A New Year: Time to Bring the Old System Back Online

Happy 2019! 

In two days my intestines will be reconnected. I will hopefully be functioning somewhat like a regular person in a few short weeks. It may not go that easy. Many folks have urgency and incontinence issues. I've also seen accounts of people having relatively few issues so let's hope for that. I could be in the hospital a few nights depending on how quickly the old systems reboot themselves. The surgery itself will be a few hours and I'll only be having a small incision adjacent to my stoma. I'm hoping this means less pain and a quicker recovery.  For the first time since this all began, I'll be having a surgery where they don't take parts out. 

As for the cancer side of things; I am currently NED (no evidence of disease). A few weeks ago I had a CT scan and blood work. There was nothing to be seen on the scan. The blood work was in the normal range for the first time since they started tracking. The doctor is hopeful that they got it all and my last bit of cancer was just from one random cell that got loose. I will continue to have scans and blood work every 3 months. We obviously hope that we are done with cancer forever but for now are just taking it 3 months at a time. We are more prepared than ever to face whatever obstacles may arise.

Thanks to everyone for your support during another medically challenging year. Everyone has helped so much in various ways. My siblings traveled with me to Minnesota for my initial consultation at the Mayo Clinic. My wife endured a couple very long days in waiting rooms hoping for good results. She spent many long hours by my side in hospital rooms and 'lived' with me in Minnesota for 10 days. My parents and in-laws kept us afloat in various ways that allowed us to continue our 'normal' life as much as possible. Other relatives, friends, and many others helped in many various ways including food, support, love, prayers, and probably a hundred other ways I won't list here. 

Thanks to everyone. I am sending you my wishes for a great 2019!

Limbo

There is a lot of waiting during all of this cancer nonsense. I wait to heal from surgery. I wait for the next surgery I wait for my next scan or blood test. I wait to get a stent out of a ureter. I wait for an infection to clear up. I wait for a traditional toilet break. I am trying not to wait for the end of this nonsense.

The truth is I am in limbo. My last path report was all clear. There may be no cancer growing inside of me. The previous path report was all clear too. There was still cancer growing inside of me. Back in June when I had two stents from the Mayo Clinic removed, I told my urologist he would never be sticking objects up my junk again. I awoke from my October surgery to discover he had indeed stuck objects up my junk again. Two weeks ago I could barely leave the couch due to a UTI that eventually landed me in the ER. This past weekend I did chores and I walked and I felt normal.

Tomorrow I will get the stent out. As I have stated in past posts there are no guarantees. I won't be ringing in bells. Instead I will do my best to enjoy feeling good. My next scans and test will eventually arrive in a few weeks and I'll deal with the results then. I can't wait for this nonsense to end when I have no idea how it will end.

The state of my cancer and more importantly my #1 and #2 situation

Today marks twelve days since my cytoreductive surgery. I followed up with my surgeon this morning. We were informed that my pathology report was cancer free besides the tumor we already know about. There were no positive lymph nodes or evidence of cells elsewhere. This is certainly good news but I think we are, understandably, feeling cautious. and will look forward to the next scan and blood work in December. The surgeon referred to my cancer as Stage IV which I don't like but makes sense with this latest metastasis. It's just a label and doesn't change anything. My oncologist has so far been a beacon of positivity and refuses to put a number on my chances. He very much still believes this is curative. 

At my last appointment with my urologist in September, he had given me the all clear and lamented that he never really got to do any surgical work on me. Well lady luck was on his side. The previous bladder "stretching' during the Mayo surgery had apparently caused some damage to my right ureter which was previously unaffected. The urologist had to remove some of this ureter during the latest surgery. Due to this I again have a foley catheter for a few weeks. So far this hasn't been quite as uncomfortable as my previous catheter. I have been getting spasms again which result from my bladder trying to expel the balloon-like equipment that sits in there now.

I am also learning to deal with my illeostomy. They reattached my colon to my rectum and that portion of my plumbing is getting a couple months off. I have to pay more attention to what I eat now. The illeostomy is a lot more active and dehydration and blockages can be a concern. It's not terrible but I'm thankful to not have it forever.

