My Life On Parade
Shoes

September 29th, 2014

Sometimes well-meaning friends and people tell me that I need to think less of myself and focus only on Spider, that he is the one who is dying and how I need to make life good for him, that I need to be strong and the two of us should just be relaxing and enjoying life and living in the moment, but that is easy for them to say. Of course, I focus on Spider and of course I’m trying to do everything I can to make our lives happy and fulfilling with the time we have (how ever long that is). The truth is that about 90% of the time, all I do is think of Spider. Spider is my partner and my lover and my man. He means everything to me, however it isn’t always easy to go through what we are going through and put a happy face on things. God knows I try, and most of the time I do a pretty damn good job of it , but I am only human and sometimes the stress is too much for me and sometimes it can be very difficult to keep all the stress buried inside. When I think of everything we have been through since last November, I’m actually amazed that I haven’t just started screaming like a madman or crying uncontrollably, but I don’t. I just keep pushing all the shit to the back of my mind, holding all the stress in my gut. Yes, Spider is still here and we still have each other and we’re living in the moment, but sometimes, often the moment is not pleasant. Sometimes the moment is like a nightmare that I can’t get out of. The stress of knowing that Spider has terminal cancer, the stress of all the doctor appointments and trying to keep track of all the different doctors, the stress of all the misinformation we’ve had to deal with (like doctors telling us that Spider could get a transplant when that wasn’t the truth), the stress of thinking about all the tumors growing inside of Spider, the stress of the hideous and painful procedures that Spider has had to undergo, the stress of Spider being in pain or vomiting uncontrollably and feeling helpless to help ease his discomfort, the stress of juggling endless doctor bills and worrying about money, the stress of having to complete mountains and mountains of stupid paperwork just so Spider can be on disability (paperwork that is still not entirely complete because it still keeps coming), the stress of having to figure out all of our finances because the state of Arizona does not recognize us as a legal couple, the stress of having to transfer everything over into my name, the stress of having to downsize and move into a new place while under the gun, the stress of the actual moving, the stress of trying to quickly fix and repair things in the new house so it is liveable, the stress of having to sell off two-thirds of our possessions and treasures at a great loss, the stress of trying to get the old house up for sale (a house that has some major issues), the stress of watching Spider lose weight and turn into a skeleton, the stress of realizing that Spider can no longer take long walks with me and Frappy like we used to, the stress of Spider having chemo brain (and how sometimes he can’t focus on things clearly), the stress of laying in bed at night unable to sleep while listening to Spider moan in his sleep, the stress of trying to be there not only for Spider, but also for our friends and their lives and their problems, the stress of wanting to phone friends and dump and cry on their shoulders constantly but not wanting to come off like a drama queen or a Debbie downer, the stress of Spider’s sister turning against us because she doesn’t like what I write in this blog, the stress of having to quickly learn how to maintain a house and car on my own, the stress not knowing how much time that Spider and I have left together, the stress of trying to not let Spider see how freaked out I am, the stress of knowing how worried Spider is about me, the stress of watching Spider slip away from me little by little in little ways, the stress of wondering how I’m going to live in a world without my partner of the last nearly 43 years, all of this stress on top of more stress, and I hold most of it inside on a daily basis. Like I said, I am being strong, as strong as I possibly can be considering I’m not the most stable person to begin with, but sometimes it is all just too much for me. How I wish that Spider and I could truly relax and enjoy live to the fullest. We keep trying and maybe we will get there, but right now it isn’t as easy as people suggest. Forgive me if I sound like I am feeling sorry for myself, but try to be in my shoes for just one day.   

Kevin, Jessica (holding London), Spider and Cindy, September, 2014

Kevin, Jessica (holding London), Spider and Cindy, September, 2014

People

September 25th, 2014

So, Spider met with both Dr. Patel and Dr. Devis early last week. Dr. Devis was pleased with the procedure she performed and said she hit the tumor with the radioactive isotopes spot on, and Dr. Label increased Spider’s chemo pill dosage from half to three-quarters dose. Since then, with the dose increase, Spider has been a little under the weather. He threw-up really bad on the first night and now he has bouts of nausea on and off throughout the day. He also feels a stabbing pain on the side of his liver. He left a note with one of Dr. Patel’s nurses at the cancer center several days ago about the pain and nausea, but neither Dr. Patel nor one of his people has never gotten back. Of course, this pisses me off.

