I am back from my trip and I know that I owe you all a few posts, but I need to use today's post to vent, grieve, and most importantly process.
My trip back east was broken down into sections. The first 2 weeks was with my dad and stepmom, the next 2.5 days was with my moms, grandmother, and aunt/uncle/cousin, and the final night was at my other cousin's house. Sounds slightly dis apportioned you say? Well about 3 months ago I was talking with my stepmom about her cancer. She has been fighting it for 4.5 years and was talking to me about her goal to make it 3 years to her grandson's high school graduation. Prior to this conversation I had not thought about her death at all so a 3 year goal through me off...way off. I immediately felt like there was a ticking time bomb waiting to go off and I needed to get out there and spend as much time as I could with her. So I chatted with my husband and he graciously agreed to letting Superman and I go for an extra 10 days (since he could only take a week off). Turns out it was a good thing we went.
My stepmom had just finished another round of chemo the day that Superman and I got there. It was a new chemo for her (the third new one in a couple of months) and it was an older chemo treatment which meant more side effects than usual (usually she is spends one or two days laying low and then bounces right back into the swing of things...she truly has been amazing through all of it). This time things were a bit tougher. She had bone pain from the medication that helps her restore her white blood cell count (which she is used to apparently and was lessened thanks to acupuncture), abdominal pain (from the tumors pushing on her intestines they think), and was more tired than normal. She spent much of the day sleeping and only left the house to go to the doctor's and the garden she volunteers at on Fridays. Although we made plans to go out to listen to music, eat dinner, and other things, each one needed to be canceled because she wasn't feeling up to it. She isn't one to feel sorry for herself...she pushes through discomfort better than any person I know. So when she says she needs to stay home, I know that she must have been feeling really bad.
During most of my visits with them we have one big conversation about the cancer and then spend the rest of the time enjoying each other. It was clear that things were different now because we spoke about it every day. I spoke with my stepmom about how she was feeling, letting her talk about her fears and discomfort as much as she wanted to, when she wanted to. I spoke to my dad about the plans they have in place, the support they have, about death, and about quality of life. The whole visit felt different because of this...and as much as I wanted to talk to someone about it, I felt like I didn't know what to say and feared that I was just blowing things out of proportion. Maybe this was just a bump in the road, maybe this chemo would be the one that works and I will look like the idiot that freaked out because she just needed a few more days of rest. I called my sister at one point hoping to share with her what I was thinking about and my fears that this in fact was the beginning of the end, but didn't know really know what to say to her. My dad had already told her that our stepmom wasn't feeling good so what more was there to say? The whole time I felt like I could have broke into tears at any moment. I held back though because I was afraid that if I started crying, that I wouldn't be able to stop AND there continued to be that fear (or should I say hope?) that maybe I was just blowing this out of proportion. It wasn't like I could ask them if she was dying or not....I mean, we talked about her dying eventually...but to talk about her current state as "dying" was just too hard.
The day before we left, my stepmom came down with a fever. Fevers are bad when you are on chemo and so they went in to see the doctor. Her blood work came back okay...meaning that her white blood cells, red blood cells, and platelets were low, but within the range of normal. They also told her that she didn't have an infection. When I asked her what they thought was causing the fever, her answer was, "the cancer". It is at this point that I really realize that I do not know enough about cancer and it's impact on someone's body. I didn't know that cancer could cause a fever and since this wasn't brought up earlier as a possibility, I worried that things were in fact as bad as they seemed.
The whole rest of the week I spent worrying about her. I didn't get a phone call so I assumed everything was okay. It wasn't till we arrived back in Portland that I found out that things weren't okay.
My dad sends out email updates on my stepmom ever so often so that he doesn't have to call everyone and repeat the same information over and over. Usually they include what they have been doing recently, how my stepmom is feeling, and the progress of the cancer and how her treatment is going. It might seem a bit impersonal to some, but could you imagine calling 20 something people and telling them these details? I couldn't either. Well I received an email on Saturday. This email explained all the things they had been up to recently, including my trip there, and that my stepmom's fever and the pain came back and she was in the hospital for observation. They had also learned that the CA-125 marker (what I call her cancer #) has continued to go up significantly. My dad explained that they would know more today so I have been anxiously awaiting the email.
So I got the email a few hours ago. The news was not good...the doctors are stopping her chemo and she is being referred to hospice. They have given her about 6 months. My heart sank when I read this. I could no longer hold back my tears and be strong...my worst fear was true. This isn't how it is supposed to work! I have a long history of me worrying about something, thinking the worst is going to happen, and then it doesn't actually happen....I know my therapist has been trying to convince me that I can't actually control life by thinking this way and cognitively I know this to be true, but deep down I feel like I do have this power and just in case I don't, I feel like if I think about the worst case scenario and it does happen, I will somehow be more prepared to deal with it. Thinking that this was the news I would get did not help me process this at all. How do you deal with the reality that someone you love is going to die? I know everyone is going to die sometime, but most of the time we don't think about it....so how do you deal with it when it is right in front of you? You certainly can't ignore it, but dealing with it seems too painful. My instinct was to worry about my dad...if I worried about him then I wouldn't think about how I am feeling and therefore I can push back my dealing with it for now. The only problem is that he is my dad. He doesn't want to really talk about his feelings with his kid...he has friends and support people for that.