So in December or January I will get my illeostomy taken down and have an almost fully functioning digestive system. The surgery itself should be smaller than the previous but it will come with it's own challenges. It can take several months before folks feel comfortable enough to stray far from the bathroom. My supply bag of ostomy and catheter supplies may be replaced by adult diapers for awhile. There is a common saying 'no parent should outlive their child'. I'm officially changing it to 'no child should experience adult diapers before their parents".  Anyone know a good local eco-friendly cloth adult diaper service?

The cancer hole

Next Friday I will undergo my 3rd major surgery in a year and a half. My hope from my last post was that this time would not be as intensive as the prior surgery. Well I guess I won't know until I have the experience but it certainly appears that this will rival my previous surgical adventures. 

I will be having a cytoreductive surgery with HIPEC. I believe cyto is derived from a Latin word meaning 'stupid !*$&%ing' cancer' and reductive means 'lets cuts the crap out of the stupid !*$&%ing cancer'. Essentially I will be cut open in the same manner as previous surgeries. They will remove the mass on my small intestine. They will scour the rest of the abdominal cavity for any other tumors and remove them. If at that point they think it is reasonable, my colostomy will be taken down and the little happy guy currently hanging out to the left of my belly button will be reattached to his good friend, the rectum. However I will not be resuming my normal bathroom reading time just yet. They want to ensure the colon reattachment heals properly so they will give that a couple months to relax. For now they will bring a piece of small intestine out of the same spot next to my belly button. Remember the old nursery rhyme about the digestive system/municipal sewer system, "the small bowel comes before the large intestine". Well that means my food won't be quite as digested when it exits and my bag will likely fill up more quickly. Luckily, after the two months are complete they will test the reattachment and if all is as it should be they will put me back together for good.

This surgery has a second part. HIPEC stands for hyperthermic intraperitoneal chemotherapy. After all the removing and reattaching is complete,  they will pump my abdominal cavity (officially known as the peritoneum), full of some powerful heated chemo that will circulate for 100 minutes. In my last post I said that metastasis to the small intestine is very rare from a primary colon cancer. I have since learned that metastasis to the peritoneum is not so rare. It's the second most common site of colon cancer metastasis after the liver (by the way everyone that has viewed my most recent scan thinks my liver is just fine). Cancer cells can float around in the peritoneal fluid and attach to any number of organs or the lining of the cavity. The purpose of this chemotherapy is to apply a high does of chemo to potentially impacted areas without impacting the rest of my body. I've been told I likely won't feel impacts from the chemo but I suspect that is because all the fun feelings from the surgery will be overwhelming. In fact I was told to expect around a 10 day stay in the hospital. This will be my longest stay to date so I've decided to record all the Kavanaugh hearings and watch them in the hospital. NO SPOILERS PLEASE!!!

So we won't know with any certainty the severity of the stupid !*$&%ing cancer until the surgery is complete. My oncologist is hopeful that the mass is just a single recurrence related to one of my surgeries. However, the surgeon I saw this week said the mass is not near the site where they removed some small intestine in May. He also seems to suspect the peritoneal metastasis a bit more. Regardless both doctors still stress we are still working towards a curative result. Today I even had a bit of a panic attack after descending into an internet cancer hole and emailed my oncologist. He says regardless of metastasis or not, "This is absolutely curative." and "I still feel more optimistic than not that we can get this treated definitively." For the next week I will put my faith in these words and focus on preparing for and then recovering from the surgery. 

No guarantees

Over two months have passed since I last added to this blog. During those two months I have been the most active I have been since pre-cancer. I walked, ran and hiked. I enjoyed my family and fully participated in my children's lives again. I socialized and attended events with friends. I worked on our garden and landscaping. I honestly enjoyed the monotony of a standard work week. I did not take pain pills. I was not nauseous. I did not have medical appointments. I tried to enjoy life to the best of my abilities because I know there are no guarantees.

