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 do 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.
Margie & Ian
August 26, 2006
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!
Margie & Ian
September 2, 2006
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!
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.
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.