It was exactly five years ago today that we took Shaun to the Emergency room at Mount Sinai Hospital with unbearable pain and nausea. The pain had actually started the night before, and after talking to my dad who’s a bit of an expert on the subject, we all agreed Shaun was having classic kidney stone symptoms and would have to ride it out. My parents wished us luck and left for their much-anticipated trip to Florida.

By morning, things had escalated to the point that he was vomiting and we decided a trip to emergency was in order. I remember calling work from the car and telling them I’d be in a little late — just needed to get him some pain meds. Luckily, the doctor ordered a CT scan of Shaun’s abdomen to confirm the size and location of the stone. Many hours later, Shaun was lying on a gurney in the hall and I was sitting on the end of it when the doctor came up to us with the results. “There are definitely two stones in your left kidney which is what’s causing the pain. But we’ve also found a baseball-sized mass in your abdomen. We recommend you stay the night to keep the process moving as quickly as possible…” The look on the doctor’s face and the tone of his voice made the hair on the back of my neck stand up. I remember Shaun squeezed my hand until it hurt as I struggled to stop the room from spinning. We looked at each other, wide eyed and dumbfounded.

I don’t remember much about the next 24 hours. I know I called a few people who tried to tell me not to worry until we knew for certain there was something to worry about (although every bone in my body was already certain). I must’ve called work to tell them I wouldn’t be in. I didn’t want to call my parents since they were en route to Florida and there was nothing specific to tell them yet anyway. I remember they emailed me a few days later to let me know they had arrived safely. They asked how things were going with Shaun’s kidney stone and, although I considered waiting until they got back to tell them, I filled them in on the situation. Despite my protests and the fact that they’d literally just drove two days to spend two weeks in the sun, they insisted on turning around and coming back. “How can we possibly enjoy ourselves here while you’re dealing with whatever this is there? This is not up for discussion.” And they basically didn’t leave our sides again for a year.

Within a few days, and since they weren’t initially sure of the source of the mass, we saw an oncologist who specialized in retroperitoneal sarcomas. It wasn’t until all his blood work came back and his HCG was elevated to over 3,000 (normal is <2) that they realized it was testicular cancer. Within a week he was in surgery having his testicle removed, and five days later he started three months of BEP chemotherapy. Further tests revealed he was Stage 3B Intermediate Risk (vs. Good Risk which would’ve been better, or Poor Risk which would’ve been worse). When it comes to testicular cancer, there is no Stage 4. On the one hand, the rapid fire pace at which everything was happening was great — the cancer was being treated as quickly as possible and we didn’t have much time to sit and stew. On the other hand, the amount of time we had to absorb enormous amounts of information and make life altering decisions was absurd. I essentially stayed up for days, researching the shit out of shit I’d never heard of in my life, and certainly never thought I’d need to know. You’ll often hear from those who’ve been there that the time leading up to treatment is especially terrible.

But now, five years later I can honestly say it was the aftermath, when treatment stopped and Shaun was considered “cancer free”, that was particularly difficult and confusing. When you finally have a chance to look around, breathe, and absorb what just happened to you and your loved one. When everyone congratulates you for being “heroes” in the “war” against cancer when all you did was what anyone would do in your place because you didn’t have much choice, and the treatments you endured just happened to work. When the cards and the phone calls and the emails stop coming and you feel totally alone, but don’t feel much like talking to anyone anyway. When you feel grateful for being alive, but angry for being left scarred and sterile and financially wiped out, then selfish for feeling angry. When everyone expects you to celebrate but it’s the very last thing you can imagine doing so you feel you’re somehow letting people down. When you have to force yourself to emerge from the cave you’ve built to create the illusion of personal safety and control, and try to act ‘normal’ again (whatever that means). When you figure you must be weak for not feeling capable of making lemonade from lemons and thinking positive thoughts and being the change you want to see and every other so-called affirmation that gets thrown around on Facebook. When you realize you cannot and never will count on some people you assumed you could always count on. When you have to figure out a way to live with constant reminders in the form of ongoing surveillance that the worst experience of your entire life might recur all over again, even if it probably won’t. When you feel guilty for surviving when so many others aren’t as lucky — not because they didn’t ‘fight’ as hard or ‘stay as positive’, but simply because they got a different kind of cancer that has less effective treatments, and because cancer indiscriminately kills people every day.