I of course was not without some struggle. I am less than six months out from the Mayo Clinic surgery. I have developed a parastomal hernia. There is no pain associated with this but the old ostomy supplies I was using were no longer lasting. Add in running and lots of summer sweat and  my equipment was coming off after less than a day of use. Ideally, I would get 2 to 3 days out of my supplies. This meant leaks and smells and a lot of dealing with poop. However, I felt good that this was my worst problem. Honestly I felt much worse for Carrie. She has endured some mighty awful odors for me. All things considered, an intestine sticking out of my abdomen is a piece of cake (gross!) compared to cancer treatments and surgeries. I visited an ostomy nurse and ordered samples online eventually settling on some supplies that last as long as I would like, even with a more active life.

Last week I had a follow-up with my radiation oncologist. This appointment would just be me checking in with her, telling her how great I feel, thanking her and shaking hands hopefully to never interact in a medical capacity again. Cancer treatment is interesting in that we have met so many wonderful people that we hope to never have to see again. The appointment went essentially as planned. However, before I left they took blood for some tests. I was not expecting to do this until next month but it certainly was not going to hurt to check. I left before the results were in and would check them on my phone later.

Well later, as I drove down I-25 at top speeds I might have looked at my phone. I know you are all horrified. My metabolic panel looked healthy. So did my CBC. One more test was left to view. The dreaded carcinoembryonic antigen or CEA for short. CEA is a type of protein secreted in gastro-intestinal cells that all of us have at a very low level. These level can increase with some cancers such as colon cancer. It cannot be used to for diagnosis one way or the other but is often a good marker in certain individuals. So far I have proved to be one of these individuals. Every time I've had cancer growing inside my CEA has gone up. Every time I've received treatment or surgery it has gone down. A normal non-smoking adult will have a level usually below 3. I've never had a number below 5 but I also never had it tested before cancer. It's not something measured on healthy people. Before my first surgery in the spring of 2017 it was around 20. A day or two after surgery it was around 5. When I was having major pain last December and it was around 40. After my 5 weeks of radiation treatment it was around 5. Just before my Mayo Clinic surgery it was creeping up to around 8 which made sense to me since the cancer wasn't out yet and I was two months past radiation. This July at my first post surgery oncology check in it was 5.

Now that you know a little about CEA lets return to me barreling down a highway. I clicked on the test, viewed the results and let out a string of curse words so powerful that I swerved off a bridge, rolled down a ravine, collided a bus full of the most kind, peaceful nuns and both vehicle exploded; an event which resulted in the Colorado State Legislature making it illegal to check medical results while driving. At least, that is sort of how it felt. My CEA number was 27.  What actually resulted was the pushing up of my scheduled October CT scan and my next appointment with my medical oncologist.  The CT scan shows something. A mystery spot on my small intestine. There are many uncertainties with this one. First, colon cancer rarely if ever metastasizes to the small intestine. Second, it doesn't look like a tumor to the doctors that have reviewed it. Finally, those doctors don't seem so sure what it looks like.

The initial plan was to watch it for two months and see if it grew. However, my mystery spot was then presented to the hospital's surgical oncologists who seemed to have convinced my oncologist that it is probably not worth the risk to wait especially since my CEA has so far been a good indicator of what is going on inside. I tend to agree with their sentiment. Next week I will meet with a surgical oncologist in Denver and if I chose to move forward will likely have a surgery sometime in the coming weeks. I am also going to consult with my Mayo Clinic surgeon to see if he has thoughts on the scan results.

This certainly is a surprise to us but we are more equipped than ever to roll with the punches. I know very little about the surgery at this point (basically nothing). I will provide another update before it happens. I hope it won't be as intensive as the two previous ones.  I hope my downtime is short. I hope this is the last one but there are no guarantees.

Post Surgery Scan

I have been avoiding doing another blog post until I had good news. Now I am happy to report that my first post treatment/surgery scan and blood work has come back with no evidence of cancer. During the past few weeks I have felt better than I have in a year and a half. I am running again and have resumed a mostly normal life of work and family. 

After my last post, I struggled until around mid-June with urinary tract infections brought on by the catheter I had in until 5/29 and the uretal stents I had in until 6/20. Originally I was given an ineffective antibiotic before being switched to something stronger. Once the stents came out I felt an almost immediate relief and return of energy. I then peed all over my procedure chair which was also relieving. Ever since I've had a daily internal debate about what I hate more; the NG tube insertion I had in the hospital or the cystoscopy with the stent removal (look these up on youtube if you are unfamiliar). I think I've decided but won't say. I don't want to influence anyone's opinion. 

