May 29, 2020

I just called the doctor’s office and was told that the MRI results were not in yet. Then I emailed my doctor and asked him to follow-up and get the results today if possible. I told him that I was in wrenching pain again last night and threw up for the second consecutive night. He responded by email and said he would contact me as soon as he received the MRI report.

Why not call and give me the results of the CT chest now? That one is completed. Too much trouble?! How about the pain and the throwing up? No big deal?! Why isn’t he calling the imaging center and getting my images and the report?!

Remember when I called the scheduler yesterday to move up the date on my sigmoidoscopy by a full week and she received special permission to do so? I was sick as a dog and on the phone for 30 minutes to accomplish that task. I really feel like I have to be my own advocate here and I don’t think that’s right. I think my care providers should be watching my appointments and getting me in for the procedures as quickly as possible. What if I couldn’t have made that call or sent that email? What if I were the type of person who was not comfortable asserting herself? I have heard of “patient advocates” but isn’t that the doctor’s job? To advocate on behalf of his/her patients?

Now I have to do some work and earn some money. COVID happened and now this. Very bad timing …

The hospital uploaded my CT scan (pelvis/abdomen) from last week. I just read it. My primary care physician gave me the big picture but not the details. It’s my body and I want the details. I looked up some of the terms. (This isn’t my job by the way – I shouldn’t have to look up terms – I’m the patient). The report says the mass has invaded or is “continguous” with several nearby organs. My left kidney, uterus, abdominal lining and small intestine all appear to be impacted. They can’t even see some of the colon because of the mass. That explains the excruciating pain. I wasn’t told any of it.

I thought that maybe they could just cut out the tumor in one fell swoop. Will they have to remove the other organs too? How debilitating will the surgery be? How often will I need chemo? What is the chance of survival? I need answers. I don’t understand this system. I should be able to talk to an oncologist right now.

More than my health is being impacted by this disease – there are financial consequences. I’d rather be philosophical or lyrical right now but there are practical realities to be handled and 1) I’m operating blind because I do not have a health assessment from an oncologist and 2) I can’t count on my physical stamina day to day.

OK – sorry for the rant – back to work now …

About one minute has passed and I am back to RANT because my doctor’s office just called and had no idea that I had my CT chest scan yesterday let alone the MRIs. I brought the woman up to date on everything and she said the physician’s assistant had the authority to request MRI report but the office closes in three hours so it may not happen. Why didn’t my doctor tell the PA to take care of this – I sent the email to him early this morning. This is not right. Tomorrow is Saturday.

You must think I’m going to some fourth rate institution in the middle of nowhere. I’m going to a top hospital in a major metropolitan area.

I just got a call from my doctor. I appreciate professionals who are serious and direct. He started off the conversation in a relaxed conversational manner “Hi, How are you?” – not “how are you feeling” or something like that – it was so out of place given the enormity of what is happening to me. I did not appreciate his relaxed tone during the entire phone conversation. It wasn’t even warm or compassionate. I felt like a check off item on his to-do list. He does not belong in this field.

He said that the MRI confirmed the results of the CT scan. I told him that I had read the last week’s CT scan report and asked him about the organs the tumor was impacting. He said that it was a highly invasive, large tumor. I told him that I had a question that should probably be asked of the surgical oncologist but I wanted to know whether the tumor could be surgically removed and whether they would have to remove all the other organs too. He said it was a good question but he did not know.

He said the MRI also confirmed the 2 lesions on my liver that he said he had told me about last week. He never told me about liver lesions. I learned it when I read the report today.

Then he said that the chest CT showed scattered nodules in my chest.

I asked him why I might be feeling nauseous and he said that the tumor might be compressing gut organs and that he would prescribe anti-nausea medication for me.

Then I asked him about the anemia and whether I should be taking iron supplements. He said that he prescribed them for me when we talked last week and had sent the prescription to a pharmacy in the city. !!!???!!! I asked how I would have ever known he had prescribed me anything. (If I hadn’t asked about the anemia today I still wouldn’t know). He said he thought he told me last week but then said he might have just discussed the fact that I have anemia and did not tell me he was prescribing medication. ARE YOU KIDDING ME!!! He told me I had anemia and never once mentioned anything about a prescription which – by the way – he sent it to a pharmacy over an hour from my house. Today, he said he could send the prescription anywhere and now he’s sending it right down the street about a mile from my home.

He said I had to watch for a stoppage in bowel movements and that they would expedite my getting an appointment with the cancer center after I have the sigmoidoscopy on Thursday. (Remember I can’t get into the center until they do the biopsy even though they know and have told me it’s cancer – this is all crazy. Absolutely crazy.) I guess I’m emergency status now.

Clearly I am going to die. I really had hope. I did. My mother is absolutely devastated. She is also scared that the bowel will suddenly block and I will need emergency surgery. I have to find a loving home for my cat right away. This is too much.

My mother called the pharmacy down the street to see if the prescription was ready AND THEY DON’T HAVE THE PILLS!!! What is happening to this country? They’re calling a pharmacy a little farther away to see if they do.

Just got a call back. The nearest pharmacy with the pills is OVER THE STATE LINE!Can’t get the medicine until Monday.

This is all just too much. I’m overwhelmed. And I haven’t done my work. Too much.

Love, Molly2923

One thought on “May 29, 2020

  1. You have to be your own advocate because no one else is going to be. That’s the way it works. Being your own advocate means you can more easily communicate with your doctors because you can do your own research. It means you are in a better position to have a true conversation with your doctor.

    Like

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