We got to know our neighbor Carlos a little better a few days ago. He stopped by and hung out with us for a couple of hours. Carlos is 30 years old and grew up here in Southern Arizona and he’s a real great guy, and as I think I mentioned before, he is very attractive. In fact, I think he could be a model. I’m glad we are getting to know our neighbors. It makes me feel like we live in a nice complex.

Ryan H. came by last Saturday evening to jam on guitar with Spider. After, I fixed us dinner and then we watched “Pink Flamingos” starring Divine. Ryan is only 22 years old and had never heard of the movie. Not sure if he liked it or not. The thing is, I forgot just how truly gross that movie is. Hard to believe they got away with half the things they did in that movie back in 1972.

On Sunday afternoon, Jessica along with her new boyfriend Kevin and little London drove down from Phoenix to visit us. Cindy came over and joined us for lunch. It was great to see Jessica and Kevin is a very talkative and nice guy (a good-looking guitar player) and little London was a doll. They said they may return this Saturday for our estate sale.

On Tuesday evening we went to the Loft theater with Cindy to see the new documentary about the David Bowie exhibition that is traveling around the globe (now in Chicago). Robert S. was there, so we sat with him. The documentary (David Bowie Is) was interesting featuring a look at all things to do with Bowie’s career from his costumes to his hand-written song lyrics, and although, as a Bowie fan, I found it very interesting, I almost felt like I could have produced a better documentary. I think it could have been more edgy and Bowie-esque. The museum narrators were a bit dull and the people who spoke about Bowie sort of missed the mark in my opinion.

All this week, Spider and I have been going up to our old house and sorting through things for our upcoming estate sale on Saturday. It is unbelievable to me just how much stuff that Spider and I have acquired over the years, so much stuff and so many memories. I practically feel like we were hoarders! I put up an ad on Craig’s list explaining our situation about Spider’s cancer and how we have downsized and are trying to sell off the rest of our treasures (everything from cool retro furniture to desert oil paintings to vintage Western gear to one-of-a-kind lamps to metal art pieces to Fiestaware to vintage tiki mugs to Indian rugs to brass deity statues to vintage toys and so much, much more) in order to help pay for a nice trip somewhere for the two of us, plus Linda D. was kind enough to put up flyers for us where she works, and just by the response so far, I think there are going to be a lot of people there. In fact, while we were over at the house yesterday, several people showed up at our door asking for an early look and so we let them in and that was a big mistake. The first couple that came in started off being very nice telling us that the wife is a cancer survivor and going on and on about her battle with the cancer (going on and on too much considering she is a survivor and Spider’s cancer is terminal), but then they quickly got nasty and rude and started haggling with us over the price of every little thing even though we were giving them killer prices. It really upset me and they weren’t the only ones. Others followed and it was the same thing, nasty and rude people wanting to haggle and bitch about the prices like they were at some cheap garage sale. I felt like they were all vultures. By the time we got home last evening, I was so stressed and freaked out over these people that I literally became sick. I just couldn’t believe how ugly some people can be and I think that months and months of worry and stress over Spider and lack of sleep on my part (at least one or two nights a week I don’t even sleep, I just lay awake until morning and then get back up to start the new day) combined with these ugly people left me feeling vulnerable and unable to cope. I talked with both Cindy and Cheri Z. by phone and told them what happened and both of them were supportive and had suggestions (like putting fixed prices on things), but unfortunately nothing they said really helped me and as the night went on, I just started flipping out. The thing is, I am not comfortable dealing with strangers to begin with and these people were awful to us. Cindy said that I shouldn’t have mentioned Spider’s cancer in my ad as it just makes people want to take advantage of us (like sharks that smell blood in the water) and I guess she is right. Anyway, this afternoon I still feel sick and freaked out and as of right now I don’t know how I’m going to deal with all the expected people on Saturday. I already feel overwhelmed and majorly fucked up in my head. Robert S. and neighborhood John are suppose to be there to help us, but I honestly don’t know how or if I can deal with the all of the people. I hate to put it all off on poor Spider, but, again, I feel sick and don’t think I can cope. It’s like my mental illness is in full gear and I’m having one panic attack after another.

