Bitch Slapped.


That’s pretty much how it feels. Had the final appointment with my oncologist at Anderson yesterday. My cancer has transformed to T cell rich, large diffuse B cell NHL. It is very aggressive. The oncologist said chemo would not be an option, as chemo has not worked for me in the past. She wants me to start on an immunosuppressive drug called brituximab, which has successfully treated DLBCL patients in the past, however, due to the advancement of my disease, she has “serious concerns” that it will even work at all. If the cancer can not be reduced enough by my next PET scan in February, then I will not qualify for the donor transplant. If by chance it does work, and I’m able to undergo the transplant, my oncologist said that a relapse for me will be inevitable. Unfortunately, I also do not qualify for any clinical trials, due to the advancement of my disease.

I had so much hope going to Anderson, and now…well….I just don’t even know how to feel. There is still a very small chance that I can survive this, but it’s very small. Good news was that it has not spread to my brain, and that all of the tumors in my body are pretty small for now, so other than feeling tired and losing weight, I feel fine. Eventually though, if this drug doesn’t work, (*the drug may not work because it uses proteins from my liver to attack the cancer cells, and my liver is filled with cancer)-I will start to feel the effects of liver failure, or will be unable to walk, as the cancer is in my legs and spine.

Do you know how hard it is to explain heaven to a 4 year old? And to try to do it convincingly, as if I weren’t scared to death, and have no idea what I’m talking about? Derek and I look at eachother differently. I feel guilty that he married me, and has to watch me go through this.

I meet with dr c on Monday, so we’ll see when I can start the drug. Even though there is only a slim chance that I will survive, I’m going to fight like hell, and I’m not giving up.

In the meantime though, we could desperately use a miracle. So if ya’ll happen to have some pull with the big man upstairs, please put in a good word.

Ps special thanks for all the words of support and encouragement. Especially to my Seidman 3 nurses, Theresa and Rebecca, who came late to cleveland airport last night to greet me with well wishes and hugs and support, as we got off the plane. That meant the world to me.

PSS dear Ellen Show. Don’t forget about me. Time is what I don’t have much of!

20 thoughts on “Bitch Slapped.

  1. So I probably shouldn’t have read this at work. I’m so angry. I don’t like this news.
    I assure you that your husband does not regret marrying you. Geez, you are amazing! ( as is he)
    I learned so much about love, life, and what really matters because if this awful disease. I used to say, ok cancer, I get it- move on now. Anyhow, I wish you peace with whatever happens.
    Much love, Rochelle

  2. Mary, you don’t know me but my nieces went to John Carroll with you. I am praying for your miracle everyday!! You are an amazing person.

  3. It is not over yet, at least until the fat lady sings. I will continue praying and hope God will hear me and answer your miracle that is needed. You are a fighter Mary, keep fighting. You are a hero to me and so many others. God hear our prayers.

  4. Mary, I don’t know what to say.
    I won’t say I understand because I can’t cant possibly begin to know what it is like to be facing your situation.
    I will continue to pray for you and your family.
    I’m not in with the man upstairs;
    Rather, I tend to think of her as a kind, gentle woman who does not abandon her children. Love, Pam

  5. I am so so very sorry you did not get the news you were hoping for at MD Anderson, don’t give up. Sending a lot of positive thoughts to you.

  6. I read this quote once, that “fear is interest paid on a debt you may not owe.” I think guilt can sometimes fall into that category as well. Thinking about it as such has been helping me to not waste my precious energy on feeling bad that my husband has a wife who suffers from something she couldn’t control. The thing is, you aren’t unlike anyone else in the world. All anyone has is the moment they are in. People who suffer something like cancer are just highly aware of that truth. It’s an unwelcome guest, that awareness, but in some ways it is inspiring. The nice thing is that kids are also very aware of the present moment. “Right now” is all that really matters to them. A month, a year, isn’t really “real” to them.

    Your son may not be able to conceptualize heaven, but he knows and feels your presence in the present deeper than you can probably imagine. He knows who you are and the many things that make you special. My daughter reminds me in the dark times that I am not my thoughts or my broken body. I’m that elusive soundboard that hears and feels all that my body takes in, I am the witness. For us, singing is one of our specialnesses. Together, we choose to turn down the world, and crank up our song. I tell her often that she can hear our songs anytime she wants and as many times she wants. All she has to do is remember and hear them.

    Soak lavishly in your specialness. I don’t know you much at all, but I’m sure there are so many different things that are unique to you + son and you+family. Whatever it is, play your song so loud it shakes the web of the universe!

    Truckloads of warmth and hugs.

