What a weird day.
Today was a roller coaster of emotions for me.
There were times when joy was overcome with grief. There were times when grief was interrupted by joy.
May 16, 2017.
That was the last day, last year, that my dad saw a full 24 hours at home--out and about, sitting on his deck, maybe enjoying the sunset, sitting downstairs with a shitzu on his lap--no doubt, watching John Wayne or maybe the 15,000th viewing of San Andreas, whatever it was that he was doing.
On May 17, he would walk into the hospital--the same one I walked into today for what would end up being my very last dilation ever (hopefully)--but he would never leave.
He would never go back home.
He would never again enjoy his mountains.
He would never again sleep in the place he had called home for nearly 25 years.
He would park his car, walk inside for blood work, be admitted for elevated liver levels...and that was that.
These thoughts would not escape my mind today, no matter how hard I tried.
It was emotional.
As I pulled into the hospital this morning for my own health issues, I was overcome with pain. And quite honestly, I was a wreck.
Of all the hospitals in the Denver-metro area, why did my dad and I have to share this one!?
Things changed for me as I was wheeled into the OR.
I met with my surgeon, who felt confident that if everything looked good, he could fire me as a patient. Originally, I was scheduled to have routine maintenance from my tracheal resection every six weeks for one year.
And here we were, nearly four months post-op, and he was already so impressed with my healing and progress, that he was willing to cut ties eight months early.
And that's exactly what happened.
It took my surgeon eight minutes to get in there, take a look around, and determine that my airway was perfect.
Wide open.
Zero inflammation.
Beautiful healing taking place.
All his words.
And with that, he fired me. Sent me on my way. Wished me the best. Told me to call him if anything changes.
What an amazing feeling that was.
And yet, I couldn't call my dad and share the news with him. My joy was so terribly over-shadowed by the obvious.
One year ago today, he would have been one of the first people I called.
My family and I celebrated with a little lunch, before I needed to meet with my new rheumatologist.
(Back story: two years ago, my rheumatologist told me she thought my previous years' diagnosis of Wegener's Granulomatosis was wrong, and she thought I had Rheumatoid Arthritis, instead. She never tested me, however, and then she left the practice. So I had to get set up with a whole new doctor at National Jewish, and we have been in the process of re-testing for Wegener's, as well as other things that may be going on with me, based on inflammation levels in my blood work.)
Again, more good news.
I do not, in fact, have Wegener's. Just like my old rheumatologist suspected. Just like the new one confirmed.
I do, however, have Rheumatoid Arthritis. In fact, my failure to treat RA for the past seven years (because I was so afraid of more prednisone and chemotherapy) has resulted in erosion of the bones in my feet, right at the joint where the foot bends at the toes.
The good news is, we finally have some answers--the right answers, I hope. And my pain, since starting prednisone a few weeks ago, has really subsided.
The bad news is, I am back on some pretty heavy drugs to stop disease progression, before I begin to experience actual deformity in my feet, making walking nearly impossible.
But at this point, I am ready to try anything. If all my hair falls out, and I experience abnormal fatigue, it's worth it. The pain in my feet had become so terrible, there were days I didn't think I could get out of bed.
So once again, prednisone and Rx therapy seem to be both a blessing and a curse. They will fix me up for now, but I fear the long-term consequences.
And once again, I want to purse an anti-inflammatory diet to hopefully wean myself off of these drugs--or, at least, the prednisone.
Maybe this will finally be the kick in the ass I need to actually follow through with an anti-inflammatory diet (insert eye roll, here). Ugh.
Why does life have to be so difficult, sometimes?
I am 36 years old and I feel like I am 87, at times.
But still, I am thankful this isn't Wegener's--for a host of reasons, that I won't really take the time to list.
I feel like I can handle RA. I did not feel like I did a good job of handling Wegener's.
And here we are, once again, with news I would have loved to have shared with my dad--the man who became emotional at my original diagnosis of Wegener's--who would, no doubt, be thrilled to hear that "those fucking doctors" were wrong.
Sigh.
I anticipate the next 11 days to be a host of terrible emotions for me.
I am sentimental. I believe in symbolism. I look for signs, and take joy when I find them.
