I have learned that life is short...and life as you know it can be upended in an instant. My world turned upside down on Memorial Day this year...and I didn't even realize it at the time. From the time my mom left the hospital I had a nagging feeling that I was losing her. In fact, for months, I felt like I had lost my mom and she was right there in front of me. Over the weeks, I watched my mom suffer because she did not feel well...and no one seemed to be able to tell her why. For a week or two in late July/early August, it started to feel like she was coming back to us...until her balance issues started. Over the course of ten days before she was hospitalized at on August 21, I watched my mom deteriorate. But, it was that simple 24 hour period beginning around 5:00 pm on August 21 when I finally realized how my world would forever be altered.
Today was a difficult day for me. On the one hand, it was filled with so much happiness as we were able to share in the naming celebration of our good friends as they gave their daughter her Hebrew name. I found myself crying at so many points during that ceremony - sad that my mother was not able to be there (in fact, she was angry that we did not bring her outfit so she could join us, and even angrier when she realized we went without her) and sad that Maya's naming ceremony a month before all of this tragedy struck will likely be the last time my children celebrate a family event with all four of their grandparents together. We were so touched today when they mentioned mom during the ceremony, and so thankful to all of the people who came up to us to tell us that their thoughts and prayers are with us. It was a beautiful event, and we were lucky to participate.
While we were at the naming ceremony, my mom's friend and my cousin visited with my mom at the hospital, and another co-worker also stopped in to visit. I am happy to report she was headache (and nausea) free today! The rehab unit had a "BBQ" on the floor...burgers, dogs, cole slaw, potato salad and cookies. They had a good time there. My mother spent most of the day in therapy...speech therapy, physical therapy, occupational therapy and recreational therapy.
After the naming, my brother, father, DH, Micah, Maya, some family friends and I all headed over to the hospital. We were joined there by four other friends. My mom was so busy with therapy that we had very little time to visit with her. I went with my mom to her recreational therapy where they had her playing circle solitaire. It was so hard to see my mom frustrated and tired by such a seemingly simple task...playing a game that she once taught me how to play more than 20 years ago. She found it challenging to turn her head and use the vision she has to find the different piles. She had difficulty figuring out how to count from 7 to 10, and she couldn't remember the way the numbers on a clock worked. No matter what happens, this tragic disease has stolen so much already from my mother...things she can never get back.
After her therapy sessions today, my mom was exhausted. At one point, she turned to me and said "this is just so hard for me to do, Tess. I'm so tired, and I just want to go home." It brought tears to my eyes, and I put my arm around her and said "I know mom, but it takes hard work to get stronger, and you can do this." Before I left this evening, she asked me to gather her things together. When I asked her why I needed to pack them all up, she asked "Aren't I going home tonight?" When I told her that no, she wasn't, and she was supposed to be in rehab for 2-3 weeks, she looked devastated.
On a positive note, tonight around 9:00, I was sitting here, starting to write this blog, when the phone rang. I looked at the caller id and saw that it was my mom's cell phone! My heart skipped a beat as I eagerly answered it. I waited a few minutes before my mom actually managed to get the phone to her ear and speak. She greeted me with her typical "Hiya" and said she just wanted to call me to say goodnight. She said that they had just given her meds, and she was going to bed. It was 100% my mom...as if there was nothing wrong at all. We chatted a few minutes and then I said goodnight and told her I would see her in the morning.
If you'd like to end on a high note, perhaps you should stop reading the rest of this blog post. Tonight, the sad is taking over, and I intend to share that here. Everyday, I receive so many words of encouragement...and I appreciate each and every one of them. But, at the same time, I cringe every time someone tells us how my mom will "beat the odds" or shares a story about how someone they know with a different type of stage IV cancer went into remission. I know those words are meant as messages of hope, and I know that everyone just wants us to have faith and keep strong. But unlike so many other cancers, GBMs are fatal - they are not curable. Some people, who catch it early enough, or have them in locations that are fairly easy to remove surgically can have some really good time and years left - they live with cancer, but they are not "cured." I know everyone is well-meaning and wants to give us hope for a happy ending...but it just hurts when I hear those comments, and I'm angry at the unfairness that my mom doesn't even have a fighting chance to beat this disease. Because my mom IS a fighter, and I do believe that if there were odds of survival and cure, she could do it. My mom always used to tell us that "no one ever said life is fair." Well, she is right, because this definitely isn't fair. All we can hope for is a little more time, and I do hope for that with every fiber of my being.
Even if my mom becomes one of the "lucky" ones and manages to live another year or two (or even more), she has already been robbed of so much of herself. Her independence is gone...that went with her loss of vision, her loss of balance, and the loss of use of her left side of her body. Those are things she will never recover. She won't be able to babysit her grandchildren, or crochet an afghan, or drive herself to dinner with her friends, or take off for a girls' weekend, or any number of other things she loved to do. This disease has already destroyed so much of her brain that she will never be as she was even just a few short weeks ago. Luckily, this disease has spared her memories and her personality...she is now my mom, trapped inside a failing body.
And I am angry at the doctors who say finding it earlier wouldn't have changed the outcome. To parody a Bill Clinton phrase, it all depends on what your definition of "outcome" is. As I've said before, I understand that if your definition of outcome is life v. death, then yes, finding this cancer back in May wouldn't have changed the outcome. This GBM was fatal the minute it appeared in my mother's head, and I understand that. BUT, if "outcome" is defined by quality of life and longevity, then I absolutely believe that finding this tumor back in May would have made a difference. She could have gone through surgery, chemo and radiation before she lost her vision, her balance, her strength and her ability to walk. She might not have needed to go to rehab at all, and she could have lived comfortably in her own home during this time, walking the stairs, doing the things she most enjoyed doing. I firmly believe that we could have gotten more of the tumor, possibly buying her a bit more time. If nothing else, my mom could have had more strength to fight and LIVE in the now. I also believe she would not have endured the past few months of misery, and I think that the time she had left would have been better quality time. So, hearing that the "outcome" wouldn't be any different does not provide me any sense of comfort at all, because I am 100% certain we could have given her a bit more quality. And any doctor who says otherwise...well, just is choosing a different definition of the word "outcome."
Each day, simple things in life make me realize what I will be losing when I lose my mother. And yes, I said when. I hear one of my mom's friends pass on news of someone we know, and I realize that I will be cut off from the "grapevine." I talk about planning a trip, and I realize that I'm not sure what I will do with my children when I go out of town. My mom is one of my best friends, and I rely on her for so many little things. She is my sounding board and my outlet. In times like these, she is normally the first person I would turn to for help...and I can't because she is the one who is sick. I think of a million and nine inside jokes and little phrases that my mom and I say to each other, and I realize that there is no one else in the world who will understand what is funny about them. I miss having my mom call me everyday to say she is "touching base" to which I always respond "what base are you touching?" and my mom promptly laughs as we say "third base." There is a story there...and probably no one else would appreciate the humor in it. I think about how she tells me she is going to get her hair colored, and I ask her what color, and she responds with "blue" while we both dissolve in laughter. I wonder who else knows enough about me to share my "small world" experiences. I start singing the song "You Are My Sunshine" to my children, and the words my mother used to sing to me when I was a small child smack me between the eyes..."You are my sunshine, my only sunshine, you make me happy when skies are grey. You'll never know, dear, how much I love you. Please don't take my sunshine away. The other night, dear, as I lay sleeping, I dreamt I held you in my arms. But when I woke, dear, I was mistaken, and I hung my head and cried." I already miss my sunshine.
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