    Cynthia

  7. You are in my daily prayers now and I am so sorry for this damn disease doing this to your life. I wish I had something else to say but I don’t. God Bless you.

  8. My friend had cancer and she prayed to mother Theresa…. My friend is still here! It’s definitely worth a shot. Lots of prayers coming your way!

  9. Hello. I have been following your story and I am praying for you. Hard. I really do not know too much about your cancer, but I have a daughter who has had leukemia three times. She has actually had 2 bone marrow/stem cell transplants. So, when you mentioned this route before for yourself, and now that you are mentioning the T cells and B cells now, a thought has popped into my head. I am attaching a link to a YouTube video about a new procedure that has been used with leukemia patients (with T cell and B cells issues). I don’t know if this could be an option for you or not, but I felt compelled to share it with you. I know some UH doctors do know about this (we are in the peds section), so I am sure you can ask about it. Miracles do happen, and I am certainly praying for you to find yours. If the link does not work for some reason, google “fire with fire leukemia” and you will find the video.

  10. My friend took that drug and he did well on it. Father God you are Holy, we worship you Lord. nothing is too big or too small for You Lord. Father I pray this cancer is just a speck of dust In Jesus name. Father I pled the blood of Jesus Christ over this cancer. nothing is more powerful than you blood Lord. Dr.Jesus You are Healer. cancer be gone in your Holy name. Let the cancer that you healed in me be healed in her also. Whenever two or more are gathered in Your Name Lord, it is done it is finished as on the cross In Jesus Holy Name we pray AMEN

  11. Im sure your husband does not regret marrying you, pretty sure he’s in shock too. I would be. Having helped with the lymphoma and leukemia society I have met a lot of people battling and overcoming cancers and they all are amazing with their determination. I’m sure you are as well, just remember the Jim valvano speech and never give up, miracles happen. Best wishes for you and your family

  12. Hello. You do not know me. I read this through a friend, Jesse Haberman, on Facebook. It is truely inspiring, and I will pray for you and your family. Reading this brought a tear to my eye, and I’m praying for a miracle. Because, I believe, they do happen.

  13. We don’t know each other, but I wish we did. Cancer is a bully, as I’m sure you know. It tries to suck you dry of everything that makes you, you. I had a run-in with hodgkins as a teenager. I’m still here. I’m dating a girl, and we have two dogs. I know that you might be feeling like you let your own family down by becoming ill, but I would like to request that you immediately destroy that notion and remove it from your brain hole. Your family loves you. And you will be a stronger fighter because of them. I just wanted to tell you that I can feel all of the love radiating from the comments on this blog, and it’s unbelievably clear that you are cherished among your friends and family and the whole world wants to see you take this cancer over your knee and teach it some manners. So lets do that.

    Jason

  14. Mary,
    Your fight and never give up approach is truly inspiring. What your and Derek’s visit did for me is difficult to put into words. When I was at a low point at Seidman last year, you both stopped in to visit and offered words of encouragement. I wasn’t sure if I was ever going to recover or even leave the hospital and was having another day of overall doubt. Derek and you stopped by with smiles and treats, and it turned my negative attitude to a positive, hopeful one. Knowing what you had been through up to that point made me believe and realize that no matter how bad the news gets, giving up or losing hope is never an option. Mary, you are an amazing mother, wife, and friend, and there isn’t a day that goes by that you and your family aren’t in my thoughts and prayers. If anyone deserves good news going forward it is you. If there is ever anything that I can do for you or your family, please don’t hesitate to ask. My thoughts and prayers will continue to be with you, Derek and Mack.

    Nick

  15. Hi Mary, I’m a friend of Sam’s and I’ve been following your story since you were first diagnosed–we worked at ACS together. I just wanted you to know you are constantly in my prayers and I am praying HARD for a miracle for you!!!! Stay strong–cancer sucks but you are stronger!!!!! 🙂

  16. If you have not already read “Proof of Heaven”, please do. It is about a neurosurgeon who experienced death on the operating table….don’t want to give it away but he experienced a statistical miracle by surviving. It was my brother in laws favorite book…and gave him a great sense of peace before passing. His wife, my sister died last January. They had been married 36 years. I found out he had cancer on 6/10 and was given 6 months. He only lasted three weeks. Unlike you having your son and husband to live for… he was lost without sister. You have the will, he did not. But the book is great for all to read, healthy, sick, believers and non-beleivers alike. I was with both my father and brother in law when they passed. Both experiences were beautiful because of things that happened that showed me there is afterlife and i was honored to escort two wonderful men into heaven. Peace.

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