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Gary update,
09 December 1999 I've been receiving mail and calls from people recently, wondering what's up, since I haven't updated everyone lately. Consider it as "No news is good news". Unfortunately, today I have bad news.
The CT scan which was taken last Monday shows, we were told today, that the last 6 weeks of chemotherapy have had absolutely no effect on the tumour in Gary's chest. If anything, the report reads, it may be increased in size. Dr. Bramwell has little hope for us, however, has scheduled Gary for another two rounds of a different chemotherapy and another CT scan to check on its progress in a further 6 weeks. This drug (CDIT, I think it's referred to) has little documented activity against this type of tumour, but it is the only other drug she is aware of that has any activity at all (as I understand it). She gives it a 1/100 chance of having any effect, but we all know that Gary beats the odds usually, anyway...so, keep your fingers crossed. This chemo will start tomorrow at 10:00am, and will be done on an outpatient basis (he'll come home right away afterward). Its characteristic side effects include more severe nausea than the others, breathlessness, and it's hard on the veins. Fortunately, it will be given through Gary's portocath in his chest, so the latter concern is nullified. It also is less toxic than the previous drugs, so that's good news, too. However, the ultimate prognosis has been reduced from two years to "weeks to months", again, depending on the effect this different drug has.
We asked about other treatments(RITA, Stemcell transplants, Crosurgery,
and Photodynamic therapy), all of which were nixed for one reason or another.
We also asked about surgery again, which is also not an option due to the
location of the tumour. We asked about clinical trials. Dr.
Bramwell runs the clinical trials for sarcoma in Canada and says there
is not enough of an occurrence of this particular type of cancer to even
collect a sample to run a trial with, that's how rare it is. In case
you don't know, what Gary has, Primitive NeuroEctodermal Tumour (PNET)
is in the family of Ewing's Sarcoma, which is typically found in children.
Even in the U.S. the clinical trials in this area have an age limit assigned
to them of usually around 30 years old. So, not only is the occurrence
of this specific cancer rare, it is even more rarely found in adults.
Therefore, there is very little factual
knowledge about it.
Um, what else would you all want to know?
Kevin, Gary's brother, is visiting with us until Dec16th. His presence helps keep Gary's spirits up. Gary has been very quiet since we were told this morning, but that's just him. I think he's doing extremely well, and I am very proud of him. The kids are, for the most part unaware of much of what is going on, although I have been trying to keep things uptodate and simple for them. So far no questions. Only once Zach asked me to play blocks with him because "daddy can't because he's sick". I registered Suzannah today to start Junior Kindergarten in September...wondering if Gary would ever see her go to school...anyway, that's more than anyone wants to really hear, so I'll stick to the facts.
My parents arrive next Wednesday, and we are looking forward to seeing them.
We had some tremendous support the last little while from those of you who are truly friends and I'm sure Gary would join me in thanking you all, and you know who you are, for your warm wishes, company, and caring. This is so not do-able without you.
I'll let you know how the treatment goes tomorrow.
Stand by.
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Gary update,
11 December 1999 Just a quick note to let you all know that the effect of the last treatment has sofar been very minimal, insofar as side effects...usually, after a treatment the first day is ok, the second day is less okay and the third day brings on the worst. However, even though it's only day one, he tells me he's feeling very well, better than usual. The treatment actually took 5-6 hours to administer, as the nurses were kinda new to the dosage, the treatment, and the toxicity/rate of flow into the bloodstream. This was a surprise to all of us, but he came through it well enough... Today, after a good night's sleep, he watched Suzannah at skating lessons, and then he and I went to the mall to do some christmas shopping. His breathlessness was significantly reduced today, happily.
He now has a Handicap parking pass...which today totally embarrassed me. I kept telling him, the least he could do was limp...here it is christmas, no regular parking spots to be found anywhere near the mall, and he parks (legitimately insofar as he has a pass!) in a handicap parking spot and saunters into the mall like nothing's wrong. Me, I wanna dig a hole and crawl into it somewhere!
So, smile for us, the day was good! Stay tuned for more...
