There has been a delay in my treatment and it's being held up by...paperwork from my insurance company! As a nurse for 31 years, I have grown increasingly frustrated with healthcare, and this is only one facet of my angst.
An aggressive form of cancer is alive in my body with an ability to become life-threatening at any moment, and paperwork is holding up life-saving treatment.
I wonder who will be held responsible if I begin to deteriorate because my cancer has decided to go rogue? My CT and PET scans almost three weeks ago showed a growth in cancerous nodes, but thankfully they remain small. In the event that they proliferate exponentially while I wait, though, who accepts the blame?
My new oncologist has promised me that she will not allow this cancer to grow out of control and I believe her. But when she suggested bridge chemotherapy while we wait for paperwork, I balked. I do not like the idea of putting more-than-necessary poison into my body just because somebody has failed to do their job in time.
Oh, don't get me started...
I did receive a call from the financial office this morning, however, so I am choosing not to go down that bunny trail of "What if's..." for now. My hope is that the signatures needed will be secured this week, and my treatment plan will resume. It puts me at least 3 weeks behind, but I have a feeling that some of this will be fast-tracked to gain some time.
In the meantime, I spent a beautiful Christmas with my small family yesterday since they have other plans for Christmas day, and it was a superb way to spend a Sunday! And now that my Christmas is over, I can concentrate on what lies ahead.
I'm still not at all ready for this new treatment, nor do I want to do it, but I understand the need for it. So just like with chemotherapy, I'm moving ahead. Actually, this is different from chemo since I really was feeling "sick" when chemo began. I was on an inhaler to ease my breathing since the largest tumor (4 inches!) was pushing against my trachea, and I had the proverbial lymphoma cough and throat tickle. I do not have any breathing difficulties now, nor am I needing an inhaler, but I do have a slight tickle and cough. It seems to go hand-in-hand with lymphoma. I remember my father had it for months before his diagnosis, and it's one of my first symptoms, too.
Other than that, I feel great. I've had my normal stamina and energy back (if you know me, it's usually in high gear) since a month post-immunotherapy in October. Essentially, I have been resting and waiting for this next treatment for two months and perhaps that's a good thing. My body has been fully restored so it can tolerate (and whiz through) CAR-T.
At least that is my hope and prayer.
One of my grown son's approached me over the weekend and asked, "I don't mean to sound morbid, but do you have a Power of Attorney (POA) appointed?"
I laughed because I have been diligently working on my Will since my cancer recurrence, and I am proud that all of the essential paperwork has been completed. I hate the thought that my kids would have to muddle through my passing with paperwork and red tape, so I have a list of instructions of what to do in the aftermath.
When I updated my Will two years ago, I was feeling the beginning symptoms that would lead to my initial cancer diagnosis two weeks later (no joke!), so reviewing the documents early on made me queasy. I was paralyzed by the thought of leaving my kids behind and it felt like I was jinxing myself whenever I added to the pack of papers that spelled out my wishes.
Now, the conversation around my death has become a bit more normalized. My oldest is my Executor and his Uncle has medical and financial power, only because I do not want any of my kids to have to make difficult decisions about their mother's medical care. They are each aware of their roles and seem comfortable.
I am content knowing that everything will be in place for this treatment, but I am also convinced that its contents won't be needed for several more years, possibly decades. I do not shy away from talking about it or adding information to my Will packet anymore. But I am relieved that all is set, just in case.
So I kiddingly told my son, "You guys will be rich when I die," to which he instantly replied, "We might be financially set, but we will not be rich."
I had to choke back tears hearing this affirmation of love for his mother.
It was then when I realized that my kids, too, are feeling the heaviness around this treatment. They, too, have had to picture their lives without me, but still hang onto the hope that our lives will continue as before with me still alive and well.
Oy, I am sobbing as I write this. It's all so...heavy.
But necessary, too.
They have undoubtedly grown and changed as they've had to process this relapse. We have become closer as a family as the unspoken fear and hope hang in the air between us.
I had asked one of my son's this summer how he was dealing with my cancer and he matter-of-factly said, "I don't think about it because if I did, my life would fall apart."
I felt my heart break.
You see, while I am grief-stricken that I may not be around to watch my children grow into their lives with marriages and more grand-babies and exciting life events, I am not afraid of dying.
As a 26-year-old, I had emergency surgery when I was pregnant for the second time. The first pregnancy ended in a miscarriage and this pregnancy was being jeopardized by an ovarian rupture that was slowly leaking blood into my abdominal cavity. But as I was wheeled into the surgical suite, I had an epiphany: If I die, I won't even know it. I'd come to terms with dying in a split-second while lying in pain on that gurney, and I still felt okay.
I realize now what I knew then: that death is only painful for those we leave behind.
I grieve today for the life I will surely miss with my people, but my grief is limited to now, in the anticipation of leaving. And that type of grief is short-lived and manageable. It is grief only in my thoughts because reality shows that I'm still alive, feeling great.
I grieve the most for the burden of leaving three kids and two grandkids heart-broken, and possibly changed for the rest of their lives. I cannot bear to do that to them.
But because they are my lifeline to what is real and true, I will continue to believe that this treatment will bring me back home--to them and to my full and vibrant life and self.
During this Christmas week of Jesus' birthday, I am reminded that on the Friday when Jesus was crucified, no one knew that Sunday, his resurrection, was a miracle waiting to happen.
So as I wallow in Friday-mode, unsure and scared about my future, I am comforted by the thought that Sunday, my miracle, has yet to happen.
