Thank you, Dr. Ewing

Dr. James R. Ewing (1866-1943)

Dr. James R. Ewing (1866-1943)

Hi there! Remember me? I’ve been going through a very rough time, physically and emotionally, and just couldn’t bring myself to the computer to write. I didn’t want to look that closely at what was going on. But now I’ve come to what feels like a good place to stop for a minute and touch base with everyone.

Some of you know that for the last couple of months I’ve been dealing with what I call “the alien baby”: a rapidly growing mass under my right arm. I’ve been examined by different doctors (surgeon, orthopedist, family practice) and tried different treatments. I was finally sent for an ultrasound and the alert technician went a little farther than he strictly had to and insisted that a radiologist come and see me right then (see Turbulence Ahead), setting in motion a focused diagnostic effort. Two biopsies (along with a PET/CT, a bone scan and other tests) and several visits with my new oncologist later, and I have an official diagnosis: Ewing sarcoma.

Ewing sarcoma was first described in 1921 by Dr. James R. Ewing, the American pathologist who wrote the first oncology text book and whom Time called “Cancer Man”. It is primarily a pediatric cancer of the bone or soft tissue, but according to the American Cancer Society only about 1% of childhood cancers are in the Ewing family of tumors. In adults it is even more rare. It is also rare for a Ewing sarcoma to present with a primary in the breast or axilla (armpit).

(Me? Just lucky, I guess. Maybe I should buy a lottery ticket.)

Ewing sarcoma is an aggressive cancer, so the team at my cancer center has proposed aggressive treatment. I’ve agreed to the plan, and I’ll probably write another post about that, since I have refused treatment for so long.

The treatment I’m looking at is planned to last about two years. There will be 17 cycles of chemotherapy, with each cycle lasting six weeks. After a few cycles I’ll have another PET to see if there is any progress and also so the surgeon can decide if the tumor is operable after all. After surgery, if any, I will go back to complete the rest of the 17 cycles of chemo.

The cycles consist of six chemotherapies. In Week 1 of each six-week cycle, I’ll receive one day of chemo with several agents. In Week 4 I’ll have five consecutive days of one agent (maybe two). This won’t be continuous, so I’ll have to go to the center every day of that week. Three weeks after that, I go back to the beginning of the cycle.

In terms of “side effects” (I much prefer the term “collateral damage”), I can look forward to baldness, nausea, diarrhea, red urine, peripheral neuropathy… the usual. I will also be closely followed in terms of cardiac and hepatic function and, of course, those blessed neutrophils. (I’ll be getting Neulastim (pegfilgrastim) regularly.)

It’s so much easier to talk about facts and schedules than feelings. I’m crying a lot these days. I feel bewildered and overwhelmed, but writing things down, making lists and using the calendar in my phone all help. I do not feel at all like the strong woman I know I have been and will be again. I’m focusing on losing my beautiful, long hair because it is easier to think about that than all the rest. Just as I started writing this, I realized that I have to work things out with my helpers by next week, give out some more house keys, and so on. I have to write some emails to various people.

Why did this happen to me? Why did I get with a second cancer, one that is very aggressive? I have no idea. Sometimes things just happen.

Image from Wikipedia: “The National Library of Medicine believes this item to be in the public domain.”

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24 Responses

  1. Phyllis says:

    During my chemo a couple of years ago, my allergies got really bad and the oncologist let me take Claritin daily for them. The Neulasta caused me bone pain in my legs the day following the injection, but at some point, it got so it was not as bad. The one time that I went on line and looked up the correlation between Neulasta and bone pain I found information saying that some oncologists were prescribing Claritin to help with the pain. I then realized that must have been what helped me. When I went back to my oncologist, I asked her about it and she had been unaware of that but had another call from a coleague just before my visit who told her about it. Please check with your doctor to get their opinion. So sorry you are having to go through this.

  2. Maxine D says:

    Oh Knots, how could I forget you?! How ghastly is this news for you. :-(. {{{{{Hugs}}}}} and more {{{{{hugs}}}}}, and loads of prayers. I had been wondering how you were, and don’t know if I like this ‘news’ any more than you..
    Blessings and prayers

  3. Cagey says:

    Hello Claire Edith.

    I have been following your posts with admiration and concern, though I haven’t posted.

    It’s vanity to wish I had something to say that would be helpful because you know more than I ever could every know about what you are going through. Though I do wish it.

    I am sorry for your hard times and I admire your courage. I appreciate your generosity in struggling to keep yourself among us for a while longer.

    I hope that from time to time the sun breaks through.

    All best wishes,

  4. Gail Speers says:

    Well that just sucks! And you are allowed to grieve over this new development. It will take time to adjust no doubt. I know I feel better when I am doing something to kill those dang cancer cells. Perhaps this will be so for you once treatment starts…go choose a few funky wigs, turbans, etc. I’ve seen people do henna tattoos on their heads…v beautiful! How often does one get a chance to do that? But seriously, do take as much time as you need to grieve over this development…no it’s not fair! Best wishes for successful treatment! Gail

  5. Yapcab says:

    Wow. I can’t believe what you’ve been thru and will no go thru. I can relate to the concern over your hair. I’m 60 yet still have s full head of brown hair. I seriously doubt I’ll be able to start Chemotherapy especially given its limited benefit for prostate cancer patients. You will remain in my thoughts and prayers. I hope surgery is an option. If for no other reason to get rid of the reminder. Take care.

