Treatment moving Forward

Wow, a lot has been happening. I so greatly appreciate Paul writing the last blog. He has written two, and in both cases I was not in the right space to write. I did not tell him, he did not ask. He must just have known I was struggling with what was going on, and how to convey matters. Nonetheless, his blog also inspired me to be a bit more transparent. What I have presented in the past has of course been truthful, I just haven’t necessarily included the “rough” spots too. As I approach 7 months since the diagnosis, it is unavoidable to hit some rough spots, and MAN we have had some in the past month.

After the error causing a delay in treatment, we took the time to allocate our energy towards getting other opinions for future treatment. I thought this refocus would help me feel constructive and that the time was not wasted. What I wasn’t necessarily ready for was how the results of these consultations would make me feel. In theory, I thought as long as one oncology department in this country could present a plan to not just reduce, but eliminate all the cancer, I would be ecstatic. In reality, when I had my first consultation that affirmed the current treatment plan to just continue chemo, I was devastated. This option would not eliminate the disease, it would just keep it at bay as long as possible. That’s a nice way of putting it. What it means is that the oncologist believes my cancer is incurable. Hearing it once when first diagnosed was numbing. Hearing it the second time was gut wrenching. It put me into a state of mourning for a number of days. It was very hard not to become a cynic and think all the others would follow suit, and that prognosis would be unavoidable. Luckily, the other consultations were already scheduled and I didn’t have time to sulk. To paraphrase another cancer patient who writes about her experiences, it’s okay to have a bad day. Just don’t pack up and live there.

I flew out to San Diego to meet with an oncology surgeon. My aunt/god mother lives there, and she had heard great things about this doctor. Knowing he had such a prominent professional reputation gave me some hope. When we met with him, he confidently outlined a combination surgery where my colostomy could be reversed in the colon AND the lesions in the liver could be removed. He then asked if I was going other places. I outlined the other consultations on the schedule, and once I mentioned the Mayo Clinic he chimed in. It turned out that he has a former colleague he used to work with that did the same type of surgery he did. He told me that he would be able to do the surgery if I wanted, but there would benefits to doing such a procedure closer to home, both for me and my caregivers. So he said he would call his colleague to see if I could get in specifically with him, and at an earlier date. The very next day (Friday) when I was flying home, the Mayo Clinic called regarding his referral. They were able to get me  in the following Monday.  My previous experience trying to schedule a consultation with Mayo wasn’t the smoothest process, and it resulted in an appointment 6 weeks out. To get an appointment the following business day was crazy. I guess it goes to show it’s not what you know, but who you know.

When we went to Mayo, the surgeon there outlined the surgery in detail. He indicated he would be reaching out to a thoracic surgeon to see if they believed the nodules in the lungs were also removable. The next morning he called me personally to let me know the thoracic surgeon agreed, and we could move forward with the first surgery, which would be the combination colostomy/liver surgery. Mayo is in Rochester MN and 80 miles south of the Twin Cities. The travel there is exponentially easier than other places we were considering. I still went on to Houston to meet with oncologists and surgeons at MD Anderson to see if they had a differing treatment option that should be considered. They came back with a similar recommendation, so we felt our best route was to continue with Mayo and be close to home when doing these surgeries.

There have been instances throughout my treatment when things have fallen together serendipitously. Paul and I have tried to embrace these instances and look to them as affirmation we were on the right track. There were two examples of this from our consultation at Mayo. First was when making the appointment with UC San Diego, I misheard the scheduler and wrote down the surgeon’s name as Dr. Cleary. It turns out the surgeon in San Diego was Dr. Clary. However, the surgeon he referred me to at Mayo was Dr. Cleary. What I wrote down initially turned out to be the name of the surgeon we would come to work with. The second was November 21. When we received our chemo schedule way back in May, I laid out all the dates and knew if we had no delays I would be done with chemo on October 12. Even in May I knew my colostomy bag would continue to be a pain in the ass, and a constant disrupter. I asked when the surgery to reverse the colostomy could happen. I was told I needed 6 weeks after chemo for the drugs to get out of my system before the surgery could happen. 6 weeks from that October 12 date is November 21. That dates was blazed in my head, and thought about every time I had issues with my colostomy bag. Flash forward to when we were notified of the chemo delay and new plans were made. All of these dates went out the window, until Mayo. Once we agreed to the treatment plan, the date they could do the combo surgery was November 21. Somehow through all of these changes, Tommy and his bag with still be gone on November 21.