Barb
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Gary update,
22 December 1999 All is well with the Bud-meister these days. He's even been in to see everybody at work, write a few memos, harass a few members, you know, being the Gary everybody's expecting him to be... He has caught a cold, but the antibiotics kicked in nicely and, although his cough is still hanging in there, he's feeling and looking very well.
Next chemo is scheduled for Dec.30th (Thursday) and if he copes as well with it then as he has this time around, he will be ringing in the New Millenium with lots of energy and lots to celebrate.
I'll take this opportunity to thank you all again for your kind wishes, warm thoughts and prayers. We are truly grateful to have been blessed with so many wonderful and supportive friends as you. As you can see by the number of names on the address list, there are a great many people who care so much for Gary and his family, it's really overwhelming. It is the Season for celebration, and Gary and I will be celebrating how lucky we are to have you all rooting for him.
Wishing you all a very Merry Christmas and a Happy and Healthy New Year!
All our Love,
Barb and Gary
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Gary update,
31 December 1999 Gary went for another check up(including a chest xray) and chemo treatment yesterday. The oncologist, Dr. Bramwell, read the xray and reports that it indicates there has been no change since the last chemo treatment. Whether this means the latest chemo is slowing things down or has put it in reverse we don't know, but in any case, the tumour has not increased in size which is good news.
He had another chemo treatment yesterday and feels quite good. It seems this drug is easy for him to cope with as he suffers few, if any, side effects after having it. We are now talking about a week in Nassau, seeing as how he feels so good. Sun and surf and a week on the beach sounds good right about now. This would take place probably within the next two or three weeks, as we need to fit it in to the chemo schedule.
Dr. Bramwell has indicated that she would like him to take this particular chemo one more time (next one around Jan.20th) and has scheduled a CT scan for Feb7,8 or 9th, 2000 to see what its effects are after approximately 12 weeks. So, keep your fingers crossed!!
With that, Gary and I would like to wish everyone a very Happy New Year and a safe crossing into the New Millenium.
Love,
Barb
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Gary update,
15 February 2000 Went to see Dr. Blackstein at the Mount Sinai Hospital in Toronto today. And, boy, was it a long day!
We stopped at the London Health Sciences Centre on our way to Toronto to pick up all the CT scans that Gary has had done. These we took to Dr. Blackstein who advised he needs a day or so to go over them to make a more informed assessment. However, he has been speaking with the Oncologist in London, Dr. Bramwell, so already knows the general background of Gary's case. While we were in the waiting room, I took out the CT films and compared the same view of the two most recent films (Dec6 and Feb8). I know nothing about reading CTscans, but it was obvious even to me that the tumour has grown considerably since its recurrence. According to the radiologist's notes on the film's envelope, the tumour is now 9cm x 13cm x 21cm large (It started at 8cm x 10 cm x 13cm).
We found Dr. Blackstein to be positive and approachable. He believes that Gary has had the best first line therapy, but that the recurrence occurred despite the best efforts. He feels that the drug that Dr. Bramwell has already said Gary would try next, called (ph)vinarelbene, is the best one to try at this point. It is a derivative of the periwinkle flower (trivial bit of information, but it stuck in my head). This drug has been found to be active in lung and breast cancer and has some recorded activity against "small round blue cells" (oncological jargon for the type of cell that the sarcoma is made up of, I think). While Gary is taking this drug he will, we are told, suffer no side effects and his hair will grow back. (Does this mean the gotee he is sporting will grow into a full beard???) He will be taking it on a weekly outpatient basis. The goal is to shrink the tumour down enough in size for a chest surgeon to remove it surgically. Dr. Blackstein feels this should have been done the first time, and that perhaps Torontonian chest surgeons are more "adventurous" than those in London. He will be consulting with chest surgeons he is associated with to determine how much the tumour will have to shrink before surgery could take place. I am assuming this potential surgery would be done in Toronto. But we'll cross that bridge when we get to it.
The CT scans will be explained by Dr. Blackstein to Gary and Shauna, and possibly myself, on Friday morning in Toronto. I'll let you all know what is said at that time.
