Greetings, ruminations, and updates during this holiday season.

Happy Holidays to all.  I hope that as you are reading this that you are one step closer to having the most festive of holidays.  We at the Pearson household cannot express the profound optimism and feelings of love and warmth experienced from others during this holiday season. So I suppose I should start from an update right before thanksgiving and move towards today so here we go. 

Sal was admitted to the hospital at the Mayo Clinic in Rochester, MN on 11/21 in the early a.m. for a procedure that would seek to eliminate “Tommy”, her stoma, reconnect her colon and remove what would be an estimated 10-15% of her liver in order to take 3 separate cancerous cells that had resided on the liver.  She was nervous yet hopeful and we were joined yet again by her parents and brother for the event to act as supports and cheerleaders as we entered this pivotal stage in her recovery. Sal showed great resiliency and fortitude and endured an approximately 6 hours of surgery and another 2 hours in the recovery room.  She was drowsy, she was sore, and she was present.  She had an additional 5 inches added to her 5 inch scar from the Easter surgery amongst other places where they made smaller cuts which made for quite a bit of discomfort all around.  We saw her for only a few minutes before she signaled that she needed rest.  We needed some rest as well after a gut wrenching (no pun intended) day for us as we spent our time waiting for updates by the phone but we knew that all the emotions we felt were worth it the moment we knew saw was in her hospital room, #64-12.  We all went to bed on Thanksgiving Eve knowing what we were thankful for.

As the next day approached, Jim, Polly, Joe, and I took turns in what needed to be done in regards to not only being with Sally but also celebrating the days of thanks at the Airbnb in which he were all centrally located.  I took it upon myself to be the chef de jour that day and had a solid game plan of what needed to be done.  The time for dinner was set and we all ate well, as expected.  It was not necessarily the most fancy or hearty thanksgiving meal I had ever had but being around family that day was more filling than any food could provide. Sal knew some time ago that she would have her surgery on thanksgiving eve and she wanted to have some mashed potatoes on Thanksgiving Day.  Although she could not see it at the time, her plate was served first at our meal.  So the next few days came and went without incident except an increased and sustained heart rate from Sal.  The doctors scanned her body to see if there was anything that was being detected as abnormal.  It was noted that there appeared that to be some fluid in her lungs and steps were taken to remedy that.  The next hurdle observed before discharge came in the shape of “fluid” of some sort residing around her liver.  The plan the doctors made was to insert a drain next to the liver to determine what the substance was.  She was going to have to be cut open again.  A very small incision and an hour later we were relieved to know that the liquid in question was old blood that was left over as the liver portion of the original surgery concluded.  No bile was detected.  At that point, Sally was set for her discharge. All the while though, you could see that Sal was working hard to gain her mobility, have a regular bowel movement, and to eat regular food at an age appropriate level.  She was able to accomplish all of these goals but she was in the hospital for right at a 7 day period before she was able to leave.  Sal can tell you as well as I that we were both ready to be at home amongst our creature comforts, our creatures, and the knowledge and joy of an upcoming holiday season.

Sally and I both had the pleasure of my mother being there when we arrived home from the hospital and she aided me in taking care of Sally for the next 5 days.  I can’t tell you what a wonderful experience we had with my mom the Saturday before she left in which we went to get a Christmas tree and then to decorate it.  That day was filled with excitement not only because getting a Christmas tree is the official start to the holiday season, but that it snowed a few inches during the day.  That combined made the day seem magical as we commiserated in the warmth and glow of our home with those we love as the snow feverishly came down.  Having been raised in Florida, it was a scene that was never seen in Florida and rarely experienced in my adult life living north of the mason/Dixon line with the confluence of time, activity, and the weather cooperating. It was nice to see my mother again, as it always is, but something seemed different this time.  Besides that wonderful day, I noticed something that brought me joy and reverence.  I saw her act as a primary caregiver to my wife in the times in which I was away at work, away in the terms of not being mentally there, or when my body finally need reset from the physical exhaustion I had sustained over a period of time.  For those who do not know me well, my mother acted as a primary caregiver to her father for a few years near the end of his time on this earth.  I watched a woman act with patience.  I watched a woman with relentless love towards others.  I watched a woman struggle between doing what was right and doing what was necessary. I watched a woman who put the needs of others well before herself.  The key element of this disclosure is that I had witnessed her be that for my grandfather some years ago and all the struggle and low points that she experience but had not appreciated her service to my wife not only this time but the multiple other times she had been north to be with us this year.  Seeing this made me swell with a type of joy and pride of which I rarely experience or even know to exist to me personally.  It provided me with an example of how to act and how to carry oneself and how to look for the “light” when it appears that darkness is all around.  Thank you mom.  I love you more than any combination of words I could ever express. 