Paul and I are relieved to come to a decision, but the process has been exhausting. As mentioned before, theory was far from reality. The emotional toll these consultations took was immense. The conversations talking about the details and weighing the options were so taxing. I am eternally indebted to the friends and family that have helped Paul and I throughout this process. Thank you for the calls, the little gifts, the funny texts, the well wishes, the prayers, and all the positive energy and love you have poured upon us. We love you too.

A recap of the last 30 or so days. Reflections on events that have transpired and thoughts about what is shortly to come.

 It has been about a month since the last entry as to the progress that Sally has been making.  I wanted to make those that around us more familiar with what has been transpiring recently. We have been through a variety of events that continue to shape our focus and dedication as we strive to move forward and face the next steps that are to occur.  So, chemo #10 went according to plan of September 12^th without a hitch.  

Sal had the usual symptoms of fatigue and some neuropathy during the 48 hour period afterwards but was within her normal limits based on the 9 previous experiences with this procedure.  Her cousin, Mo, came in on the evening of the 12^th to give Sal some support for the two days after her session.  Mo has been with us before and it was a heartwarming experience to have her around again for events that involved food and laughs and a temporary disregard for the issues we current face.  This time was no different.  Ironically enough we accompanied Mo to the airport on Friday, the 14^th, in the late afternoon to get on the same flight back to Chicago for a weekend away to see friends and family.  Sal had a work event the following week and it was a 48 hour escape for me.  It was the first time that I had been back to Chicago since moving away in April of 2017.  Chicago had seemingly changed but at the same time it was just the way I left it.  Chicago is always busy.  There is an endless stream of activity on the streets, in bars and restaurants, and everyone seemingly is either late or too concerned with their own affairs to be cordial or make contact with others.  But we were blessed to be able to stay with a couple, Katie and John, who I worked with at my previous employer in Chicago.  They opened their home to us and allowed for us to have a place to crash while we went out into the big city.  Katie and John are the type of people that when you do establish a friendship with them, it doesn’t matter if you haven’t seen them in over a year, the friendship picks back up without hesitation.  Their laughter and warmth are such that it grips you with a feeling of security and the invitation to leave your current concerns at the front door and to reconnect in a way that alleviates any current pain, worry or discomfort.   We laughed at stupid things, ate too many doughnuts, drank too much coffee, and enjoyed the time in which we had with them. After we left them, it was on to see another friend who is of the same variety as Katie and John, another Catie.  Being around Catie is always a reason to smile.  Her emotional spark and demeanor allows for myself as well as Sally to feel like the rest of the world is occurring and is secondary at the moment.  As with Katie and John, with Catie we laughed until our bodies ached, enjoyed traversing through the city, and had a wonderful meal with her and Ray before we departed for the evening.

 

Sal stayed in Chicago for a work event and I transitioned back home with having “recharged” but facing a busy week until Sally returned at the end of the week.  Next up on the rotating guest list at our house was my parents.  They had come in and were spending some time in the Northern part of Minnesota before coming back to be with us and support Sally in chemo #11 on September 26th.  Our time with my parents was a nice respite.  It was wonderful to see them as always.  There were times while being with them that they were here that I had forgotten that they were here for a dual purpose.  We had laughs and relished the company as we navigated ice cream consumption, the behaviors of cats, the Andy Griffith show, and playing rummy to name a few.