So instead, I decided that I would face my feelings and write about them...only problem is that I keep writing about the facts of the situation instead of really addressing my feelings. My true feelings are big and scary and feel like too much to handle. I think the thing that I find myself thinking about what it will be like for her. My dad keeps telling me that no one needs to die in pain anymore and that there are plenty of drugs they can give her to keep her out of pain. My stepmom says that her doctor told her that the type of cancer she has isn't one that typically hurts a lot as you die. I don't want to think about the possibility of her being in any pain and that she might need a lot of medication to stay out of pain scares me. My dad also talked to me about one of his friends. His friend's wife died of cancer and was in a medically induced coma towards the end. Eventually they just withheld food and water and she died within a week (based on her living will). That is really scary to me. I know she was in a coma, but do we know that she wasn't in pain? I hate that feeling of being really, really hungry and the idea of dying that way haunts me.
I am also not a particularly religious person. I suppose that faith would be helpful now, but I don't know what I would even want to believe. Do I want to believe that there is a heaven and that is where her soul will go when she dies? Or do I want to believe in reincarnation and that her soul will live on here on earth? Maybe there are other options too...but the reality is that when she dies, she won't be in my life any more. She won't be there to remind me to take things in stride and grace, to cherish each moment, and to find joy in everything I do. She won't be there to make my dad smile and put him in his place when he needs it. :) She won't be around to see her first grandson graduate from high school in a few years or for her other grandchildren to start school (or to be born for that matter). I am sad that she will miss these things, but I think I am more sad that we will miss her during these events.
So it turns out that writing about your feelings when you are doing everything to stuff them deep inside you doesn't actually work. One of my twitter friends told me that she lost her dad to cancer and that her belief is that time doesn't heal all wounds, it just lessens the pain. I think I want to agree with that...although she probably didn't mean that I can ignore the pain for a long time and then have it be less, did she?
If you have advice for me or want to tell your story please leave me a comment. I would love to hear from you.
Thank you,
Mommy C
Oh C.... I don't have any advice and I don't have a story, but I want you to know that I am thinking about you and your entire family. I'm sending love and hugs your way and I'm so sorry and sad to hear this news.
ReplyDeleteI am so sorry you and your family are facing this. I wish i could give you the magic advice that will get you through this but I cant.
ReplyDeleteAdvice: be there for each other. allow yourself to FEEL it because if you try to stuff it down it will come up eventually. It will be painful - more painful then you can imagine but allow yourself to feel it. surround yourself and your family with love and make this time you have with your step mom count.
I will be thinking of you and your family as you face this journey. Sending you MANY HUGS and lost of LOVE ♥
C,
ReplyDeleteI am so sorry for the pain, fear and impending loss this terrible disease is inflicting not only on your stepmom but your entire family. When my mom died of cancer 14 years ago we learned firsthand how supportive a hospice care team can be. (I also lived a distance from my mom). They helped my family learn about each new stage of the disease. While we were powerless to change Mom's final outcome, we learned many ways to embrace each remaining moment and that helped us find peace as we grieved. My prayers are with you on this difficult journey.
Thank you so much for your kind words. I am going to work on feeling these emotions. I have therapy on Wednesday so that should help.
ReplyDeleteI'm praying for you. (I know I don't know you personally but your story touched me and I haven't been able to get you out of my mind.) I've lost family member to cancer (although not my parents) and it's such a difficult process to walk through. I think the previous people were right, lean on each other and lean on the help of the hospice people. For me, I had to lean on my faith as well. You don't actually have to be a "believer" to read scriptures that give you peace. My favorite in tough times is "The Lord your God is with you... He will quiet you with his love." Oh, yeah, and sometimes. I just screamed at God and asked him why... and I think that's ok too. Sending good thoughts your way.
ReplyDelete@Jackie- You are so kind. Thank you for your prayers.
ReplyDeletemy son has been battling cancer since he was born 14 years ago. It is a horrible disease and a horrible way to die. Medicine has come a long way and can in most circumstances make passing very peaceful. There are things you can do for your stepmom, things you can do for your dad.
ReplyDeleteOne thing I strongly recommend seems small, but it changes so many things. I always make a fleece blanket (the kind with the knots on the edges) when a friend is diagnosed with cancer. I have their family and friends help as much as possible. It's inexpensive, it is very easy, it is fast. BUT every knot contains the love of the person who tied it, every time your step mom uses that blanket she will feel the love you put into the blanket. I think when you give her the blanket you might ask if she would like to help make one for your dad (a surprise) so that after her passing he will be surrounded by her love.
I hope this helps... I'm sorry for your grief and loss. Cancer is a monster, i hate it with my very soul, i hate the things it has taken from me, I hate what it has done to my precious child and I still have him. I cannot imagine how I will feel when he finally passes.
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