Updates

Hello there! Under advisement of my wife, I've decided to re-post all my "health updates" here. The whole point is to share my experience of lymphoma with the world ... maybe it makes a difference? I don't know about that, but you can send me feedback if you think so.

Also, I am currently in the planning stages of releasing a second book of comics: Drawing The Line Again,Another book of Comics Benefiting Cancer Research where 100% of the proceeds are donated to cancer research. For more about this book please visit the web site: http://www.benefitcomic.com/

I realize this is a blatant ad to put you into action, but I really believe in this project and it is in recognition of what the health care workers of Toronto, Canada did for me. They all gave me a really great reason to look at the other side of cancer!

Health updates are now posted! I hope they inspire, inform or, at the very least, offer insight. Thanks for looking at this page and please consider the comic book, DRAWING THE LINE.

Cheers,
Suley

Whoa! A new bump?!

6 February 2004
I went to see Kim, our family medical doctor, because I had a cold, but I wanted to make sure it was just a cold.

3 March 2004
During my annual physical check up, Kim confirmed what I had found just a day or so before...a lump in my shoulder (under the left clavicle). Not cool.

9 March 2004
During my regular three month check-up, I brought the bump to Dr. Sturgeon’s attention. He noted my concern, and agreed it was the right thing to do to flag it, but felt strongly that there was no way it was a “RETURN” of the cancer. He didn’t take any chances, however, and ordered a few tests: a needle biopsy (no surgery) to determine the bump’s make-up and a CT (cat) scan to see if there were any others.

11 March 2004
Went to see Dr. Geddie (a head and neck specialist at PMH) and he checked out the lump.

He stuck a needle into the soft lump and extracted some cell samples. Didn’t take more than a few minutes if not seconds. He did a quick analysis and made a confident preliminary diagnosis that it was just a bunch of fat cells (hanging out together to form the lump). He says this is very normal to have and it just so happened to be in the area where we had found some cancer cells before. But not wanting to take any chances, he of course, conducted a full microscopic analysis. I would get the results from Dr. Sturgeon on the 23 March.

19 March 2004
I went in for a CAT scan (get it?!). No special diet the night before and no dyes or anything like that. Walk in and walk out. It went very quickly.


TEST RESULTS
The ritual begins. I always wear the same outfit for my visits to PMH.
I was dropped off so I could get my bloodwork done. Since I had such a wait, I decided to visit some friends downstairs.

I popped my head in to Suite 8 and all of a sudden, Cynthia popped into view like a magic trick. She had just returned from visiting her sister Down Under. Nice tan. And nice chat to catch up. Decided better get back upstairs for my place in line!

I returned to the blood clinic but they were only at "03"! Finally my turn came. They don’t use number 13 so it seemed faster. HA! With the deed done, I called Julie for my pick-up.

EN ROUTE
We squeezed in another appointment while waiting for the blood lab to get their work done, to see the chiropractor. En route to our chiropractor, uptown, I stopped off to pick up some second hand magazines and a coffee. At our appointment, our chiropractor donated to our book project. She inspired us to walk down to see our dentist, just a block south of her ... and our dentist contributed, too!

On our way back from the chiro and to the oncologist, we stopped in for some lunch at a Chinese restaurant near the hospital.

When entering into the hospital, off University Avenue, I saw Mr. Knight, the father of my friend, Trish who is also going through treatment with Dr. Sturgeon. He was in line getting some coffee at Tim Hortons. Down the hall, is the blood lab, where I was this morning, alongside the phone booth where I rang Julie to fetch me. We took the elevator across from the pay phones to the 2nd floor to my “clinic”. During SARS you could only enter through the main entrance and they screened you here. Volunteers were not allowed on site during SARS which made things very hard for the regular staff.

IN THE WAITING ROOM
My clinic is at the Hematology West area...same floor as the Head and Neck clinic where I saw Dr. Geddie two weeks prior. This is the same floor as the Chemo Day Care Unit. There is a ritual here, too: First I check in with Barbara at reception, after a short wait, I then get weighed. That’s why I wear the same outfit all the time -- to keep my measure consistent.

Saw Trish there having a snack. Her dad brought coffees up shortly after we sat down. Her dad also works for Coca-Cola. They have a long drive everytime they come to the city but they always smile and have upbeat stories and adventures to tell. We often see Trish and her dad when we see Dr. Sturgoen.

