Day +647: I would not give you false hope…

9/7/12: Not much to report but I didn’t want to leave you wondering for a week.

I had a brief appointment with my ENT this morning. He seemed upset that I was going to Johns Hopkins and didn’t have much to say. I cancelled my endoscopy appointment for next week. I think it will be best for me to get everything done through Hopkins. I’m lucky to live less than an hour away from the #1 ENT hospital and #3 cancer hospital in the United States.

I had my initial consultation with a surgeon at Johns Hopkins this afternoon. Nothing concrete yet, but I had a good first impression. I feel more hopeful after talking with her. She was not able to read my PET image disc but questioned the report because of some of the uptake values. She said the spots were very small, the largest being only 1 cm. She forwarded the images to radiology (they have more experience reading “foreign” formats) and will confer with them. She also wants to get my actual biopsy slide and, if possible, do an HPV test on it.

She did a thorough exam of my neck, head, ears, nose, and throat, including a look at my throat with the scope threaded through my nose, and said it was good that the lesion is small and on the left side rather than in the center because there is less potential for function impact from surgery.

She wants me to get an MRI with contrast this week, saying this is the best diagnostic tool for the tongue base, and then wants me to meet with the multidisciplinary team next Friday to consider my case and treatment options, which may include TORS robotic surgery, radiation and/or chemotherapy. I won’t get any staging or prognosis information until my diagnosis is confirmed but I feel comfortable so far about being treated there.


  1. Thank u so much for updating u r in my prayers

  2. A bump in the road but as in Tiny Wings you will fly through love you so much and prayers are there. Can’t wait to see you. Linda

  3. Darn it, Karen!, I am so sorry that you have to go through this battle after already doing a transplant, for cripes sake. But you are clearly a fighter — and my kind of fighter — one who fights with research, knowledge, understanding, and thoughtful decision making.

    Whatever decisions about this lay in front of you, I know you will make the right ones.

    Take care!


  4. Karen, so sorry you and Mike are going through this, but happy to hear you are being treated at Johns Hopkins and that it appears it was caught early. We’ll be thinking of you this next week.
    Big Hugs,
    Deb and Mike

  5. Don’t feel bad about going to JH!! You need to do what is best for you. I am praying and thinking of you! I hope it is an “easy fix”.

  6. Heard you had updated your site so I went looking…know that you and Mike are constantly in my thoughts and prayer. If there is anything I can do, just let me know!
    Love you,

  7. Follow you and have communicated previously on Marows forum. Have been here reading at times too. Thank you for the information you have provided me over time, helping me to understand my transplant experiences.Strangely and don’t take offense, as I mean this as a sincere compliment,I am so sorry for this news, however, I have yet to encounter an individual who could be better armed in every area to combat this and be victorious.Thinking of you all the time. Bless you and Michael.
    Donna J.

  8. I am hoping this reaches you. My husband, age 64, was recently diagnosed with MDS RAEF-1 & has a lot in common with you as he is also being treated at Johns Hopkins under Dr Gojo. He is currently holding his own & no treatments are being given at this time. He continues to work & was told to go about life as usual since in every other respect he is so healthy. He does get tired easily. He will be put on Vidaza once his condition worsens & then potentially be a candidate for BMT. All his siblings & our children have recently been tested as possible donors & we are waiting for those results. My husband has always been very active & healthy & his health is what is keeping him from needing any treatments at this time. This MDS came out of nowhere. He was having trouble with his big toe & mentioned it to his Dr. when he went for his annual exam, so blood work was done to see if it was the start of arthritis & the low blood counts were discovered. That was proceeded by many blood tests & bone marrow aspiration & biopsy. So, here we are.

    I would love to be able to talk with you about your experiences at Hopkins & with this disease. My son lives in Bel Air & my daughter in North East, so we are familiar with Forest Hill. Perhaps we could even meet in person sometime, since we are visiting them often to attend grandkids’ activities. Would you be willing to talk with us by phone sometime & answer a lot of questions we have about this journey we are now on?

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