I’m not saying this is every survivor’s experience or perspective, but it certainly has been ours. And although I now know we are not alone in these experiences, I spent a lot of time believing we were and suffering for it, which is why I’m writing this at all. This blog started as an easy way to keep friends and family updated throughout Shaun’s treatment. But over the years I’m proud to say it’s become a resource for others who are going through their own experiences with cancer. And this entry is for them.

To those people, I want you to know that the treatment you’re going through is worth the pain and anxiety that comes with it, because people do emerge and live cancer-free lives for many years and it’s worth a try to become one of those people. But I also want you to know that if you do become one of those people, there can be unexpected feelings you’ll come up against long after the cancer is gone. Those feelings may take you by surprise and make you feel anxious and confused and question everything about everything. But for what it’s worth, you’re not alone. Most of us who feel this way keep pretty quiet for fear of sounding ungrateful, but if you want to talk to two of us, we’re always here to listen: juleshaun@hotmail.com.

Hello All,

It’s been a long time and as they say, no news is good news. Just a few small items of interest and you can go back to doing whatever you’re doing.

First, Dr. Bobby Shayegan. I cannot express the sheer awesomeness of this man, and if (God forbid) you ever find yourself in need of a urologic oncologist, contact him immediately. Since he literally saved Shaun’s life and all, I realize I’m slightly biased but: highly-trained expert surgeon, head of surgical oncology, deputy chief of surgery, associate professor, regular speaker, published research author, snappy dresser, and has a lovely family to boot – is there anything the guy can’t do?! My point to all this is, rather than simply keeping Dr. B in the loop and getting his opinion in addition to that of the PMH team, this year Shaun decided to formally switch his surveillance to Hamilton and Dr. Bobby. His bi-annual appointments are now an opportunity to get caught up with a surgeon who played a pivotal role in our lives and always felt like a genuine member of Team Shaun. (Evidently these appointments are also an opportunity for the junk collector to collect out-of-town junk. Anybody want to buy a pair of vintage bentwood chairs? Sigh.)

Which brings me to the PET scan. A Positron Emission Tomography scan leverages the fact that cancer cells divide quicker and metabolize sugar more rapidly than normal tissue. So you’re injected with a radioactive tracer + glucose, you wait a while for the sugar/tracer to course through your bod, then you get scanned. The resulting images show areas of increased metabolic activity — where tissue is metabolizing glucose more rapidly than normal tissue. So while a CT scan shows a lump, a PET scan verifies whether or not the lump is cancerous with a pretty high degree of accuracy:

For the record, if you or anyone you know has been diagnosed with cancer, in a lot of cases I believe this test is the fastest and most accurate way to find out whether and to what extent the disease has spread, which can drastically impact and possibly improve the course of treatment. If you can’t access a PET scan through the typical channels and can afford the expense, there is a private clinic in Mississauga that offers the scan called Care Imaging.

Anyway, because of this persistent node in Shaun’s omentum, Dr. Shayegan ordered a PET scan to see if it would “light up” as they say, which ironically means that something looks black on the scan. The good news: the scan came back showing no dark spots. The caveat: because of its slow growth and low metabolic rate, teratoma wouldn’t light up anyway. So the node is definitely not an aggressive cancer, but teratoma can’t be entirely ruled out. Now all we can do is continue bi-annual surveillance for the next 5 years (at least) and watch to see whether or not it grows. If there’s no growth within that time period, odds are it isn’t cancer. Um…

Perhaps the reason cancer is such a stressful disease to have, and to watch someone have, is that it comes with such little certainty. Where exactly is the cancer? We’re pretty sure it’s here, but it could be just about anywhere – you’ll have to wait and see. Is it treatable? Well, there’s this brutal treatment protocol and sometimes it works, but sometimes it doesn’t – you’ll have to wait and see. Is it all gone? Will it come back? Maybe, maybe not, no one can say for sure… you can see where I’m going with this. And when I say wait and see, we’re not talking wait a few months – we’re talking a few years, sometimes a few decades. Who knew that one of the hardest parts of dealing with cancer would be truly putting it behind you, assuming you’re even lucky enough to have the opportunity. I was talking to someone about this the other day. Shaun and I have never once celebrated his wellness. As much as we used to talk about having a party or taking a fun trip when it was “over”, since he’s been declared all-clear we’ve just never really felt like it. Partly because it never really feels over, but partly because of what they call survivors’ guilt. It’s hard to explain.

