My friend Mary Lou came to visit recently. She showed me some pictures she took in her yard the other day of a very unusual spider and the web it spun. Neither of us has ever seen this spider before, nor the type of spider web she created. Mary Lou looked up this spider and found out that it’s a Spiny Backed Orb Weaver. It’s bite is not known to cause serious reactions to humans, which is a good thing. It almost looks like the web is heart shaped. We don’t remember ever seeing a web that has such a visible, wide web. The spider must have taken a long time weaving it.
My friend Albert Gray Eagle sent this picture he took during a recent ice storm in Oklahoma City where he lives. When I lived in other parts of the country where it gets cold, I saw this type of scene frequently. I have to tell you, there are things I don’t like about living down in south Florida, such as the heavy traffic and closeness of houses, and the fact that there is hardly any open space. I do like the fact that in the winter when other parts of the country are having ice storms, blizzards, heavy snowfalls, and really cold temperatures, that in south Florida we are still having temperatures in the 70s and 80s. I can wear sandals, short sleeve shirts, and no jacket. I know… some of you wish you were here in the warmer weather, come on down and visit. I have friends in many states, such as Ohio, Montana, Texas, Oklahoma, Washington state, Massachusetts, and Rhode Island. We keep each other updated on the events happening in our lives and also the weather. I sure do not miss driving in the ice and snow. It’s not fun to drive in it, or to clean it off of our vehicles.
I went to the store the other day and stocked up on frosted mini shredded wheat cereal, mini marshmallows, and dum dum lollypops so whenever I’m able to get to Arnold’s Wildlife Rehabilitation Center I’m prepared with treats for the animals. I bought 2 bags of 360 lollypops in each bag. That should last for quite a while.
You may have read in a previous story that one of the book series that I enjoyed the most is the Sisterhood Series, by Fern Michaels. On December 30th, the 22nd book in this series was released and I bought it using my Nook, I didn’t want to wait until it was purchased by the library. As with the rest of this series, this story was interesting, and in addition to the previous characters, a few new ones were introduced. If you like to read, I would suggest reading this series. Start from the first book which lays the groundwork for the other books. It’s best to read them in order. Even though each book could stand alone, by reading the series in order you will find that each book builds on the previous one, the character interaction evolves, and the stories get more interesting. This series has humor, drama, comedy, romance, suspense, mystery, and lots more… I think everyone would enjoy it, especially after several of the books are read and you are wanting to find out the next caper. Do they get caught… ??? It’s not just a book series for women. There are strong male characters such as an assistant district attorney, FBI personnel, martial arts instructors, newspaper reporters, etc. See how they get involved in the capers of the women… you will be very surprised.
Another one of my favorite authors is Debbie Macomber. She also has several book series, including Cedar Cove Series which the Hallmark Movie Channel made into a television series which aired last year. I don’t have cable television so I was unable to watch it. I had the honor of meeting Debbie, and her staff members Renate and Heidi, in July 2011 when I was in Washington state. Click here to read about my visit in Port Orchard, Washington where they live. I’ve read most of Debbie’s books. I think the only ones I haven’t read are from the past 2 years. Debbie is such a wonderful and popular author. Whenever I go to the library to check out her newest books there is always a long list of people waiting to read them. Debbie graciously autographed one of her books that I had with me. Debbie, Renate, and Heidi were so friendly and kind. I’m glad that they were in the office when I was in their area.
For my birthday in 2011, my friends Helen and Pat gave me a Nook as a present. It was a big surprise. They know that I like to read, and that when I was traveling I had bags of books in my camper van. I would stop at libraries, campgrounds, etc. and get new books, and exchange the books I read for other ones. So, when I got to Texas in mid-October and saw Helen and Pat, they gave me a birthday present, when I opened it, I found a Nook. I didn’t expect them to give me a gift, and especially a Nook. At first, I didn’t think I would like using it. I like the feel of having a book to hold, something I could read and put down, and pick up and start where I left off. I found that even though once in a while I listened to books on CDs, that I really don’t care for it. If I had to turn off the CD player, it would not always start where I left off, then I had to find my place again, and if I wanted to hear a portion that I missed when my mind wandered, I couldn’t just go back and listen to it.
Over the past couple of years, I have found out that even though I prefer paper books to the Nook, I do like the Nook and I use it often. When I was traveling, I could go online to the county website and download books. It sure saved a lot of space in my camper van. I still use it and find it very handy. It was great to be able to get a new book like the Sisterhood series newest release the day after it was released. Also, as I pick up books at library book sales, the library, thrift stores, etc. I get involved in a book series and almost always there is a book or several books in that series. It’s rare to find all the books in a series in the various places I look for them, other than the library bookshelf as a loan. I can go online to the county website and hopefully they have it available for me to borrow as a download. I got a county library card before I left home and I am able to access their website from anywhere, as long as there is Internet access.
