Wednesday, June 16, 2010

June 16, 2010

Today I thought would be a quick visit to the oncologist, more information and home. Rich and I were there from 9 AM until 1PM. The team that I have is phenomenal. They work in tandem like a fine tuned clock. My oncologist spoke with me for almost two hours as well.

The whole treatment program will be 5-7 weeks long. This means I will be going to the U of M every Monday through Friday and meeting with my radiologist every Weds to make sure everything is going okay and meeting with my oncologist as well once a week for her to be sure everything is going okay, having blood drawn---they watch you like a hawk so my initial concern with all these chemicals in my body how will they know if something is amiss? How will I know? They are so on top of it and I have umpteen numbers to call day or night. Amazing. I feel like I have this special lifeline to the medical staff and that gives me peace. While daunting and a bit overwhelming for me to think about all this that will be going on, at the same time, I feel comforted by the fact they are so diligent. How diligent? when I mentioned I had a fever the last two evenings, the chemo doctor called my surgeon (head of this team) and he prescribed prophylactic antibiotics plus take a chest xray and blood work to be sure my white count was good and I wasn't anemic. That's why we were there so long. Thorough. My life is in their hands and they are taking this more seriously than I am. I felt absolutely secure and safe in their hands.

Friday I go through a simulation where they measure everything to pinpoint where radiation will be zapped - assumption is they will do the suspicious nodes first just in case the little spawn are in there of Harvey's and then as time goes on start to give Harvey a piece of their (and my) mind. He's a big sucker so they will need to be very aggressive...which means I will be getting the brunt of it by week 3 or 4 when immunity is lowest and symptoms start to accelerate and appear or get worse. Right at this moment my thought is: "Bring it on" -- remind me of that in the weeks to come when my mantra might change to "oh ^%$#, get me outta here!".

Monday I'm having a 'port' put in - not wine, unfortunately although that would be a nice addition to the chemo and bloodwork. It is a device implanted under the skin of my collarbone where they can infuse the chemo (which will be attached to me in a small container) 24/7 for five days the first week of radiation and the last week of radiation (if my body holds up). It can also be used to give me blood transfusions if my white count lowers and also to take blood to check my levels. I have to learn to wrap this in plastic wrap around my port to keep it dry when I take a shower (maybe the press and seal will come in handy now that I purchased in bulk from Sam's club and didn't really like using as it bunched up every time I tried to wrap some food.

I started putting together a tote bag filled with everything I possibly could need to get through the treatment weeks based on what my new buddies on the ACS site and blog have suggested. What a great site. I'm sorry we all have to be in it but the camaraderie and caring of individuals who are going through this or already went through this is unbelievable. No matter what emotion I am going through at the time (and trust me the roller coaster of emotion is so profound it is hard to explain) I can go into this site and express it and know there will be quite a few coming on who get me through it with their words and encouragement or advice on how to cope. Then there is the humor. The stories they tell during what might have been a difficult time, sprinkled with humor at the situation. Each area infused me with hope and love and virtual hugs. From them a different hug because they are on the front lines like me and know it from a different personal perspective. From you, who know me, just being there with support and love means a great deal to me. I'm still not quite ready for 'real' hugs yet. My emotional side is so sensitive that I cry at the least little thing. A real hug would unleash more than I could handle right now.

I need to face this in a different way than Richard or the kids are facing it yet I'm not sure how to do that or how I am going to face that. My faith I think will carry me through a major of the times I am alone, facing the treatment or dealing with the effects of it. In between I will heavily depend on the emails and posts and cards and my ACS emails to pull me through plus my family being around me. I'm glad the World Cup is going on right now because I'm sure it is taking some of this insanity off Rich's mind, Justin and Meg have their own space to detach and focus on their lives, even though I know they care and would be here in a heartbeat I'm glad they are away to be able to detach. Brandon still is here and while his girlfriend is supportive and her son keeps his mind occupied, he is still here seeing the brunt of this and hearing what is going on. Just when I think Brandon is not really grasping what is going on, he will do something that makes me realize he does know but is internalizing it all which I'm not sure is good.

He came home from a funeral the other day (his girlfriends grandma) and he hugged me harder than he ever has in his life - he's not a hugger - so this was highly unusually and he was crying. When I consoled him for having to deal with his first funeral and sadness he said it wasn't that, he realized what was going on with me. The look on his face and the sadness and fear in his eyes were enough for me to push through this whole treatment program. It is my 'raison d'etre' right now to forge ahead and push ahead. Simply that look on my son's face.

I don't know how to face Harvey right now. I want to believe that I am strong enough to get through this but at the same time I'm scared of it. From what I have read and heard from others, once you have cancer, it hangs over you like an albatross - even when Harvey is gone and toast, there is a chance he will come back...there is a chance the radiation will create a new different type of cancer later on. You are left with scars that go way beyond the physical. From what I gather, the best way to beat cancer is to LIVE each day regardless of it. And that I am trying to do but it is not easy.

Next post will be after the 'simulation' on Friday where they retro-fit me so to speak for the CT that will be zapping me with radiation. Be well, Marilyne


  1. Mom, you are strong enough to get through this, I know you. All these years we have leaned on each other...laughed with each other, cried with each other, been there for each other and that will never change. You are my mentor. If I in life can be half the person you are then I will be fulfilled.


  2. Wen, look in the mirror honey, look what you have accomplished and are accomplishing with your own roadblocks and hindrances not of your ARE as strong and you ARE in many ways better than me. I look to you just as much for strength and love and being there. When J had his seizure who was there with me in the emergency room? You dropped everything. That was only one instance. I can count many. You are my 'daughter' in so many ways and I love you more than you can imagine. I'll always be here for you as well. That is a given. Love, Mom

  3. I got a tip today from a co-worker who has had chemo/radiation before ... being as the radiation will "burn" and there isn't exactly a band-aid large enough (or that will cover where you need it to) .. she learned that after putting on the medicated "goo" .. wrap the area in saran wrap. It keeps it on the area and not your clothes, and it doesn't stick to the sore when you need to remove it.

  4. Well, that is an awesome tip, Meg. Please tell your co-worker thank is she doing? All good? Thank you. They told me today that the burn or discomfort starts to occur around week 3 or so...some pepole sooner depending on skin tone (I'm assuming melanin color).