Once the preliminary diagnosis had been made via CT on May 8th, I was ready to get the ball rolling. But as is often typical with all things medical, that time-table took a bit longer than I was comfortable with. I thought for sure I'd be put on someone's schedule for the following day, so I was surprised when I had to wait a week to see an oncologist and a surgeon.
I still hadn't notified anyone of my diagnosis, so I was carrying on my normal routine as usual. I had to keep reminding myself that "a lot has happened already," but I was still antsy.
But after meeting my new team of doctors, I trusted them immediately. A preliminary plan was drawn up with my oncologist, and a biopsy was set up for June 5th. But it was only May 16th, and that date felt so far away. My daughter's college graduation was foremost in my mind so I was insistent that I would be able to attend. Anytime I thought of or talked about my kids, I still broke down in tears.
My surgeon was leaving that evening on a 10-day vacation so I asked to be put onto his schedule upon his immediate return. He led me to his secretary and asked what he had available a week earlier. When she reported that he had a 90-minute opening, he said, "Book it! Even if I'm late for the next surgery." I openly sobbed.
The surgery to obtain a biopsy on May 29th went without a hitch. The team of professionals were compassionate, kind, and loving, and my dear friends came through in spades. That was probably one of the easiest days recently. I tend to have a high tolerance for pain so the 4-inch gash across my neck never gave me a problem, nor did I have to take anything stronger than a Tylenol for pain relief. I also have a fast rate of healing so I returned to work a few days later, almost completely healed, and with a good (fake) story to share.
Let me remind you that I am the only RN at an Assisted Living Facility where we are one big family. The residents are my adopted parents and grand-parents, and I am considered one of their own. They sense when something is out of the ordinary, so my absence did not go unnoticed. Once I returned, a few of them asked guarded questions, but I was unable to share my story completely. In this population, it may be considered "burdening" our residents with our own personal issues, but they still found out, anyway.
(By the time word got around the facility, I was already out of the building for a week post-chemotherapy).
I was told that the biopsy results would take 7-10 days, so imagine my surprise when the preliminary results came in just three days later, confirming the diagnosis of Non-Hodgkins Lymphoma. I felt a wave of relief knowing that we were ahead of schedule. A plan-of-attack appointment was set up with my oncologist for the following Monday, just three days later. By then, we'd have a plan to begin the process of poisoning the hell out of this cancer.
Good thing, since my symptoms were amping up. I was now coughing almost all of the time and the aches in my back were worsening. Some nights were a constant up-and-down, reheating my microwaveable heating pad and doping up on Tylenol. I knew the tumors in my chest were having a field day, proliferating out of control. The "knot" on my chest grew puffier. Even friends and colleagues were noticing.
But when Monday morning came and went without a call from my oncologist, I felt impatience welling up again. When he finally got a hold of me, his voice was somber. "Katie, I'm being told I cannot treat you. Something about insurance..."
Whaaaaaat?
Long story short meant that the oncologist who was already overseeing my case couldn't continue, and I had to be switched to a new team, at a new building, in a new town--immediately.
Now, up until this point, I'd been a fairly cool chic about this devastating blow to my life. But this was too much. I felt like I was falling through the cracks of bureaucratic bullshit while the cancer grew exponentially. I called my PCP to expedite matters; at least she could begin the process of ordering a PET scan and getting my port surgery scheduled.
I was at work trying to negotiate all of this, when I finally gave in to the heaviness I'd been carrying. My colleague noticed my heaving shoulders and quietly handed me a box of tissue while she closed the blinds to our office. This fucking cancer was already taking me down.
As it turned out, my PCP was able to expedite an appointment at a new facility not much farther away from my home. She was also able to talk me off the ledge when I felt everything around me collapsing.
When I met with my new oncologist, he immediately ordered the PET scan for a few days later, and set up a treatment date for June 14th.
Overall, the delay was only 3 days.
A new plan was underway. But when my doc mentioned that all of my symptoms should disappear after the first treatment, I was both shocked and elated. He was convinced that the tumor would be reduced by 50% because the treatment, which turns out to be composed of rat antibodies, is so good at targeting and killing lymphoma cancer cells.
I think I will adopt a rat as my new mascot. I may even design a t-shirt with a rat in a cape.
And as promised, that prediction came true. Just days after my first chemotherapy, the collateral veins in my neck and across my chest grew more faint; the pain in my back subsided; my cough disappeared; the knot on my chest dissolved.
When I visited my oncologist yesterday, just a week after chemo, he reported that I probably dissolved up to 80% of the tumors, which was evident not only by my appearance, but by my 7 lb weight loss in 3 days.
The tumors had been taking up space deep within my chest's lymph system, causing a back-up into my neck and face. New veins wormed their way across my chest, creating new highways to carry blood around the tumors. My face and jaw swelled, but it had happened so slowly, I never noticed. Today, it's quite obvious.
I am now 8 days from my first chemotherapy session, feeling much better, though I am just now nearing the end of the most hellish week of my life. I still have pain, but it has lessened by about 85%, and I am taking Tylenol about 20% of the time that I'd been taking it just a few days ago.
I am grateful, happy, gobsmacked, and humbled. Not only by the awesomeness of my body's ability to assimilate poison and create something good from it, but by my ability to have endured it. I am also brought to tears daily by the outpouring of love, attention, and compassion from people in my life.