For instance, at this time, I am reading The Lakeshore Chronicles Series by Susan Wiggs. It has 10 books in the series. I got the first 2 at a library book sale, a couple at a thrift store, and I was missing the 3rd book. I got it online and put it on my computer, and transferred it to my Nook. I have the paperback for the next 3 books. Then I will have to go to the library and borrow the next few books to complete the series, unless they become available electronically. The Lakeshore Chronicles Series takes place in a small town in New York. One of the characters owns a bakery and several of the books in this series contain recipes of cookies and other desserts. They sound so good… I may try a few of them.
On the average, I read a book in a day, sometimes it takes me 2 days. So, when I’m able to read, I can read 5 or 6 books a week. I bought lots of paperbacks at the local library book sale. I have about 20 paperbacks waiting to be read. When I’m finished with books, I pass them on to friends or give them back to the library for their next book sale. The money is used to buy more books for the library shelves.
Want to laugh… watch this video on Utube. The Madray Springs Volunteer Fire Department in southeast Georgia made this video last summer and submitted it to a company that had a contest to win 10 pairs of boots. This was a nationwide contest and Madray Springs VFD won the boots, which they received in the fall. Patty, one of their firefighters, is the lady that is pretending that her cat is in the tree. This was filmed behind their fire station. Chief Ashley Dent is the driver of their very old fire truck. They are hoping the county is going to buy them a new or used truck soon. They really need it. I’ve watched this video often, and I always laugh. Madray Springs VFD is one of the departments that I adopted and keep in touch with. Chief Dent has become a great friend. It was his idea in July 2013 that they come to visit me. You can read more about our visit in the July 2013 stories.
As for a health update, I’m having to take more pain medicine for comfort. This makes me more tired so I’m finding that occasionally I take one or two naps a day. Usually one early in the day, and one late afternoon. Almost every day I am awake until 2 a.m. I like watching Jay Leno and Jimmy Fallon. My energy level is a bit less than it was. I still make myself get out almost every day. I can still drive, do grocery shopping, cook, etc. I’m not eating as much food, I still make myself eat a few times a day, with snacks several times a day. I’ve stocked up on mint chip ice cream and chocolate candy. My pain is less in the mornings so that’s when I get out and do errands. Early afternoon and evenings are more painful, so that’s when I take more medicine and lay down to rest and read if I don’t have a bad headache.
Dr. Borrows examined me on Wednesday, January 8th. She confirmed what I already know. My tumor is larger and pressing more on my organs which is causing the increased pain I am experiencing. Also, my abdominal area is harder and the area of hardness is larger than it was during my last visit. I could tell by the expression on her face during the exam that it’s not good. I’m pretty in tune to my body so I knew it’s been getting progressively getting worse and more serious by the changes I’ve been feeling and seeing. My abdomen and chest area is protruding more than it was and I can feel the pressure on my organs. Dr. Borrows noticed a bruise on my skin in this area and I don’t remember doing anything that would cause it. Perhaps the bruise is coming through from the inside??? Is it possible? I have no idea and didn’t ask. I continually feel bruised on the inside, it’s from everything pressing against each other. We have been discussing Hospice care for me for almost a year. I kept saying I wasn’t ready yet. I’m still not, but we discussed how it would be helpful for me now as my condition is progressing and getting worse. So, I told her I would agree to it, especially for the convenience of getting my pain medicine.
Dr. Borrows said that my heart and lungs sound good. I’ve been having back pain, so she had my urine checked to see if anything was wrong, and the results showed nothing unusual. That’s a good thing. I’ve been using eye drops for my dry eyes, this is caused in part from the medicine. As we all age, our bodies change and we adapt. Health challenges and conditions often accelerate how we change and adapt. What changes we can make to still live as full of a life as we can. Often, each day is different. Still, live each day to the fullest, whatever that means on that particular day. Even having a cold or pulled muscle can change how we feel or what we do any given day. After having a stuffy nose for a few days, when it clears up, do you take breathing for granted again??? How about having a painful cut on your thumb or a finger that you use a lot… after it heals… do you take using it again without pain for granted?
I chose VITAS Hospice care because this way Dr. Borrows can continue to be my primary doctor. This is really important to me because we have a good relationship. I respect and trust her. We have the same philosophy on my care and what care I want and don’t want as the tumor continues to grow and cause complications. We both agree that comfort level is the primary concern, keeping me pain free is the primary goal. Eating is secondary.
I started Hospice care on Wednesday, January 8th. The primary reason is to be able to get my pain medicine and keep the pain under control. Without Hospice providing my pain medicine, there was only 1 pharmacy that carries the type I need. For the past several months, almost a year, I had to go to the doctor and get the prescription, then drive to the pharmacy, and hope they had it in stock. (It’s about 36 miles round trip, and they don’t always have it.) Then wait about an hour for it to be filled. I would have to do this every 2 or 3 weeks, which is what I was doing for most of the past year. Now, with it getting more difficult to get out and about, and my dosage increasing, my doctor recommended going into Hospice and letting them get my medicine and medical supplies. They can also monitor my health condition and if something arises like not being able to get pain under control, or having trouble breathing, etc. there will be someone available 24 hours a day to visit me and provide me with what’s needed for my comfort.