Luckily, I brought a rough draft of the Benefit Comic book I am working on and was able to show Trish and a few others who were also waiting to see Dr. Sturgeon.

It was a good visit but an exceptionally long wait for us to see him today. Glad we had lots to talk about and to “show and tell".

FINALLY...
Finally, after a lengthy wait, we were seen by Dr. Sturgeon and his intern. We were all relieved to hear that Dr. Geddie’s preliminary diagnosis was, in fact, correct and the tests confirmed that the lump was a bunch of fat cells bandied together.

The CT scan was also showed a “regular” scan for someone in my shoes. I was told by all doctors that PMH will continue to monitor me closely. I will continue to see the PMH doctors every quarter; then eventually I wil see them twice a year; and then, annually for the next five or so years, to ensure that the cancer is kept at bay if not erraticated.

Dr. Sturgoen is taking a sabbatical for 2 and a half months so having the results completed before his departure was very good. We all felt as if we had neatly tied up loose ends. Although we were the very last people to leave the clinic for the day, it was a great visit.

We sneaked downstairs to the radiation area to make a quick visit to Cynthia and Michelle and the gang. We were lucky to catch Cynthia just finishing up her paper work and she went to find Michelle for a quick chat...


Ta-ta for now!

Happy Holidays!

Hello, hello! (Or, is that Ho Ho Ho!?)

So, off to the doctors we went on Tuesday, 16th December. My 2nd 3-month check-up since the treatments ended. It was sunny and the bus ride up to Princess Margaret Hospital [PMH] was very crowded and over-heated!

We alighted [as they say in the "Tube" in London] and I almost got run over crossing University Ave.! We went in by the doors that were locked once SARS hit. Still squirt the disinfective gel, but otherwise it seem like the PMH we got to know a year ago. This day was also an anniversary 17/12/02 was my first chemo session!

They took my blood - not as painlessly as I remembered!!! The nurse heard my 'accent' and we chatted about the UK; Marks & Spencer's knickers and the prices in London. My arm was sore, though.

Being that special season, we had brought along some gifts: Wooden nutcracker tree ornament for Kim Harris [ the oncologist's executive assistant] and 2 x Cadbury 'Fingers' (Costco sized) in their distinctive purple box.

We began on the 5th floor and worked our way down.... Kim, then to the Chemo Day Care unit on 2nd, where we saw all the nurses I really wanted to see: Christine, Rene, Susie and then Elisa [ in blood transfusion today]. It was nice to catch up. Then down to 2B(elow) to see the radiation crew. Julie was leading the way like Lance Armstrong! Out of the corner of my right eye I looked down the hallway to unit # 18 and was stopped by what looked like Cynthia RN [in light purple]. She, too, stopped in her tracks, trying to focus and determine if she knew this fellow "....with Hair!". I keep forgetting that by the time we met the nurses for radiation treatment, Julie was shaving my head almost weekly. So the fact that they don’t recognize me immediately is because I’m somewhat disguised in a certain way. We left the purple “Fingers” box with Cynthia, one of the nicest people I met at PMH. She was to distribute the cheer to her colleagues. We went further after a catch up chat, but Michelle was busy with a patient. So, off to an early lunch we went.

1.30 PM The usual clinic premises are under renovations and so patients are sent to various new locations. What a mess! Luckily, we were fast-tracked because we had to see 2 doctors that day. Dr. Hodgson [Radiologist] checked me over first. Good news. “See you in six months”. Glenda RN made all the arrangements for our next visit [15 June 04].

2.30 PM So off we went to see Dr. Sturgeon [Oncologist] on the 2nd floor. We didn’t seem to wait too long there, either. Liz RN, the nurse we met on our very first visit to PMH greeted us. She’s retired, but helps out twice weekly. Dr. Sturgeon’s ‘Fellow’, a certain Dr. Avessian(?), or something like that, checked me over here. He is from Tehran, Iran and moved to Toronto 2 ½ years ago. Again, it was good news. “See you in 3 months” -- [9 March 04], this time. On the way out we saw Nancy RN, the redhead who came through for us with the ‘Neupogen’ when we needed it and didn’t have medical assistance in place.

Aah, Christmas is such a lovely time of the year! As ever, Julie and I left PMH smiling; and as almost always, we walked home.

Until our next update...happy holidays to everyone!!

Wishing you all the magic of the season!

So now what?

