A Peaceful Transition

 This one is even tougher. Joyce passed away today, 6/20/22 at 3:00 PM.

And while her illness determined that this was going to be the ultimate outcome, it is, of course difficult to say goodbye to the love of your life and best friend. The greatest gift that we were given in her passing was how peacefully she passed. The hospice staff was incredibly helpful guiding us through the process. I was pretty organized. Some of you may have noticed that about me during all of this. But hospice helped me focus on the present to be mindful of what to look for and appreciate what we had done to keep her as comfortable as possible.

Cancer cures are happening every day. Cancer research is helping people live longer. I think it is important to remember that for Joyce it has been 7 years with which she has had to cope with this disease. We thought she had beaten the odds at the 5 year mark but after a short celebration we learned that the disease had metastasized. Her original therapy, at first, had held it at bay. After learning that the cancer had spread the doctors told us that our goal was to look forward to a 6 month timeline. That was almost 2 years ago. For those of you who have followed this blog, you have seen the new alternatives that have been tried and indeed have succeeded in prolonging the time Joyce was able to be with us. So, from my perspective I would suggest that we should all remain hopeful that  science will advance the evolution of medical healing.

To all of you who have offered hope and prayers, please know that we are eternally grateful for your heartfelt concern for Joyce and for me. It was a team effort for all of us and there were small victories along the way. In the last blog I said we were at the oasis where Joyce had wanted to be at the end. We settled in and enjoyed the time together we had left. For Joyce, this is THIS journey’s end. But, with her peaceful transition she is on a new adventure that will have her body free of pain and suffering. And for that I am very thankful.

The next posting will give the information about her church service and burial.

The oasis at journey’s end

    This is a tough one. Joyce has come to the decision that she is going to start hospice since there is nothing that will help her reduce the cancer that has progressed in her body. At this time the liver and the brain are the parts being affected. The goal from the beginning was to mitigate the pain and we have been successful so far in that regard. We did not foresee the brain as part of the equation and that presents a different set of obstacles with which to deal.

    Headaches, cognitive challenges and coordination have presented themselves as formidable. We are challenging the headaches with steroids and they have helped immensely.

    The cognitive challenges and coordination are not really treatable with a prescription. Walking, while possible in the past, is not an easy task now for Joyce. Her brain will not let her process the necessary function to get her feet moving for her. What used to be automatic has to be thought out and sometimes not successful in the attempt. So moving from room to room is not an easy option at this time. The hospice staff with whom we are meeting will figure out the best place for her to be in the house moving forward.

    Communication has become a challenge for her as well. She hears and understands the first part of a conversation, but then, as she describes it, “It gets mixed up.” She is becoming limited, at times, to one or two word responses. And those have to be thought out for a while before she presents them. Other times the conversation flows pretty freely. So, as we have through all of this, we live one day at a time and are thankful for the positive days. I recognize and understand this from when my father was dealing with his Alzheimers. Joyce’s is different in that she is aware of what is going on around her but it is just difficult, at times, for her to respond in real time.

    Of course we realize this was going to be the eventual fate of her disease. It is a time of sadness but also a time of acceptance. So, here at Peaceful Pines we will provide a safe oasis where she can be as pain free as possible and cared for until her journey’s end.

  

This is not that

 Back in the day our family used to make a paper chain to count down the days until an event was going to happen. It could have been the count down to the days until Christmas or the days until the end of the school year or the days to the start of a trip. We looked at it as something to which we would look forward.

Well, this is not that. We are now no longer on a sea voyage but at the beginning  of a trek through the unknown. We have a metaphoric paper chain, but do not know how many links are on it.

Joyce had gone in for her latest PET scan and had an additional MRI included in the orders. It turns out that her latest treatments have not been able to keep her cancer at bay. The cancer has decided to set up camp and expand in the area it was and to send off some of its troops to other parts of her body as well. With that in mind Joyce has made the decision in consultation with her doctor that her path forward will be to undergo radiation treatments for her brain, where new cancer cells have occurred, and after that to start the process of entering hospice care. We don’t know how long any of this will take to play itself out and that is why our metaphoric chain will be as long as it takes to reach the end of this journey.

Joyce is comfortable and that has always been the goal throughout this process. Well, actually one of three goals. The first goal was to see if we could get the cancer to go away. The goals now are quality of life and pain management.

So, what you will find us doing on this part of Joyce’s journey is settling in, here at our Peaceful Pines oasis watching the flowers bloom, the birds flit, the ducks and swans on the lake, the deer graze and the occasional bear come to try to destroy Gary’s feeders. That is the quality of life that rests in the soul of Joyce. The pain will be medicinally managed to help her enjoy a hopefully long linked chain of good quality days.

Someone once told us that Joyce would know when it was time to make this kind of decision. Joyce feels the time is right. Now that she has made that decision she feels less burdened. And that bodes well for partially satisfying the goal of nurturing her quality of life.

