another kind of letter

Hello Lynn and Heather,

Do you have contact information for Dr. Scheri?

I am trying to relax and enjoy my holiday, but the looming prospect of surgery has me feeling like a total wreck. I am utterly terrified.

It would be helpful to me if I could correspond with him and get an idea of what he is going to recommend so I can start reading about it. As it stands I spent about 20 minutes on the YSC message board looking at pictures of post operative women, and it scared the hell out of me;I have been crying for about the last 2 hours.

If you have any information or input that would be helpful, and please tell me how to get in touch with Dr. Scheri.

Thank you.

M.J.

I am having a bad night.

I am terrified of the unknown. I am devastated that my body is going to be permanently altered because of this. I can’t just ‘get through this’ and put it behind me. I will be changed forever, in a physically visible way. I will have a constant physical reminder every time I take my shirt off. Every man I date, I will have to weigh and balance when and how to tell him, and I will forever worry that I won’t be attractive because of it.

I am actually more upset and afraid of this and radiation than I was of chemo. This is more distressing to me. Chemo was distressing, but it was working and it had a finite end date, and I feel/felt like I can weather it and do things to help my body through it, and recover after it. This feels like a one way street with a destination I don’t want to ever arrive at. It feels like I am on my way to meet my tormentor. I feel like I am just putting it off, but I can’t escape. I keep looking at my body in the mirror. I have never been self conscious or self hating about my body. I have never wished for larger breasts. I have been shy, but not self loathing. I love my body; I love it the way it is. I don’t want to hurt it. The chemo….I feel like people go on benders, and smoke, and do drugs and then they recover. If you lose an eye, or a finger that is forever. There is no getting it back, and there is no hiding it. I feel like I have taken good care of my body and given it good things, and I can go on doing better by it. I can exercise more faithfully, and eat more wholesomely and I can cleanse it and nurture it. I can bounce back from the damages of chemo; but I can’t ever hope to have normal looking breasts again. I already have scars; I will have more. If I ever have a baby I may not be able to nurse it.

I have to give myself permission to cry, and ask myself to stop. It makes me feel so awful, when I already feel bad. There is a glacier of unshed tears inside of me. I have to be choosy about when I allow some of it to melt. It does not make me feel light and cleansed. It makes me feel drained and sick.

What can I do? I feel so fucking helpless and so so so lonely all of the time.

I want to go to the YSC conference in February. It has lectures on things I am interested in hearing about. It would be good to try to meet other women like me. Normal people who were living their lives when suddenly the control was wrested away and cancer grabbed the wheel and slammed the pedal down to the floor. I really feel like I don’t know anyone who understands what this is like. I don’t know anyone. All the people I have met are older than me, and have husbands, or children, or grandchildren. I was just coasting along, working, dating, trying to make a plan for the future and all of that had to come to a dramatic screeching halt. Life has been on hiatus in a lot of ways. I am still here; I am still living. But everything has cancer stamped all over it now, like ‘Top Secret’ or ‘Fragile’ on the files and boxes. It isn’t fair. It’s okay for me to feel that. It’s okay for me to wallow. This is an awful thing. Even with the good circumstances that I am so happy and grateful for, it is still a living hell and I am trapped inside of it all day every day. I can’t remember what it was like to have hair. I look at my face and I look like an alien. I look weird and sickly. I eat and my stomach bloats up.

I want to go home, but I am already there. That is the loneliest feeling in the entire fucking world

Had to write a bitchy letter....

Hello Ms C,

My name is M.J., and I am a cancer patient at Duke. I have been receiving chemotherapy there for the past few months. I am writing to give you some feedback on one of your chemo nurses. Her name is A--, and she is probably about 40ish, caucasian with short brown hair. I do not know her last name.

Unfortunately I have had two very dreadful experiences in the chemo room with A--. The first was several treatments ago. When I got checked into the room by her, she began to tell me that she was having her 'Monday' indicating conversationally that she was having an off day. This immediately put me on edge, because this is the person who was about to pump poisonous drugs into my body, and she was telling me that she was having a bad day. Then, after the IV was in and the premeds were started, she leapt up suddenly from her chair and from whatever we had been talking about and started to fuss over my IV. I was petrified, and kept saying "What? What is it?" thinking that she had suddenly realized she had given me the wrong drugs, or something of the like. Then I saw that the medication she had hooked up was dripping onto the floor instead of into my arm.

