A Weekend, Fourth Chemo, and Recovery…
Last weekend was very interesting. I was installed as President of the Silver State Reading Association, the state affiliate of the International Reading Association. Previously, I had thoughts of stepping down due to my latest preoccupation in life; but I decided to stay on, and bring what I can to the role of president. We had an executive board meeting on Friday evening and then an all-day meeting on Saturday. For the president’s report, I presented the book, The Jester Has Lost His Jingle, along with the Jester puppet and his friend, Pharley, and the many wonderful things that can be done as noted on thejester.org website. The book is connected to cancer because the author died of Hodgkin’s just short of his 23rd birthday. One of the many uses of the book and puppet is for children going through chemo…The donations of books and puppets is really meant for any children in need due to illness, abuse, poverty, etc. I noted that each local council, reporting their literacy efforts, is doing what is uniquely needed by its community. I’m not sure that other than the promotion of literacy in and of itself that the councils need a common state mission. My purpose in presenting the Jester materials was just to make it known and suggest that if each council gave only one book and one puppet to one children’s ward of a hospital, we might bring laughter back to someone as the Jester does in the book.
Following the upside of the weekend was the downside of the fourth chemo treatment on Tuesday. My beautiful son, John, went with me, as he had signed up for earlier. Because I had been for labs on Thursday and seen the doctor on Friday, it was surprising and disappointing to find when we got there that I had to go through labs again before the chemo could be administered. This is because some of my counts were low, and they double check before administering the drugs. This meant it would add at least an hour to the ordeal, while we waited for the results of the blood tests. Then they finally got started. John slept peacefully through the treatment, and the nurses noted they were jealous of his ability to take a nap and wished they could take one as well. The next day I went to work and then hydration at the Cancer Institute (Joe went with me each day). Hopefully, the hydration would keep me from nausea and extreme fatigue. Actually, in my visit with the doctor on Friday, the only thing he could come up with was that my fatigue from the last time was probably connected to nutrition. Since, I became so fatigued, I wasn’t getting much nutrition. He must have sent the nutrition lady to see me because she came by with advice for getting nutrition through liquids (like chicken broth, Jello, Ensure, etc.) if I didn’t feel like eating. The next day was the first day on campus for the new teachers at Harmon. It was busy and exciting and uplifting to see so many people so anxious to get started at their new school. On that day (Thursday), after school, I went to hydration again. They were running so late that we didn’t get started until at least a half an hour late…depressing… to spend the afternoon there. By Thursday evening, I began to feel the nausea coming on…not horrible, but not good. Then the tiredness began to set in. By Friday morning, I knew I couldn’t go to work. The fatigue ruled my body, and I could only sleep. By afternoon, I was extremely fatigued and depressed that this had hit me again like a ton of bricks. We went to hydration again. On Fridays they try to hurry you out, so we got out a little earlier. I slept pretty much around the clock, and Saturday was another lost day…lost to fatigue and sleep. Today is Sunday; and, at least, I’m on the computer and have done one load of laundry…giant steps from Friday and Saturday…I don’t know what today will bring, but I hope for continued recovery from the poison drugs that are making me so sick but hopefully annihilating any cancer cells. On Friday and Saturday, I wouldn’t have given two cents for my life and questioned why I put myself through this when death seems preferable. I apologize to my children, who so want me to live on, for having thoughts of relief through death; but that is the truth of the matter. Hopefully, if I continue to feel a little better each day now, I will once again get past those feelings and take pride and joy in my life with my family, work, and friends. Once, earlier, I used the analogy of a roller coaster ride to that of the cancer patient’s experience; and it has only increased in its intensity. A three-week cycle of ups and downs is almost more than I can bear right now. I so want my real life back, and I know I’ll never see it again; I know it can never be. The ups in the cycles hardly compensate for the complete and devastating downs that rack my heart and soul and spirit. So, if I’m lucky, tomorrow I will get dressed, starting with a bra with a prosthesis on one side, ending with a wig of fake hair on my head; and I’ll put on a smile and go off to face the world, pretending to be someone I once was.
Mom, I wish that I could come up with some magical words to make you believe that one day you will feel like yourself again. But I know that there are none, not right now, not while you fight cancer.
I’m here for you Mom … try to be strong. You’ll get through this.
I love you.
Krista
2.5 years after chemo, radiation, hair loss, undescribable nausea, depression, and yes, death wishes, my hair, heart, soul, and spirit are back. Hang in there, Dottie. You will be “back”. Maybe a little changed by the experience, a little more compassionate, a little more grounded by the reality of cancer, but with the hope that you’ve beat it. I’m going for my 3 year check-up next month, and it’s still somewhat stressful – what if – but I just think positive, or try. I know this doesn’t mean much now, other people told me the same thing. Just know that it gets better. Others used to respond that they were so proud of me, so in awe of my strenth during all of this. Bull, I wasn’t strong, tough, etc. I just did what I had to do to get through it – to survive each day as best I could while the poisons wore off. I know that they did care, and their thoughtfulness was appreciated, but honestly, nothing helps more than time. Be patient, take time to feel bad, don’t expect too much. It’s not easy, but you’ll get through it, and move on. My thoughts continue to be with you.