So it will be difficult for me to re-live the next 11 days on my Facebook apps, and TimeHop. Where I can hear the desperation in my voice, as I advocated for my dad, trying to raise $40,000 for his Vitamin C therapy--not even realizing that he was literally slipping away from us, one day at a time.
I realize it now.
I did not realize it then.
I would say it was all for naught, except that it wasn't. I would do it again in a heartbeat. And one of the last things my dad shared with me before he died was how proud he felt of my efforts. How loved he felt by the community. How thankful he was for those who surrounded him in his final days.
I wish I had done a better job of cherishing every single fucking second.
Every single fucking second.
Not just those last ones. My dad's final words will forever be etched into my brain.
But all the seconds.
I wish I had more memories of him on my social media accounts.
I wish I had taken more photos of him (who knew!?).
I wish I had more photos with him.
I wish I had more photos with him and my kids.
And really. I just wish I had more time.
Life seems to carry on without those we love. And it's so unfair.
Good things happen, and he should be here to share them with. He should have the chance to share in my joy. In the joy of everyone who loved him.
My niece's soccer games and championships.
My mom's cross-country road trips.
My cousin's wedding.
My kid's sporting events and end-of-school shows.
My second cousin's graduation from high school.
My uncle's adventures in a new state.
So much joy in our family.
But he continues to miss out.
And I just miss him something fierce.
There were times when joy was overcome with grief. There were times when grief was interrupted by joy.
May 16, 2017.
That was the last day, last year, that my dad saw a full 24 hours at home--out and about, sitting on his deck, maybe enjoying the sunset, sitting downstairs with a shitzu on his lap--no doubt, watching John Wayne or maybe the 15,000th viewing of San Andreas, whatever it was that he was doing.
On May 17, he would walk into the hospital--the same one I walked into today for what would end up being my very last dilation ever (hopefully)--but he would never leave.
He would never go back home.
He would never again enjoy his mountains.
He would never again sleep in the place he had called home for nearly 25 years.
He would park his car, walk inside for blood work, be admitted for elevated liver levels...and that was that.
These thoughts would not escape my mind today, no matter how hard I tried.
It was emotional.
As I pulled into the hospital this morning for my own health issues, I was overcome with pain. And quite honestly, I was a wreck.
Of all the hospitals in the Denver-metro area, why did my dad and I have to share this one!?
Things changed for me as I was wheeled into the OR.
I met with my surgeon, who felt confident that if everything looked good, he could fire me as a patient. Originally, I was scheduled to have routine maintenance from my tracheal resection every six weeks for one year.
And here we were, nearly four months post-op, and he was already so impressed with my healing and progress, that he was willing to cut ties eight months early.
And that's exactly what happened.
It took my surgeon eight minutes to get in there, take a look around, and determine that my airway was perfect.
Wide open.
Zero inflammation.
Beautiful healing taking place.
All his words.
And with that, he fired me. Sent me on my way. Wished me the best. Told me to call him if anything changes.
What an amazing feeling that was.
And yet, I couldn't call my dad and share the news with him. My joy was so terribly over-shadowed by the obvious.
One year ago today, he would have been one of the first people I called.
My family and I celebrated with a little lunch, before I needed to meet with my new rheumatologist.
(Back story: two years ago, my rheumatologist told me she thought my previous years' diagnosis of Wegener's Granulomatosis was wrong, and she thought I had Rheumatoid Arthritis, instead. She never tested me, however, and then she left the practice. So I had to get set up with a whole new doctor at National Jewish, and we have been in the process of re-testing for Wegener's, as well as other things that may be going on with me, based on inflammation levels in my blood work.)
Again, more good news.
I do not, in fact, have Wegener's. Just like my old rheumatologist suspected. Just like the new one confirmed.
I do, however, have Rheumatoid Arthritis. In fact, my failure to treat RA for the past seven years (because I was so afraid of more prednisone and chemotherapy) has resulted in erosion of the bones in my feet, right at the joint where the foot bends at the toes.
The good news is, we finally have some answers--the right answers, I hope. And my pain, since starting prednisone a few weeks ago, has really subsided.