Meanwhile, Dr. Blackstein's examination of Gary's current physical state shows that his heart is not getting enough blood into it to pump the blood to the rest of the body properly ("obstruction of the inferior vena cava") a condition which is evident by the distended veins in his neck, chest and arms, and also by the headaches he sometimes gets. His voice, as we know, is lost due to the tumour paralyzing the nerve attached to the vocal chords. He has wet retinas but no adema (what this means, I don't know, I just wrote it down) and his breathlessness is worst when he is lying flat or on his left side and is due to the increasing size of the tumour. He's lost about 20 pounds since the end of October, mostly due to how sick the first drugs he took in chemo made him, and since then, due to his not being able to eat as much. He is also constantly aware of the potential of choking very easily on his food. This also has to do with the increasing size of the tumour.
Otherwise, he's in great shape. This visit has left his spirits a little higher, and despite being quite tired, he insisted on driving both to and from Toronto today. A good sign, I think.
More on the weekend.
Barb
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Gary update,
19 February 2000 Yesterday (Friday) we were supposed to go into Toronto to see Dr. Blackstein again and he was going to go over the CT Scans with us and tell us about what the chest surgeons had to say.
Well, I didn't go in because someone had to stay with the kids. Gary didn't go in because he had a rough day on Thursday. We had planned that he would go in on Thursday night to avoid the traffic into the city on Friday morning. THen, the storm was blowing in and we thought it was a real good idea to avoid Friday morning driving.
Long story short, Shauna agreed to go in our stead and get all the information. She called shortly after 0900hrs with the news that Dr. Blackstein didn't remember who she was, let alone the fact that he had an appointment with her. He hadn't looked at the ct scans and hadn't talked to any chest surgeons. I am sure glad we decided not to make the trip into the city!
He has agreed to see Shauna Wednesday afternoon to go over the films. So, I'll let you know if there is any news then.
Meanwhile, Gary has had his first dose of v....bene, the new chemo and there's not really much to tell. He felt lousy Thursday because he didn't take the tylenol he needs to keep the pain manageable. Once he took the tylenol he felt better. It made me see how dependent is in on pain medication.
Today we had lots of visitors and lots of phone calls (must be Saturday). He commented to me tonite that it is nice when people continuously drop by or call because it makes the time go by faster. He basically sits infront of the tv for the most part of the day, so feel free to call and visit!! I suggest calling before visiting, as he may be napping...no big deal.
Anyway, that's all for now.
Barb
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Gary update,
24 February 2000 The second opinion isn't really what we had in mind...Dr. Blackstein advises that the chest surgeon he spoke to says the tumour is inoperable. So, unless there is major shrinkage of the mass, it will not be surgically removed.
The plan is to continue with the "vanillabean" chemo which Gary has taken the last two Thursdays for another 4-6 weeks to try to shrink the tumour. This is the same chemo which we were told would have no side effects. Well, for the second week in a row, Gary came home from his treatment with a debilitating headache and he could hardly breathe. He scared himself this afternoon, it was so bad. He' s been told it is a reaction to the chemo and that he should make his oncologist aware of it. Tylenol 3s and sleep seem to make things better, though, and he's pretty ok again tonite.
I must say that he is having progressively more difficulty breathing, having to sit forward every so often in order to catch his breath. And he is getting weaker, so that taking a shower is vigourous physical activity for him.
He sleeps until noon just about every day, and then meanders into the kitchen for something to eat. Our house is a daycare during the day, so for all of you calling in the mornings to cheer Gary up, kindly wait until after 1:00pm, as the phone ringing in the morning disturbs his sleep, and Cindy, our caregiver, is trying to get the kids off to school. Not to imply that the calls are unappreciated, just to let you know that you won't get to talk to the big guy before lunch, anyway. If he doesn't sleep in, he's no good the rest of the day, so it's how he functions best. Thank you for your consideration.
The news about the inoperability of the tumour has kinda dampened our spirits a bit. Gary's taking everything in stride, and his humour remains in tact. He's a pretty amazing guy. I'm sure tomorrow will be better...thanks for all your support. It's days like today that we really appreciate all of you the most.
Barb
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Gary update,
26 February 2000 Just to let any of you know, who don't already know, that it was Gary's birthday yesterday. He turned 51 years old. It was a quiet day. The surprise came for him today....
