What is your story of diagnosis?

[Julie YW]

Today is the one year anniversary of my cancer diagnosis. Mine is a unreal, crazy story, but I'm sure many people have a crazy story. I'm still haunted by the memories of that time, even though there's been plenty since then to be haunted by. I wrote about it on my blog (at least part 1 so far).

http://julieyipwilliams.wordpress.com/2 ... nightmare/

What is your story of diagnosis? I'm always interested to hear. Are you still traumatized as I am?

Happy cancerversary to me...

Julie

[pollo65]

Julie, you write so beautifully so succintly and capture the "what ifs" so well. I am not going into my story but suffice to say it too is filled to the brim with "what ifs" and "if I had onlys.) I suspect this forum is filled with both of them.
pollo 65

[godisgood]

Dear Julie,
Thank you for allowing me a private glimpse into your nightmare. Does it sound crazy to say that? I felt like I was intruding on a very intimate conversation, yet i couldn't stop myself. I wonder if it is because I just need reassurance sometimes that what I cant let go or feel is normal. It was both beautiful and tragic at the same time. I find strength in your words,the strength it takes you to relive it, the strength we all have because you NEVER forget. Thank You Julie for sharing and I cant wait until I can intrude on Part2...

Larae

[SkiFletch]

I can tell you that while at a year, the memories are still strong, by 4.5+, they tend to fade. At least they have for me. I do still remember many things though.

All started on a Wednesday visit to my GP for my annual. Complained to him that I'd been having difficulty with exercise capacity and getting out of breath sooner than I thought was reasonable. Doc looked at me and said, "you look like you might be a little anemic, so let me take some blood here and do a stool check. Maybe you have some Cholitis or hemmorhoids and just don't know about it."

"Sure thing doc," I said, knowing he's a tremendous physician and would get to the bottom of it. Anemia sounded right to me, so off I went to my normal life. Next morning at around 10:30am, my Dr calls me on the phone. "You need to go to the hospital immediately. I've already called them and pre-checked you in, you're massively anemic and need blood transfusions."

"Well OK doc, we're right about to do a Dive here at work (I was a hyperbaric chamber operator at the time), so I'll just swing by when we're done here" I replied. In an even more frantic voice he tells me, "No no you don't understand, your hemoglobin is 4. I don't know how you're standing, let alone exercising. If you don't get to the hospital soon, you could die from that low of a hemoglobin." Working in a laboratory that tests the limits of human performance, I know all about hemoglobin levels and immediately knew how dangerous that was. Mercifully, so did my co-workers. We usually try anything we can do to save an experimental dive since so much time and effort has to go into so many people to get it to happen. But when I said my hemoglobin was 4, I have to go to the hospital, they drove me in my car immediately.

So, a quick blood type later, and the A positive was hooked up and dripping. They stuck me on the cardiac wing because my ECG was NOT normal. Various types of arrhythmia and a heart clearly struggling without O2, so they wanted me on the heart telemetry. I started making the requisite phone calls. My then-fiance, parents, some friends, and gave the work folks an update. Blood transfusions and a colonoscopy in the morning were ordered since the FOBT turned up positive. My doc came by the hospital and told me not to worry. They'd find out what was bleeding in there and come up with some way to handle it. Still didn't even mention cancer. Talked to me a lot about every intestinal affliction not named cancer. I was 29 afterall. What 29 year old has cancer?

6 units of blood later and my HgB was up around 10 and deemed safe for the scope. Then the truly traumatic experience began. The sweet nurse brought it in a gallon jug labeled "golytely." The person who came up with this name is a frigging Sadist I'm sure. Many of you have had the misfortune of experiencing this concoction but for those that don't, never allow a GI specialist to give you this. It is one of the most vile tasting things I have ever encountered. It's like diluted vomit with a hint of lemon. I tried everything. Ice, drinking with straws, mixing with apple juice, orange juice, ginger ale, ANYTHING to make it taste better. Roughly 1/4 of the way through it, the pooping began... with a VENGANCE. The poor nurses had to come check it for blood (and of course found none). Then about halfway through, the vomiting started. Great, I get to do this from both ends... Whose the sadistic bastard that thought this was a good idea again? At roughly 2/3rds through I told the nurses they could go shove it. They had been so nice to me and I just SNAPPED at them. My poop is nearly clear and if I take one more mouthful of that horrible crap, I was going to puke all over their scrubs I told them. They relented and told me to keep drinking water. So I did and eventually passed out from exhaustion.

