Saturday, December 5, 2009

Seal it up

I'm having surgery again on Friday. The surgeon is going to open me up again along the same incision as before. This time he's going to remove all of the lymph nodes in the area. I'm going to stay in the hospital for a few days, like 4 to 6.

I still haven't heard what the consensus is on my aftercare: Cushing's and Cancer. I don't know what I will be expecting to feel like after surgery. My endocrinologist said that I should get sick after the surgery and need some kind of steroid or something, but I never found out what "sick" really meant. How "sick" will I be? I don't know. My oncologist hasn't told me what therapy I will need after surgery to make sure I don't get this again - straight radiation? Radiation with chemotherapy? SBRT? Again, I don't know.

I'm afraid my body is revolting. I have a head cold that is making its way to my chest. I have diarrhea nearly everyday. I'm tired, but not too tired to do my regular stuff.

In a week from now, I will be in the hospital being poked and prodded by nurses and doctors every few hours. I hate being at the hospital. It is a lonely place, despite all the visits from nurses. My mother will be here, so that will help ease the loneliness. My husband and daughter will come when they can and that will help too.

I hate eating alone - my family eats dinner together every single night. Even if I have class into the evening, they wait for me so we can eat together. On the weekend, it is a rare occasion for us to not eat every single meal together. During the weekdays, my husband has to be at work before we are even awake, so we don't eat breakfast with him, which is sad. I leave my office a lot to go and eat lunch somewhere else on or off campus so I'm not alone. In the hospital, I'm nearly always alone eating.

I am happy that when I come home from the hospital, my house will be a cheery place. We are finishing the decorating today for the holiday. Our tree is up and watered, but still needs its lights and decorations. We have other decorations to put up too, including the exterior lights on the bushes. Of course, we still need to get rid of the pumpkins outside!! Really, it will be nice to come home to a festive place where my family is there and so is the holiday cheer.


  1. Hi, I was drawn to your blog post because I have a blog with the same name, Cushings & Cancer.

    I had my Cushing's long ago and my cancer (kidney aka renal cell carcinoma) was 3 years ago but I sure know where you're coming for.

    My surgeon contacted my endo for the amounts of steroids during surgery (they came through the IV) then post-op, they kept cutting my dose in half until I was back down to normal.

    Generally, you stress-dose after surgery if you feel like you have a flu coming on. Has your endo given you Cortef or another steroid to take for emergencies like this? Sometimes, they will give you an injectible to be faster acting.

    Best of luck with the cancer surgery AND your Cushing's.


  2. I wish you all the best with your surgery on Friday. You're lucky to have such a loving & supportive family. It's that love & support that will carry you through the rough times of recovery.

    All the best,

  3. I wanted to contact you on behalf of the Caring For Carcinoid Foundation. First and foremost, I would like to wish you the best of luck on your surgery tomorrow, and your treatment to follow. I was very happy to read about the strong support you’re able to receive from your family.

    One of our primary goals at the Caring for Carcinoid Foundation ( is raising awareness. We admire that individuals such as yourself are willing to share their difficult story and help spread the word about carcinoid and related neuroendocrine tumors; it goes a long way in increasing visibility of this terrible disease to the public. Your words also give support and strength to those affected by these diseases.

    If you get the chance, we’d love for you to visit our website. One of our most popular online support services is the Survivor Stories section of our webpage ( It is through the stories of those affected that members of the community can draw hope, support, and courage. We would love for you to add your own story.

    In addition to Survivor Stories, we also have a free electronic newsletter providing up-to-date information affecting the carcinoid community. You can look through our past issues here:

    Please don’t hesitate to contact any of our patient support staff, including Robert Roose ( ), Ben Blackwood ( or (

    We also have some exciting social networking outlets in the works so expect to hear from us in the future.