On Friday, 11th January, I had my last radiation treatment and took my last oral chemo pills; hopefully forever. It’s been a tough nine-month journey for both Sharon and I, starting in April of last year.
Initial symptoms > GI follow-up and the endoscopic retrograde cholangiopancreatography (ERCP) procedure > diagnosis of an aggressive, but limited, malignancy in the Ampulla of Vater > the complex and dangerous Whipple surgery > an eighteen-week protocol of intravenous and oral chemotherapy > a six-week protocol of radiation and oral chemo.
The only residual issues at the moment are occasional severe pains in the upper right side of my body (chest/shoulder) and some remaining GI side-effects from the oral chemo. It does not seem likely that its either a cardiac or oncological issue. Gallbladder problems sometimes cause neurological pain that can extend to the right shoulder and/or chest. Of course, I no longer have a gallbladder but the nerve connections might still be there? Either the phrenic nerve (neck to diaphragm) or the vagus nerve (brain stem to colon) could possibly be involved. Watch this space. And …. on Friday I go into the Dell Seton Teaching Hospital to have my infusion port taken out ….. yeah !!!!
2018 can be looked at in one of two ways:
Glass half-empty: in 2018, I was diagnosed with potentially life-threatening cancer
Glass half-full: in 2018, I was “cured” of cancer
Of course, I do not think that we are totally naïve. Doctors generally do not like to use the word “cure” when it comes to oncology. Cancers can return and, if they do, are often more serious than the original malignancy. However, I was “surgically cancer-free” after the Whipple and we deliberately chose the aggressive option of prophylactic chemo & radiation. As I have said before, we are shooting for 20 years, not two. The next five years will be critical as recurrences are most likely to occur within this time frame. So far, we have never really talked about prognoses. Not because our heads are in the sand, but because getting a true apples-to-apples analysis is almost impossible. The sample population would have to be ampullary patients treated in the last 5-10 years, have a similar condition, were in the same state of initial general health etc. etc. Whatever the prognosis, our goal is for me to be at the far-right tail of the mortality curve.
And my soap-box preaching now looks like this:
- For most things medical, get your internist or family practitioner in the loop at the beginning. Do not self-diagnose and immediately rush to a specialist.
- Do not ignore seemingly unrelated and possibly minor symptoms. Without advocating paranoia, go get yourself checked out. Then you, and your medical team, can “connect the dots”.
- If you have insurance (and I am fully aware that many people, tragically, do not), the US medical system works but there are instances when you do have to be your own advocate.
- Put things in perspective. 99% of the things that keep you awake at night, do not matter a hoot.
- Be totally shameless about asking friends and family for help but be diplomatically selective if necessary: good care-givers must be part of the solution.
- However bad things are, the chances are that there are other folks facing much tougher mountains to climb. Most of them handle their own unique challenges with remarkable courage, optimism and cheerfulness. Be inspired by them.
- If you are a care-giver, make sure you take good care of yourself, both physically and mentally.
- Healing is a complex process. A key component is the unwavering support of family and friends.
And so to the future. My complete recovery will be long and that’s totally OK. My primary goals are (1) to establish the “new norm” which hopefully will include a well-behaved gastrointestinal system (2) to diagnose and treat my upper body pain (3) to transition back to a “healthy” diet and put on about 20 pounds (150 > 170) of quality body-weight (4) to regain muscular and cardiovascular fitness that allows me to ride with my cycling buddies again (5) to regain our lives, including our semi-nomadic world travelling (6) not to forget what we have just been through and the lessons learned.
And just to reiterate one more time: every single person who has read or commented on this Caring Bridge blog has been part of the solution and for this, both Sharon and I are so very appreciative.