Next morning, get wheeled downstairs to the scope prep area. Not that there was much prep for me. I was already gowned up and IV'ed and ready to go. My father was tasked with waiting with me. We hung out for the 10 mins before I was asked a million questions about family history and reactions to anesthesia. The later, I knew well, I had no troubles with. The former, my dad started filling in all these blanks that I'd never heard before. Both grandmothers with colon cancer, multiple polyps for him and my mother, as well as a great uncle and aunt also with colon cancer. At the time I wasn't really paying attention to him, I was just nervous about the procedure and making sure they knocked me the hell out. So they wheel me back in and the nurse cracks a few jokes seeing how nervous I was. Eventually he comes over with a big syringe, hooks it up to the IV and says to me, "If you can count to 60 before this kicks in I'll be amazed." I only remember getting to the 20's somewhere. *side note: my doc said a couple days later that I was cracking jokes during the procedure. Kept asking "are we there yet?"

Next thing I remember is my father standing at the foot of my bed looking like he'd seen a ghost, and the GI doc standing next to me. He was better at hiding his emotions, but I could tell he was shaken as he told me that they had found a BIG bleeding mass at the end of my colon and that he was almost positive it was cancer. Combined with the shock and drugs, about the only thing I could day was "OK." He blinked a couple times and then asked if I understood, clearly thinking I was still under the influence of the good stuff. I was, which was why I didn't loose my freaking MIND, but I told him that yes, I did understand and asked what do we do now. He said I'd be sent to CT to check for spread, and would meet with a colorectal surgeon about removing it. So I went back to enjoying the remainder of the scope dope as they wheeled me off directly to the CT scanner. This was of course, friday the 13th. What other day could it be?

[drebay]

I just couldn't go to the bathroom, but didn't really "need" to. I am always been very regular. I had in the infamous "morning constitutional". After three days, (June 26, 2013) I called the Dr, who ordered a CT. A few hours after the scan, I received a call to go the Emergency Room. Due to complications, I didn't leave the hospital for 28 days.

[sjring]

Julie,

Thanks for sharing yor story. I'm not quite at my one year anniversary, but getting close. On most days I'm able to keep the thoughts away, and try to stay in the present moment, but there are times when it comes roaring back.

Back in 2007 I had had Roux-en-Y gastric bypass surgery. No real issues from that. Then in June 2013 I started having some minor abdominal pain. Noting horribly bad...really the kind that if you go to the doctor you feel like a hypocondriac. So I did what any reasonable person would do. I ignored it. That was until mid-August. I started thinking to myself, "wow, this is really persistant. I wonder if it's something related to the gastric bypass?" So I went to see my GP. He ran some blood work and scheduled a CT for later that afternoon.

When I got home from the CT that evening, I got a call that My 100 year old grandmother had requested to be placed into Hospice. I scheduled the first flight down to where she was the next morning, not wanting my mother to have to deal with the passing of my grandmother alone. My GP caught me on my cell phone as I was running to catch my connecting flight, really POd that I was traveling, until I explained the circumstances. I was told in no uncertain terms that if the pain increased I was to go to an ER immediately and I was to come home at the end of the week regardless of where we were with hospice.

They thought, from the initial CT that it was a very unusual presentation of appendicitis.

To make a long story short, 1 colonoscopy later they discovered a large mass in the ascending colon, and one of six biopsy samples testing positive for cancer. A staging CT showed one small liver legion, and I was referred to a surgeon. A good friend of mine who is a dermatologist insisted I get a second opinion from a nationally recognized hospital. They agreed with the call from all of the films I had to date and I scheduled surgery, but the liver surgeon wanted an MRI in addition to the CT. And that when the proverbal fecal material hit the fan. 10+ liver legions and a peritoneal implant. Surgery cancelled, go straight to chemo, do not pass GO do not collect $200 towards your insurance deductable.

I prefer to think about the positives. I am responding better than anticipated to the chemo. I'm still able to work (yay I still have insurance). I try to keep the dark days at bay.