So as my mom transitioned out of the house, I once again became the primary caregiver to sally.  I had to help myself to realize that this was only a temporary position and when sally recovered, we would be back to a sharing of responsibilities of our lives together.  But this added responsibility was something I experienced earlier this year and the effects of those efforts are still being felt by me today.  I think because I view this task with love, I am driven to carry it out without hesitation and minimal complaining until I find myself exhausted in multiple areas of my being. I feel as though when I undertake this role, I am working to provide my wife the comfort and security that her primary responsibility is to recover.  If that means asking her 20 times an hour if she needs something or happily running to the store for a whim or desire that she may want to doing the chores we both find deplorable and definitely non preferred, I am happy to do so.  I do so because I know without a doubt that if I was in her current position, she would do the same for me.

It is important to note that family has played a large role in Sally’s recovery over these last few weeks and cannot be appreciated enough.  But our friends as well have made an impact of kindness and warmth that cannot be understated. Two weekends ago, a friend of mine that I have known for over 12 years now, Erica, came up to see us from Kanas City for the weekend.  As Sal and I have progressed in our journey through life, we have seen Erica in many different places around the country.  From NYC to PGH to STP to KC, we have enjoyed her company.  I will tell you that every time I know that an encounter with Erica is forthcoming, a smirky smirk appears on my face because I know that the results will be excellent in nature.  She is a rare creature in this world that lights up your day and her insight and vitality are things that can only be most appreciated in person.  I could speak to those interactions but then the previous sentence would somehow be voided. And to follow that up, this past weekend was just as enjoyable as the one two weeks ago.  You see, Sal has a set of girlfriends that she has known since the days of her undergrad here at the U of M that she continues to see and share the collective good times and the bad that they experience as a group.  There are five other women that make up the group or “gaggle” with Sal that I reference here and all but one was here last weekend.  These women do something for Sal that seems to be magical in its application.  Sal’s demeanor changes and her ability to remain in the moment holds steady. It seems as though she regresses back to her college days and the language and the inside jokes become such that I cannot keep up.  Each lady that surrounds Sal in this gaggle has her own strength and I am grateful when they make their appearance because they seemingly build her up in a manner that was previously low and needed attention

It is hard for me to transition from a “light” paragraph to a paragraph that is more introspective and murky.  It is about the concept of struggle versus progress.  I say this in the matter of the dilemma that Sal and I have faced these last almost 9 months.  Some days it is hard for us to see progress when we may feel as though we struggle constantly.  Not every day is a blessing and some days feel like an eternity.  We feel as though we need to be there for one another but in doing so we cannot fully take care of ourselves. And there are moments where this struggle does not seemingly show progress.  But progress can be viewed as either an advance towards a better condition or destination or to move onward in space or time. Sal and I seemed to be forged by our past to know that struggle is to be a part of life. This is from what we have experienced ourselves and what he have been told and believed by those around us.  It is hard sometimes to take the advice and knowledge of others because we either cannot see their progress and perspective or that we feel that they do not have a concept of our current struggle.  Progress can be simple.  Progress can be multilayered and met with struggle at every turn. But struggle is sometimes seen as striving to attain something in the face of resistance or a determined effort under difficulties. Struggle is seemingly simple as well.  But to accept the plight and the condition can be difficult.  This is where we take solace in the struggles we have faced previously and hold it against our current struggle.  From one struggle to another we make progress and we progress.  This explicit knowledge helps us to grow but also to aide in seeing the pain and struggle that others face.  From struggle comes knowledge. From knowledge comes confidence.  From confidence comes planning.  And from planning comes action and then progress.  It is cyclical seemingly but the cycle is not always round in its appearance. 

So as I transition to the end of this blog entry, I wish all who have read it happiness and health during this holiday season.  All of the good vibes and prayers and well wishes and small gifts and holiday cards and texts of encouragement and phone calls to check in on us have been greatly and humbly received.  We cannot fully express the appreciation we have known these last 9 months because this part of our journey together is foreign to us and it is something we hope you don’t have to experience on such a personal and soul gripping level. Even though the above paragraphs may not show total positivity or progress, I want to convey that progress is being had, both on a personal level as well as what Sal and I see together.  And we remain optimistically positive despite the darker reflections recounted above. We are still in the midst of her struggle with this diagnosis.  There will be more tests and doctor appointments in the days following the New Year and we will share that information as to the plan and purpose once it is fully known and digested by us.  So for now, we wish you Happy Holidays.  Talk to you soon.