So here we are, our first offical follow up since finishing radiation therapy...

Since my last report we’ve been so busy. Hardly noticed how fast the time has gone by.
We went to BC, where we had a great time! Then, in mid-August, we performed at the CNE [in its 125th Year!!] for a fortnight. The “Blackout” on the 14th of August [just after we had loaded in the gear for the show] forced us to miss the first 4 days of the CNE. As well, we attended a wedding reception and three (3) conventions [a magic one; a comic book one and a film memorabilia one!]

Today [my twin cousins birthday] was a follow-up to see how the chemo and radiation therapies went. On the 5th Sept 2003, I had another CT scan of my stomache and my chest. It went off without a hitch and we waited until today to get both the results of the test and the analysis of both the oncologist, Dr. Sturgeon, and radiation oncologist, Dr. Hodgson.

It was a warm and sunny day. Gave blood and then went for quick lunch [Chinese today]. Came back and, for the first time, our entire visit only took 1 HOUR and in that time we saw BOTH doctors. Completely unheard of for us!! We had blocked the entire afternoon off because normally we wait for quite a while!

A rundown of the day:
We sat in the general waiting area for less than 10 minutes before we were called to get weighed. They do it every visit and I seemed to have lost nearly 10 lbs.! All that water retention [thanks to the anti-nausea drugs] seems to be vanishing. We waited for a while and passed the time taking mug shots!

Before we knew it, Dr. Hodgson showed up and did a physical check. Whenever I go, who ever I see, I always get checked the same way: the neck, collar bone area, under the arms and lower tummy to see if any new lumps show up. NO new lumps, of course! And then, he did the requisite heart and lung-breathing tests.

We also talked briefly of the side effects that MAY or MAY NOT come about [but he feels unlikely], in the next couple of months, which are not serious. He felt quite safe to leave our next visit for three to four months.

VERY shortly thereafter Dr. Sturgeon came in to chat. [He hates getting his photo taken! So Julie sneaked in a shot of his hands! He’s great fun and always delightful to chat with. He was pleased with his quick consultation with Dr. Hodgson [in the hallway outside] and he said there was no further development in my chest and shoulder area: NO cancer.
Another GREAT sign. Blood work looks good - some things can be a little better but the numbers were most likely low because I’ve just come off of radiation.

All in all, I think he was just BEAMING today. He was very pleased and happy with the way things (i.e. treatement) went and how I responded. He was remarking on how well I looked and how happy he was with the way things are progressing. He suggested two months for the next visit. Dr. Hodgson’s assistant, Glenda, split the difference and we’re due for another appointment on the 16 Dec. 2003.

This follow up process will continue, for now, on this quarterly basis and then I’ll graduate to seeing them every six months and then, finally, move to annual visits over the next two to three years. So that’s about it for now. I think it’s safe to say things are rolling along as they should [knock on wood] and everything has turned out the way it was supposed to.

Thanks to everyone out there for reading these updates and for sending great notes of feedback, encouragement and support to both Julie and me. We love hearing how positively everyone is taking this stuff, which makes it ALL the better for everyone involved!!

It was a FUN journey!

I wish to take this opportunity to thank all the doctors and nurses who helped “us” through this: Our HERO and family doctor [who caught this so early on for us] Dr. Kimberly Wintemute; Dr. Orrie Rotstein; Dr. Tim O’Malley; Dr. Jeremy Sturgeon; Dr. Alice Newman; Dr. David Loach; Dr. Renata Reubeni-Zaltz; Dr. David Hodgson and Dr. Alexander Sun.

Among the nurses, I would especially like to mention Christine; Elisa; Rene; Susie; Amy and Ann in the chemo day care unit and Michele; Cynthia; Sherrill; Wendy; Sajida and Ray in Unit #8 in radiation; Kim Harris [Executive Assistant Extraordinaire]; Nancy Pringle; the other Nancy; Barbara and Sonia, the volunteer in Dr. Sturgeon’s clinic. Glenda and Kirsten in the radiation clinics.

Thank you one and all. We couldn’t have gotten through this without you!

DRAWING THE LINE
I hope that my up-coming comic book project will “give back” some love -- all proceeds will be split between Princess Margaret Hospital and the Hospital for Sick Children Foundations. See our site www.benefitcomic.com for more on that. If you have feedback, ideas, contributions and/or sponsorship that you’d like to offer -- all lottery winners and trillionaires, please step forward -- make sure to check out the site!!