Pulling Up Anchor

 Well, we have pulled up anchor and set sail again on our voyage of palliative care. We have changed ships, however, and are now on the newly outfitted  “Keytruda-GC.” Since Joyce’s cancer had progressed, her next best option ( in our opinion ) turns out to be what is called immunotherapy. Keytruda was okayed for use in July of 2021 for high risk triple negative breast cancer patients. In the blood tests after her last Trodelvy treatment her markers indicated that this new path may be helpful.

One positive note we took away from her last PET scan was that instead of a whole bunch of cancer all over the place, it seems to have settled in the area of the liver. I know, that should not sound like good news. But, if it is there, treatments that are more specific to targeting the liver are available now than had been in the past.

After her second infusion of the new treatment, Joyce had a DNA sample sent to the genetic counselors here at the Coborn Cancer Center. They are going to send it out to a lab on the west coast. Specifically, at this time, we are going to see if there is a BRCA2 mutation of some sort. If that is the case it opens up treatment options that are just being developed. This is being characterized as “targeted therapy using PARP inhibitors.” it is at the molecular level compared to the “bombard everything” level. Don’t get me wrong. The “bombard everything” level helped us to get to where we are today and for that I am grateful.

So, for now, we are on the Ketruda-GC under full sail. Yes, there will be moments when Joyce is “at the rail” dealing with the affects of this new medicine and I will be there to hold her hand and emptying the buckets. Needless to say we are very thankful for compazine and zofran to help her get through those moments. 

Beyond the Horizon

 

When we look out our window we can see the tree line across the lake. The pines stand tall blocking the view of what lies beyond. The horizon from that short perspective is the tops of the trees. When we are on the road and the highway stretches miles and miles before us, the horizon from that perspective is that point “just over the next hill.” Our journey of uncertainty has us on a metaphorical ship on a metaphorical sea. And from that perspective the horizon is, at times, absent. Regardless of the perspective, what lies beyond is both our hope and our destiny.

To start the year, Joyce had another PET Scan. The results have shown us that her current treatment has done all it can do to keep her cancer at bay. We knew going into this treatment, since it was just recently approved in the spring of 2021, that it would help for a while, but not forever. The cancer she had in her lungs is not present. The cancer she had in her upper torso is not present. That was all good news. The cancer in her liver has progressed. That was the bad news. And with that news we are forced, temporarily, to drop anchor, so to speak, on her treatments. She will be scheduled for a biopsy of her liver in the next few days. After that we have to wait for couple of weeks for the results to come back, the new treatment to be decided upon and the insurance okays to be done.

The key phrase in the last paragraph, “the new treatment to be decided upon,” is the one on which to focus. According to her doctor, there may not be a treatment that is suitable for her situation. So, while there is always hope, we still live with the reality of the moment. And in that sense the current horizon line is the tree tops across the lake.

For all that is unknown at the moment, I do want to point out that it is encouraging that Joyce is getting ready to chase me around the house for telling bad jokes. She has been working at getting stronger. At the moment she has worked her way up to walking the length of a football field and going down and up the basement stairs 3 times in succession. It just points out once again how much of a fighter she is as she works her way through all of this.

In Darkness there is Light

 It has been said that even in darkness there is light. I don’t know who said that, but I have heard that in the past.

Last night Joyce and I were thankful to witness the light provided by several of the parishioners of her church. They brought with them the spirit and good cheer of the holiday season. We don’t get to visit with many of them these days. It was so good to see their faces and hear their voices again.

Thank you all for sharing your light with us.

Tranquility Bay

 That may be the appropriate heading for this posting at this time. For the most part the infusions have gone well. There are side effects, but those are to be expected for all the stuff they are putting in Joyce’s body. Since she has been on this “every two week” schedule with the Trodelvy infusions, her body, with regard to the cancer, has responded positively. We are supposed to be scheduling a PET scan in a few weeks to see if that will bring any more positive news like we got the last time.

When a person goes through the grieving process (DABDA), it ebbs and flows. It is like taking two steps forward and one step back. Of course we are at the last  D and the last A part of the process. And, the infusions can be thought of as part of the B process, I suppose. I strongly believe that reminding myself where we are  in the process helps to ground expectations in the reality of the moment.

Soldiering on is how I would describe Joyce’s attitude. She is limited in what she can do at the moment, but she  is always making strides to improve her strength and ability to be more independent than she has been able to be in the last year. She is walking with more confidence. She is pitching in to do some of the housework, by her request. And her demeanor is more positive than it has been in the past year as well.

This moment feels, in a way, like it is the two of us walking down the beach hand in hand. We rely on each other but can feel the sand shifting with each wave that washes beneath our feet. And in that sense we adjust our stride to accommodate the change in order to move forward on this journey. 

We know that we will be sailing on rougher seas in the future. But for now it is good to breathe the fresh air of each new day as we enjoy this brief respite before we weigh anchor and leave Tranquility Bay behind.