The VITAS chaplin, doctor, and a social worker came to see me today. I told them about my medical history, my website, and I showed them my door poster. They liked my door poster and said that I am one of the few people they visit that has their paperwork in order and knows what they want as their health deteriorates and continues until death. Like other people that have visited with me during the past six or so months, they were surprised to find a terminally ill person (me) who has a positive attitude and still living life to the fullest, rather than sitting around waiting to die. I asked the doctor if he can authorize massages for me, and he said he would. The social worker said she will contact the proper people and arrange it for me. I know massages help since I have had them many times in the past. I’m hoping it will help to relieve some of the numbness and pain.
At this time, I only need minimal followup since I’m still able to take care of myself and get around. When the time comes that I can’t do things for myself or be left alone for long periods of time, I have several friends and my mom who said they will be here to help and to stay for hours or overnight when needed. I am going to write a list of these friends and their phone numbers and give it to my mom and also post it on my refrigerator. Hospice will only provide round the clock nurses when it’s closer to the end. Those of you who know me, know that I have put off signing up for Hospice because I cherish my independence and freedom. I’m not happy about doing this now, but it’s getting to be easier for me and it’s time to do it.
The downside of Hospice is that they send a nurse and others at least once a week to check on me, to determine if I need more medicine or anything else. They seem to want to call and come on the same day, not letting me know in advance, so I’m going to talk with them about it. I am used to doing what I want, and going where I want, anytime I want. Like yesterday the nurse came and she said she would call and come visit next week. I asked what day and she said she didn’t know yet. I asked if we could set a day so I would know. She asked me to pick a day so I said Thursday. She cannot provide a time for the visit. Now, if I want to go somewhere on the spur of the moment, or plan in advance for an outing, on Thursday, I would have to call Hospice and see if they can reschedule. They have to check on me once every week, possibly 2 weeks if I get approval. I want to go to a Native American event on the west coast of Florida the end of January, and if I’m up to it stay out for a week or two camping. Now, I have to let Hospice know, and they have to see if they have an office near where I am going that can follow up with me. If not, they will have to let me know what happens if they don’t. Perhaps, I would only be able to be gone a few days. I guess I’ll find out soon.
I know change happens, and I will adapt. There is a tradeoff. I had to figure out what was the best for me at this time. I’m guessing that having Hospice in place now is going to be a good thing. Also, when it’s needed, which will be happening sometime in the future, it’s already in place. The peace of mind I’m going to be having because my pain medicine will be delivered to me, rather than me having to go get it, is a big help, and it gives me peace of mind knowing it’s being taken care of for me and that I won’t run out of it.
Gratitude is important, keeping an attitude of gratitude is one of the mottos and guidelines I live by. I’m grateful that I have the ability for Hospice to take care of me. The people I have been in contact with through VITAS all seem very caring and want to do what they can to make sure I’m comfortable and that I have what I need to remain this way. I’m having to remind myself not to be frustrated with my limitations, both time wise and physically. I’ve already lived about 6 months longer than predicted. Life’s been an interesting journey… lots of extraordinary, spectacular, interesting, challenging, and awesome experiences. I am so very blessed and loved.
My friend Maggie just sent me an email message, in closing she wrote: “Keep sharing your insights and “adventures”, though they are not as far and wide geographically, they are as deep and real and far reaching as ever. Like beams of light that travel forever.” After spending several hours together the other day, reading the books that made us laugh and doing puzzles, my friend Mary Lou wrote that our visit was a “refill” of cheer. My friend Jennifer sent an email and included a quote and phrase she likes, I don’t know the authors: “Sometimes we think that there are obstacles in our path: but the obstacles ARE the path.” “Our lives ARE happening each and every day. Every moment. The mundane, regular things, they’re a part of life! They’re a part of life, just as much as the big, fun, uncommon events are also part of life.”
Thanks to all of you for your kind words, your encouragement, support, love, friendship, and sharing your life and story with me and others. We all inspire each other. That’s about it for now.
PS: January 16, 2014, Update… I have been in Hospice care for a week now. It’s been working okay. I started taking the long acting pain pills twice a day and it’s helping with the pain. I’m guessing since it’s time release it keeps medicine in my bloodstream all the time. I have not had to take as much liquid pain medicine as before I started the pills. Also, I don’t get the spikes in levels of pain very often. I do feel a bit more sleepy, I even fall asleep sometimes reading a book. I still do have headaches, I think it’s a very slight decline in how often, but not very much different.
Also, I asked the Hospice nurse when she visited today about me going away for a week or 10 days. She said they have to check me once during a week, it doesn’t have to be the same day every week. So, if I feel up to it the middle of next week, I am going to drive my camper over to the west coast of Florida near Sarasota to a Native American event, then stay in area for a few days afterward. I just need to be home by the following Thursday so Hospice can come on Friday. So, in all, I will be gone about a week. Sounds great to me.
