Feeling like Shattered Glass from David Arsham
Dr. Roos retires and Dr. Xxxxxx takes over. He's not worried about those nodules because who knows what they are?!
Interim period of total exhaustion, more weight loss.
December 27 2015
MRI shows apple core lesion in the sigmoid colon and "suggests"* primary colon cancer with perinodal involvement. Just an FYI, that's a constriction of the colon that looks like this:
Fill out boat-load of online medical history and medication issues that is promptly ignored later.
Super Wonderful Oncologist Dr. Xxxxx wants to talk to you about your PRIMARY LUNG CANCER.
Me: "Um, I'm sorry but what about that MRI that showed the Colon Cancer primary and perinodal involvement?"
SWO Dr.: "Whaaaa? I didn't see that? Was that from UM?"
Me: "No, that was the one you ordered that was done on December 27th?"
SWO Dr.: "WTF? (paraphrase)"
Decides to get two biopsies, lung and colon, and oh, btw, hypochondriac mama says she has clotting problems, so Dr. Wonderful Oncologist says she has to get platelet studies before biopsies.
Wait. Wait. Wait. Call. Wait. Told Off By Scheduler.
Beginning of Third Week of January
"All you need to do is go to Outpatient Registration. No appointment is necessary."
January 28, 2016
Me: Drag very fragile Mom (You) to Outpatient Registration at South Miami Hospital. They recognize she is so week they tell her to remain seated and bring all documents to her.
Transportation to Lab.
Wait. Wait. Wait. Apologetic Phlebotomist appears to ask who scheduled this appointment and then tells you that the blood for these tests can only, ONLY be drawn between 7 am and 11 am M-F.
Everyone apologizes profusely, OMG how did this happen, poor, poor sick Mom.
January 29. 2016
Return following morning at 9 am. Pre-registered due to staff's incredible sympathy for how awful patient looked day before. Sits at main desk to sign, wheeled to lab.
Phlebotomist takes you right away. Sits you in draw seat. Turns to co-worker:
"Before I stick this lovely lady, I just want to be sure about the procedure to send all those platelet studies to UM."
"I don't know. Let's call Xxxxx, our Supervisoer, who is on lunch break at 9:20 am.
Speaker Phone: "Oh, you have to schedule those in advance with University of Miami Hematology, to make sure there is someone there to receive the specimens and do the testing right away.'
Off Speaker Phone: "FUCK ME WE CANNOT ASK THIS POOR LADY TO COME BACK A THIRD TIME!"
Me.: Like REALLY.
You: groan and slump further in chair, in utter exhaustion.
"We are going to work this out. Could you sit right here with your Mom?"
Me: Looks at watch that says 9:45 am.
Door closes. FRENZY behind closed door.
10:05 AM: "Our supervisor got UM to agree to take the sample if it's there by Noon."
Interlude
Complaint to sister of friend who just happens to be VP of Miami Cancer Institute. Cue many phone calls, apologies, "Oh, things like this should never happen and will never happen again!"
Blood drawn, and you know after all this saga and all the complaining done about various parties that the tests are totally NORMAL.
Last Week of January:
GI Specialist says at pre-op appointment he will have to do sigmoidoscopy to get biopsy because lesion described by MRI is too tight for a colonoscope. Wheee! Easier prep!
February 4 2016
Sigmoidoscopy. Wait. Wait. Wait.
We Interrupt this procedure for announcement that friend of 28 years has committed suicide and left you in charge of finding home for her three cats and btw, she also had fish, which are now also yours.
Wait. Wait. Start to freak out.
GI Doc comes out to tell you that he was up and down that sigmoid colon and found no apple core lesion, no lesion period and not even bleeding or polyps and has the 97 photographs to prove it. Went all the way to the splenic juncture but NOTHING.
Aside: My. Friend. Committed. Suicide. Second friend who was in Menninger Clinic in Topeka as a teen in the 1970's who has committed suicide.
February 11 2016
Fill out boat-load of online medical history and medication issues that is promptly ignored later. Appointment with Dr. Xxxxxx, the Miracle Oncologist. "Dr. Xxxxxxxxxxx is great. He will stick needles in your chest!!!! We will figure this out!!!
Dad and Stepmom visit, Dad goes to talk to Mom. "It's a bird! It's a plane! It must be lymphoma! Most common cancer in Celiac Patients!!!! Let's tell her, because that's so awesome easy to treat!"
