July 11 - Doctor Appointment

Yesterday my parents met with Dr. Datta, the surgeon.  Dr. Datta had consulted the day before with a team of surgeons and oncologists who meet once a week to discuss patients who are in their care (I’m guessing patients with bowel related cancer).  Yesterday they discussed the five patients they are most concerned about in Southern Alberta, one of them being my dad.  Dr. Datta said my dad’s case is particularly complicated because of the Crohn’s disease and the high output to his ostomy.  The doctors cannot treat this like a typical case of bowel cancer.  For example, because of the gap in my dad’s body from where his bowel was removed during his surgery in May, his small intestine will fall down into that space a little bit.  Therefore, radiation to that area will cause some damage to the small intestine.  This could lead to a higher ostomy output, which could put too much strain on my dad’s already weakened kidney’s.  This is just one area where my dad’s case is complicated and many decisions have to be weighed.  The doctors, in conjunction with my parents, will make decisions about treatment once they have the results of my dad’s MRI and PET scan.  The MRI is scheduled for July 16 and the PET scan for July 31.  I should be able to update the blog again after we get the results from each of those tests. 

On a positive note, Dr. Datta said the pain in my dad’s butt did not necessarily seem like cancer.  So, we’ll just wait and see.  Right now we’re hoping that the cancer still in my dad is not growing quickly and that my dad will put on some more weight.  The PET scan is the test we are really waiting on that will tell us quite a bit.  Please pray that the PET scan will show us that my dad’s cancer has not spread and is contained.

Papa John playing with grand kids in March.

July 4 - First appointment with oncologists

On Tuesday, July 2 my dad met with the oncologist specializing in his radiation (Dr. Doll) and then yesterday, July 3, my dad met with the oncologist specializing in his chemotherapy (Dr. Lipichuk).  Here is information that they gave him:

• his cancer is likely quite an aggressive cancer
• he will be getting a number of tests in the next few weeks, including an MRI (July 16), a PET scan (July 31), and bloodwork
• he is meeting with Dr. Datta next week to determine when he can begin radiation and chemo.  Also, there is still cancer left in my dad and one of the oncologists wondered about the possibility of another surgery to remove more cancer.  My dad will ask Dr. Datta about this, but we all remember Dr. Datta already telling us that he took out everything he could, so we don't think another surgery is likely at this point
• the increased pain my dad has been feeling in his butt the past week or so could be cancer returning.  If the pain increases at all before his appointment with Dr. Datta, he is supposed to go to the Emergency Room at the Peter Lougheed hospital.  
•  radiation could start within the next month or so.  It will involve getting to the hospital Monday to Friday for five or six weeks for radiation treatment (and low dose chemo).  Unless my dad is up to driving at that point, he will definitely need help getting to and from the hospital. 
• radiation will be followed by four months of chemotherapy.  This will involve a day surgery where a line will be inserted into the artery closest to my dad's heart and then the chemo will be injected through that line.  Chemo varies quite a bit depending on the cancer.  The chemo-therapies used for bowel/colon cancer tend to have less intense side effects than those used to treat many other cancers (like breast cancer).  However, because of complications with Crohn's disease, the doctor told my dad that chemo will probably hit him harder than the average patient.  No one handles pain or suffering better than my dad though, so I won't be surprised if he surprises the doctors. 

My dad is feeling okay these days.  He told me that he isn't thinking much about the big picture, but rather is very focused on his immediate goal, which is to gain weight.  He has to do this by eating a very high fat, low sugar diet.  Sugar speeds up his ostomy output and then he can't put on as much weight.  I'm sure I'm not the only one who wishes that increased sugar intake helped me lose weight. Life is full of irony.

Papa John and Grammy Barb with their 11 grandkids last summer.  

Now they have one more and another one on the way.

When did this all begin?

        My dad pointed out this picture of his family to most of the doctor's and nurses that came into his hospital room this past May and June.