MICHAEL AND SPIDER - ALADDIN SANE
144 plays

Michael and Spider version of David Bowie’s song “Aladdin Sane” (edited short version), 2010

Me and Spider, 1977

Me and Spider, 1977

Me and Spider enjoying some secret Jacuzzi time, September, 2014

Me and Spider enjoying some secret Jacuzzi time, September, 2014

Ken, happy to receive the Jackalope we sent to him, September, 2014

Ken, happy to receive the Jackalope we sent to him, September, 2014

Heavenly

September 10th, 2014

Cheri Z. phoned the other evening to check in on us. She asked how we were doing and I told her that everything was nearly heavenly right now. Spider is feeling better and better since his last procedure and he’s eating regular (he ate five ice cream bars after dinner the other night). In fact, he has already put back on eight pounds and he’s starting to get his color back. The fact that Spider is doing so good gives me hope. As I’ve said before, I don’t know how long we have together (maybe months, maybe years), but Spider is remarkable in his attitude and strength and I think he just might be around for a lot longer than we thought in the beginning of this whole cancer thing. No matter, it’s always the here and now that counts. All we have is the present and we’re making the best of it.

I feel sort of bad that Spider and I haven’t been spending much time with most of our friends, but we are still working on projects around our new home and still fixing up our old house in order to put it up on the market. The rest of the time, we’ve just been relaxing and enjoying each other’s company, just the two of us. I hope our friends understand, but right now we need some one on one alone time.

We continue to sneak (like quiet ninjas) into our community pool and Jacuzzi late at night for a swim and a soak. It’s just so nice being alone, a chance for us to totally be ourselves. We’re like a couple of big kids.

Spider played the cancer card last Saturday…..We have been getting hit with some heavy monsoons this year (the other day it was raining so hard that it felt like our roof was going to collapse) and when the rain water drains off of the back of our roof, it floods our back patio area, so we need to put up a rain gutter. The problem was that we couldn’t fit a nine foot rain gutter into the back of our car, so we asked Robert S. if he would let us use his truck. Robert dove with me in the front seat and Spider and Frappy wrote in the bed  (Frappy’s first ride in the back of a truck). When we got to Home Depot, Spider put Frappy in a cart and as we entered the store an employee stopped Spider and said “I’m sorry, sir, but you can’t bring a dog into the store. It’s against our rules.” Spider replied “Look, I have terminal liver cancer and if I want to bring my dog into the store, I will. He goes everywhere with me.” The employee immediately backed down and said “That’s fine, sir. I just needed to inform you of our rules, but that is fine, sir.” And so we walked right in.

We’re planning to have our estate sale the last weekend of this month and we have lots of cool things that we didn’t have room for in our new place and hopefully we can sell most of it. We have given some stuff away to friends such as Marc and Cheri took our rod iron Moroccan lamp, and Robert S. wants our coyote and javelina heads, and Terry and Rex want our pink and gold pilsner glasses, and we sent our jackolope head to Ken (husband of Karen S.) in New York. Karen said that Ken was smiling ear to ear when he received it. I’m trying not to have any dead animal things in our new place, so, with the exception of an old cow skull and some old antlers, we are getting rid of all of our taxidermy pieces and the cow hide rug and cow hide lamp shade and anything else made of leather.