My hope is to be "resurrected" from this cancer in the new year, ready to celebrate many more Christmases with my very favorite people.
Merry Christmas, everyone!
An aggressive form of cancer is alive in my body with an ability to become life-threatening at any moment, and paperwork is holding up life-saving treatment.
I wonder who will be held responsible if I begin to deteriorate because my cancer has decided to go rogue? My CT and PET scans almost three weeks ago showed a growth in cancerous nodes, but thankfully they remain small. In the event that they proliferate exponentially while I wait, though, who accepts the blame?
My new oncologist has promised me that she will not allow this cancer to grow out of control and I believe her. But when she suggested bridge chemotherapy while we wait for paperwork, I balked. I do not like the idea of putting more-than-necessary poison into my body just because somebody has failed to do their job in time.
Oh, don't get me started...
I did receive a call from the financial office this morning, however, so I am choosing not to go down that bunny trail of "What if's..." for now. My hope is that the signatures needed will be secured this week, and my treatment plan will resume. It puts me at least 3 weeks behind, but I have a feeling that some of this will be fast-tracked to gain some time.
In the meantime, I spent a beautiful Christmas with my small family yesterday since they have other plans for Christmas day, and it was a superb way to spend a Sunday! And now that my Christmas is over, I can concentrate on what lies ahead.
I'm still not at all ready for this new treatment, nor do I want to do it, but I understand the need for it. So just like with chemotherapy, I'm moving ahead. Actually, this is different from chemo since I really was feeling "sick" when chemo began. I was on an inhaler to ease my breathing since the largest tumor (4 inches!) was pushing against my trachea, and I had the proverbial lymphoma cough and throat tickle. I do not have any breathing difficulties now, nor am I needing an inhaler, but I do have a slight tickle and cough. It seems to go hand-in-hand with lymphoma. I remember my father had it for months before his diagnosis, and it's one of my first symptoms, too.
Other than that, I feel great. I've had my normal stamina and energy back (if you know me, it's usually in high gear) since a month post-immunotherapy in October. Essentially, I have been resting and waiting for this next treatment for two months and perhaps that's a good thing. My body has been fully restored so it can tolerate (and whiz through) CAR-T.
At least that is my hope and prayer.
One of my grown son's approached me over the weekend and asked, "I don't mean to sound morbid, but do you have a Power of Attorney (POA) appointed?"
I laughed because I have been diligently working on my Will since my cancer recurrence, and I am proud that all of the essential paperwork has been completed. I hate the thought that my kids would have to muddle through my passing with paperwork and red tape, so I have a list of instructions of what to do in the aftermath.
When I updated my Will two years ago, I was feeling the beginning symptoms that would lead to my initial cancer diagnosis two weeks later (no joke!), so reviewing the documents early on made me queasy. I was paralyzed by the thought of leaving my kids behind and it felt like I was jinxing myself whenever I added to the pack of papers that spelled out my wishes.
Now, the conversation around my death has become a bit more normalized. My oldest is my Executor and his Uncle has medical and financial power, only because I do not want any of my kids to have to make difficult decisions about their mother's medical care. They are each aware of their roles and seem comfortable.
I am content knowing that everything will be in place for this treatment, but I am also convinced that its contents won't be needed for several more years, possibly decades. I do not shy away from talking about it or adding information to my Will packet anymore. But I am relieved that all is set, just in case.
So I kiddingly told my son, "You guys will be rich when I die," to which he instantly replied, "We might be financially set, but we will not be rich."
I had to choke back tears hearing this affirmation of love for his mother.
It was then when I realized that my kids, too, are feeling the heaviness around this treatment. They, too, have had to picture their lives without me, but still hang onto the hope that our lives will continue as before with me still alive and well.
Oy, I am sobbing as I write this. It's all so...heavy.
But necessary, too.
They have undoubtedly grown and changed as they've had to process this relapse. We have become closer as a family as the unspoken fear and hope hang in the air between us.
I had asked one of my son's this summer how he was dealing with my cancer and he matter-of-factly said, "I don't think about it because if I did, my life would fall apart."
I felt my heart break.
You see, while I am grief-stricken that I may not be around to watch my children grow into their lives with marriages and more grand-babies and exciting life events, I am not afraid of dying.
As a 26-year-old, I had emergency surgery when I was pregnant for the second time. The first pregnancy ended in a miscarriage and this pregnancy was being jeopardized by an ovarian rupture that was slowly leaking blood into my abdominal cavity. But as I was wheeled into the surgical suite, I had an epiphany: If I die, I won't even know it. I'd come to terms with dying in a split-second while lying in pain on that gurney, and I still felt okay.
I realize now what I knew then: that death is only painful for those we leave behind.
I grieve today for the life I will surely miss with my people, but my grief is limited to now, in the anticipation of leaving. And that type of grief is short-lived and manageable. It is grief only in my thoughts because reality shows that I'm still alive, feeling great.
I grieve the most for the burden of leaving three kids and two grandkids heart-broken, and possibly changed for the rest of their lives. I cannot bear to do that to them.
But because they are my lifeline to what is real and true, I will continue to believe that this treatment will bring me back home--to them and to my full and vibrant life and self.
During this Christmas week of Jesus' birthday, I am reminded that on the Friday when Jesus was crucified, no one knew that Sunday, his resurrection, was a miracle waiting to happen.
So as I wallow in Friday-mode, unsure and scared about my future, I am comforted by the thought that Sunday, my miracle, has yet to happen.
My hope is to be "resurrected" from this cancer in the new year, ready to celebrate many more Christmases with my very favorite people.
Merry Christmas, everyone!
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