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.
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.
After the first round of trodelvy treatments (a total of 8) Joyce had a new PET scan taken on October 6th. According to her doctor, Joyce’s condition has NOT progressed. That is a good thing. There were diminished levels of activity at the cancer sites. Which means this current treatment, for the time being, is doing its job.
What that means moving forward is that Joyce will continue with the Trodelvy infusions. It is also noteworthy, IMHO, that Joyce is becoming more active and able to do more things around the house. While there is a four day “not feeling good” timeframe after the infusion, the days after that seem to have her more willing to get up and about without severe side affects.
On a side note, some of you have asked and some of you may have wondered how I am doing through all of this. This may be kind of longish so be warned :-)
Joyce and I have discussed this every now and again and I have always come back to the answer that I am doing okay under the circumstances. I have told her on a few occasions that I feel like my life has prepared me for these moments. Here comes the long part so if that short version was enough for you, you don’t need to read further.
Some of you may know that I am an “army brat.” That in and of it self makes me a survivor, adaptable and pragmatic. Those, imho, are essential qualities to live that sort of life and to work through this portion of our present circumstances.
Some of you may know that I am/was athletic, sort of. And to that extent makes me a team player, rules oriented, dependable, tenacious and “relatively fit.” Those, imho, are essential to be competitive in working toward victory. Our victory will be the relative ease to Joyce’s journey’s end.
Some of you may know that I have a varied work background. While I won’t go into detail of the 30+ jobs I have worked, suffice it to say that to that extent they make me qualified on a variety of levels to help Joyce through all of this. Education, technology, medical, active military, transportation, and supervisory positions combine to make navigating the complexities of her journey as smooth as possible.
All of you probably or should know that I am totally dedicated to Joyce and have been for the last 51+ years. And to that end I am satisfied that we will have done everything we were supposed to, working together, for her best benefit.
And, while being satisfied, yes, I am sad (grief has many stages and we have reached the acceptance portion of that). But, I am doing okay knowing that our combined efforts are helping Joyce work through all of this in the best possible manner.
But enough about me, let’s see how the next round of infusions are going to help Joyce moving forward.
Well, today marked Joyce’s 4th infusion of Trodelvy medication. There will be two more to complete this “cycle” before we find out if it has helped or not. There have been a few setbacks ( a couple of hospital visits ), but all in all Joyce has been feeling okay. Yesterday we celebrated 7 straight days of her feeling “good” the whole day. She has been able to head outside when the weather allows ( high temps and high dew points keep her inside ).
We have seen progress as she gains strength in her legs. Since she had her implant in her right leg last year it has been pretty achey and weak. Her mobility has been kind of limited. Now, however, she is able to get around, at times without an assist of a cane or a walker. She has more strength to get up and down our steps to enter and leave the house. And she has been walking around outside more and more, at times, to Gary’s chagrin, alone with no escort. You know you let her out of your sight for five minutes and poof she’s off and galavanting.
She was even feeling well enough the other day to do the trails here at Peaceful Pines.
That gave her the opportunity to assess the upkeep needs of them and an opportunity to get the mail. The emphasis here as far as the picture is concerned is that she needed the strength she has gained in her right leg to operate the gas and the brake on the Raven ( those of you who have visited Peaceful Pines know the hill she is on needs some strength to brake on the way down ).
So, for now on our metaphorical sailing journey, we can say we are currently sailing on relatively calm seas, enjoying the peace of nature and looking forward to new rays of sunshine that greet us each morning.
Originally written 7/9/21
We are setting sail on a new Trodelvy portion of this voyage.
I thought I would let you all know that we have recently “set sail” on a new voyage. Since Joyce’s cancer has decided that her previous treatments were no longer adequate to keep it at bay, so she has decided that a new treatment “Trodelvy” is something she is willing to try at this time. We are not sure how this will affect her condition. It was recommended by her doctor as a newly available treatment.
One of the things about which we are concerned is that she is probably going to have a higher risk of a compromised immune system. With that in mind we are going to be masking up again wherever we go. And I would like those who are going to visit in the future to mask up while we are together. If you make a choice not to do so, the visit will be a “distant” type of visit like we had done in the past.
If you would like to find out more information about Trodelvy here is a link that may be useful:
https://www.trodelvy.com/patient/mTNBC/efficacy
We will see how this leg of her voyage goes as we navigate the ebbs and flows of her journey. We are always hoping for calm seas, but realize there may be a few rough currents along the way. We are trying the best we can to avoid as many of those as possible. For now it is not quite “full speed ahead,” but moving forward nonetheless.
Originally written 6/31/21
It certainly is a voyage. For those who have been following along, I suppose I could have titled this “the calms in the concentric eyes of an infinite hurricane.” Either way, the point is that while most of the voyage has been relatively calm and the destination, while known, is taking a seemingly casual pace with a swale and a storm cropping up every now and again.
Joyce’s sessions had been going well. We have to be thankful for that. The staff at the Coborn Cancer Center could not be more helpful or encouraging. Her latest PET scan (6/22/21) showed us that her cancer has progressed (not a good thing). The comparison to last time indicates that the treatment she is currently on is not being effective like it was. She is going to be on a 3 week treatment break while they get her ready for her next best option.
Along the way, the turbulence, reminds us that Joyce’s journey will never be the “quiet ride into the sunset” that we wish it would be. In the middle of this month I decided it was best to call for an ambulance to take Joyce to the ER in Little Falls and subsequently to the ICU in St.Cloud. As it turned out an issue 40 years in the making decided to pay a visit to her system. An ulcer that had been treated and thought to be taken care of turned out not to be an innocent bystander in the process. Because of the blood clot that she had after the rod was implanted in her leg she had been prescribed Coumadin to keep her blood clotting under control. That, combined with the Excedrine that Joyce takes (had taken) to help ease her migraines, caused her stomach lining to inflame and bleed.
The bottom line is that we weathered that storm, found the “calm sea” of Peaceful Pines, and continue on our journey.
A strange heading, I know, but it is how far we have traveled so far for appointments just since January 1st of this year. Living one day at a time and taking in the goodness of the moment sometimes causes one to lose an overall perspective of what the reality of a given situation is. So far we have logged in over 4,500 miles for medical reasons. In the moment it does not seem like a big deal but the other day it dawned on me that a cross country trip, only driving 2 hours at a time would leave a whole heck of a lot of time to experience each stopover in more detail.
Be that as it may, Joyce is doing really well under the circumstances. We have both been vaccinated. We have been able to open up Peaceful Pines to more visitors. We have been able to eat at restaurants (of course with hardly any other diners) and we have been able to hug our family without as much concern for Joyce’s weakened immune system. Her important numbers are improving (white blood count, red blood count, hemoglobin, BCA) and her pain levels have subsided as well. She is out and about in the garden (she tells me what to plant and where to plant it). And we share the watering tasks as well (she tells me what to water and when to stop watering).
We are looking forward to seeing what the next month holds in store for us, one day at a time, one 2 hour trip at a time.