Spider continues to play his Angry Birds game. It really is an obsession with him. I mean, you should see his face when he is playing, all happy and involved. I mean, he really gets into it and he can sit and play it for hours if I let him. Last week, he even took it out and started to play it in our car at which point I put my foot down and said “You’re not going to play that game in our car instead of talking to me while I drive.” Then it happened….the other day Spider got up and started to play his Angry Birds and discovered that all of his acquired points (I think he calls them diamonds) were missing as well as all his magic doors (or something like that) and he totally freaked out. I told him “Jesus, Babe, it’s just a game. Why can’t you just build up your points again?” Spider replied “You don’t understand. It’s taken me months to get where I am now and it’s all lost.” Again, I said “Honey, it’s just a silly game. You need to get over it” but I swear, Spider looked like he was going to cry and for the entire day he looked frustrated and sad. Thank god, the following day all of his points magically reappeared and Spider was happy once more!

Jacuzzi

September 3rd, 2014

Late last night, Spider and I walked Frappy to the grassy area next to the community pool as we always do for his last potty before we go to bed, and we noticed that the gate to to the pool was not chained shut (normally the pool is locked up with a chain at 9:00 pm). Spider said “Do you wanna go for a discreet swim? Nobody will know if we are quiet.” Knowing that I’m weird about breaking the rules, I’m sure that Spider thought I would decline, but I surprised him by saying “Okay, if we are quiet, I’m up for it.” So, we brought Frappy back to the house, put on our bathing suits, grabbed a couple of towels and off we went for a midnight swim. We opened the gate and slipped in.. First we got into the jacuzzi. Spider turned on the power jets and we soaked for about twenty minutes. It was so nice and relaxing, sitting under the stars on a gorgeous night, just the two of us together while all the other residents were fast asleep. Spider was as happy as a little kid. He couldn’t stop smiling. He put his arms around me and said “I can’t believe you agreed to do this. I love you so much.” His arms felt so thin, and yet I could feel the same strength, that same secure feeling I always feel when he puts his arms around me. Then we decided to go for a dip in the pool and swim a few laps. While swimming I noticed a few June bugs floating around in the water and I carefully lifted them out of the pool so they wouldn’t drown. Spider saw me doing this and said “That’s why I love you because you’re so caring. No one else would bother to save those bugs.” He’s right, no one else would probably fuss over those bugs, but I felt sorry for them. After our swim, we returned to the jacuzzi and soaked for another ten minutes before drying off and heading back home. As we were walking back, Spider said to me “Thank you so much for sneaking into the pool with me. You really surprised me by agreeing to do that. This was one of the nicest things we’ve done in a while.”

With each day, Spider is getting better and better. With each day, the burning in his abdomen is decreasing. He is still a bit spaced out, but he is definitely recovering from the isotope procedure. Let’s just hope that the isotopes are doing their job and shrinking Spider’s tumor. When we first found out about the cancer, Spider told me “Don’t worry. I’m gonna live a long time. I’m not going to leave you any time soon.” Of course, back then, I was terrified that Spider may only have a few months to live, but he didn’t seem afraid at all. “I’m gonna live a long time” he told me. “You’ll see.” Now I’m starting to believe Spider as he already seems to be defying the odds. I have to believe him.

On Labor day, Cindy and Ryan H. came over for dinner. I asked Spider if that was okay and he said that he would enjoy the company as long as we kept it low-key. He and Ryan jammed on guitars for about an hour while Cindy and I sat in our Arizona room and chatted. Then we had dinner (I fixed us a vegetable stir fry) and after dinner we watched the movie “Hard Days Night.” I hadn’t seen the movie since I was a kid and I was reminded how innocent we were back in those days. Back then (in the mid-sixties), I thought that the Beatles were super rebellious and edgy with their long hair and flippant personalities, but in watching the movie now, I realized that they were fairly tame. Don’t get me wrong, the Beatles were definitely cutting edge for their time, but looking back, I realize just how innocent the rock ‘n’ roll scene was and how innocent we (the followers) were, however within a few years the sexual revolution would take hold and drug usage became the norm and that innocence would be gone forever. I mean, we went from “I Wanna Hold Your Hand” to “Why Don’t We Do It In The Road.”