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!!!

 

Chemo #8 & #9

First off, Sam Smith was AMAZING! You all should see him, but prepare to feel old. His concertgoers are YOUNG. Ha ha

Second, forgive me for being lazy following #8. I let time pass before posting to the blog, and soon enough it was already Chemo #9, so I’m doing a combo post. Thanks for understanding J

Chemo 8 went great. The fatigue is hitting more and more, but that just means more naps for me! I’m getting antsy now that we are closer to the end. I look forward to getting back to doing or having some of the things that have been kinda “off limits” during chemo. Sushi. I never knew I was such a sushi fan until my oncologist told me my food had to be fully cooked. Now, I just can’t wait to have it. Travel. While we’ve taken a couple weekend trips, I miss the longer trips we take to get away from it all and explore a new place. As the end gets closer, Paul and I have been day dreaming about a vacation post-chemo. Vegetarian meals. Throughout this all I have to get in 100g of protein daily, and that’s quite hard to do eating vegetarian dishes. I can’t wait to avoid chicken for a month! Nuts. Man, I miss nuts. The colostomy does not process nuts or dried fruit. At first I thought I don’t really sit down and eat a can of nuts. But as time went by, I started to see how many dishes we put nuts in. How many salads and other dishes I had to avoid. Guh! Anyways, no point dwelling. I have to look at these things not as items I cannot have, but items I look forward to enjoying in the future. Chemo #8 was celebrated with the shirt, “Tats and Cats.” Two things I adore.

As many of you know, I always have a list of house project going, and I constantly think of painting rooms. I finally burst and had to revamp our sunroom. After days of painting wood trim, it was completed and a very pleasant, tranquil room. I’m pleased J

We also explored the world of canning. I’ve only done quick picks, so it was fun for both Paul and I to do two different recipes for pickles. Looking forward to doing more in the future!

Chemo #9 went smoothly as well. They had removed one drug from my chemo plan for a couple of sessions due to prolonged neuropathy. They reintroduced it this session with a slightly reduced dose. I fortunately did not have much neuropathy at all. I was also really lucky to have my aunt in town, so

she joined me for chemo.

After that, my sister-in-law and niece came to visit us, and we brought some Floridians to the Minnesota State Fair. London, my niece, already knew from her last visit to MN that she LOVES cheese curds. She not only got her fill, but also got a shirt that says “Word to the Curd”. It was a blast sharing with them some of the norms of Minnesota that other people find odd, like grain art, butter carvings, all you can eat cookies and milk, and eating anything that can be put on a stick. This along with camp fires, ice cream trips, and lots of laughs made for a great recovery period.

Chemo #9’s shirt was an oldie but a goodie. For those that don’t know, my maiden name is Fishback, so like most people in my family, my nickname is Fish. While my shirt is actually from a minor league baseball team, King Fish, it is very fitting for my fight. “Fear the Fish”

With less than a month to go, I have been working to re-energize myself and stay positive. Sally Forth.

Chemo #7

More behind me, than in front of me! Chemo #7 is in the books. Due to the continued neuropathy I have been having in my hands, one of the drugs was removed from therapy sessions. So at least it’s shorter! It will most likely be removed for a few sessions, then reintroduced, in order to avoid any debilitating effects.

It’s hard to follow a blog entry like the one Paul wrote. I laughed, I cried, then cried some more when reading it. He brought up a lot of things that have been difficult for us, and I’m glad he did. This is the true test of “For better or for worse, in sickness and in health.” One of the positive things to come from this whole ordeal, is I have fallen in love all over again with my husband. I truly can’t imagine life without him. From the moment I had my diagnosis, I refused to accept any negative outcome, because I simply cannot leave him. As I often say to him, he is stuck with me. I recommend to anyone who wonders whether they have found their soul mate to ask yourself if in a few years they get sick, are you willing to change your whole life to support them? Are you willing to be strong when they cannot? Are they just as beautiful with a stinky colostomy bag hanging out from their shirt as the day you first fell in love? I am so fortunate I have that person in Paul. If you have that person, cherish them.

