Our boxcar birdhouse (which we built in the early 90’s).
March 5th, 2014
When I first met Spider, he was a very good looking young man with beautiful eyes and beautiful skin and a sweet smile and gorgeous long hair. He was so cool, dressed so cool and acted so cool, and he was so masculine yet kindhearted, and so talented. I couldn’t believe that someone like him would be interested in me.
Yesterday, Spider saw the cardiologist due to his heart fluttering. The doctor said that Spider should be okay for tomorrow’s radioactive isotope procedure, but the flutter is of some concern. He said that if Spider was 65 years old or older there would be even be more concern in that he would be susceptible to stroke. The doctor then talked about blood thinners, but said that Spider can’t go on them because of the procedures, that he could have a problem with internal bleeding, however he is treating Spider with some other med. He also said he wants to look into Spider’s thyroid. This all scares me as I worry Spider’s heart condition could effect his cancer treatments.
Spider and I have been so focused on his cancer that we haven’t thought about other possible health issues, issues with just getting older. Spider has always been so healthy that it’s a shock to find out that he may have heart (and possibly thyroid) related problems. Of course, Dee Dee has heart and thyroid issues and his Uncle Chuck died of a heart attack at the age of 56, so it makes sense. Again, we’re getting older and shit happens.
Dee Dee told me that I confuse people by talking in my blog about the fact that Spider and I can’t get married here in Arizona, as if we could get married, that would solve all of our problems. It wouldn’t. As I’ve mentioned before, I’m on SSI for my mental problems (my only source of income) and I have free health care (which I need because of my diabetes and the high cost of my psych meds) and if we were able to get married and I inherited Spider’s property and money, I would lose those things. So, it is complicated. One answer would be to leave everything to a trusted friend. Then I could continue to live in our house (this one or another if we downsize) and this friend could use the money to maintain the house (if the roof needs to be repaired or a new water heater is needed, etc.) and pay the house insurance and property tax. That way, I could continue to receive my SSI and health care. As far as marriage, of course I would like it if Spider and I could get married, but it just doesn’t seem like an option. If I knew that I could inherit everything, I might consider it away, but it doesn’t seem like an option.
A guy named Jeff saw our birdhouses on the Allee Willis kitsch site (a site that celebrates all things kitsch) and wrote to us asking about our boxcar birdhouse. Seems he wants to build one for himself and he wanted us to give him the dimensions along with additional photos which we were happy to do. How cool that someone loves our boxcar birdhouse (my personal favorite) so much that he wants to build one of his own.
Spider received a pamphlet about the chemo pill he is suppose to start on in a few weeks and it was really creepy, listing all of the common side effects with warnings. According to the pamphlet, the side effects of taking Nexavar (Sorafenib) can include feeling tired, high blood pressure, possible bleeding problems (some leading to death), decreased blood flow to the heart (which could lead to a heart attack), hand and foot skin reaction (redness, pain, swelling or blisters), serious skin reactions (rashes that could be life threatening), serious mouth reactions (blistering and peeling inside the mouth), possible perforation of the bowel, possible wound healing problems, possible changes in the electrical activity of the heart, possible thyroid problems, and possible severe diarrhea. Sounds like fun, doesn’t it? Having read all these things, Spider, always positive, seems to be worried only about the hand rashes, worried that he won’t be able to play his guitar.
Well, tomorrow is the big day. Tomorrow Spider goes in to have the radioactive isotopes inserted into his liver (we are to be at the hospital at 6:30 in the morning). The procedure takes a couple of hours, but once again, after the procedure, he will have to lie flat on his back for several hours so that he doesn’t have any unwanted bleeding from his artery. This is not easy as Spider has a bad back. As far as side effects and risks that come with this procedure, they are scary, but hopefully will be at a minimum.
Also tomorrow, Marc and Cheri arrive for another visit realizing that Spider will be radioactive and can’t have any close contact with any of us. We’ll keep Spider separated from us by having him sit in our easy chair and only using the guest bathroom. Figure we’ll cooks meals and watch movies and just hang out around the house.