Cheerio,
Suley

I'M DONE!

HURRAY!

Just wanted to thank everyone for your kind words of support. I have completed my radiation therapy (also know as “XRT”) today and was pleasantly surprised with a certificate to commemorate the event!

I know the truffles from Stubbe Chocolates will never be thanks enough for all the wonderful care and special attention I received from the fabulous Radiation Therapists in Suite 08. They made the month of July 2003 so much fun and I really did look forward to my visits! Thank you one and all!! I’m going to miss you!

One more time! Today was amazing. First we showed up EXACTLY on time and no sooner did we park ourselves on the waiting chair, when Sajida came out to get us! Zip, zip...time was flying by today.

Julie also did a quick “tour de magie” for the girls today. CLICK HERE TO ENJOY SOME PHOTOS OF THE "BIG DAY"!

We’re off to BC Thursday 31 July (at time of writing, in a few hours!) so we will send you more update notices once we get back.

Cheers, Suley

The Home Stretch!

ALMOST THERE ...
So I’m plugging along with my radiation treatments...as of today (27 July 2003), I only have three more to go! Then, on the 31st, Julie and I will be flying off to BC to attend a magic conference (PCAM); we return to Toronto on the 11th August 2003.

Treatments have been going very well. I have had some of the side-effects, most notably was/is a VERY sore throat. Unfortunately, the radiation causes the inside of my throat to feel like there is sunburn in there! It was very difficult to swallow food or liquid for about a week; but now it seems the throat is on the mend. I liken it to having hemorrhoids in the throat. NO FUN!! The doctor gave me some stuff to numb it, but, too bad for me, it didn’t “hit” the spot where it was most irritated. Anyway, I managed to get some food down, painfully, but the upside is that I’ve lost a bit of weight(!) AND, I get to have ice cream when Julie is not looking. She gives me these ice cubes ... as if. Nevermind, I’m on the mend now and the next part of my treatment means my larynx gets protected now.

Taken from Lymphoma Research Foundation Radiation therapy (also called radiotherapy) uses high-energy x-rays to kill cancer cells and shrink tumors. Radiation is a local therapy, which means it only affects cancer cells in the treated area.

Where we last left our hero (since Update 3...):
Well, first good news to report is that the SARS screening is getting much faster for us to get into the hospital now. No need for masks anymore either, which is nice! I do the same routine...show up, scan my card to let everyone know “I’m here!” and then I wait. Some times I barely sit down and I am called into to get my treatment. Other days, I can wait...once, I had to wait an hour. But that was because a machine was down for maintenance so there was a bit of backlog. I don’t mind. As long as I get all my treatments before we leave for BC I’m happy!

NEW SHEILDING
Michelle and Cynthia were kind enough to show and explain to me how things were going to differ slightly; new shielding was one of them. The “T” shape protects the mouth and spinal cord from the rear and the other shape my left lung. My old shielding got melted down and reset into this new shape, which protects me when I get blasted from underneath. Remember the metal make up of this stuff, cerrobend? The shapes are configured to match me perfectly, of course, with this amazing technology. The clear slide that the cerrobend is attached to is like a giant sample slide you’d stick under a microscope... and the zapper is the microscope in this case.

MY POINT OF VIEW
I lie down on the table trying to help the ladies place me in “the sweet spot”. Once I’m down the ladies get me all lined up according to my tatoos and their laser lights. We had the Dave Matthews Band today for auditory accompaniment. I’m getting marked up and waiting for them to switch down the lights to use the laser lights. My neck sits in this cup to help extend it back and allow the chest area greater unencumbered zapping surface.

Once I am lying down and marked up, I mustn’t move. I just stare up and the technicians move me into place. The table moves so I just hang out staring up at whatever is above me. I am totally in their hands and I trust them completely.

When my neck rests on this form (which is covered by the paper) and is stretched so that my upper torso is extended, the distance is measured to ensure all is properly in place. [13.5 is the distance between chest and chin.] Tilting the neck can be uncomfortable at times, but the ladies ensure all is as great as can be for me under the circustances. But there is a great aid to help them...

There is “visual therapy”; a back lit image that is on the ceiling...however, because of the placement of the zapper and my neck, and because I am NOT to move one millmetre, I never get to enjoy it while I’m lying down. Nice of those ergo guys to think of us patients though!!

