Oncology Day... Final Day Of Hope.
Mood:
sad
Now Playing: Day 2551-Next GP Chapter... Turning Lemons Into Lemonade :)
What a beautiful morning here in our little, lazy, river town!
For what ended up becoming, a very stressful day. It sure was an absolutely picture perfect morning! When your sleep remains anything, but normal, there is a positive side to being awake during the early morning hours.
Another BEAUTIFUL sunrise!
Today was the ultimate day of truth for this gal. Time to figure out if all the risks in putting my body through pure oncology treatment hell was in the end, worth it. Time to figure out my fate. Time to also figure out why in the world my body is still battling the same infections that continue literally kicking my booty!
Eric is always on the edge, at least a few days before my oncology appointments. I might have gotten a lot of sleep over the past 24 hours, but poor Eric, he was struggling this morning. In between battling medical odds that remain stacked against us and a sinking home. Eric is stressed out and maxed out. Once again, we had absolutely no expectations for this mornings oncology appointment, at a new Cancer Center, number 4. Expect the worst, but hope for the best. Yep, that remains our life motto...
As the suns rays continued to give us a small glimmer of hope. It also appeared that the suns rays followed us all the way to the hospital. Eric received a few rays of sunshine blessings as we walked towards the hospital doors. Eric has yet to leave my side. He remains devoted to fight along side with me in the medical land of the unknown. It didn't take, but a mere 2 minutes, by the time our feet hit the Cancer Center floor, before being called back into a room. I didn't even have time to finish signing registration and insurance forms before being quickly called back by the oncologist's nurse. Talking about staying on schedule! This Cancer Center sure doesn't mess around!
Once the nurse took my vitals. The new oncologist's assistant came into the room to go over my current medication and any new reports that might be missing in my medical chart. I did have to wait a bit in the room before the new oncologist's came in to introduce themselves. Another very uncomfortable situation quickly began brewing as I could clearly hear a few voices discussing a patient outside of our room. Hmmmm.... Sounds familiar... It actually sounds very similar to my own medical case... Hmmmm.... Ummmm? Then my gut instincts started instantly kicking in as I heard the oncologists discuss my case, right outside of our room. WOW! What I heard next was not only disappointing, but extremely disturbing.
"Is this patient in a room yet?"
As I hear them go over my medical records while reviewing recent scans and labs...
"I am not quite sure why the oncologists did not contact her last week after we discussed the case with them? We can not do anything for this patient."
As the nurse and assistant began discussing my vitals and recent labs. My gut instincts were literally screaming at me, "Get out of here! RUN! They can't help you! RUN!" I should had listened. My gut instincts have yet to ever fail me or steer me wrong. Not only was I quickly finding myself in a very bad situation, but I was blazing mad at the oncologist's discussing my medical case, right outside of our room. Clearly, they must had thought I didn't hear them. If we were to remain in this room, I definitely needed to say something as soon as they walked through the door.
And I did... Just that.
Eric just looked at me in complete shock. He didn't know what to say or do. I looked at him and said, "We need to get out of here!" Not even five seconds later, the door opened and the oncology team began introducing themselves. I was already very, rightfully so, extremely angry and upset. I can't believe they would discuss my case and say the things that we both heard right outside of our room. Mind you, there are other patient rooms next to the oncologist's desk. They could easily, as well, hear everything they were saying. Very sad and completely disturbing. I could either, not say a word, or... Say something with regards to hearing everything they were discussing, very loudly, outside of our room. I chose the latter. After they introduced themselves and I shook each of their hands, "We heard what you were saying outside of the room about my case. It sounds like I might be wasting my time."
The looks on everyone's very uncomfortable faces? PRICELESS.
Clearly, if anything good was to come out of a really bad, final oncology and last Cancer Center appointment for the remainder of this gal's life. Oncology patients private, confidential medical records and individual cases, most likely will never be discussed again outside of the patients room. Please, use a room for discussing any patients medical information. Preferably, behind closed doors. I really didn't need to hear what they were discussing. There was nothing that they didn't discuss, once they introduced themselves, that I didn't already hear outside of our room. My guards? UP, like the Great Wall Of China!
That uneasy feeling once a lead oncologist pulls up a seat, right next to you, means that you are about to get some very unfortunate news. There isn't anything positive about to transpire when an oncologist pulls a seat up next to you and the rest of the team's facial expressions turn to sadness. As we were explained the shocking news. I could hear the sound of the treatment room bell ring loudly, "DING-DING!" The sound of what would hopefully be a successful treatment. A ringing sound of hope for a cure. The sound of what is hopefully, a second chance at life for a cancer patient.
"As oncologist's, we are given five steps in hopes of helping a patient. There are no further options we can provide for you. I have to be honest with you. I don't want to argue or debate with the facts, but we ran out of options. All five avenues, everyone has aggressively taken, have been exhausted. I am sorry, but there is nothing that anyone can further do for you. There is nothing remaining out of the five options that everyone didn't already try in desperate attempts to help you. I am sorry, but you must accept that now you need to let it go. Antibiotics are becoming resistant in fighting infections that keep rebounding due to a very compromised immune system. Your body is tired after going through so much, yet you are still mentally fighting. You need to now let things go."
I was not only still really disturbed that they discussed my case outside of the patients rooms, so loudly, that we could hear every single word, but now this?!? Honestly, I can't say that I wasn't expecting some bad news, but I can't say either that I was expecting to hear that I need to now let things go?.. WOW! Eric's facial expression went completely blank. I felt more for him, than I did for myself. I assume all patients, when exhausting all avenues and find themselves out of options, want to protect those who have protected them. I wasn't worried about how I was going to handle this mornings news. I was more worried about how Eric was going to handle the news.
We were given copies of scans and other notes by quite a few oncologists and other specialists. Even the high voltage radiation didn't phase the internal war within. Nothing changed, but had only gotten worse with each experimental treatment. By me, risking everything, with experimental oncology treatments over this past year, not only was risky, but I put my health in further danger. I don't regret my decisions in seeking hopes of a cure, but in the process, I further damaged my already compromised immune system. Infections are quickly becoming impossible for even the best of the best doctors to manage. The window of hope has now closed.
Being officially released by four separate teams of oncologists is the hardest pill to swallow. I feel a huge sense of defeat. I feel completely let down by my own body. Mentally, they feel that my brain will continue fighting and at the end of my journey. I will suffer greatly. I was given two options in making sure the end of my journey isn't paved by a road of overwhelming suffering. Could I bounce back? They believe by the photos I shared with them, taken of myself and Eric at Christmas, were as they expressed with a smile, "A gift." Honestly, I couldn't agree with them more. My Guardian Angels gave me a gift of two generally amazing days, celebrating my favorite magical holiday. Christ~mas.
I will be handed back over to my specialist and his team. The same specialist and surgeon who helped assistant with my last and final surgery, 7 years ago. My team of many oncologists do not feel the need for scans to continue being performed every three months, but felt if being in the know helps me, then they would leave the decision up to me. Every three months, rescan and labs. I was given my final round of strong antibiotics and a referral to a pain management specialist. We were also given information on hospice care for when the battle can no longer be fought, physically. Mentally, I still want to fight the great fight. Physically, I know that I am at the end of a very long journey. Coming to grips with a sad reality?
It will be a very hard, emotionally draining and mentally exhausting struggle.....
Posted by GastroparesisAwarenessCampaignOrg.
at 12:01 AM EST
Updated: January 1, 2017 7:23 AM EST