As Gary is going through something right now that he really doesn't deserve, I decided that I was going to make a dream come true for him. Today he got something he DOES deserve...
a 2000 black Mustang GT 5speed with special anniversary edition mags, 17" wheels, black tinted windows, power everythingcd/cassette, charcoal leather interior and milled dashboard. In fine red lettering across the bottom is written M U S T A N G a very pretty car.
I put a huge red bow on the roof and draped the ribbon across the trunk and hood and drove it down the hill toward the house. He was standing on the front porch watching for his "Surprise". He said he didn 't have a clue as to what it would be until he noticed that I hadn't taken the truck with me. Only then did he think it might be a car.
Needless to say, he was moved to tears and hasn't stepped out of it yet. I think he likes it. He called it his dream car. THAT made ME happy.
Barb
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Gary update,
04 March 2000 Barb
( Mustang.JPG )
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Gary update,
09 March 2000 There have been some developments in the last week or so, which I thought you all might be interested in hearing about. After Gary's birthday he went to see the Family Physician, Dr. Michelle Galambos (GP), about getting some oxygen to help him breathe better. He had been having a terrible time and Judy and we thought that perhaps an O2 tank would help him at least sleep better through the night and maybe help him master the stairs a bit better.
We thought it may also help his energy level. Anyway, out of the blue the GP makes the statement that Gary ought to go see a dr. in the U.S. To make a long story short, she got the ball rolling with the oncologist here (Dr. Bramwell) and the chief oncologist at the Mayo Clinic in Rochester Minnesota (Dr. Edmonston). While Dr. Edmonston stated that he would offer no promises or guarantees, due to the fact that he is familiar with Dr. Bramwell's work, he did agree to see Gary if he wanted to make the trip. So, after getting approval from the Force's Health Services, we were able to get an appointment at the Mayo Clinic for the last week of March. We travel on Monday the 27th, Gary will undergo some tests on Tuesday the 28th, see Dr. Edmonston on the 29th, and then, depending on what the Dr. has to say, we will be staying for treatments until our plane takes us home on the Saturday. We are very grateful to the Commanding Officer of "O" Division for allowing us to travel on the Division aircraft there and back. This will make it easier on Gary as the air pressure in a commercial aircraft, which flies at higher altitudes, would be hard on his system. Besides, "it's the only way to fly" (sorry Iain :-) ).
As for the oxygen, we now have a machine sitting in the livingroom to which about 55 feet of hose is attached that can reach around the entire house. So, if you come for a visit, watch your step! He takes O2 once or twice during the day (it's actually getting less the last few days) and takes it all night. It has helped him (and me) sleep better, I think. He still finds the stairs a task to climb (kinda scary, actually, to see him walk up to the landing and sit on the next stairs for 10 minutes catching his breath before he takes on the next flight) but his energy level the last two days has improved. Maybe that's a combination of the oxygen and the warm weather we have been enjoying, but it has done wonders for his mental state of mind, too.
He has lost a pile of weight, as eating is dicey sometimes..swallowing is tough unless he has something to wash the food down with, and choking is always an easy possibility. Otherwise, he's ok. Thanks to those of you who have kept him "in the loop" with your phone calls and visits, he really appreciates those.
And yes, I am still " the Best"...the Mustang now has about 1600 kms on it and is known all around town. Seldom a day goes by that Gary won't be driving it around at least once. It rained today, though, and might have had to stay in the garage as a result........
More soon..
Barb
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Gary update,
12 March 2000 Enjoy...
Barb
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Gary update,
24 March 2000 Well, today Gary woke up with a rattle in his lungs and he had a very difficult time breathing. So, long story short, we took him to hospital where he was immediately admitted into the cancer ward and given antibiotics. A chest xray shows that there is a cloudy patch on his left lung which may be pneumonic, which, to my understanding means that it could be partially collapsed, blocked, or fluid filled. The xray also confirmed what we have thought was probably the case, that the tumour is larger, and that this chemo seems to be having no effect.
He is on antibiotics in case there is an infection. His counts were low, so they are giving him two units of blood, and he remains on oxygen. The goal is to bring him to a level that is stable enough to allow him to travel on Monday morning, which he remains determined to do. Dr. Bramwell wants to reserve ultimate judgement on the travel until Sunday night, but when she heard that we are flying in a private aircraft and not commercially she felt better about the travelling. She will hold him in until Sunday night, but I am fairly confident that we will be on that plane Monday morning.
