Rights of the sick; Dying to Live

UPDATE, 2 weeks post surgery:

I developed a fever of 102 from an infection, and felt like crap again for a few days.

I learned that I actually had REFILLS on my antibiotics and should have remained on them for 3 weeks, not just 6 measly days. (Really wish the pharmacist or the doctors had gone over that!)

Two of the four drains were removed, so I’m less of a bulky octopus than I was before.

Steri-strips came off and I can see the incisions and what will become scars across my new breasts. It’s a very shocking thing to get use to seeing. The doctors and nurses say, “Wow, you look amazing!” What else would they say? (“You look like a hideous monster! My God, what did they do to you?!”) …be thankful, I keep telling myself.

I’m pretty sure I’m driving my husband crazy. He watches over me like a hawk to make sure I don’t do something stupid, like use my arms. Joey takes care of me, Julian and the household and manages to stay up on his Mets games and catch a few hours of sleep each day.

There is a more important story to tell though… On Friday, we had an appointment scheduled with the oncologist. This was to be our second time meeting since the first meeting shortly after diagnosis, although we had spoken on the phone a few times after that. The intention was to go over the surgical pathology report and lay out a plan for the chemotherapy treatment ahead. We were going to look at all the data, run through a computer model to see what outcomes of survival and reoccurrence would look like with or without chemotherapy and compare stats for different types of chemotherapy drugs…. or so I thought. I have been feeling very nervous about this pending appointment and starting to dread this next part of my treatment.

Here is what happened. We show up on time for a noon appointment, sit in a drabby waiting room, are asked to fill out paperwork that I had previously already filled out. OK. We are taken back into an exam room. After a nurse takes my blood pressure, and tells me the doctor will be in soon, we are left to take in our surroundings. I know after my many doctor visits, my 2nd opinion at Sloan Kettering and from my research that patients undergoing chemotherapy have zero immunity and are very vulnerable to germs. (At Sloan, even the security guards wear face masks and there is hand sanitizer everywhere!) What we saw was appalling. There was a thick layer of dust on things, dirty walls with bad dry wall patches, dried blood on the floor, and stuffing sticking out of the exam table upholstery which had no paper on it. We waited for a half hour and finally some random Dr. came in and tried to begin the appointment and I had to explain that the visit was scheduled with MY oncologist, who knows my case. A total of 90 minutes later, we start to walk out of the room. Enough is enough… and here comes MY doctor, ready to see me. She apologizes for the delay, but after she thumbs through my folder and tells me she doesn’t have the pathology report, we head for the door. I had called her office one week prior and earlier that same morning to make sure that they had obtained the report. Are you kidding me!? The hallway of this place was lined with people who looked like they were dying, lying on cots for us to see as we walk out. I felt so sick to my stomach. This is a place where people come to die.

Moral of the story… Do not feel bullied or pressured to be polite and quietly suffer in a place that does not feel safe and respectful of your rights as a patient and a human. Do not settle. Ask questions. Ask for help. Bring someone with you if you are not well enough or confident enough to advocate for yourself.

Now, I am armed with a long list of approved oncologists in my network and I know I’ll find a better fit to round out this leg of my treatment. Onward!


12 thoughts on “Rights of the sick; Dying to Live”

  1. i’m sorry that your pharmacist did not go over you’re medication with you, if you have any questions on medication feel free to give me the questions ill ask my pharmacist personally, or come into CVS on mill hill and see Rebecca our head pharmacist

  2. Your continued courage and bravery help others not to be victims or succumb to that role that “professionals” are often prone to lay on us. You have truly approached this struggle like a warrior and I know that nobody or nothing will deter you.

  3. Sounds like a third world experience. Horrible! So glad you have the strength to fight the indignities and carry on. And carry on, you will do! Sending love and healing.

  4. A young woman (37 @ the time) friend of mine went through what sounds like a carbon copy of what you’re dealing with now, and that was 10-11 years ago. She had the reconstruction, and it was unbelievable how they turned out. That’s what her best friend said. She w as tuff & determinded

  5. I’m stunned and appalled that people (from the doctors to the allied health staff, including housekeeping) who take an oath to do no harm can’t do their jobs let alone what presumably is their passion. I so want you here at Mayo Clinic but I understand and accept your hurdles. I truly believe you would be IMPRESSED by our standards. THIS WOULD NEVER HAPPEN. Oh Melissa, I just want to wrap you up in love and warmth and more love and encouragement to continue standing up for what you know is right – what you did is right! What you experienced is not healthcare – it’s health negligence. I apologize for dumping my anger on you but please know it’s meant to be directed at them. YOU are amazing and smart. You will survive this. I’m looking forward to your thoughts once you’re on the other side of this next step. I hope it’s similar to childbirth – all the pain fades away and you’re left with just the good memories. i.e., a beautiful new chapter in your life!
    Love you Melissa

  6. Cont’d: very much like you, and she never gave up her positive attitude & mental visions of winning the battle. I hope this success story helps in some way.
    Love & prayers,
    Uncle Ronnie

  7. My mother who had Hodgkins was a very active patients rights advocate! And she got better, (and this was many years ago when cancer was kept a ‘secret’ and there was little support or help or advocacy for patients or families… Thank Goodness through the work of my mother and many like her, ‘patients’ and health professionals…. there has been good strides made in the Patients rights department! Yes, be seen, heard, have support right there with you… go to people and places where you feel supported and safe and well cared for!
    And, Melissa you have al, of us holding Live and Healing thoughts for you , sending Love and Good Energy to you and your family!
    If you ever want o talk to a person who grew up with a mom dealing with cancer (from the time I was 3) or hear offer experience, as a patient and an activist…do feel free to call on me! We’ve only met a couple of times… do know that I am a part of your Support Team of Love and Healing Energy! Listening, and Praying for Sending Out the Best! *~ ❤ ~*
    Sue Silverstream~~

  8. Melissa, you are absolutely right. All patients and especially cancer patients need to be pro active. What you saw and were subjected to was appalling. You will find a better (and more sterile) oncologist. If I get a chance today I will ask my friend if he knows anyone in your area that he would recommend. I doubt that he will but it’s worth a try. I am so proud of you! In my 17 years working with cancer support groups I have found that those patients that “take charge” of their care have the best survival rates. That’s not very scientific but it’s probably accurate……

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s