The bad news is, I am back on some pretty heavy drugs to stop disease progression, before I begin to experience actual deformity in my feet, making walking nearly impossible.
But at this point, I am ready to try anything. If all my hair falls out, and I experience abnormal fatigue, it's worth it. The pain in my feet had become so terrible, there were days I didn't think I could get out of bed.
So once again, prednisone and Rx therapy seem to be both a blessing and a curse. They will fix me up for now, but I fear the long-term consequences.
And once again, I want to purse an anti-inflammatory diet to hopefully wean myself off of these drugs--or, at least, the prednisone.
Maybe this will finally be the kick in the ass I need to actually follow through with an anti-inflammatory diet (insert eye roll, here). Ugh.
Why does life have to be so difficult, sometimes?
I am 36 years old and I feel like I am 87, at times.
But still, I am thankful this isn't Wegener's--for a host of reasons, that I won't really take the time to list.
I feel like I can handle RA. I did not feel like I did a good job of handling Wegener's.
And here we are, once again, with news I would have loved to have shared with my dad--the man who became emotional at my original diagnosis of Wegener's--who would, no doubt, be thrilled to hear that "those fucking doctors" were wrong.
Sigh.
I anticipate the next 11 days to be a host of terrible emotions for me.
I am sentimental. I believe in symbolism. I look for signs, and take joy when I find them.
So it will be difficult for me to re-live the next 11 days on my Facebook apps, and TimeHop. Where I can hear the desperation in my voice, as I advocated for my dad, trying to raise $40,000 for his Vitamin C therapy--not even realizing that he was literally slipping away from us, one day at a time.
I realize it now.
I did not realize it then.
I would say it was all for naught, except that it wasn't. I would do it again in a heartbeat. And one of the last things my dad shared with me before he died was how proud he felt of my efforts. How loved he felt by the community. How thankful he was for those who surrounded him in his final days.
I wish I had done a better job of cherishing every single fucking second.
Every single fucking second.
Not just those last ones. My dad's final words will forever be etched into my brain.
But all the seconds.
I wish I had more memories of him on my social media accounts.
I wish I had taken more photos of him (who knew!?).
I wish I had more photos with him.
I wish I had more photos with him and my kids.
And really. I just wish I had more time.
Life seems to carry on without those we love. And it's so unfair.
Good things happen, and he should be here to share them with. He should have the chance to share in my joy. In the joy of everyone who loved him.
My niece's soccer games and championships.
My mom's cross-country road trips.
My cousin's wedding.
My kid's sporting events and end-of-school shows.
My second cousin's graduation from high school.
My uncle's adventures in a new state.
So much joy in our family.
But he continues to miss out.
And I just miss him something fierce.
And on THIS day, day 2 in the hospital - he believed he would be going home. We both did. Only ONE of the doctors was frantically trying to figure out why his liver levels were so high. But the attending doc - Dr. Thurman - was only interested in getting her paycheck. She did nothing to try to help him - "After all" she said, "the cancer has spread to his liver so of course it is failing..." - even though we only discovered this a couple of weeks before, and the cancer spot was so small in the liver none of the doctors could find it on the MRI results - but the radiologist who read the reports said it was there. So it must've been. Right? Or not. What was killing him was the Keytruda they had given him just the week before. But no, Dr. Thurman would do nothing to try to help him. When I requested a liver biopsy be done to confirm that it was the cancer causing his liver to fail - she fought me on that. Finally, I won. The liver biopsy was done on day 3. But, she didn't bother to get the results from the radiologist until 4 days later - claiming they weren't in yet. BS. They were in the night they did the biopsy. And, the liver biopsy showed no signs of cancer in his liver. Yet even with that, Dr. Thurman still failed to act on his behalf. And when I requested a liver specialist to come in for an evaluation - the specialist said she had seen this many times - all he needed was some good doses of vitamin K to stop the injury the Keytruda was causing to his liver. And what does Dr. Thurman do? She orders the WRONG fricken vitamin K to be administered. At a time when "Time" was of the essence - she failed your daddy. My husband. Me. You. All of us who love him. But she still got her paycheck.
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