By the time I left him this afternoon he seemed to be feeling alot more comfortable than he was at the start of the day. Physically, this is all to be expected with this tumour. Its size is starting to seriously impede his normal functions and so everything we are seeing now is something I have been warned to expect. THis was confirmed by Dr. Bramwell to me this afternoon. I am trying to convince him to move into the spare bedroom, as it would relieve him of the necessity of climbing stairs, which is next to impossible for him to do anymore. There has been quite a decline since his birthday, in my opinion. He is still reluctant, however, to leave our bedroom.
What really disturbs me is his attitude. The feisty, humour-filled, bravado Gary is no longer. He has a real "whatever" kind of way about him now that is unnerving. I find him to be more irritable and grumpy and he doesn't care too much about much. Understandable, but kinda scary to see.
On the bright side, he is as determined as ever to travel to the Mayo and see what they have to say. It will be a physically exhausting undertaking for him, but it's gonna happen, as far as he is concerned, come hell or high water. Me? I'm going to use the waiting around time to study for the Cpls exam...ha!
Wish us luck. I'll update upon return from Mayo, and if we don't go, I'll let you know that, too.
Barb.
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Gary update,
26 March 2000 The trip to the Mayo Clinic has been postphoned.
The weekend has been a whirlwind of activity, so I will keep it really short and succinct. Gary's oxygen requirement has increased to the point where his body is demanding a level of 60% oxygen. Healthy lungs operate at between 90 and 100%. To bring Gary's lungs to this level he requires 60% pure oxygen to be constantly flowing into his airways. This is up significantly from the rate of flow which he had been receiving at home. This rate of flow makes it life threatening for him to fly due to the drop in oxygen levels experienced in a pressurized cabin. He cannot afford any more drops in oxygen, so the oncologist today nixed his travel plans. Further, this rate of flow is unable to be maintained anywhere but in a hospital, so he must stay in hospital until the cause for this high demand can be determined. It is thought the cause could be one of three things: First, it could be due to an infection. Second, it could be due to pnemonia in his lung/s. Thirdly, it could be due to the growth and spread of the disease which could be causing a brachial airway to be blocked or something. Since he has been on antibiotics since Friday and he has no fever, and he looks ok, the infection and pnemonia theories are hard to agree with. CT scans and further tests during this coming week will hopefully determine the ultimate cause of this high demand for oxygen.
Gary feels a little bit of relief at having the trip postphoned as he realized, as the day progressed, how much of an undertaking it was going to be. Physically it was going to tax him to his limits, and as his oxygen requirements increased as the day progressed, the equipment that needed to accompany him on the plane and at the hotel was becoming unnerving. At one point we even had a respiratory therapist on the flight with us, just to regulate the oxygen flow. In the end, it was in one way a relief to hear from the doctor that it was just too risky to fly.
He looks ok and so long as he has the oxygen mask on (making him look a little like a fighter pilot) he can sit up and be aware. But in order to talk on the phone he must remove the mask and then can only manage a sentence or two at a time without the mask on. The O2 machine is also very loud. I won't make the phone number generally known because it is unlikely that you will get to speak with Gary if you do phone. Judy is with him most of the time, and she will usually answer the phone for him and be the go between. However, he is in room 7222 South Wing of the Cancer unit (use the tower 2 elevators) if you feel you 'd like to visit him. Please consider calling me to find out how up to visitors he is, before you pop in. He doesn't have a whole lot of strength, but still enjoys visitors. He is confined to the bedroom, as he can only go as far as the hose to the oxygen source in the wall will allow, needless to say, this has got to be a source of frustration.
Thank yous need to be expressed to Bill Reid, the Force plane's pilot, who spent part of his weekend fielding calls from us with constant changes in requirements for equipment, and running around making arrangements to get these requirements met, only to have us cancel at the last minute. Also to the respiratory service, Nage, and the respiratory therapist, Tanja, who teamed up with Bill to do everything possible to make Gary 's trip happen. Two out of three of them were on their days off. Also to the Force, for allowing us to have the plane in the first place. For a while there, if we had been flying commercial, the trip would have been cancelled as early as Friday night.