[Charlesmarles]

Julie, while I know you didn't post this looking for feedback on your blog, I have now spent over 2 hours cruising through it. (at work ) You are an excellent writer and I'm glad you share your feelings and thoughts. I have yet to write my diagnosis story. I am hoping that after 5 years I can thankfully say it was just a small blip in the radar. Scary for all of us to hear those words. You just can't unhear some things. Peace and love to all.

[ripley86]

My story.... I had knee surgery in September of 2011. Shortly afterwards I started to have severe pain in my rectum. It felt like someone had inserted a splintered broomstick and twisted it. I went to my GP,spoke to the PA requesting he refer me to a gastroenterologist for a colonoscopy but he said they didn't do that and prescribed supositories to help stop the pain. I asked some co workers for possible referrals and went to a surgeon who they suggested. During the appointment, all he talked about was removing my gall bladder which I was not having any trouble with. I checked him out on line and found he had several malpractice suits against him. I again went to my GP asking for help and was again told they do not do referrals. It again was the PA who didn't even do a rectal exam. It was a total of 4 times I went asking for help. My partner went to the same PA due to abdominal pain and he referred her to a gastroenterologist for an appointment. I took her appointment and set up the colonoscopy with him, this was in September 2012. I was still groggy from the anesthesia when he came in to tell us he found a mass which was most likely cancer. My partner got very upset and I was trying to comfort her so it didn't really sink in. Just before I started the Xeloda/radiation treatment, I ended up in the ER due to severe abdominal cramping which kept me in the hospital for 3 days. My tumor removal surgery was April 4th 2013 which ended with a permanent colostomy. June of 2013 I was back to the ER again for severe abdominal pain. As a result of the CT that was done during that visit, a lesion was found on my liver. I has a follow-up visit after with my oncologist during which they found 2 nodules on my left lung. They have since found a growing nodule on my right lung and just last month, found a nodule on my thyroid.
Chemo for life.

[pukalania]

Hello Dear Julie,
Thank you for sharing your story…it is so beautifully written and so touching…I’m reading it at work…and my co workers got worried for my sniffles … it does sound pretty insane! I truly hope with time things get better…I can’t write very well but here is our story too…I am not the patient so it’s a bit of a side view…it’s been almost 4.5 years since diagnosis but it is still quite vivid…

SkiFletch you really know how to make such a traumatic story funny! Thank you for the good laugh…

Here is our story…Started Valentine’s Day 2010…(just in case we forget )
We were trying for a while to have a little one and we finally made it by some miracle…I was 3 months pregnant and we have just found out on a Friday that we are having a girl so we went to a dinner with the family…hubby was in awful pain, which the docs in the previous months have dedicated to acid reflux …bleeding due to hemorrhoids…but no suggestion for colonoscopy or any other tests. He was 34 at the time. The weekend was filled with pain for my hubby but still in his romantic nature he took me and my mom to the movies on Valentines Day..to watch Avatar (probably not the shortest movie to watch since in pain)…he could hardly wait for the movie to end and he started vomiting…so forced him to the ER… talk about Bloody Valentine (side note at the time we had 2 insurances Kaiser under his employer and HMSA under mine) so we decided to go to the better hospital in town…since Kaiser kept dismissing his symptoms…they did discover a mass that night on a CT scan…he had full obstruction…nothing could go in or out…so they plugged him in with those nasty ng tubes..he was on it for 4 days before a surgery was possible..there was 99% chance it’s cancer…but we were totally leaning to the 1% chance it is not cancer…especially since we just got pregnant….also his parents were supposed to fly into town in a few days and we told them he may have to have a surgery but didn’t say it was cancer so we can talk to them in person…then an hour before the surgery started, a financial services employee came into the room with a sheet of paper saying that we would agree to pay $75,000 or have to move to a Kaiser hospital…of course we totally lost our minds at that time and I started calling around to see who could help us gather $75,000 in an hour!!! (HA good luck with that!!) Of course had to tell his parents about the prognosis of cancer too …it was pretty horrible…at some point in the midst of this horror I realized I can call HMSA and just confirm with them that they won’t cover this procedure since it’s a secondary insurance (duuh me)…and they said that of course they will cover everything that Kaiser doesn’t cover…so that financial services employee didn’t know what she was talking about…I must have been a pretty calm preggo to not go and beat her up that day …anyways hubby went into surgery…where he had complications (apparently his colon was so filled that it busted and everything spilled inside of him)….so after 10+ h surgery he was in ICU for a week and in the hospital for another 2 weeks…I basically lived in the hospital until he got out…but it’s Hawaii after all…it almost felt like a hotel…?!! …and there was this sweet Hawaiian man who would come and play ukulele Over the Rainbow in the ICU… All the staff was so sweet and attentive…we even became friends with his amazing surgeon…It was such a mixed experience..the feeling of a curse and a blessing at the same time..all the time…and it still does..but I can argue sometimes that finding out hubby had cancer was a bit easier than discovering he had recurrence when we least expected it (no symptoms, and he was feeling great)…or all the complications we are still trying to fix after his last surgery that turned out to be a disaster…so maybe I am wrong..memories are not as vivid..the past somehow always looks a little better than the present