About three weeks ago I had A-- again. My first instinct when I got paged and saw it was her was to ask for another person, but I felt bad and embarrassed to do so. On this day I was to receive a second shot for ovarian suppression. I had received this same shot 3 months prior and my doctor had ordered it be administered again. The first time I got this shot was not a big deal. It hurt a little bit but it was quick and minimally uncomfortable. When A-- gave me the shot she rammed it into my stomach very hard, and then said "Oh Shit!" when I started to bleed. She applied pressure to my stomach with her gloved hand and told my boyfriend who was with me to rummage through a nearby drawer for her for some gauze. It was confusing and harried; He kept picking the wrong thing up and she would say "no, look next to the ....". Once she stopped the bleeding she asked me if I was okay and when I asked her "What happened?" She said "Nothing. Your just so tiny" and then changed the subject to take my mind away from it. The following day I was bruised, and remained bruised for about 4 days. The subcutaneous capsule is also almost an inch away from the injection site. The first one was right on the surface of the skin, right next to the injection site. I want to stress again that I had a very low key, completely non-dramatic experience with this the first time so I know it's possible to be gentler. Once again under A--'s care I experienced moments of panic and terror. For me receiving chemo fills me with anxiety and fear anyway; I am very angry that I was subjected to this kind of treatment on top of everything else.

I would like to know that this will be addressed with A--. Specifically that she should not make conversation with her patients that includes how she is not feeling up to scratch, and the fact that she was so unnecessarily rough with the suppression shot. I did not feel either time with her that I could have confidence in the care she was giving. Instead I felt nervous and anxious in her presence.

I would like to say that all of my other experiences in the treatment room have been exemplary. I have felt completely at ease that I was in very capable and caring hands. I have felt that my physical and emotional needs were being monitored and met, on top of everyone just being incredibly nice and caring. When I came in for a Nuelasta shot on the first week of my disability, someone asked me how I was doing. I started to cry because I was emotional over having left work. One of the nurses asked me if I wanted to have lunch with her and talk. I declined, but the gesture was very kind and it is things like that which I will never forget.

Thank you very much for your time and for reading and responding to this concern.

I wish you a lovely holiday.

Best Regards,
M.J.


SAME DAY RESPONSE:

M
Thank you for sharing your concerns with me. I am truly sorry that all of your experiences were not positive. This is upsetting to me and I plan on addressing this with her. After reading your perspective and feelings I hope this will give insight on how NOT to interact with patients. Please understand I take pride in the care of patients here in the infusion center and want them to be treated and respected as if they were my family.
Again thank you and please accept my apologies.

Happy Holidays to you and your loved ones.

K.C. RN BSN OCN
Clinical Operations Director
Oncology Treatment Center & Apheresis
Duke University Hospital

Health Update XV (Getting wigged out!)

Soldiers,

This shall be brief.

Wednesday was my last chemo. *APPLAUSE* I am looking forward to feeling better, and knowing that I will continue to feel better and better, and I won't be dragged back down the steps with another treatment looming in the distance.

For the occasion of my last chemo I wore one of the three wigs I purchased this past Wednesday. It was a huge hit in the treatment room, and I had strangers walking up to me and telling me I looked cute and adorable; which is attention I will never shy away from! I plan to get on my best international spy look for the airport on Saturday. I will be carrying my Russian passport with the following credentials: Name: Meliania Occupation: Super Model (but really international spy) Fashonista Height/Weight: Fabulous Darling. If I get pulled out of line in airport security I plan to shriek in a German accent "Do you know who I am? Have you seen the latest cover of German Vouge? Get your disgusting hands off of me!" Wish me luck!

On Saturday I head North to be with my family for 3 weeks over the holidays. My sister (who will be on break from full time school, part time job, and full time motherhood) has promised that she and I are going to have a sleeping contest while I am home.

Next month I return and discuss surgery. That will happen pretty quickly after I get back. I am taking this one step at a time and try to remember to keep breathing....long and deep.

I wish you all a wonderful holiday.

I salute you.

Love Fabulous Wigs,
Meilania, German Fashion Model, jet set traveler, and Russian Spy-Vixen extraordinaire.