On a lighter note, Chemo#7 was a Willie Nelson themed event. I found a shirt online that said “Feelin Willie Good” and I just couldn’t pass it up! My good friend Beth came to join me, and we rocked some bandanas and listened to Willie the whole treatment long. Willie is definitely therapeutic. If you haven’t brought out an old album, or looked him up on Spotify in a while, I suggest you do. Paul’s favorite album of his is Phases and Stages, and I quite like it as well.

I liked how it worked out with my Willie session, as this whole recovery time has also been musically inspired. A few days after chemo, Paul and I had won tickets to a micro concert for Nathaniel Rateliff and the Nightsweats. It was at the Turf Club, which is a small venue here in St Paul and I haven’t been there in years, so it was a great to be back. The band just surrounds you with sounds of all kind. It was amazing. We found out they had been filming a video there all day, and when they played the song live they were just finishing up the filming. So perhaps we’ll be in a video! This past weekend we also went to Irish Fest, braving the heat to be engulfed by a different set of sounds and just all around positive feelings. I’ll complete my musically inspired recovery with Sam Smith tomorrow night, just before chemo #8! My right hand gal Kelly and I will be rockin out to his sweet, sweet falsetto voice. Can’t wait!

Music is such an amazing thing. It can be a drinking companion, a shoulder to cry on, a loving confidant, an inspiration for more, and magical presence that just takes you away from you day. While I don’t play music as much as a used to, I’m finding more and more how much it is pivotal part of my world, and hope it always will be.

On a final note, I can’t express how wonderful it feels to have someone randomly reach out and remind me that they love me. It’s such an amazing feeling, and I wish as a society we did it more. Someone does not need to be sick, or in need of comfort to tell them you love them. Friends, family, lovers. Whoever you love, tell them openly and often. It will make you both feel good.

Looking back in order to move forward. Reflections of Chemo #6.

So Sal is taking a blog off for Chemo #6 and I, Paul, am happy to fill in. Although my thoughts are hard sometimes to peg down into a coherent stream of consciousness, I will strive to do Sally proud.  So, as most of you know, it has been a life altering 117 days that she and I have been through since March 30^th. The world that we had been creating for ourselves after 3,199 days together had taken us many places around the country and world and had helped to shape what we believed that we were doing was the path we were intended to take.  Day 3200 however would be a change of direction.  As Sal can probably attest to, sometimes we can be of a rigid mindset that focuses a lot of our attention on things that we feel are important and that the other superfluous things in life just fall to the wayside.  But day 3200 was different.  We were forced to examine every facet our life in an attempt to determine what is truly valuable and necessary to our existence moving forward.

After Sal’s diagnosis, I was filled with quite a bit of emotions.  My mind raced and my thoughts drifted from the worst case scenario to who do I need to call and when to what is needed for Sally in the moment to a hundred different other things. But one of the things that we agreed upon on the evening of March 30th before I left the hospital was that we were not initially going to “google” anything until after we knew the full extent of the diagnosis that Sal was set to receive.  This helped to ease my mind as best it could that night so we at least wouldn’t have the knowledge that google possesses until we knew exactly what type and severity of cancer that Sally had.  As I left her that night at the hospital on my way to our empty home, I will never forget the chill of the night air and the deafening silence that was brought by the small flakes of snow that fell in late March.  Usually I marvel at snow, but that night, I couldn’t feel anything related to those previous feelings of wonder. 

The next morning, I felt as though I had a terrible nightmare and rolled over to reach for Sally but my hands were met with empty sheets and I then realized that the nightmare was in fact actual and not imagined.  As I went down the stairs, I did not grasp the beginnings of how hard this process would be until I realized that my hands were shaking so severely while making coffee that could not even complete the act.  I instinctively recalled some of the skills that I have taught to others in my 10 years of mental health work and got through the moment.  But these instances of fear and paralysis that gripped every part of my body and mind I knew were far from over.  As the days moved forward and Sally came home from the hospital and was greeted by packages from friends abroad and guests that filled our home with love and warmth, I began to believe that things were going to get better.  And, I knew if anyone was going to fight this diagnosis and succeed, it would be Sally. 