On a side note, why the hell can we pick up a piece of lint off the surface of Mars but we can’t inexpensively scan the human body with any great degree of accuracy or non-toxicity?!? Now that would be a serious game changer.

Carry on folks,

J

Hi All,

I know some of you are waiting to hear about our meeting today, so here goes… The scan came back showing growth. Here’s the exact wording of the radiologist report:

“The previous noted irregular soft tissue density nodule on the greater omentum has slightly increased in size, now measuring 0.9 x 1.7 cm (short axis x long axis dimensions). No other significant omentum mesenteric nodules are seen. There is no evidence of ascites.” Everything else normal.

HOWEVER, the medical oncologist (Dr. Moore) reviewed Shaun’s case with the surgical oncologist (Dr. Jewett) and the supposed verdict is fat necrosis (i.e. dead fat). The theory is that the omentum suffered some post-surgical trauma and the blood supply was cut off from this small area of the omentum. Over time, the tissue in the area died resulting in the image we keep seeing on the scans. He said that although the area has increased in size, it looks less dense vs. October’s scan. “Softer” was the way he put it. So he kind of explained that instead of a solid nodule growing, it appears more like tissue breaking up.

???

I’ve already emailed Dr. Shayegan in Hamilton who has committed to calling and discussing this with Dr. Jewett next week. This is great news from my perspective as, despite written correspondence between the two hospitals, I’ve never been entirely convinced everyone is on the exact same page.

SO, the good news is (a) the discussion with the doc accurately reflected the findings in the report this time around, (b) “the best in Canada” thinks there’s likely nothing to worry about AND has provided an alternative possibility, and (c) Hamilton and Toronto will soon be communicating without our help!

However, we’re still working on figuring this out and will keep you posted.

Have a great weekend,

J & S

Hi All,

I haven’t updated since Shaun’s 1 year check up (about 3 months ago) at which point a new “nodule” was identified on his abdominal CT scan. Blood markers were normal. While the radiologist flagged the node as suspicious for metastases, both PMH and Hamilton doctors did not seem concerned given its location relative to typical TC mets. However, the decision was made to conduct a follow-up CT 3 months later to monitor the node, which brings us to today…

Just got back from said follow-up appointment at Princess Margaret and unfortunately, it wasn’t very helpful. The doctor told us that the previous node disappeared and there was a new node visible, but since they ‘tend to see various nodes every time they scan Shaun’ (news to me) and his markers are normal, he isn’t concerned. Great! Then, as we always do, we asked for a copy of the CT report and figured we were on our way. The doc is long gone when the nurse hands us the write-up which states as plain as day: “there is apparent interval enlargement of a previously described nodule measuring 8mm in short axis diameter currently, as compared with 5mm on the prior study.”

Um… how he got ‘the node has disappeared’ out of this is beyond me. So we ask to meet with him again, point out the GROWTH of the nodule over the past 3 months, at which point he basically reiterates that he isn’t worried, yadda yadda and sends us on our way. This, in combination with previous experiences we’ve had with various doctors, makes it impossible not to wonder if anyone is paying much attention to Shaun’s case at all.

Particularly disturbing because we know that teratoma — i.e. the giant mass that was removed from his abdomen when his markers were also normal — does NOT produce tumour markers, is slow-growing, and can sometimes morph into other less treatable forms of cancer if not removed promptly, which is why we hauled our asses all the way to Hamilton to get a surgery date 2 months prior to anything PMH could offer. So normal markers, although better than the alternative, don’t really mean jack.

Obviously I am frustrated. But mostly I’m tired. After all, I am not a doctor. Or an expert on cancer, radiology, or navigating the health care system. And yet, I feel the need to be all of these things because I have yet to be able to truly rely on anyone else. Just for fun, let’s review:

• Shaun would have been given significantly more lung-damaging chemo than needed, according to the world’s foremost TC expert.
• His surgery would have taken place at least 4 months after completing chemo, timing that made virtually every other oncologist consulted (5 in total) “uncomfortable”.
• He was told to heavy up on coconut oil to address chylous ascites, 34% of which is the type of fat that exacerbates chylous ascites.

