were really made to feel welcome.

The logistics of putting this band on the road are much simpler than say, the Schizoid Band.

First off, we are a trio.

Second, at least at this stage in our development, we take very little in the way of equipment with us. I take a cymbal bag and my kick pedals, Tim takes his bass and that�s it. The promoters supply us with the rest of the equipment; Tim a bass amp, Jody a piano and myself a drum set. Granted it�s not the ideal situation, but being a Yamaha endorsee I always get a Yamaha drum kit and I can always rest assured that they�re going to sound good and they will always be playable.

Third, there�s only three of us. This hopefully, will make it possible to come away with a profit. The cost of hotels and travel are less expensive than a full band with a tour manager and sound engineer. The only set-back here is that Jody lives in Nashville, and we are working on changing that.

Fourth, Tim and I are what you would call �seasoned professionals�, (no, it�s not that we have salt and pepper beards), we have been on the road for decades and have encountered just about every situation imaginable, from humping our own gear and traveling in a van, to having the A Class treatment: private jets, five star hotels and never having to lift your suitcase! So we�re used to dealing with most situations. And Jody, whilst not as experienced a traveler as us, may as well be, the way he carries himself.

Compare this to the Schizoid Band. The biggest problem we have is the fact that two members live in England, one splits his time between Germany and England, one lives in New York and I live in Los Angeles. This is a very large problem for several reasons; coming up with the funds to transport the various non-resident members to London and then providing them with accommodations for several weeks of rehearsal, not to mention getting together to write and record.

Being a rock band we need to be supplied with more equipment, various synths and amps etc. Plus it�s very important to have a really good sound engineer to travel with us, one who knows the intricacies of the various songs. Instead of just three people we have a minimum of seven, (if we set up and break down ourselves), the group, plus a tour manager and the aforementioned sound engineer.

The last tour we did, which is now over two years ago, was in the US. Just eight dates. And whilst the audience that was there were extremely enthusiastic, the venues weren�t sold out and in one case, hardly attended. This was due to several factors; one being that it was at best, under promoted and the second being that, maybe there just weren�t enough people who gave a shit. I don�t know. The same thing happened when we played England. On these tours at least one member lost money.

Now having said this, I love playing with the Schizoid Band and I�m pretty sure the others do too. But unless there�s a situation were there�s a billionaire Arab oil sheik who�s a Crimson fanatic that would like to invest in putting this band on the road and also giving us the wherewithal to write and record new material, it just ain�t gonna happen, at least not in the near future. We�re simply old geezers that still love playing music and we certainly aren�t rock stars with country estates and royalties invested in apartment blocks and office buildings. We�re just trying to make an honest living doing what we love. And with most of us, just like most of you, it�s month to month.

I read some of the postings on the various websites concerning the band and also CJ3 and I wonder if some of you realize just how damn hard it is to be a musician. Well let me tell you, for the dedicated ones it is a vocation. And whilst we may luck out occasionally with something financially lucrative; most of the time it can be a day to day struggle. For example, at Projekction, Gilesfan wrote:If Ian Wallace is too busy with the Crimson Jazz Trio to play with both bands, perhaps somebody else should join (or, uh hum, re-join) 21st Century Schizoid Band? I�m not too busy to play with the Schizoid Band. The reasons are above and if after reading this you still don�t get it, than I suggest you up your medication.

When Robert Fripp originally asked me to start posting a diary on the DGM site, he told me that one of the intentions of these diaries was to demystify the musician and the musical process. Does this help?