There are still of course concerns. My oncologist says he will watch me like a hawk this first year or two since that is when recurrence is mostly likely to occur. The scan also showed some abnormalities related to the surgery. There are still some abormalities in my urinary tract. The right side the system is showing some hydronephrosis. The left side is showing diffuse hydroureteronephrosis. Yeah I know, fun medical terms! My understanding is that these involves the backing up of fluid. The fact that my right side is involved is interesting since that side was not involved with my cancer but I have noticed a little pain there this past week when using the restroom. However, my oncologists thinks this may be a result of the bladder being reshaped during surgery. He will consult with my urologist but I am already scheduled to have renal study in September. During this they will basically image my urinary tract and determine how it is flowing. 

I also have some pockets of fluid in my abdomen that may resolve themselves but my surgeon at Mayo is going to be consulted regarding this. Nothing may come of either of these issues and the issues may mend on their own but we will keep an eye on them. Finally, my oncologist seemed to really think after a year of being cancer free I should push to have my ostomy taken down. I would likely return to the surgeon at Mayo for that surgery. 

As long as I am feeling healthy I will likely post less on this blog. If you don't here anything for awhile it is likely good or maybe the hydroureteronephrosis took me down. It is a condition with a lot of letters after all. I will post again in a couple months, after I have my next round of bloodwork and scans. Once again I can't thank everyone enough for you love and support. Thanks so much. 

The Surgery

Carrie and I awoke in the Minnesota dark at 430 am on Friday May 4th after a rough night for me of bowel prep. We gathered our belongings and made the 15 minute walk to the Methodist hospital on the cool spring morning. At the front desk I was given my inpatient hospital band and sent upstairs for the first step of surgical prep. My vitals were taken and after going through many questions a couple different times I was sent to another floor for more prep and Carrie was sent to a waiting area. In the second prep area I was given a bed and a curtain separated me from the many other patients preparing for their operations. My chest port was accessed which always involves a saline flush which can be tasted as it is injected. Another nurse came in and shaved my belly.  I was visited by one of the surgeon's resident, one of the urologist and by the anesthesiologist. Throughout it all there was a lot of small talk regarding Colorado and my family.

Eventually an operating nurse came in to wheel me away. I was taken to the largest operating room I have yet seen. It seemed to me there were at least twenty different people buzzing around the room preparing for who knows what. There was a large machine on one side of the room similar to the radiation machine I had encountered during treatment. Someone began to talk to me again about Colorado and about hiking and then a breathing mask was put over my mouth and I was out.

I awoke somewhere around 12 hours later being lifted by several people and a ceiling sling into my hospital bed. I was very out of it but reached down to my abdomen. I still had an ostomy bag right where it had been that morning. Uncertain about what was done to me I managed to get a nurse to give me a phone and called Carrie. She had gone home after a very long day of waiting and being told that I might not even really be awake that night. She didn't know much more than me but they had left my ostomy due to having to remove more of the rectal portion of my colon than expected.

The next morning my surgeon came in and I was given some clarity about the surgical proceedings. The tumor had been slightly larger than scans had shown. They took more colon than planned and decided is was best to have a year or two of monitoring before my ostomy could be taken down. The tumor did not have issues with any major arteries or veins so the vascular surgeons did not have to be involved. Unfortunately both of my left-sided ureters were involved. Large pieces had to be removed. The urologists then stretched my bladder up to meet the remaining ureters. A small piece of small intestine was also removed. The surgeon was confident that all cancer was removed.

The surgeon did give me a piece of information that I am still chewing on. He told me that there was an area of blood vessels (the area that had been my positive margin after the first surgery) that should have been removed during my first surgery. He said it was a fairly standard part of the procedure and didn't understand why it was not done at the time.

I have much more to write about my hospitalization and recovery which I'm still in the midst of. Things still aren't functioning normally and I had a few rough days mentally and physically in the hospital. I will document all of that in the near future but for now will leave you with this. I received my pathology report last week before leaving the hospital. All margins negative for cancer. Urerters negative for cancer. Small bowel negative for cancer. To the best of my current knowledge I am negative for cancer.