[Julie YW]

Thanks all for sharing your stories (and reading my blog). I'm glad I'm not alone. I do find the stories so varied and interesting.

[TheLadySkye]

I feel like "ordeal" is a better word for my experience than "story." Or maybe I'm just simultaneously bitter about how much was missed and when vs. all the things that had to go right for me to even be here telling you about it.

In 2012, I had some vague abdominal symptoms. I had pain that would last for a few days, then subside for weeks, then return for days at a time. While the pain would come and go, it was always in my upper center abdomen. I was also getting full after just small amounts to eat and felt kind of bloated. I have a strong family history of colon cancer and even though I'm only in my mid-30s, have been having colonoscopies since my 20s. So that was step 1. Colonoscopy in 2012. No polyps, no signs of trouble. Just some minor divertculitis changes and eat more fiber.

Pain continued and an endoscopy was the next step on my journey to be probed (at this point, I am well prepared for that pending alien invasion). Some minor stomach irritation tested negative for ulcer bacteria. Had a HORRIBLE time after that procedure though. Apparently I gagged a lot during it and the doc did nothing to alleviate that. Woke up with an excruciating headache, blood vessels ruptured in both eyes, and neck and head issues that still linger today. It was a disaster.

So after these tests, I sat down with the GI doc who said, "Well, we don't know what's wrong with you, but we do know what ISN'T, and the good news is you don't have cancer."

Lies.

So this passing pain continued for many months. I switched primary and GI doctors and was under surveillance with nothing new to report. One day the pain and bloating was so bad, I went to the ER. After waiting several hours, it subsided a bit and I went home as I was STILL waiting and waiting is not something I am any good at. A couple weeks later the same thing. I also felt so bloated and sick I tried to make myself vomit to no avail. Took myself to the ER fully expecting they would send me home with gas or something embarrassingly simple. They did a CT, whereby the nice doctor told me a had an obstruction in the small intestine. While I panicked the nurses were nice and told me it happens from time to time, I was probably just full of shit, and while it needed medical intervention, I would be just fine. They tried to insert the NG tube and that was an epic fail. Something went wrong and I couldn't breathe AT ALL and suddenly there is gushing blood and vomit everywhere.

Needless to say, they did not get to repeat the procedure while there was still life in me.

I had to be admitted to the hospital where the blockage would hopefully resolve with no food or water for a few days. As I was being loaded into the ambulance, as an afterthought I told the doctor I had been working with a GI doctor and to please make sure he was informed of this development. Then off I went to the hospital where they tried to convince me of the necessity of the NG tube and I politely offered them some new and innovative uses for that delightful contraption, most of which involved THEIR orifices, not mine. Surgical staff came in and tried to argue me into having it. I declined.

Two days later, they sent me for a barium swallow and GI follow through. No sign of obstruction. I can go home. Yay!

As I'm getting dressed and ready to leave, in walks my new GI doctor who I have seen all of once so far. He is furious that I am being discharged and tells me that he doesn't like what he saw on my CT, that he's pretty sure it's a tumor, and that it needs to come out. A tumor?!? What?!? No preamble, hello how are ya, nothing. This is his greeting to me. Then he proceeds to get into a fight with the hospital doctors who tell him they can't get their radiologists to confirm what he "thinks he's seeing on the scan," that they are NOT opening up a 39 year old to look for a tumor that hardly ever shows up in the small intestine let alone in anyone under the age of 70, and that he's batshit crazy.