Eventually there came a point that Sally was able to return to work as we continued to entertain guests that would come for various amounts of time ranging from hours to days to weeks.  Our home became something that it had not been for the entire time in which we owned it.  The house became alive and vibrant and full of an outpouring of love and affection.  I will be completely transparent here and note that although we did have a loving and inviting home in the time previous in which we had been together, we were facing an almost critical overload of love and support of guests and friends in the house.  It was and is nice to have others around from time to time but the house was feeling like a larger chore that was taking a bulky amount of effort, energy, and focus and was seemingly taking away from the greater task at hand which was the care and well-being of Sally. I do recognize that those that came and stayed were showing their love and care and concern for Sally and even though it was difficult for me, their pain and discomfort about the situation could not be overlooked. For me, being the primary caregiver, the added responsibilities I had taken with the immediacy of the moment and the burden and continuity of care for Sally, it was beginning to bring me down to a point where the feelings, initial trauma, and emotions I had initially experienced on March 30^th were coming to the surface yet again.  But as that “season” of our life passed and the foot traffic returned to a manageable level, things became clearer and more focused.  At this point however, around the time of Chemo #3, another set of realizations hit me without any warning. These however would be some that I still struggle with even at the time of this blog entry.

So I won’t spend too much time on this as I would like to come back to this topic at a later date.  Essentially, the way that we had constructed our lives together through those first 3199 days were built upon the premise that there were no known restrictions on food, other consumables, vacation, leisure activities, everyday activities, shopping, and our work schedules just to mention a few.  Of course there were things that had occurred that would cause a delay such as Sal having to take an additional work trip or me not being able to get the time off I desired or what to have for dinner or what to do between the time we got off of work until we went to bed or projects that we wanted to achieve for the house.  But as I began to think about things deeper and gain a broader understanding, I was met with the fact that my world, as I currently knew it, would take a good long while before it would go back to a place that was familiar.

And there is a small chance that things will never be the way they were.  And maybe that is a good thing.  The one thing however that created the some of the most conflict both internally and externally was the food that we consumed.  And to be more specific, it was the lack of white flour, white rice, and added sugar in that food.  You would think that leaving these three things behind and making adjustments for the sake of the love of your life would be easy and could be dropped like a can into a recycling bin, but this is where the dilemma thickens.  I had given little thought to the products and foods that we had consumed, no matter how nutritious they were, had at least 1 of those 3 things in them or around them.  So for a while I was able to manage without any concerns but I noticed that after a bit of time my body was not so pleased that those things were not being consumed.  It affected my mood.  It affected my affect.  It distorted my thought process.  And it wasn’t as though there were a lack of things to consider in my life at this point.  And to quote a line from a book I enjoy, “I felt as though my mask of sanity was beginning to slip”.  At that point, Sally and I talked through some of these things and we were able to have some considerations made towards that during our main meal of the day and how I would be responsible for satiating my “urges” via snacks and other food during the other times of the day.  Overall, our diet at home is and will be largely based on the essential things that Sally needs in order to be healthy and able to battle her current cancer diagnosis.  But things have gotten better, slowly but surely. This is a learning process for me as well.

So those were feelings and thoughts for now of the looking back portion of the blog.  Now is the time to look forward.  After Chemo #6, Sal continued to show signs of improvement and vitality. Her 48 initial hours after chemo, she appeared to be “good ol’ fish” again, less a little fatigue that she has been experiencing these last few weeks.  She continues to face the challenges of her previously hectic life with work commitments, house commitments, the giving of attention to our cat children that they demand and crave, being pleased with a lazy day, in addition to all the commitments that she is obligated to complete as part of her ongoing treatment.  As most of you know, when Sally gets something set in her mind that wants to achieve, there will be little if anything that gets in her ways towards success.  She is determined, focused, goal oriented, and has been the beneficiary of an immense outpouring of love, encouragement, support, gifts, prayers, well wishes, good thoughts, and positive vibes that have come her way.

But here is where I stop to say of how proud I am of Sal.  Whenever, as a caregiver, I feel week and down trodden, I merely look in the pale blue eyes of Sally and all seems well.  Sal has helped to make me a better caregiver, a better husband, a better person, a better cat father, a better man.  She has provided me the opportunity to love her more than I ever thought was possible.  She has allowed me a safe and vulnerable place to expand the depths of perception as to what our lives will be and the direction that it will move forward.  She has shown me what it is to be determined and hopeful, even in the face of daunting and arduous odds.  She has shown me how to grab fear by the throat and to subdue it to a point that it is rational and reasonable.

Moving forward, I am hopeful.  I am happy.  I look forward to the countdown of the next 6 chemo treatments.  I am excited in planning our celebration vacation after chemo #12 is done. 