On my web site you can see the details of the WORK STATION, THE THROAT GUARD, X-RAYS, & TATOOS.

July 2003 - RADIATION

The Saga Continues...
I've finished, finally, six months of chemo. It was Dec 2002 (during the run of our theatrical show, The Conjuror) to May 2003. I even got to see Vegas despite my treatments in Toronto! Love my doctors for insisting that we go! All very good now that that is finished...but was caught off-guard when I was told I still had radiation follow up to do! We have to go to BC at the end of July so wish me luck that nothing gets cancelled!

3 July 2003 was the beginning of 20 radiation treatments, that are scheduled to happen Monday through Friday, for four weeks; until the 30 July 2003. The whole month of July consists of daily visits to the radiation ward, level 2B (below), at our fabulous cancer facility, Princess Margaret Hospital (PMH).

It’s all computerized there now...I just have to go in, scan my appropriately-coloured green appointment card to let the technologists in Suite 8 (the newest suite, but of course!) know I’ve arrived - and in turn the computer pops up a message letting me know if they are on time or delayed. Very handy. Out of the 5 treatments I’ve had, I haven’t waited very long at all!

SESSIONS: The first day was the longest...lots of measuring, double-checking, then triple-checking to make sure I was the right patient, in the right area etc. They had to ensure that I was getting the right kind of treatment (zaps in the right areas) so there was a lot of laying EXTREMELY still on the elevator-type bed.

It all begins with me lying down on the bed in a general vicinity. After that my job is to let them move me into place. I am not to “help”. They line up the tattoos with lasers...three sets of lasers give them the “triangulation” points. The technicians (Mary in green and Sherrill in blue) are marking my tattoos with a pen so it is easier to see. The 4 tattoos they gave me are are tiny blue dots: two on my chest and one on each arm

The huge dial on the wall with the arm is the blaster. It can move 360 degrees, which is essential for me as they blast me from above and from underneath.

The lights are dimmed. The table moves up and down, towards and away from the giant dial. You can see a bit of the laser light cross-section on my arm. This is the dial moving under me. ABBA can be heard in the background!

Now it’s fully underneath. To protect the areas that don’t need radiation [some areas of the heart and lungs], they stick in a shield that has been custom designed from an intelligent CT scan that was used to develop my radiation therapy. This shield is made from special thick stuff; a low melting point alloy metal called “cerrobend” which is a mixture of Bismuth, Lead, Tin and Cadmium. The technicians remember it as “BLT with Cheese”!

A closer look at the zapper and the shield that is slotted in underneath it. It’s this mammoth chunk of cerrobend that blocks unnecessary zapping to my body!

The zapper, close up, with the shield in place. You can just see the bottom part of the cerrobend.

THE ZAP: Once, I’m in place everyone leaves the room; they shut the sliding door (seal me in!) and I’m all alone. My job is not to move so I try to breathe without moving. Whatever. Mechanism whirl into place; a light in my right peripheral vision switches on [like the one outside a dark room or film studio that instructs "No Entry"], hummm. Eyes shut. Heart beat. The zapper speaks to me: “EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEpp.” 3 zaps [1 long, 2 short] on each side; first from the bottom, with the shield in place. Then someone comes in, removes the shield, rotates the giant zapper so it’s above me and we repeat it all over again. All in all, the actual zapping only takes about 30 to 40 seconds but the fussing and setting and checking takes time. Overall visit duration: 15- 20 minutes. One doesn’t smell anything; one doesn’t see anything, one doesn’t feel anything from the laser blast. No side effects either for me.

Making new friends all the time. The technicians change daily ... but some make repeat performances. This is Cynthia who has been there all the days. I’ve also been taken care of by Ray (Julie thought that was the perfect name for a radio technician!) and Hollin. They’re all great!! I also like the music they’ve got playing for me, too ... ABBA got ousted by Kylie the other day! By the way, we really are smiling under those masks!

9 July 2003: Saw a different radiology oncologist today who was filling in for my regular guy. He seemed relaxed about how I was doing. I haven’t had any thing to complain about either, so it was a short visit. He warned me that I was really cutting it tight to have my last radiation on the 30th and then have travel plans for the next day - in case a machine breaks down etc....so he put in a note in the computer to make sure I can complete the treatment and make that flight!

That’s all for now! Stay tuned for the next update...

The original post for this was on my website: www.fengsuli.com/update and this was Update 3.