Cursing in multiple languages ensues, and finally my GI doctor says he wants to repeat the endoscope the previous GI doc did and even though the test doesn't go into the small intestine, he will find a way to get there and biopsy the damned thing. Alas, my husband's father passed away a few days previous and we needed to go out of town for the funeral. The GI doc (who I will henceforth label Captain Crankypants) threw a fit about that too, but then cleared his schedule to do the procedure at 0600 Monday morning.

The day of the procedure, I came in and he asked me how I was doing. I told him I was scared both because of the issues I had with the previous endoscopy and because someone mentioned the word Tumor to me and I felt like I got hit by a freight train. He looked at me like I was from outer space, and the extent of his bedside manner consisted of a, "Well...would you like to go home instead?"

I didn't go home. I later found out he had basically made up his own procedure to get to the tumor. Since endoscopy tubes don't go far enough, he sterilized colonscopy gear and carefully used it from the top (dear God I hope that was clean). He was rude to my mom and husband after and basically said he biopsied the mass, was sure it would have to come out, would rush the results, then went to his next appointment before they could ask any questions. Then he went on vacation. While the news was horrible, I am infinitely glad that instead of waiting for weeks, he had them send the results to his phone and he called me from his vacation. Moderately differentiated tumor of the small intestine (jejunum). It has to come out. Any general surgeon can do the small bowel resection and that will be that.

Utter shock.

I had seen a general surgeon a couple years before and liked him. Captain Crankypants did too. So I was scheduled to see the surgeon the next week, with surgery to follow. I spoke to the surgeon on the phone before our appointment, and he was quite confident and reassuring. I was starting to think MAYBE this would be okay. Then he called me two days before the appointment/surgery. "I'm going to be honest with you here. I just got your scans and can actually see what we're dealing with here. If it was just you and me in Montana, I could do this surgery and I expect everything would go okay. However, if this was MY family, I would want them to go to Roswell (a nearby cancer institute) for this. I got your scan and While the location is resectable, if things are more extensive than we think when we get in there, there could be liver or pancreas involvement and they have specialty experience with that where i do not. I really think you should go there and I should recuse myself from your case."

*insert utter abandonment here*

So I made an appointment at Roswell and the surgeon I met also distinctly lacked bedside manner, but seemed very competent. He was a former military doctor, and he didn't suffer much of my foolishness or fear. I guess that kind of coldness is what you want from someone who is going to be elbows deep in your guts. He explained the resection, told me I would likely need an NG tube which he would place during surgery (and no, he would not shove it up his ass no matter how politely I asked). In the interim, I had researched everything I could about this extremely rare small intestine cancer, and the statistics were dire. Even though it is treated similarly to colon cancer, the survival statistics are much lower. To which yon surgeon quoted Mark Twain with, "There are lies, damned lies, and statistics." He reminded me that very rarely is this found in anyone my age. He reiterated than even though the tumor was advanced, they knew where it was because they had the CT and Captain Crankypants had tattooed the margins during the endoscopy so they weren't going in blind (apparently a rarity with small bowel tumors due to the lack of diagnostic equipment).

The surgery went as well as anyone could have hoped. He got clear surgical margins. Nothing in the lymph nodes. No perineural invasion. The five centimeter tumor had invaded the serosa (hence categorized a T4), but had not breached the wall of the intestine. It was a miracle, and had surgery been delayed even a couple more weeks, we could be looking at a much different situation. Given the size of the tumor, he expected to find a mess. Instead, he found a miracle and felt confident in the surgical outcome. However, because of the size of the tumor and my young age, they recommended FOLFOX chemotherapy to hopefully reduce the risk of any recurrence.

In the interim, thanks to a doctor friend of mine who has a friend who is the head of breast oncology at MSK, I was able to be seen there for a second opinion in a matter of two weeks instead of the months it usually takes. The oncologist there was also super dour and and I'm starting to notice a trend here. He was in agreement with everything Roswell had planned, MSK ran their own pathologies, and after all was said and done, basically told me to keep on keepin' on and that their treatment would be no different from what Roswell recommended.

While all of the doctors, oncologists, and surgeons I have seen have been reluctant to talk prognosis (which I find odd considering they must have to do so every day), the MSK doc said he expected my prognosis would be good. The Roswell surgeon who performed the surgery concurred, though it was sobering when I asked him (as I must) how many people he has treated for this and how many went on to be okay. He said, "Well as you know, this is very rare. But we do see a few cases a year. However, most are much for advanced or are in patients much older than you." I pressed for that how many were okay number.