Lastly, I will leave you with a series of 3 photos.  It was hard to whittle down the which photos to use to only three that have been taken in the last 117 days.  The first is a selfie taken by me as Sally was in the hospital.  A side note about this picture, Sally’s room is over my left shoulder where the building forms a corner. This picture encapsulates “the looking back” portion of this blog entry.  The second picture is one that I snapped is of us at a dinner while visiting friends in Baltimore just days after Sal’s 2^nd chemo session. The third picture was taken the evening after Sal’s 6^th chemo session. Her calm, composed and determined look, along with Pabst being ever present symbolizes my determination to “look forward” to all the great things that are to come.   

Chemo #5

Good News! Prior to my fifth chemo I had a CT scan to see what progress has been made from my four prior treatments. The results showed on average the nodules in my lungs and the lesions in my liver have decreased by 33%, and no visible signs of cancer in the colon where the tumor was removed. I was not sure what to expect at this point in the treatment cycle, but I was very pleased to have a 1/3 decrease as I’m 1/3 the way through chemo.

Chemo #5 went very smoothly. My big side effect change is that I’m more fatigued, and it lasts longer. I know I just need to listen to my body, and get rest when needed.

For this treatment, I chose my own shirt to wear. It comes from one of my favorite Avett Brothers’ song, and we used the quote on the front of our wedding bulletins. “Always remember there is nothing worth sharing, like the love that let us share our name.” It articulates the importance of family, the one you are born into, and the family you create. Throughout this whole experience, I have been fortunate to have had my family supporting me through it all. I also have had many people at my side that are part of my created family. Thank you to all of you. I love you dearly.

The week after treatment I took my first work trip since I got sick. I was wondering if I would have weird feelings going back to the warehouse, where I started to get pains and knew something was wrong. Fortunately, it went very well (minus the 98 degree heat). It was really nice to do something that was previously so routine for me. Doing things that were routine are small victories.

Sally Forth.

Chemo #4

Chemo #4 is in the books. One-third of the way through!!! For those of you who have known me long, particularly in my college days/early twenties, I really enjoy fractions. In particular, I would keep close attention to the mile markers on my drive home to Twin Lakes from Minneapolis. On countless trips, I would think, “Oh! There is mile-marker 138. I’m half-way there!” or “Exit 95, I’m done with one-third of my journey.” So we’ll call this entry Exit 95.

This chemo treatment and recovery were much easier to handle. It was simpler to prepare for, without the added stress and grief I have in the previous treatment. Also, my parents were visiting and it was good to experience this with them. I know it is not easy for my family to be far away, especially during treatment. I find it to be a painless, boring process in which it is not necessary for others to come to. However, I have to remind myself that experiencing it with loved ones is important. It connects us, and gives them a greater understanding of my treatment. So I welcome the companionship. My parents and I used the chemo time to continue going through family photos and organizing them. We had some great laughs and sentimental moments in the process.

Per usual, I had a new chemo shirt. This time it was given to me by my husband. It was the first chemo he did not attend, so I really appreciated him giving me a token of him. It’s actually the shirt he bought for himself for my chemo- Black Sabbath’s Born Again. That statement can mean different things for different people. I suppose for me, life as I knew it ended on March 30, the day of my diagnosis. This is a new life, a new reality. So in a way, I’m born again.

My side effects actually lessened in strength, but prolonged. This is more preferred than shortened, more intense effects. I had little taste distortion, which is extremely helpful with maintaining my hydration. Previously, both water and milk were intolerable for a few days. I also did not have much fatigue, which makes exercising much easier. After treatment, I went on a 15-mile bike ride and my mom was able to join me for river path part. My previous path and park I went to after chemo changed, but for the good. It was nice to sit in different spot for my breathing exercises, and have my parents close.

Since treatment, I’ve had some really great times, and one we’ll just call a good learning experience. My good friend Beth was up visiting and it was coincidentally her birthday weekend. So Friday, we had a great night out with other close friends. However, in the middle of dinner I had a really bad colostomy bag break. I had to leave the restaurant immediately to go home and clean up. It was awkward to handle, and an unfortunate reminder that despite my best efforts, things aren’t normal. I had a good cry, licked my wounds and went back out to join the group again. I learned that despite my best efforts, these things will happen and it’s okay. The important thing is to not let it keep me down.  

On Sunday, I went to the Pride parade in Minneapolis with Kelly and her friends. We biked there, which was a nice opportunity to bike part of the Cities I don’t usually go to. The parade was MASSIVE. There were tens of thousands of on-lookers and over 150 different participating groups marching. It was wonderful gathering of support and love. I’m proud to be an ally.