THere's a whole lot of support out there for Gary, and it doesn't go unnoticed or unappreciated. Thanks everyone.
I'll be in touch.
Barb.
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Gary update,
29 March 2000 A thoracic (chest)surgeon saw Gary today and told him he would like to go into his chest while he's awake but sedated, through his nose and insert a tube that would enable him to blast radiation at the constriction in his airway (the tumour is invading his trachea through the trachea wall). This procedure would be done on Tuesday, in hopes that the pneumonia will have abated by then, and would be done three times, once every week. It would blast away the 20% constriction presently there, and allow more air to get through to his lungs. THis would alleviate his coughing and allow him easier breathing. And it would buy him a little time, but it wouldn't change the outcome.
SO, if the antibiotics work on the pneumonia, then we will undergo this surgery on Tuesday. The risk is respiratory distress and ultimate failure. Even if there is just distress, the "No heroic measures" clause is in place and it would ultimately kill him if things went awry. However, I had the impression we would be lucky if he were around on Tuesday, the way things were going, so I suppose this is good news. Gary's motivated by this, anyway.
Meanwhile, the days have been extremely rough. Someone stays with him all the time, be it Judy, myself, Shauna, or, now that he is here, Kevin (Gary's brother). Alot of people came to see him today, and it is so nice to see how concerned everyone is. Unfortunately, there were FAR too many visitors (21), and he ended up pretty tuckered out. This caused him to be so weak that he stood up late afternoon, sat down immediately, and went into a complete coughing spasm, the O2 in his blood plummeted, and his heart rate rocketed. It took 100% O2, a narcotic ventilator and some heavy sleeping to recover from this. All because he pushed himself too far today. So, please, if you intend to visit Gary, PLEASE call either Larry Cottell (W:640-7481) or myself (H: 641-7861, cell: 872-6708 pager: 690-3661) BEFORE arriving, as we can let you know if he's up to seeing you. There is nothing worse than seeing him suffer and when he can't get air (O2) it's brutal. Also, don't upset him as it cause him to cough and once he starts coughing it's a vicious circle to get enough air to get over it.
Gary's very weak. He's also very scared at times. But he's
fighting as hard as he knows how. Your support is appreciated, but
we have to spread it
out a little to have the most effect/benefit. Thank you
all .... I know you understand...
Barb
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Gary update,
04 April 2000 The last two days have been incredibly horrific for all of us. Gary was sedated to the maximum to alleviate his pain and suffering. In the end, he just stopped breathing as I held him close to me. We spent a long, loving night alone together and then it was all over.
The viewings will be at the Westview Funeral Chapel on Wonderland Rd. north in London on Wednesday April 5, 2000 at 2:00 - 4:00pm and again at 7:00 - 9:00 pm.
The funeral will be at the Metropolitan United Church at Wellington and Dufferin St., London at 3:00 pm on Thursday April 6, 2000. Gary will be cremated at the Mount Pleasant Crematorium thereafter.
Donations can be made on Gary's behalf to the Bethany's Hope Foundation, 14 Northdale Street, London.
Again, many thanks to all our supporters. Gary was well loved and will always be fondly and lovingly remembered.
Barb
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A quick note to touch base with you all...the kids and I are heading to the eastern Caribbean on a Carnival Cruise for a week Dec23 - Dec30 for an "Un-Christmas" and before we go, we wanted to extend our best for the holidays to each and every one of you.
Eight months of our Gary-free lives have seen many downs and some ups, but generally speaking we are coping well. Suzy started Junior Kindergarten and Zach started grade 1 and both have adjusted well. I am very proud of how they have handled things. I credit them with getting me through a few rough days. We spent a great three months this summer getting to know eachother again, and getting used to being "just us".
I cocooned for a while and am only slowly starting again to reach out to you all. Please be patient with me, I think about you all often. I returned to the Proceeds of Crime unit in September and am busy as ever and still enjoying it. The rhythm of a single working mom household is a pretty quick beat, but we seem to be humming right along. Some days it's a song, others it's just noise, but we are OK!
I hope this note finds you all healthy, happy and filling up with the Spirit of Christmas. We'll be in touch in the New Year.
Cheers!
Barb, Zach, and Suzannah
xo
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