I have been buoyed by texts, visits, prayers, meals, company and some days, a tight squeeze when all I could do was cry. My heart is full, and my outlook continues to be positive.
And I am profoundly grateful that you have come along for the ride.
I still hadn't notified anyone of my diagnosis, so I was carrying on my normal routine as usual. I had to keep reminding myself that "a lot has happened already," but I was still antsy.
But after meeting my new team of doctors, I trusted them immediately. A preliminary plan was drawn up with my oncologist, and a biopsy was set up for June 5th. But it was only May 16th, and that date felt so far away. My daughter's college graduation was foremost in my mind so I was insistent that I would be able to attend. Anytime I thought of or talked about my kids, I still broke down in tears.
My surgeon was leaving that evening on a 10-day vacation so I asked to be put onto his schedule upon his immediate return. He led me to his secretary and asked what he had available a week earlier. When she reported that he had a 90-minute opening, he said, "Book it! Even if I'm late for the next surgery." I openly sobbed.
The surgery to obtain a biopsy on May 29th went without a hitch. The team of professionals were compassionate, kind, and loving, and my dear friends came through in spades. That was probably one of the easiest days recently. I tend to have a high tolerance for pain so the 4-inch gash across my neck never gave me a problem, nor did I have to take anything stronger than a Tylenol for pain relief. I also have a fast rate of healing so I returned to work a few days later, almost completely healed, and with a good (fake) story to share.
Let me remind you that I am the only RN at an Assisted Living Facility where we are one big family. The residents are my adopted parents and grand-parents, and I am considered one of their own. They sense when something is out of the ordinary, so my absence did not go unnoticed. Once I returned, a few of them asked guarded questions, but I was unable to share my story completely. In this population, it may be considered "burdening" our residents with our own personal issues, but they still found out, anyway.
(By the time word got around the facility, I was already out of the building for a week post-chemotherapy).
I was told that the biopsy results would take 7-10 days, so imagine my surprise when the preliminary results came in just three days later, confirming the diagnosis of Non-Hodgkins Lymphoma. I felt a wave of relief knowing that we were ahead of schedule. A plan-of-attack appointment was set up with my oncologist for the following Monday, just three days later. By then, we'd have a plan to begin the process of poisoning the hell out of this cancer.
Good thing, since my symptoms were amping up. I was now coughing almost all of the time and the aches in my back were worsening. Some nights were a constant up-and-down, reheating my microwaveable heating pad and doping up on Tylenol. I knew the tumors in my chest were having a field day, proliferating out of control. The "knot" on my chest grew puffier. Even friends and colleagues were noticing.
But when Monday morning came and went without a call from my oncologist, I felt impatience welling up again. When he finally got a hold of me, his voice was somber. "Katie, I'm being told I cannot treat you. Something about insurance..."
Whaaaaaat?
Long story short meant that the oncologist who was already overseeing my case couldn't continue, and I had to be switched to a new team, at a new building, in a new town--immediately.
Now, up until this point, I'd been a fairly cool chic about this devastating blow to my life. But this was too much. I felt like I was falling through the cracks of bureaucratic bullshit while the cancer grew exponentially. I called my PCP to expedite matters; at least she could begin the process of ordering a PET scan and getting my port surgery scheduled.
I was at work trying to negotiate all of this, when I finally gave in to the heaviness I'd been carrying. My colleague noticed my heaving shoulders and quietly handed me a box of tissue while she closed the blinds to our office. This fucking cancer was already taking me down.
As it turned out, my PCP was able to expedite an appointment at a new facility not much farther away from my home. She was also able to talk me off the ledge when I felt everything around me collapsing.
When I met with my new oncologist, he immediately ordered the PET scan for a few days later, and set up a treatment date for June 14th.
Overall, the delay was only 3 days.
A new plan was underway. But when my doc mentioned that all of my symptoms should disappear after the first treatment, I was both shocked and elated. He was convinced that the tumor would be reduced by 50% because the treatment, which turns out to be composed of rat antibodies, is so good at targeting and killing lymphoma cancer cells.
I think I will adopt a rat as my new mascot. I may even design a t-shirt with a rat in a cape.
And as promised, that prediction came true. Just days after my first chemotherapy, the collateral veins in my neck and across my chest grew more faint; the pain in my back subsided; my cough disappeared; the knot on my chest dissolved.
When I visited my oncologist yesterday, just a week after chemo, he reported that I probably dissolved up to 80% of the tumors, which was evident not only by my appearance, but by my 7 lb weight loss in 3 days.
The tumors had been taking up space deep within my chest's lymph system, causing a back-up into my neck and face. New veins wormed their way across my chest, creating new highways to carry blood around the tumors. My face and jaw swelled, but it had happened so slowly, I never noticed. Today, it's quite obvious.
I am now 8 days from my first chemotherapy session, feeling much better, though I am just now nearing the end of the most hellish week of my life. I still have pain, but it has lessened by about 85%, and I am taking Tylenol about 20% of the time that I'd been taking it just a few days ago.
I am grateful, happy, gobsmacked, and humbled. Not only by the awesomeness of my body's ability to assimilate poison and create something good from it, but by my ability to have endured it. I am also brought to tears daily by the outpouring of love, attention, and compassion from people in my life.
I have been buoyed by texts, visits, prayers, meals, company and some days, a tight squeeze when all I could do was cry. My heart is full, and my outlook continues to be positive.
And I am profoundly grateful that you have come along for the ride.
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