It’s been a while since I wrote a health update. The reason is that there’s really no significant change since my February update. I have days where the pain is a bit more intense, but I’m able to manage it with medicine. Some days I have to take more than other days. I feel that the tumor is still growing, my left leg and foot are getting a bit more numb, and my abdomen is feeling more bruised again, this means my organs are being more compressed. After a few weeks the bruised feeling lessens, then as they get more compressed, it gets more sore again. I’m actually getting used to this happening.
Eating is more challenging. I can still eat, but quantities are getting smaller. I make myself eat something every few hours, and especially when I have to take medicine. I am eating lots of ice cream sandwiches which seem to be a new favorite of mine. I have tried several brands and have not found any I am really attached to. I like brownies and ice cream, and I when I bake brownies I freeze some so I have them when I want a snack to eat with a bowl of ice cream. I decided to bake some really thin brownies and make my own ice cream sandwiches, this way I can put different flavors of ice cream in them.
I get tired more easily and get sore, from doing my errands, having lunch with friends, etc. I take longer naps in the afternoon. I recline more often to take the pressure off my organs and stretch out my body. I bought a rocker recliner chair for my bedroom so I can sit up in a chair and read or watch TV and not have to lay in bed as often.
Many of you are sending me cards and emails, and other items such as a puzzle, book, CDs, etc. I have a basket full of cards. Thank you. When there is a sticker on the envelope, I cut it out and add it to my door poster. I also add some of the cards to the sides of the door poster. Thanks to many of you, my door poster is pretty much full, and there are not many places left to put pictures and other items that I receive. So, I started another door poster on my closet doors. I also hung the two fire helmets on the wall above my closet door so I can see them when I’m laying in bed. After putting the chair in my room, hanging the fire helmets and pictures fire departments sent of their departments, and other items, the energy in my bedroom feels more cozy and comfortable. I know and feel how much I’m loved. The photos below show what I see when I am laying in bed or sitting in my chair.
I enjoy watching The Tonight Show with Jimmy Fallon and Late Night with Seth Meyers. (I really miss watching Jay Leno.) I find that I will be watching one of the shows, and then a while later it’s another show on the screen, or I missed a part of the show I was watching. I seem to just fall asleep and not know that I did it until I wake up. Thankfully, I don’t do this when I’m driving. I tend to only drive in the mornings and early afternoons. Some days, it’s not easy to get out and about, but I make myself do it almost every day.
I want to share this 5 page advanced medical directive document with you. One of my doctors gave it to me a few years ago, he insisted that I complete it and keep it with my other documents. Please read it, share it with others, complete it, discuss your wishes with your family members or health care surrogates, and put it with your DNR, Living Will, and other important documents. Several of my friends told me they agree it’s important to have proper documents in place. I was told by one friend that it’s too emotional to put these decisions and legal matters into the hands of others, especially when it happens unexpectedly, and they don’t know our wishes. The forms and documents may not ever be needed, but it’s better to have them in case of an unexpected emergency, then need them and not have them. 5 page advanced medical directive
Also, in October 2013, I wrote a story that I feel is really, really, important. It’s called Seriously, Really, You Would Rather Be An Ostrich. Please make time to read this story and take action to have your medical and legal documents prepared, if you have not already done so. Also, have your family members and friends do them too. We never know when they will be needed. Unexpected circumstances and accidents happen to people of all ages.
I’m still having some issues with VITAS Hospice, and I am working with their personnel to get it resolved. Last week the social worker came to visit and I told her again the problems I am having with her company, such as getting the medical supplies I need for my ostomy. Today, I spoke with her again and told her that if they don’t get my supplies for me in the quantities I need, and have them delivered on a regular schedule, that I will withdraw from the Hospice program, and have my doctor write prescriptions for my medicine. Then, I won’t sign up for Hospice again until it’s really needed when my condition worsens. As I wrote previously, I only enrolled in Hospice to help me get my pain medicine which seems to be challenging since not many pharmacies carry it.
I also told her that I don’t need weekly visits. I know for a fact that Medicare requires that Hospice only has to visit me once every 14 days, not weekly like they want to do. My nurse said she has to come at least once a week, she would not agree to the once every 14 days, even though it’s within the guidelines. I told the social worker, she told her boss, and they are going to change my visits to once every 14 days. I also told her that I have a concern for when I am not able to function to the level I can now, that my medical supplies will not be ordered timely, and that I don’t have confidence that it will be handled by VITAS staff for me. I told her to try to get someone on my Hospice team to place an order every 2 weeks, automatically, so there will not be an issue to get them regularily. She spoke with the proper people at VITAS and she told me there was an email sent to my team people so it should be done. I told her this is the last chance, if I don’t get them every 2 weeks, then I will withdraw from their program, and I will contact whoever I need to and let them know why. Update March 25, 2014… I am hoping that my issues with Hospice have been resolved, I got the rest of my medical supplies today and I was told they will be ordered automatically every 2 weeks from now on.
For about 9 years I have been active in the local American Cancer Society Relay For Life event. Attending a Relay For Life event is a life changing experience, especially if you attend the opening ceremony where the survivors walk the first lap, and if you stay for the luminaria ceremony when cancer survivors and those who lost their life to this disease are remembered. I was on committees for many years, and I was event co-chair for a few years. The past couple of years I was on my trips so I was not at the Relay, I did go to some in other states. The other day I was having lunch with Nona who is a friend of mine and the current event chair, and also Jessie who is our American Cancer Society staff partner. Just as I was taking a bite of my sandwich, Nona says… we want you to be the survivor speaker at Relay. After I finished chewing, I said thanks for waiting until I had my mouth full. I told Nona that I couldn’t say no to her, she said she knows. I feel honored to be able to be a survivor speaker. I did it once before, it was at our Relay kickoff several years ago. I only have to speak about 5 minutes and I’m okay with speaking in front of groups of people. I know that God will have me share whatever I am supposed to that day.
For many years, I didn’t acknowledge that I am a cancer survivor. I have had cancer several times, and I have had 3 different types of cancer. I felt that since I didn’t have to have chemo or radiation that my cancer was not as serious as others who had to do those treatments. I have had lots of operations as a result of cancer, my body was surgically altered many times from it… the only reason I didn’t have to have chemo or radiation was that my cancer was contained and did not spread out of the area it was located in. I finally realized that cancer is cancer. Whether or not I had surgery, or treatments doesn’t change the fact that I am a cancer conqueror. Not a cancer survivor… I didn’t just survive it, I did fight and so far I am still alive. Now, my life is shorter and I have a tumor, all as a result of the cancer and operations I have had over the years.
A few weeks ago my friend Sandy, who is also a local city commissioner that I worked with, told me that she nominated me for the annual award for the Soroptimist organization of which she is a member. They provide scholarships for girls to go to college, and they support local charitable organizations. Every year they select a woman that has made an impact and helped the community. She told me that she nominated me and it was voted on to give me the award. Sandy said that I helped many communities and they are proud of me. So, on April 23rd, when they present scholarships to students, they will present me with an award, I think it’s called the Woman of Distinction Award. I feel so very honored, and I was very surprised.