My dad was diagnosed with Crohn's disease when he was 19.  Over the year's he has had surgeries when his Crohn's disease flares up to remove more of his large intestine.  My dad has always handled this without complaint.  One doctor told him that he has never seen someone who has lived so well with Crohn's disease.  As his daughter I can tell you, he's never let the disease have a big impact on his life.  My dad had a major Crohn's surgery in 1988 and then he went for over two decades without the disease flaring up, which is quite remarkable.  A couple years ago he started feeling pain in his rear end.  Over time this got worse and eventually he went to the doctor.  We eventually found out that this pain was caused by Crohn's disease flaring up again, but we now know it could have also been partially caused by cancer.  My dad had surgery for a fistula last July, which indicated that Crohn's disease was likely active again. My dad was referred to Dr. Datta, who is surgeon (and who I also happened to go to high school with).  In September Dr. Datta did surgery to put a seton in to help with the fistula (you can google it if you want more info).  This surgery revealed a second fistula and a second surgery for a second seton was performed.  Then in January a colonoscopy revealed that Crohn's disease was indeed quite active again and that my Dad would have to have an ileostomy (again, google it if you want).  Usually when a colonoscopy is performed it reveals if the patient has colon cancer.  However, in 2% of cases the colonoscopy does not pick up on the cancer.  In my dad's case, the Crohn's disease hid the cancer and the colonoscopy did not reveal the cancer, that was certainly already present.  We've been told that cancer has likely been present for a couple years or so. 

That brings us to this past May 21 when my dad had his ileostomy.  The surgery went well, but Dr. Datta was a little bit concerned with the colon that he was removing, because it felt a little bit too hard for him, so he removed my dad's entire bowel as a precaution and sent the tissue for a biopsy.  As a family we knew tissue had been sent off for a biopsy, but the doctors said it probably wasn't anything to worry about and so we weren't concerned.  On May 29th I got a phone call that rocked my world a little bit.  My parents were calling because Dr. Datta had just been into the hospital room to tell my dad that he had cancer.  That was an emotional day for our family and we were left with so many questions, which have slowly been answered since then.  

Instead of thinking about the cancer over the next few days, our family became somewhat distracted with other health concerns that started to come up for my dad.  First, my dad's body had undergone serious internal changes during the surgery and his insides seemed to be struggling to figure out their new anatomy.  This led to all kinds of complications and suffering for my dad, including the fact that he vomited his wasted instead of it going out to his ostomy bag.  Then he was diagnosed with a bladder infection (which we found out later was e. coli) and he was put on antibiotics.  Somehow the infection made it into his blood stream and he developed sepsis.  This was not discovered until my dad went into septic shock sometime in the night of June 2.  My mom got a terrifying phone call from the hospital very early in the morning on June 3rd telling her that she needed to hurry to the hospital to "help them make some decisions".  All six of my parent's children rushed to the hospital as quick as they could.  This even meant poor Laura, who was a week overdue with her fourth baby had to go to the hospital in Red Deer for a stress tests and then come to Calgary.  Jen was already in town, but Jason drove up from Lethbridge.  He was in the ICU with 2 or 3 doctors and 7 nurses working on him for hours.  Although it had been a close call, by the time we all arrived at the hospital my dad was through the worst and we were assured that he would live.  He still describes that as the worst night of his life (and this is a man who has passed kidney stones multiple times).  In the midst of the septic shock, my dad was also diagnosed with pneumonia.  We are grateful he made it through that night.  After that terrible night, my dad spent a few more days in the ICU and finally started to improve.  He was actually able to start eating solids on June 5th and although it has been baby steps, he has been improving since then.  In just two short weeks in the hospital my dad lost 18 pounds.  After being discharged from the hospital on Monday, June 17th, he actually lost a couple more pounds and was down to 140.  Since then he has started gaining weight and his main focus right now is to gain weight so that his body can be strong going into radiation and chemo.  We will be able to start those as soon as his incisions from his surgery are reasonably healed, hopefully in a few weeks.  

                       My parents and their six kids: Scott (23), Jennifer (almost 32),
                             Sarah (34), Katie (25), Jason (almost 30), Laura (28)

What is this blog about?

On May 29 my dad was diagnosed with colon/bowel cancer.  My Mom asked me to start this blog as a way of updating family and friends on my dad's journey with cancer.  On top of saving my parents the trouble of repeating the same information again and again, this blog has the added benefit of allowing people to visit with my dad like they did before the cancer, rather than spending their time getting the latest health update.  Of course, everyone is still welcome to ask my dad about the cancer or how he is feeling, but this seems like a better way to spread the information. 

I think most of you who would be reading this blog know me, but in case you don't, I'm John's oldest daughter Sarah.  I will be the main person updating this blog, but perhaps at some point my parents may be able to contribute a post or two.  We'll always specify if someone other than me is posting.