March 4th, 2014
As I mentioned in my blog a few days ago, I submitted a letter to the editor of our local Oro Valley paper talking about how screwed Spider and I are dealing with our finances (now that Spider has advanced cancer) while not being able to get married here in Arizona, and one response I received moved me to tears. It was from someone named Liz and she wrote –
As I read the Explorer this week I was moved and saddened by the letter from Mr. Ely. You see, I was one of the haters. I was taught that gays are an abomination to God and that they were going to hell, that they chose a lifestyle that defies nature and is not normal, therefore did not deserve common decency, respect or civility that everyone else deserved. They sure were not allowed to enjoy the benefits of “normal” people; including drunk, drug addicted, abusive or neglectful parents and married couples. This coming from a family that is filled with hate, looks for horrible things in others to point out and exploit and from a non existent father, mostly in jail my entire life and a mother that was way beyond abusive and neglectful. My entire first 18 years I was abused in every way possible, neglected, put in state care where I was abused even more. I was bullied and beat up in school every year and no one stood up for me. My wrong doing? My mother was VERY strictly protestant and would beat me in the name of religion, quoting the Bible “spare the rod, spoil the child” I contemplated suicide many times .I still have demons I deal with, I have nightmares almost every night, I have social issues, PTSD and social anxiety. The reason I am sharing this with you is because, after reading your letter, I realized that religion has been used to commit horrendous atrocities against others and no one is immune. As a gay person, you have had to deal with abuse that no one should have to ever endure; because of the person you choose to bring in to your life. Your letter brought tears to my eyes. It brought back memories I would rather forget, but most importantly, a light bulb went off and I feel so horrible for every anti gay thing I have ever said, any mistreatment I have ever inflicted (I have NEVER been physical, I was just mean) I am so sorry to you and all other gay Americans. You deserve the same respect and rights as every other American and I sincerely apologize on behalf of all the other haters, even i f they have not realized they are discriminating haters. P.S. I am a CNA and if there is ANYTHING I can do to make your partner’s and your lives easier during this tough time, as you fight for his life, I will gladly volunteer (cleaning, laundry, companion, WHATEVER). Liz
Yesterday I posted a blog expressing my fear, fear of what it is going to be like dealing with the possible side effects Spider will be enduring with the isotopes and the chemo pill, and Robin Easton (the beautiful writer) responded to me –
"Ohhhh, dear sweet Michael, I am so sorry to hear what you both are going through. I am holding you in my heart and soul, and will go to the Kiva this week to do a ceremony and prayers. There is just so much beauty and love in you both, and deep, rich courage, even when you don’t feel courageous you still are. I know this. I am with you in spirit. We are connected. It is why I recognized you as a kindred, compassionate soul right away. Take all of this one day at a time, and do all you can to take care of yourself as well. So many of us love you are sending ease, healing, strength. So much love to you and Spider. ♥ PS: Something you might do is actively bless the pills he takes, talk to them as if they were living entities as all is energy. I do this with medication I take. I rub my palms together really fast to create positive chi and then hold them over the bottle and say my intention and ask them to help me. Science now knows that doing this actually changes water molecules, as well as other substances. Everything is energy. You can even do this with Spider as well, and rub your hands together and hold them over his body. Imagine the white light of chi or Life flowing through you and going into his body and healing all that needs to heal. If the feeling in your hands gets weak, rub them together again and as you do this set the intent of total healing, believe this, trust it, know it. Breathe in light and white healing energy from the Universe and exhale through your hands into Spider’s body. You will find your own way to do this. AND it will also help you as well. I love you, dear friend.”
At our LGBT cancer support group yesterday, Spider expressed his worries about what he is going to do when his health insurance runs out in May and the others said that he needs to sign up for Obamacare by the end of this month, first for AHCCCS for which he will be denied (because his disability income is too high), but then the Obamacare exchanges will be open to him and he can get a premium health plan that should be way less than Cobra. So, that’s one more thing we need to do and we need to do it in a hurry before the deadline!
On our last released CD (in 2008), there was a track titled “Ouija Board.” I wanted the track to sound beautiful and haunting and I think we succeeded. I don’t believe in Ouija boards at all, but we have one mounted on our dining room wall as a work of art, my crazy sense of decorating. The board is from the mid 70’s and I bought it at a thrift store.