But then September 26^th occurred.  The day started like any other.  It was chilly outside and I headed off to work as the fall season was just a couple of days old.  My thoughts on my commute were filled with Sally being at chemo, what we were doing for dinner, and when would be a good time go see a Gilda Radner documentary with my parents between then and Friday night. Sal and my mom were heading off to her chemo appointment shortly and I would be harassing them via text and phone calls for updates throughout the day.  But as I made a call to Sally around 10am that morning, I had no idea what would transpire next.  Sal communicated to me that during the course of her appointment with her oncologist, it was disclosed that somewhere along the lines the Oncology center had not ordered the meds for her chemo #11. A medication error had occurred. She would not have chemo #11 as prescribed that day. Immediately my mind, thoughts, and behaviors reverted back to March 30^th when she was initially diagnosed.  Why did this happen?   She went in for blood work 2 days before so they knew she was going to be there that day. What does this mean? How does this affect future plans for vacation, her surgery to remove her stoma and re-connect her colon, and how does Sal feel about all of this? We had just spoken to the surgeon two days before chemo #11 and had scheduled her surgery for the week after thanksgiving. I had my thoughts and fears about this development but I was more concerned with how Sally was taking this.  I was slightly relieved that my mom was there with her.  But I felt guilty that I was not there to support her in the moment.  

The oncologist indicated to Sally that if she was to continue with chemo #11, it would have to occur the following week.  At that point, there would have been a particular chemo drug that would have been out of her system for 3 weeks. For her to have her surgery to reconnect her colon and close her stoma, this particular drug would need to be out of her system for 6 weeks.  So after a brief discussion between the two of us, Sally had spoken to the doctor and determined that she could have her surgery at the end of October rather than late November, give her time to rest and heal from the surgery, and then to complete her last two chemo sessions as initially prescribed. We were both unsure, confused, and a little bewildered about this development because just two days before, we had in our minds of what the process would be from finishing chemo to then having her surgery in late November.  The rest of the day I can recall was very hazy as it felt as though there was a ringing in my ears that just wouldn’t go away.  I tried as hard as I could to remain upright and positive not only for me but especially for Sally.  

This photo was taken by my mother late on that afternoon.  You know, it’s funny to look at that picture now and to see my coerced, half-faked smile with so much internal chaos swarming just below the surface. As the day came to an end, we were able to process the events of the day and it was finalized that her surgery date was now confirmed and set for Friday, October 26^th. 

So ,as that news was settling in and we were making plans for that events that are to come, Sally was diligently working on securing 2^nd opinions for her next course of treatment once her surgery and the 12 chemo sessions are finished.  And for those who are reading this and know Sally, we know that at the very least, when given the opportunity, Sally will be as well informed as she can be when making a decision. It doesn’t matter if she’s wanting to buy a car or explore a new restaurant, she’s gonna get as much as information as she can.  As I write this Sally is across the country in San Diego with her aunt Jill at a cancer treatment center for a second opinion. Last week on the 4^th of October she had a consultation with a facility at the University of Minnesota.  Next week she will be traveling to Houston for a consultation at a renowned cancer treatment facility. And just to “fill her calendar”, she has another consultation on the 24^th of this month in NYC. Then, after her surgery, she has a consultation session at Mayo clinic in Rochester.  In total, she picked 5 facilities both near us and around to country to consider the next steps that we will take.  Obviously, she doesn’t know what she will do at this point but we will talk amongst ourselves and make a decision sometime in mid-November after we return from the mountains of northern New Mexico.

Those last few paragraphs could have been longer because it seems to me as though the information provided was more complex and entwined than it appears in its written form.  Or maybe it isn’t.  Maybe it’s something that seems confusing or world shattering in the moment and as time passes, the narrative of what had been becomes clear. It is what it is.  It now matters how we process it and the mindset we undertake as we face the coming days.  I am recharged.  I am refocused.  I am ready to walk hand in hand with Sally as we get ready for an “action packed” October.  Today is the 195^th day of our current adventure.  We have endured 281,000 minutes of this current ideation and some of those minutes have felt like a lifetime. I don’t know what is coming in the days ahead but I have Sally.  And she has me.  Wherever this journey takes us, we will be together. As I look for a way to close this update, my mind drifts back to a particular passage of the wedding vows we exchanged 6 plus years ago.

“I pledge to you that yours will be the name I cry aloud in the night and the eyes into which I smile in the morning. I pledge to you the first bit of my meat and the first drink from my cup. I pledge to you my living and dying, each equally in your care. I shall be a shield for your back and you for mine.”

Thank you everyone for reading. And Sally Forth!!!