Thank you to all of you who are sending me emails, notes, prayers, and good wishes. My heart is touched deeply knowing that I am so loved and that so many of you care so much about me. I have also been hearing from people that have heard about me and my story, they have contacted me telling me how much my story means to them or inspires them. What a blessing and legacy for me to know I’ve made a positive difference.
Even though it’s difficult for those who know me to walk this walk with me, you are doing it. I am so thankful for everyone that is keeping in touch. You inspire me and give me strength. You let me know that I’m not alone, that you are here for me, no matter what. We get to share what’s happening and to talk about whatever we want to, including how I am feeling, both emotionally and physically. I could not do this without all of you sharing this journey with me.
I am writing a health update, so you know my current health condition. I’ve received many emails and phone calls asking how I’m doing, and I also get emails where someone tells me that they periodically check my website even though I might not hear from them often. They want me to know that they are reading my stories and thinking about me, and also want to know how I’m doing healthwise.
So, here is the latest information on my health… My condition seems to be worsening. No surprise here. We keep hoping for a miracle, that it will just disappear, or improve, but it’s not happening, and most probably will not be. Last Friday, November 15th, I noticed that my left foot was feeling a bit numb and tingly, and where the tumor is in my left pelvic/abdominal area was giving me more sharp pains periodically. I thought this is just temporary. I’ve had the sharp pains intermittently for a few months. They seem to come and go at random, and only last seconds. So, I thought the numbness in my foot would go away soon. Well, it hasn’t yet. Yesterday, it felt like it’s moving up my leg into my calf and lower knee. Perhaps, it will go away but I’m guessing it’s not going to. We knew the tumor was tangled around muscles, nerves, and tissues, but I didn’t really have any symptoms of that, other than in my abdomenal area. I’m also having numbness in several fingers on both hands. I can still walk, drive, do laundry, go grocery shopping, and have a fairly normal life. My energy level is a bit less, and my lung capacity for oxygen is too, since it’s being compressed.
I’m guessing the tumor is still growing and also pressing on my organs more, because the area under my ribcage all around, front, back, and sides is really sore again. The best way to describe it is that it feels bruised and tender. My ribcage area is sore to the touch. There are no visible bruises since they are all internal. Many years ago, I slipped in the bathtub and hit my ribcage on the side of the bathtub. I didn’t break any ribs, but I knew I bruised them, it hurt really bad, even to breathe. Because of that experience, I know what bruised ribs feel like. It took weeks to heal. What Dr. Borrows told me a few months ago when I noticed this bruised rib feeling is that the tumor is growing and pressing against my organs, adhesions, muscles, tissues, etc. She said my organs are being bruised, and she used the example of a closed fist pushing into an partially open fist, which would be your other hand formed into a C shape. I guess it’s sort of like throwing a baseball into a baseball glove, leather only has so much stretch and give. This is causing everything inside me to be compressed more trying to find places to move to since the internal space is becoming less. As this is happening, it’s pressing against my ribcage and other bones, which is bruising them and/or making them hurt. It seems from living through this for several months, that it feels bruised for a week or more, then seems to let up a little. I’m guessing the organs are healing from the trauma. Then it happens again, and the process repeats itself.
For the past week or so, it’s not let up. It seems to be more intense and painful. My stomach and chest seem to be expanding slightly making a bit more room inside, but, I don’t know how much more it will expand. My entire abdomenal/pelvic area, and around and under my ribcage, are really sore and very hard. I know it’s not from working out and becoming toned. It’s from what’s happening inside my body. I can’t believe it keeps getting harder in different places, but it seems to be the case. Also, my back is beginning to hurt again. This too has been intermittent over the past few months, but now it is not letting up much. I’m also getting occasional headaches with sharp pains on the left side of my head.
It seems that my pain is usually less intense in the morning, so that’s when I do my errands or meet friends for lunch, and just try to get out of my apartment for a while. Then I come home and take my medicine, read novels, exchange emails, relax, take naps, etc. Increasing my medicine has become a necessity. I’m still trying to find the balance between taking enough to not hurt, and to not take so much I sleep alot. Since the medicine takes about an hour or more to begin to work, I am trying to take smaller doses closer together. However, sometimes I have to take the larger quantity, then I know within about an hour and a half to two hours I will be taking a nap.
I’ve noticed the past week that the pain is beginning earlier in the day, and now sometimes in the morning. I really don’t like that very much. Once I take any medicine, I don’t drive anywhere. A few days I had to begin taking medicine about 10 a.m. then I am home for the day unless I ask for a ride. If I need or want to go anywhere then I have someone take me. I’m doing my best to not be frustrated and to go with the flow. I’m realizing my limitations and what I need to do to conserve energy and still do things. Sometimes when a friend wants to go out to eat I let them come get me. I’m learning to ask for what I need such as coming to get me rather than me driving to meet somewhere. Guess what… the person I ask is happy to do it. They like that they can do something for me.