Tuesday marked the nine-year anniversary of Paul and my first date. Big to-do’s are not our style, but given all we have been through it was important to celebrate. Nine years is just the beginning for us, and it’s such a delight to enjoy someone’s company for both big events and simple, daily encounters. We took the opportunity to get some fantastic Greek food and see the documentary on Mr. Rogers- Won’t You Be My Neighbor. It brought back such wonderful childhood memories, and yet another overwhelming feeling love and compassion. I loved it, and highly recommend seeing it. Be prepared to cry though. Lots of crying in that theatre. But crying is not a bad thing. I’m learning that more and more. Fully experiencing what you go through everyday and letting things soak in for all the “feels” is far better than moving quickly and hoping for better things to come. The best things are around you now.

Sally Forth.

Chemo #3

Prepping for Chemo #3 was far more of a mental/emotional test, as my family was struck with some devastating news. My uncle was killed in a head-on collision days before in Southeastern Wisconsin where I’m from. I was fortunate to have my brother visiting the very next day, so we could console each other and redirect our energy and emotions to the value of our own lives and appreciating how important our health and this cancer fight is for my whole family. I then went to Wisconsin to see my larger family, sharing old memories as we went through countless photos. I had to balance the strong desire to be with my family with my need to prepare my body for chemo. I still walked every day, and my family was so good about making sure my food had optimal nutrition, and I was getting enough rest.

The day before chemo, I said my good byes, headed into Chicago to catch a flight back home, and briefly stopped at my office to see coworkers just before. I have been working remotely for over a year, and it has been my work travel that allows me to see colleagues. Since my diagnosis, I have been homebound. So while short lived, it was so wonderful to see everyone. Using the term coworkers or colleagues does not do these people justice. They are truly friends and companions. I’ve spent more time with them over the past five years than anyone besides my husband. Stopping in, sharing hugs and laughs, then heading to the airport on the train was a wonderful ending to my trip. It reconnected me, and reminded me I’m still kickin, I’m still ME despite the cancer.

I had to reschedule my bloodwork from Tuesday to first thing Wednesday morning before chemo due to my travels. I was very nervous going in. I knew if my counts were low I would blame myself for traveling. But luckily for me, everything was great. My oncologist told me my counts looked like I had never had chemo before, and whatever I’m doing- keep doing it. Such a weight was lifted from my shoulders. I was actually EXCITED to be plugged up to IV bags for 5 hours of chemo!

#3 was much like 1 and 2. The small nuances, like when my body gets warmer during the 2-hour connected to Folfox IV, are now expected. Just as I know my fingers will already start tingling before I get out of the car at home due to the neuropathy. They are subtle side effects, and I strangely welcome them. They are reminders in the instant of the power of these drugs. I take these moments to visualize the drugs’ path through my body, destroying my cancer. I take these moments to realize how healthy I feel, despite these extreme drugs, and how strong that makes me.

The shirt I wore this chemo was compliments of my dear friend Kelly and it’s from a really great company, https://www.stillkickin.co/. Started by the widow of a man taken by brain cancer, Still Kickin’s mission is to sell products and donate proceeds to those in need in order to create a safety net for people who find themselves going through truly awful life events. I left chemo with my Still Kickin shirt, and went on my walk of the neighborhood.

The next day, I went on a bike ride to Minnehaha Falls with my cousin Moe. She came to visit for my chemo and recovery, and we had a great 14 mile ride. My recover days all went smoothly. Some of my side effects are lasting longer than the first couple of treatments. Even a week later, I still was experiencing neuropathy, a few foods having distorted tastes, and subtle sores on my mouth. It’s a good reminder that I have been fortunate with how quickly I’ve been recovering, and that most likely these side effects with compound with more and more treatments.

This wasn’t the easiest post to write. I put it off for days. While I started this blog to be open and sharing, the emotions and grieving that have been the past two weeks are not something I cared to present on here. On the flip side, presenting a positive, enthusiastic front about how smoothly my treatment and recovery have gone gave me some guilt. I suppose it is what it is. Just remember how important your loved ones are. Be there for them when you can, and tell them you love them. No one hears that too much.

Sally Forth.