And there are other arguably less critical things we’ve been told (e.g. prognosis stats, risk categories, relapse rates, surveillance plans) — when we’re told anything at all — that are flat-out wrong. So how the HELL am I supposed to trust these people with Shaun’s life?! Oh yeah, I can’t.

Which means I’ll be spending the next 3 months sending copies of scans to other doctors and friends, consulting forums, and gathering my own information in the hopes of figuring out whether or not we should be concerned about this growing nodule. Just like I did over the last 3 months. And the 16 months before that. I keep waiting for a time when we can relax in the knowledge that Shaun is well taken care of, but I’m starting to realize that time might never come.

Hell, I don’t even know if this update is good or bad news. But it is news I suppose, so WTF… I share it anyway.

J

“We began the procedure by exposure of the retroperitoneum. This was accomplished by mobilizing the right colon from the level of the hepatic flexure to around the cecum with further incision along the root of the small bowel mesentery on its peritoneal layer to the ligament of Treitz. This allowed us to lift the small bowel from the ligament of Treitz all the way to the ileocecal junction en bloc. This was then placed on the patient’s chest between wet sponges and packed away and retracted using a Thompson retractor…”

First of all, somebody Google “ligament of Treitz” immediately.

Secondly… AAAAAAAAAAHHHHHHHHHHHHHHHHHHHHHHHHHH!?!!?!!!

Sweet.

Jesus.

No wonder July 28th, 2010 was both the worst and the best day of my life. When Shaun was wheeled into surgery at 8:00am I almost passed out from fear. Then enormous relief when he was wheeled out over 5 hours later looking, feeling, and sounding remarkably fine. And most importantly, cancer-free after having metastatic testicular cancer for lord alone knows how long.

Also, it’s our anniversary (of sorts) today. Last year we celebrated in a hospital room over ice chips. This year? Harry Potter in 3D, Italian food, and alcohol. I consider this major progress.

In the meantime, I’ve sent Shaun’s latest CT scan to his Hamilton surgeon, Dr. Shayegan. Since he’s the only person who’s seen and probably even touched Shaun’s omentum (ahhhhhhhh!!), I figure he may be able to add some perspective.

In the words of my friend Grace, A LOT can happen in a year.

Stay tuned,

J & S

Hi All,

Shaun and I just returned from Princess Margaret Hospital where we reviewed his latest blood and CT results.

The good news is Shaun’s tumour markers all came back normal, and his lung CT remained unchanged from the scan they took 6 months ago. This is what we like.

However, his pelvic CT showed some changes in his “omentum”. Here we go with the medical terminology again… Imagine a sheet of fat draped around your abdominal organs and you’ll have an idea of what we’re talking about here. So the radiologist noted the changes as suspicious but the doctor wasn’t convinced there is any reason for concern — apparently this would be a very rare location for metastases. In any case, Shaun will have a follow-up CT in 3 months to monitor the situation and as always we’ll keep you posted.

Not exactly the status update we were hoping to provide but that’s the latest.

Hope you’re enjoying your summer,

xo J & S

Dear family & friends,

Just a quick note to let you know last week was Shaun’s 8 month surveillance appointment and once again his blood markers and chest x-ray came back ALL CLEAR!

Night sweats continue to be an issue on and off but at this point everyone is pretty confident this is hormonal, so we continue to adjust his hormone replacement meds and cross our fingers for the upcoming summer months. Shaun’s next appointment is in July, when it will be almost 1 year since his surgery (!?!?).

Certainly this is all great news but at the same time there are always stories without such happy endings. This past week alone, our friend’s mother passed away of colon cancer while a fellow tc-forum member died suddenly of complications from his chemotherapy treatment, which I didn’t even know was possible. He was 36 years old and given the same “great odds” Shaun was given…

So sure, early detection and the right doctor(s) and the right treatment and a positive attitude and a clean diet can help. But sometimes this disease is stronger than all of those things combined, and bad things happen to good people. More than anything, I wish no one ever had to experience or witness the fear, anxiety and pain associated with a diagnosis of cancer. I hope in a hundred years from now people read about our era and think, “I can’t believe people actually died from that disease.”