Krista,
I know this is hard for you, and I know you want me to be positive all the time, but I can’t. I also know you believe crying is appropriate, and I appreciate that. You are always tuned in to how things are going with me. Those days that we don’t talk or we only talk for a minute, I know you understand that it’s not lack of interest or lack of love, it’s just complete and utter fatigue. I can barely think that I want to talk to you, and even if I can think of words to say, I don’t have the energy or the inclination to say them. I appreciate that you have begun to understand this, and you don’t put any pressure on me. Someday, I hope I’ll be your real mother again.
Love Always,
Mom
Bonnie,
Your description of what you went through is exactly where I am now. It is so good to hear from you. Sometimes, you know, I feel so completely alone in all of this. It’s not like you want to bond with the other patients at the Institute as they endure chemo, hydration, labs, etc. All I want to do is get through whatever I’m there for and get the H out. You can tell from my entries that I have a wonderful supportive family; and I do have faith. I’m trying to hold on to one of the latest lines I read…if God takes you to it, He’ll get you through it. But, you know, there are so many days when no family member can help; and I don’t feel those angels sitting on my shoulder. Those are the deep, dark days of cancer. I hope someday I’ll be where you are…..looking back. I hope you sail through your three-year check up!
Thanks for all your support,
Dottie
Hey Doc,
I hope you are feeling better by now. We are missing you and talk of you often at Goolsby please know our prayers and thoughts are with you. Is this your last treatment? Hopefully when school gets rolling we can come to Harmon & have lunch with you. We are going to be selling the Jester book at Goolsby starting tomorrow with open house. We hope to start a fund even if small to help any family at school in need due to illness or tragedy. Keep your head up!
Ann
Ann,
You’re the best! I’m so glad Goolsby is getting into the Jester book. We wanted to do a read-a-thon last year, connected to Nevada Reading Week; but, as you know, there’s always so much going on at the school…it seemed it was too much to ask. Maybe this year you could look into it…the school needs the parent group to support it and help facilitate it. You have at least two officers of the local IRA affiliate, Southern Nevada Reading Council…Laurie G. and Angela G., teachers at Goolsby. I found out about the Jester through them; and they could get a hold of the Jester’s mom, Barbara Saltzman. OR you can get a hold of her yourself through the website. She will come out personally and meet with you and even set up an assembly [hmmmm.......] to kick off the read-a-thon.
I hope you get over to Harmon soon. I know how much Goolsby did for Harmon last year; and we’ll be looking forward to more assistance from our sister school. I have more chemo to go, but they tell me the next drug is easier to handle…from their mouths to…..I hope the kids have a great first day of school and a wonderful year, in general. I don’t know if you heard, but at the administrative kick-off, which every administrator in CCSD attended at Cashman Center, Dave McCann singled out Goolsby as one of his top What’s Cool at School reports. He named Goolsby and explained how parents and staff got together to solve the after-school traffic problem. So Kudos to you and Wynn and any other parents who initiated the idea!
You know where I am…Thanks for everything,
Dottie
I am so glad to hear from you. I actually received all of the Jester info. from Laurie and just spoke to her about a read-a-thon, so who knows!!!! I heard Goolsby was mentioned at that meeting, how cool was that! I need to get with you soon and go over what we have planned for our sister school this year. I can’t wait to see you I heard you stopped by Goolsby the other day I am sorry I missed you.
Take care of yourself.
Mom,
I know how you feel. Even though my sickness was not the same… sometimes I would think that with the joint pain and fatique, the fear of a seizure, and the frustration of not feeling normal, heaven would be better – a time and place with no pain. But, look now… after years and years of sickness, look at me. I feel better than I ever have. YOU will also feel better, just wait and see. I love you, Mom. Hope your first day of school is cool.
Dottie–What you are going through is something I cannot begin to imagine and hope I never know. With what you are going through, I can understand your wishes to escape–I can’t even say the word. Your life has meant so much to me. In those moments when I have felt I could not go on, I would think of you and your toughness. And it helped me deal with all the insignificant little things—they are so insignificant, aren’t they? Times like this show us how precious life is and how precious the lives of those we love are. You would leave too large a hole in this world if you left. Hang in there.
Sharleen,
I had no idea that I could inspire you. It’s actually the other way around! I know you’ve had health issues over the years; and you always talked about them like they were no big deal. They certainly sounded scary and risky to me. So, don’t be changing this around; you inspired me long ago with your strength and your ability to minimize medical procedures and health issues. Regardless of whether you were/are in a good place or not, you always keep that facetious, semi(?) sarcastic humor going…especially in your mass emails to folks who don’t appear to understand the simplest of directions.
Our common experience as old war-horse pit clerks might have something to do with keeping a sense of humor regardless of circumstances or the people with whom we’ve been thrown together. I’m certainly glad that I’ve been thrown together with your world; your tough girl image and continued sense of humor in the face of pure-out silliness or straight-up seriousness are helping me through.
Dottie