This afternoon, Spider is seeing a cardiologist to make sure his heart is okay before they proceed with the radioactive isotopes on Thursday.
March 3rd, 2014
Before Spider’s cancer, there was nothing on our dining room table but a lazy Susan and a bowl of fruit, but now our table has become like an office table, covered in paperwork. There are piles of unpaid doctor bills, paid doctor bills, consent forms, information pamphlets, test results, calendar appointments, phone numbers, addresses and directions. It’s a bit of a confusing nightmare trying to keep track of everything.
Once again, I haven’t been sleeping very well at night, back to tossing and turning. I’m so worried about what the isotopes and the chemo pill is going to do to Spider’s body. I understand that these things are a necessary evil to buy Spider time, but I hate the idea of what my partner is going to have to go through. Spider has already received his first prescription bottle of the chemo pills (which he is suppose to start a couple of weeks after the isotopes) along with an explanation of the possible side effects (which sound awful and scary), a special mouth wash to help him deal with sores in his mouth and a special hand lotion to deal with the pealing of his hands. My main worry is about him not eating enough, remembering that after his first and only chemo treatment, he lost a lot of weight from lack of appetite. Hopefully the medical marijuana will help with that.
They were very friendly at the medical marijuana dispensary here in OroValley. They allowed me to go into the back room along with Spider and what I saw was amazing, large glass containers full of marijuana buds with crazy names, marijuana laced candy suckers and tootsie rolls as well as baked goods. The woman who waited on us was very knowledgeable about all the different kinds of pot, some for anxiety, some for pain, some for sleep. I imagined that this is what it’s like in a store in Colorado where marijuana is now legal. It’s so ridiculous that pot isn’t legal everywhere. Marijuana can be so beneficial to so many people on so many levels and it’s so much better than drinking alcohol. Marijuana makes people feel relaxed and mellow whereas alcohol can make people feel sloppy and sometimes aggressive.
We went to Eva and Jeff’s house last evening for dinner. Cindy was there too. Eva fixed a delicious mushroom soup (containing six different kinds of mushrooms) along with boiled potatoes and eggs topped with a dill sauce. For desert, Spider and I brought a banana cream pie. We had a nice time chatting about this and that, but didn’t stay too late. Before we left, Cindy handed us an envelope from an anonymous donor, telling us that the donor wanted to help us but didn’t wish to be revealed. Inside the envelope was $500. How I wish we knew who the donor was, but Cindy would not tell us. Spider and I can’t believe that a person or persons would be so kind to us without revealing their identity. Of course, we will write a thank you note, but whoever you are, we can’t thank you enough. Honestly, we can’t thank you enough.
Last week was my father’s birthday. Spider and I sang Happy Birthday to him (with Spider on guitar) and we both talked to him. My dad was so supportive of Spider, so caring. Both of my parents have been very loving and are truly concerned for Spider’s health. I guess my birthday card to my dad was a couple of days late, but after it arrived, my mother wrote –
Dad did receive your birthday card. A beautiful card with a lovely message. Thank you and Jim (Spider) for remembering him on this special day. I read your blogs and I hope these messages from friends will continue years into the future. I know they bring both of you comfort and support. We will continue to hope that Jim has yet many years ahead. In the meantime be prepared for the future and make each day count. Love Mom
My niece Deanna (daughter of my sister) had her first baby, a boy. Guess that makes me a great uncle. Damn, I’m getting old!
I’ve tried reaching out to my brother twice through my mother, once just before we found out about Spider’s cancer and once shortly after, but to no avail. My brother and I don’t see eye to eye on just about everything. He’s a conservative and I’m progressive. He votes for Republicans and I’m a diehard Democrat. He collects guns and I think guns should be banned. He thinks I’m too obsessed with being gay and I think he isn’t understanding enough that I’m gay. I could go on and on about our differences. Anyway, last year we had a big blowout and now we’re not talking at all, but I wanted him to know that I have no hard feelings. I don’t think we can ever be close, but I have no hard feelings.
My brother once said to me that he thinks I hate straight people. That’s funny and far from the truth. Of course we have gay friends, but the fact is the majority of our friends happen to be straight.