None.

None.

None.

But...we expect a different outcome for you.

And so I hope and pray it will be so. Chemotherapy is done. I'm having a hard time with that. The neuropathy sucks and chemo was the worst thing ever, but at least I felt like I was DOING something. Now I'm told it's all out of my hands, and I'm having a really hard time with that reality. I am scared out of my head most days, but my last scan a few weeks ago still showed NED. Please let it stay that way for always.

Please?

[andy21]

That was how the last day of my innocent old life ended

Julie, you write very eloquently and any family touched by Cancer can relate to the two very different periods in one's life:
BC: Before Cancer
DC: During Cancer

Cancer journey is like jumping from an airplane with faith as your only parachute. However, even the worst stage Colon Cancer has hope(unlike some other cancers) and there is a distinct possibility of enjoying AC as in book below:
AC: After Cancer

After the Cancer, What Now? ? ?: Facing the "First Day of the Rest of My Life
by Darrell L. Smith Sr.

http://www.amazon.com/After-Cancer-What ... +first+day

[kirac]

This is the story of my husband's diagnosis.

For the past few years, DH seemed to becoming lactose intolerant. It didn't seem that unusual, but he would occasionally feel constipated or have bowel issues. Then he saw blood in his stool. So, I urged him to get it checked out. He did, and the PCP said that it was probably hemorrhoids. He was 35. A few months later, he bled again (neither time was that much), and he asked the PCP for a referral to a GI. It took a month or two to get an appointment, and he booked it after our second child was born. He didn't want to schedule it when I might be giving birth.

Our son was born. When he was a few weeks old, DH has his appointment with the GI doc. The wonderful GI doc did a flexible sigmoidoscopy and discovered the polyp. We hoped it was not cancerous. Worse case, we hoped it was stage 1 because he really didn't have any symptoms. We were both exhausted from the new baby; he thought if I went to the doctor's office to get the results from the biospy, I would control the conversation. I told him that wasn't true at all so I told him that if he wanted to go by himself, he could do that. He went by himself, and we found out it wasn't good. But we still didn't know the stage, we just knew it was cancerous.

His dad and stepmom were going to visit us to see the new baby. We broke the news to them and asked them to stay a day longer (they were driving from two hours away) so that DH could do his procedure, and they could watch the kids. His dad reluctantly agreed. They live far away, but it was winter, so they were escaping their cold winter nearby for a few months only. We found out that it was stage 3, and it blew my mind that they did not offer to come visit again. Didn't his dad want to see him before he started chemo and radiation?

Luckily our good friend is a rad onc so he cut down on the process of finding a good medical team. It was not an easy year. DH did a great job of getting through a lot of it on his own. I managed to take care of our kids, take on more responsibility at work and help him. I'm still recovering. He's still recovering from treatment. We're hopeful for our future. That's all I can recall. Remember, I was sleep-deprived

[Choijk]

Julie, thank you for sharing that beautiful post. I cried as I have been crying as I have been following your journey. I know we never met, but Your stories always hit home with me. I am also from California. Went to Arcadia high, am very familiar with Monterey park 626 area, of Asian descent, raised by immigrant parents, in my 30s, and also an attorney. I look forward to reading vol 2, and many more stories from you. Sending you love from California, June

[CM35]

Julie,
To answer your question, is anyone still as traumatized by their diagnosis story as you, I would venture to say I am. I had my one year cancerversary week in April, and I would say those days convinced me 100% that PTSD is absolutely real thing. You are incredibly strong to be able to share your story in words; I tried, but mentally and emotionally I was not able. I will say, after my first meeting with my oncologist, who told me I was incurable, I was completely destroyed and broken. I was numb at the clinic, but when I came home, I went to my bedroom, locked the door, and literally collapsed into a heap on the floor and cried. My daughters were 1 year and 3 years old, and my heart was so broken for them, the pain was more than I could bear. How could I leave them to grow up without a mom? I just couldn't stop the reel from playing in my head: my girls crying for me, and me not being there. I can't come up with adequate words to describe what that time was like.

You are a gifted writer, I have read your blog a few times. I am amazed at how candidly you share your experience. Thank you....

Colleen