  6. Elizabeth J. says:

    Yes, it is not fair! We don’t understand why? Cancer stinks!!!!!!!
    Take time to grieve, get angry, cry……whatever you need to do.
    Just remember, God is always with us and there are lots of us praying for you.

  7. Rebecca says:

    I’ve been wondering about how you are. I am sorry you are facing another cancer. We can only handle one day at a time but allow yourself to experience all the emotions/feelings that come with this mess.

    I wish you good luck with the treatments — may you get the best possible outcome.

    You are always in my prayers.

  8. Kathi says:

    This must all seem so utterly daunting right now. Two years? 17 chemo cycles? Holy crap. It’s like staring at a tsunami that’s about to hit, but you can’t evacuate to higher ground to get out of its path. I know you know this, but a person can only do this one day at a time. It’s too much to take it all in at once. Yet you somehow have to plan ahead for it, but try to focus on one day, one treatment ahead, because otherwise you could really lose it. Oh, Knot…what a tightrope. Sending you every drop of love and support I can. We’re all here for you.

  9. Lois says:

    I am so sorry this is happening to you. I can’t even imagine.

  10. Joanne B says:

    I’m so sorry that you won the prize….with all you’ve been thru and what’s coming is so terrifyingly unfair…..you express so well all our fears. My heart is with you Knots. Joanne B

  11. Stephanie says:

    Dear Claire,

    A wise woman facing a cancer diagnosis said she had “decisions to make”, not choices…because there were no good or better choices…just decisions about the least worst course of action.

    You too seem to be facing similar less worse decisions. I’m glad there are options for you, Knots.

    Yet, it’s another challenge, another crossroads.

    You’ll set your course and adjust your pace and route as need-be.

    It’s good to hear that you’re gathering helpful allies of all types to be your companions on this daunting journey.

    Wishing you continued strength and stretches of inner well being!

    fare thee well,

  12. I’m so sorry you’re having to endure all this treatment, but at the same time, I’m really glad there is treatment available for this sort of thing. That means there’s hope. You have so much strength in you, but I can tell you feel this latest cancer has taken the strength you had and then some. It’s there, but you would be as alien as the lump in your armpit if you didn’t feel scared. Thank God for the earthly angels who are there for you. We, your online community, are there too.

  13. Carrie says:

    I’m so sorry to hear about this update. I have a friend with Ewings Sarcoma and it’s not an easy road. I’m glad that you’ve been persistent and have insisted on a diagnosis. Now on to kicking it’s ass. If you are interested in knowing my friend, I will share her facebook page. I totally get if you don’t though. You have my support from afar.

  14. Beth Gainer says:

    Knot, I’m so sorry that you have to endure yet another hell. Getting help from others (yes, distribute those keys) is going to be crucial. I so wish I could put my arms around you and hug you.

  15. Nora says:

    If anyone can plunder through it, it is you! I think rare things fall on you bc you are a rare bird yourself. Keeping you in my thoughts and prayers and sending kickass vibes too. Hold on dear Claire.

  16. Stacey says:

    I have been reading your FB posts and feeling so concerned for you. I am also in awe of you. You have an inner strength and grace that I don’t know that I could muster if in your place. It’s ok to cry and be angry, but it does help to pause and get everything all in place, it’s something to focus you energy on instead of what is happening to your body. I am sending you hugs and warm thoughts.

  17. Frieda Rosenberg says:

    Though I want to say so much, it’s very hard to express it. I’ve felt sad at your news, but I took comfort from your own hope “I have been and will be again.” I’m with you and cheering you on as you come slowly forward, a long journey, but toward better days.

  18. Hello Knot, I am very sorry you are facing all this. Two years and 17 cycles… It’s a lot to absorb, process, and then go through. Sending you love and support from my corner of the world. I hope knowing so many care about you helps. Thank you for the update. I hope things go as well as possible for you. xo

  19. Susan says:

    Sorry to hear your most recent news. When I was diagnosed with my mets, I was also diagnosed with another cancer, Thyroid. Thankfully, the type of thyroid cancer I have is slow growing. Like you said, things just happen. I have the brca2 gene mutation, and the docs think this is why I got the second cancer. Wishing all the best with your upcoming treatments.

  20. Susan Zager says:

    Oh gosh KT what an ordeal. There are no words. At least we know what it is. What a process. Lots of love and prayers.???

  21. all i can do for you is more prayer and more (((((((((((((((((((((((( Knots)))))))))))))))) and a second kiss on cheek from Texas

  22. Tracy says:

    Some of us seem to get more than our fair share of the darker side of life. Often it seems to happen to those who are ‘good’ human beings – conscientious, considerate, giving. I’m yet to find an answer as to why this should be and suspect I never will. From one good human being to another I send strength, love and the tenacity to endure these new treatments Xoxox

  23. I have no words right now… just lots and lots of love sent to you, always. xoxo

  24. Dear Knot,

    I can’t say much more than has already been expressed except that I will be holding out a bright shining pillar of Love and Hope for you. sending lots and lots of warm hugs to you, my Dear Friend.


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