All this to say, the next time you feel the need to buy a new pair of shoes, or a bag, or a new driver, or a video game — donate the money to cancer research instead. Because this is completely ridiculous.

xo J & S

Hello Everyone,

This is a post that is long overdue. It was exactly 1 year ago today when I was told I had a “large abdominal mass”, and now it’s past time to say my thank you’s!

First of all I would like to thank Julianne. Jule, if it wasn’t for you I wonder if I would still be here — your relentless Joogling undoubtedly saved me! Thank God you came back into my life. You have always been there for me and I don’t know where I would be without you. You have certainly set the standard in so many ways. This blog you created has been an amazing work in progress, always informing everyone with wit and humor. You have been our voice and I know you have inspired countless people, including me, along our journey. I love you more than words can say.

Secondly, I want to thank our families. The trips to the hospitals, picking up prescriptions, grocery shopping, sleep-overs, house renovations and maintenance, bringing dinners, making dinners, house cleaning, helping me get out and walk, taking care of things when I couldn’t. Your support, the time you shared, and all the love you have shown us… I will always carry that with me.

To all of our friends and supporters, some known and some unknown. Your countless prayers, well-wishes and all of the incredible cards, carpooling, visits, free lunches and laughter shared. Sometimes I laughed till it hurt and then I laughed a little bit more. You have touched me deeply and I’ll never forget the overwhelming feeling of being cared for by so many people. Your thoughts and actions did make a difference! I know this was one of the main reasons I felt well during treatment and recovered quickly from my operations. I have also really appreciated all of your blog comments and I’m sorry I didn’t reply to more of you.

Finally, thank you to the many doctors, nurses, caregivers and experts. Without them I would definitely not be here now! In particular, Dr. Bobby Shayegan and Amber Kirk, Laurent Sirois, Manny Martinez, Ruth Ann Baron, Dr. Lawrence Einhorn, Dr. Michael Jewett, Alastair Cunningham, Claire Edmunds, Dr. Andrew Mathew, Ralph Moss, Marsha MacLeod, Lucy Ruggiero, Sergey Moskovtsev, and last but certainly not least, Dr. Banana (long story).

It’s hard to believe it has been a year since I was diagnosed. I will never forget your genuine acts of kindness and all the love you have shown both of us. It has changed me in so many ways.

Thank you from the bottom of my heart,

Shaun

6 MONTHS ALL CLEAR!!

Hi All,

It’s been an eventful week!

Early this week I had an appointment at Mount Sinai and in order to get to the office in question, Shaun and I had to retrace our steps from last February/March. The route we took to the emergency room, where we first heard about the abdominal mass, the hall he walked down towards his first surgery. Even the smell of the cafeteria made me feel sick — their grilled veggie sandwich was all I ate for the first two weeks of that nightmare. Ugh. We tried to recall the sequence of events and a few of the finer details. Some are foggy while others are burned in our brains. It was a reminder of how far we’ve come.

Speaking of which, Shaun had his follow-up on Friday at PMH and:

Tumour markers are normal, CT scans have never looked better, and as an added bonus he’s gained 11 pounds since his TPN/no-fat phase.

One small hitch: I originally thought we would only need to get through 1 year of all clears before the chance of recurrence was drastically reduced. But in fact, it’s TWO years of all clears — so 18 more months to go!

In any case, a great way to start the new year. Hope January is treating you just as well.

All the best,

xo J & S

Dear Friends & Family,

Shaun and I rang in the new year in Toronto with good friends, good food, and in Shaun’s case, great drinks! 😉

And of course, it isn’t a party until you bust out the scar (healing nicely):

I won’t deny that I’ve been very much looking forward to the end of 2010 and its series of traumatic events. But at the same time, this past year will be remembered for other more positive things. Like the amazing doctors, nurses and support group leaders who save the lives and the sanity of cancer patients every day. And the thousands of cancer patients who live with this shitty disease for years with unbelievable grace, dignity and compassion for others.

But most of all, we will NEVER forget how 2010 made us realize we have the most incredible support system of family and friends anyone could ever want. So thanks to each and every one of you for making this past year bearable. We sincerely couldn’t have gotten through it without you.

Wishing you and those you love a happy, healthy New Year full of everything that truly matters.

With love and eternal gratitude,

xoxoxo J & S