I’m still able to eat food and drink liquids, however, the quantity is less. I fill up much more quickly. Usually, a cup of food fills me up. Even my ice cream consumption has been reduced!!! I know, it’s really sad. I used to be able to eat a pretty good size dish of ice cream, and when I have brownies I baked, I add at least one to the bowl. I love eating brownies and ice cream. Now, I have to eat about half the portion of ice cream… I know… it’s a tough thing. The only two doctors orders Dr. Borrows gave me was to eat whatever I can, and to take enough medicine so that I don’t hurt. I think these are the best doctors orders that I have ever been given… Lots better than some others I’ve had over the years. But then I wasn’t terminally ill… only recovering from surgery. Still, it’s not easy at this point to eat or drink. It’s not only filling up quickly, it’s also that sometimes by eating I get spasms, or a burning in my esophagus, or I get queasy. I still try to eat what I want within reason. It’s getting to be a guessing game now…
I’m also doing a guessing game with the medicine. I have a few television shows I like to watch so I try to take my medicine so that it is working on the pain, but not affecting my awareness for the time these shows are on. Every afternoon, I watch Ellen, it brightens my day and makes me laugh. Every night, I watch The Tonight Show with Jay Leno, and The Late Show with Jimmy Fallon, these also make me laugh and relax. Tuesday nights are NCIS and NCIS LA. I think I’ve almost figured it out. For the evening doses, if I take my medicine about 8 p.m. and 11:45 p.m. then I make it through the shows and can stay up until at least 1:30 a.m. If I’m still awake, I read until I get sleepy. Sometimes it’s 2 a.m. other times later. I’ve been known to read until 4 or 5 a.m. Yes, then I do try to sleep later in the morning.
One of the questions that I don’t get to know the answer to is how much longer do I have? Several people have asked, and my response is I don’t know. It’s up to God. As I’ve said before, neither my doctor or I thought I would still be here now. We never thought I would be alive at the end of this year. Now, it’s about 5 weeks away and it looks like I might make it. None of us ever knows. Granted, my situation does limit my life expectancy quite a bit. There are many of us who have surpassed a prediction, like Valerie Harper for example. Many people die suddenly and unexpectedly. We never know when our time is up. That’s why I emphasize to live life fully, have your documents prepared. See my story, Seriously, Really, You would Rather Be An Ostrich (November 2013).
I still feel extremely grateful for my life and all that I have. The other day when I was doing errands, I was stopped at a traffic light. A man rode past me riding a bicycle. He had one hand on the handlebar and one hand pulling a small suitcase on wheels. It looked like this was all of his belongings, I could be wrong. I sent prayers with him and I remembered how difficult it is to pull a suitcase on wheels through an airport. I had to switch hands when my arm got tired of pulling it. I can’t even imagine doing it on a bicycle, going up and down curbs, turning around corners, stopping for traffic. I was grateful once again.
My door poster is still evolving. My friend Maggie in New Jersey sent me some fall leaves, so I added them to the poster, along with some small wood cutouts I got at a canoe journey in Washington state. It’s interesting how adding items to the poster changes the energy I feel from it. It seems to have a calming effect on me. I’m sure because everything on the poster reminds me of places I went, experiences I had, and my friends. I feel it’s one of the best ideas and most creative things I’ve done. Looking at it brings me so much joy. Here are the newest photos.
I thought of another Lois story to share with you. In the late 1980s and early 1990s, I worked for a large clothing store in Fort Worth, Texas, and the surrounding area. I did the charge accounts, billing, and bank statements for approximately 18 stores. Every month, I had to reconcile all 18 bank statements. The main account had several hundred checks and deposits since it was for multiple stores, the bank statement was many pages long. Bank statements for two of the stores were not as large as the main statement, but they still took lots of time had a hundred or more checks and deposits and were several pages. The remaining bank statements were really easy. I always did the easy ones first to get them out of the way and because they were the easy ones. Then I found that I procrastinated a bit doing the remaining three statements. I knew they were difficult and would take lots of time. One day, when Lois and I were talking about our days, mostly what I did since she was home confined to bed all of the time, I mentioned about the bank statements. I told her that I wasn’t looking forward to the three I had left.
Lois suggested that the next time I had to do all of the bank statements, to do the hardest one first, then the next two hardest ones, then save the easiest ones for last. That way, I would get the worst ones out of the way and look forward to completing the project and reconciling the bank statements, not dreading doing them. I tried it and guess what, of course, what she said was true. So, I began doing it that way every month. And, I applied that principle to tasks whenever I had to do things I didn’t really like to do, like filing, reports, etc. Do what I didn’t want to do first, usually in the mornings when I had the most energy and my mind was still fresh, instead of waiting until the afternoon when I was tired and worked for several hours. Of course, things happen during the day at work and it’s not always possible. But, when I could apply that principle, it seemed to work well.
Thanksgiving is rapidly approaching… Happy Thanksgiving to all of you and your family and friends. If I’m able to travel, I am going to a Native American pow wow near Ocala, Florida. My friend Albert Gray Eagle and his niece Tori will be there. Albert will be performing on Saturday. I really want to see him. I last saw Albert in October 2011 when I stopped by his house on my travels from Albuquerque to Fort Worth, I detoured through Oklahoma City to visit. We went to a Completing the Circle event, it was really touching. I introduced Pam to Albert via phone and email, we all have the love of the Native American flute in common. Because Pam wants to meet Albert in person, she is going to the Chambers Pow Wow. I’m hoping to go with her, so if it’s meant to be it will happen. I know it would not be wise for me to drive about 5 or so hours by myself. Even though I would love to drive my camper and make it a week or so camping trip, I am realizing my limitations and not doing it. I will be happy to have the day or so there and visit with my friends.
When I watched the July 4th fireworks, I thought this is probably the last time I will see them. Now, for Thanksgiving, I am thinking that this might be my last Thanksgiving. It’s a bit surreal. So, I’m enjoying every minute that I can. I’m also enjoying making more memories and having stories to post on my website.