When you know what you know…
When you know what you know and life still feels so uncertain.
I wish I had a really good excuse for all of the quiet. I wish I had the words to explain all of the quiet. It would help me, not just here on the blog but in my home and with my family and friends.
It is now 5 months since this whole shit show began and I am tired, sore, sad and withdrawn. None of these are characteristics that I would ever choose to say out loud about myself, even if I felt them, so please bear with me in this post which feels both vulnerable and a bit scary for me.
I have tried to understand why I have shied away from writing and I think it is mostly about how my writing might make others feel. Disappointing others or worse yet having someone be unhappy with me has never sat well. When I visited with my Auntie Helen in Winnipeg at the beginning of the month she asked me a question about the results of my lefty lump. I apologized and said to her that I had posted that on my blog as soon as I received the results. “Did you not see it?” I asked her. Her response was, “Oh no, I can’t read that. It’s too depressing.”
I don’t want to depress anyone and now that I am pretty sure I am actually struggling with some depression, what the hell am I to write about and how am I not to make it depressing!?
My objective from the beginning has been to be as transparent and honest as I can.
It is May 29th today. 26 days out from my bilateral mastectomy. This has been the most difficult 26 days of my life. Well, maybe not the first 10 days of those 26. Those seemed to be going really well, but the 16 days that have followed have really been hard. Physically I have been suffering from terrible nausea. I have felt lonely. It has been painful and I have had surgical drains from each of my breasts (or none breasts) up until yesterday. I am very relieved they are now gone. Tomorrow I can finally shower! I have not had a shower since May 3rd. Think about that for a minute. Well, except for this past Friday when I had a rebellious moment and jumped in and let the shower run on my back for a few minutes. I can hardly wait until tomorrow at 5pm when I can actually have a guilt free shower. If you are looking for me, I will be in the shower then until the water turns cold.
I was prepared for my breasts to be gone. They look a bit scary and I will post a picture in the comments so you have an idea of just what it looks like, but honestly, these breasts don’t scare me anymore. The pathology confirmed that there was still ductal carcinoma in SITU in my right breast and there were some notable changes in the cells around those milk ducts but thank God there was no invasive cancer. My left breast tissue had notable density changes but was all clear of cancer. The good news is that I do not have to have any chemotherapy or radiation. I was terrified of that, so am very relieved.
So you see, it just doesn’t make sense to me that I should be feeling so shitty. I am currently NED for my ovarian cancer and all clear from my breast cancer. We should be celebrating! I should be feeling like I am on the top of the world. I don’t. I feel mostly like sleeping and crying comes pretty easy too. I’m kind of broken.
Paul has been away a lot. That has been really hard for me and when he is here, we are in two different places about my health. It’s a relief and seems like it’s all in the rear view mirror for him. I think he is just patiently waiting for me to be back to “Good ol’Shelley”. Will I ever feel like that person again? I’m not sure and this has definitely been hard for him and I. I have never wanted to be that wife that was begrudging of her husband being away so I think I have suppressed those feelings hoping they would pass but instead they have kind of compounded with each trip he has had this month. Being away doesn’t really give him the advantage of seeing my day to day struggles so then when he is home I just feel so disconnected. He will return tomorrow and I hope we can continue to reconnect. Supporting someone through this is so hard as the someone, when they are like me, doesn’t even know best how you can support me.
My daily activity is up to about 3-4 hours a day now. I have pretty good movement in my arms. Better than I thought I would for sure. I am awake more and am able to do most things on my own. I can’t lift heavy things, style the back of my hair or wash my back in little bird baths that I am allowed to have. I have been spending lots of time in my red chair with a blanket on then a blanket off then two blankets on then open the door and let cool air in and take as much of your clothing off as you can… yes the hormonal changes are HELL! It is actually unbearable at times. I am awake every 10 – 15 mins all night either putting blankets on or taking them all off. I am sure that is where the fatigue is coming from. That and the healing process.
This past saturday I got a call from my Rink Ratz. They are my dear friends from my ringette team back in Winnipeg. I LOVE them! I was explaining to them that I hadn’t given an update as I was really struggling and my friend Tammy (https://www.facebook.com/tammy.oze?fref=gs&dti=669884566735143&hc_location=group) said that’s why you write Shelley. We are here for you and can then stop wondering how you are doing and send you our virtual hugs. She is right.
For whatever reason, or for all of the reasons, I seem to need those most now.
I’m sure I will feel better once I have my shower.