February 18 2016
Thoracentesis. "Ooops, didn't we tell you about all the fluid in your thoracic cavity?" Only 700 mL. No biggie." CT-guided lung biopsy.
Dr. Xxxxxxxxxx says "I really can't say it's lymphoma. We need cytology and pathology. She's probably going to need to be drained again. BTW, about that pneumothorax, she might need to be admitted overnight until it resolves.
Gluten free meal delivered for patient who hasn't eaten in 16 hours. Oopsie WHAT IS ALL THIS GLUTEN?
"What gluten?"
"The whole wheat roll and mashed potatoes with gravy?"
"OOPSIE. You meant gluten free without gluten?"
Dr. Xxxxxxxxxx: "Okay, she can go home if she goes home with you and you keep an eye on her, even if she's asleep, to make sure she doesn't have her lung totally collapse."
Me to You: YOU ARE STAYING IN MY HOUSE. I CANNOT STAY IN THE 80+ F HOARDER HOUSE WITH FLEAS OVERNIGHT WITH YOU.
You: Ugh! I can't stay in the hospital overnight, so okay.
February 22 2016
Dr. Xxxxxx, Miracle Oncologist: "It's a bird, it's a plane! It's metastatic cancer in your lungs and it probably comes from your colon! (Runaway, runaway!) We need to do exploratory endoscopy to proceed! We will call you!"
February 26 2016
Fill out boat-load of online medical history and medication issues that is promptly ignored later.
Dr. Xxxxxx: "Did they call you? We were wrong! We don't know what is! It's a bird, it's a plane, it's probably just lung cancer, unless it's not and then I don't know!"
Me: "WHAT DO YOU MEAN?"
Dr. Xxxxxx: "Well, immunohistologenetics shows that they don't know FUCK about this cancer! (accurate paraphrase) So here's my plan: 1) Chemo and radiation, except you said you don't want that; 2) Radiation, except you don't want that and we don't know where the fuck to put it! (another accurate paraphrase); 3) do nothing and just have pain management.
You: "I might want to start some pain management. This really hurts!!!! Tylenol doesn't cut it!"
Dr. Xxxxxxxx: "Here, try this pain Rx for a patch that has this opioid. BTW, we could do this blood test to see if your EGFRs are susceptible to treatment with this specific drug that might work for your cancer if what I think you have is what you have except I don't know what you have but maybe you have this rare thing because you look WONDERFULLY HEALTHY. Maybe I should have thought of this earlier."
Wait 45 minutes for blood stick and Rx script.
Take Rx script to Marco Drugs with badass clinical pharmacists who pay attention and have software that actually works.
"We cannot fill this! She's allergic to another opiate in this exact same drug class! It could make her have anaphylaxis! You need to call her doc back ASAP! It says RIGHT ON THIS PRESCRIPTION that she is allergic to Demerol! WTF! (paraphrase)"
Consult by text message and phone call with Clinical Pharmacist Daughter Who Graduated from Second Best Pharmacy Program in USA, and who is currently in Residency for Critical Care:
C: "I wouldn't give it to her. WTF is wrong with their software that it even let them generate that script!?!?!?!" Seriously? It really says she's allergic to Demerol right on the script? Like, I can't believe that. REALLY? OMG!!! WTF!!!!!!??????" (Paraphrase, but literally)
PA from Dr. Wonderful Oncologist's Office: "So since she can't take the Fentanyl patch and doesn't like oral pain meds, we thought Naproxen Sodium was a great plan."
Me: "Aleve? Really?"
PA: "Well, no, we want her taking the 250 mg pill instead of the 220 mg pill! Her insurance might cover it!"
Me: "So you want her taking an anti-inflammatory for her cancer pain?"
PA: "Yes! It should work if she takes it every 12 hours and doesn't care about her stomach, small intestine or kidneys anymore!!!! (paraphrase)"
Saturday, February 27 2016
You: "I don't know what kind of cancer I have and whether I should try to treat it or if it's a waste of time and effort and feeling sick versus feeling totally horrible from treatment. By the way, this Aleve+ they prescribed isn't working. I don't know what to do anymore. Every week they tell me something different- colon cancer, lung cancer, colon cancer, lung cancer..."
Me: "I have nothing. LIKE, NOTHING AT ALL. I don't know what to tell you, Mom. I support whatever you want to do, because the only thing I can say is that it expresses cytokeratin 7 and isn't Non-Hodgkin's Lymphoma."
You: "And this is what happens when you can pay for healthcare?"
Me: "Yep. Best healthcare in the world, Mom!"
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