Chemo #2

The second treatment reminded me how fortunate I am. Every time I go into that place, I see people who are really struggling physically with their illness. I see people’s caretakers that are struggling as well. The Center has me fill out a questionnaire each time before starting. The questions more or less are, “As of today, how do you rate your overall health? As of this week, how do you rate your overall health? Does your health affect your family interaction? Does your health impact your social dynamic? Does your health give you financial anxiety?” And the questions go on and on. I feel I answer them the same every time, and that is in a very positive way. I feel 90% healthy. I feel very supported in my family dynamic. I am not financially stressed about money. Unfortunately all of these things are not a given for the other patients that walk through that Oncology Center, yet 95% of them are very positive and are taking their treatment one day as it comes. This past treatment, I overheard an older Asian couple, definitely old enough to be my grandparents’ age. I could not tell who the patient was and who was the caretaker, they were both spry and upbeat. They were just laughing, and cracking jokes with the nurses. They were not going to let chemo day ruin their mood. They are resilient, and such great role models without even knowing it.

My treatment again went smoothly. Paul and I seem to be getting into our routine before going into the Oncology Center; we now know what to pack for “sally activities,” and how much food to bring. Everything went well with Porticia, and we were able to finish chemo at 2pm, which was a full two hours ahead of the first one. This was very promising as to what the routine schedule would be moving forward. As with the first, I felt good when finishing and was ready to stretch my legs, so I went on my walk to the Summit Overlook. It was well over 80 degrees so I took solace in the shade that day, still catching a cool breeze on my neck and a reminder of the beauty around us. My breathing exercising were not as focused; I could not quite get into the zone. But I made sure before leaving that I told myself over and over how strong I am and how my body is healing. And I will keep fighting.

My steroid seemed to wear off earlier from this treatment, as I had no issue falling asleep that Wednesday night. Come Thursday and Friday I made sure to get in my walks early in the morning when my energy was high, and the heat was low. I took my naps as needed, and the only new side effect is the taste of water. It had a metallic taste, so lots of lemon were required to get through the first couple of days in order to hit my hydration levels. A couple of other foods had subtle taste variations as well, but nothing that would prohibit me from eating them. In our Cancer Fighting Kitchen cookbook, it warns you of these taste variations and gives you four ways to combat it:

• ·         Fat: Adding Olive Oil or Coconut Oil to cooking
• ·         Acid: Adding Citrus, particularly lemon to items you drink
• ·         Salt: Adding Himalayan Sea Salt to food
• ·         Sweet: Adding Maple Syrup in small doses to your food or drink

I want to point out the “pump” that I have for two days after chemo and immunotherapy are done. While I refer to treatment as my “chemo day”, I actually receive meds for three days. We have affectionately termed this small, softball size pump the “buzz ball”, but I get no buzz from this contraption. It hangs out on my waist in a small fanny pack for 46 hours post treatment, releasing an additional 5ml/hour of medicine into my port. Luckily, as the medication goes into my system, the ball goes down and has very little weight in the end. I guess previously, the pumps were quite cumbersome. This is just another example of the advancement of science and, while subtle, it making patients’ experiences easier.

During this week of chemo recovery, we were experiencing an extreme heat wave in the Twin Cities, with a string of days all above 90 in May. What’s the best course of action? Get out of town! With the blessing of my oncologist that it was okay to fly, Paul and I left Friday evening for Baltimore to see friends and have a nice weekend away. Paul was very nervous leading into the trip, and rightfully so. He didn’t want anything to impede on my recovery, and he feared having me away from my routine comforts would do that. We took extra precaution with over-packing. I swear we looked like new parents who were taking their child out for the first time and didn’t know what could go wrong. My “just-in-case” supplies probably outnumbered our regular luggage, but we were ready! We also really thought about germs when traveling. I was that lady on a plane wearing a mask that no one wanted to sit next to. “No problem! We like having the middle seat open! Don’t mind me while I sani-wipe everything in my surrounding area!” The trip went really smoothly and it was actually quite a nice to break from routine. I learned how to adjust to living outside of my house, particularly with eating and taking care of my colostomy. It didn’t take much effort to find meal options that I could eat. I hit my protein, hydration, and fruit/veggie numbers and the food was amazing. I’ve never been so excited about the cooked rolls section of the sushi menu, ha ha.

Returning to St Paul will be like many weekends away in the past, where you don’t want to work in the morning and we have no clue what we are going to cook for dinner, with the limited food left prior to our trip. I welcome the cats’ excitement to our return and the quasi-deflated feeling as I return to my routine. I welcome this feeling, as I’m so fortunate to get away, to spend time with amazing friends who’ve been supporting me for years and this is no different. I’m fortunate for the joy and love (and sarcasm) that was shared with everyone this weekend. What a great recovery period. Bring on #3.

Sally Forth.