Polly S. (our neighbor who spends her summers in Maine) wrote and suggested that Spider should try juicing and that he should consume micro greens to help fight his cancer. I wrote back to thank her, but explained that Spider doesn’t believe in special diets or alternative treatments for the cancer. Of course, Spider does recognize the importance of diet in one’s health (and we do eat a healthy vegetarian diet), but at the same time, he doesn’t believe that there are any foods that can actually cure the cancer at this stage, and he just wants to eat and enjoy a normal, balanced diet. I told Polly that maybe she can talk to Spider about micro greens when she gets back to Tucson (in mid-October) and maybe change his mind, but I wouldn’t count on it. Spider can be very stubborn. Anyway, I’m looking forward to getting to know Polly better when she returns. We only talked to her briefly a couple of times before she left, but I have a feeling she is going to become a good friend.

We had planned to have an estate sale at our old house next weekend to get rid of all the stuff we didn’t bring to the townhouse, but due to Spider’s procedure, we have put if off to the last weekend in September. Our old house is really hanging over us and we need to get it fixed up (re-coat the tile floors, clean the upstairs carpet, re-coat the rooftop, paint some walls, trim some plants, etc.) and get it up for sale as soon as possible as right now we are paying to maintain two houses! The problem is that Spider isn’t 100% right now and it’s a lot of work for us to do, but I’m sure we’ll manage. We have to.

Pain

August 31st, 2014

Spider was scheduled for his isotope procedure early Thursday morning, but two emergencies came in and were taken before him so his procedure did not take place until the afternoon. They used Versed on him during the procedure and they must have used a lot cause this time, unlike the last time, Spider isn’t clear on the procedure or how long it lasted. Then, after the procedure, he was kept for several hours so the nurses could watch over him to make sure there were no complications such as internal bleeding. While waiting to be released, Spider played Angry Birds (what else?) and he said that they served him a late lunch which was fantastic. Last time they served him a couple of pieces of stale bread with a thin cheese slice, but this time Spider said it was a wonderful platter of fresh fruit, hard boiled eggs and cottage cheese.

I picked up Spider at 5:00 in the evening. He was waiting outside in front of the hospital and he was not in any real pain, just a little sore from the incision. On the way home we stopped at Albertson’s to fill his prescriptions and pick up some milk and ice cream. Because they gave Spider some steroids before leaving the hospital, he was feeling quite perky, but he was still a little spaced out and dopey so a lot of what he said didn’t quite make sense. He was sort of acting like a big kid, sort of funny and cute. The only fucked part was that Spider’s insurance company wouldn’t pay for his pain pills. Because Spider takes pain meds for his bad back, his insurance company wouldn’t pay for extra (even though he just had a serious procedure) and so we had to buy some out of pocket at a cost of $300! When we got home, Spider went to bed and slept for a few hours, then he got back up and I gave him his meds and we watched some TV. I was worried that he was going to start vomiting or have fevers and chills (like the last time), but that didn’t happen and for the most part, he seemed pretty okay. He was able to eat some soup and then we both went to bed and slept ten hours (I think we were both exhausted).

The difficult part in bedtime is Frappy. Because Spider has fresh radioactive beads inserted into him, he is somewhat radioactive and Dr. Devis said that for a few days, Spider needs to avoid close contact with others especially with children and small pets, and so we have to build a wall of pillows in bed to separate him from Frappy and me. The problem is that Frappy loves to sleep right next to Spider, often in his arms, and there is no way to explain to a dog that he can’t do that because his sleeping buddy is radioactive! And we can’t put Frappy in another room for the night because he would totally freak out and endlessly bark, so it’s like a mini battle trying to get Frappy to sleep on my side of the pillow wall!

On Friday morning when we got up, Spider was in a lot of pain. He said it felt like he had a really bad ulcer, but after he took his anti-nausea and pain pills plus his steroid pills, and drank some milk, he felt somewhat better and we just spent the day relaxing, Spider occasionally laying down. In the evening, Robert S. came by and hung out with us. We had some dinner, listened to music and watched part of a Rolling Stones concert on TV and then Spider went to bed early.

Yesterday morning when Spider got up the pain in his abdomen was extreme. Spider is a strong guy and a trooper, but I could tell that he was really hurting and it freaked me out a bit. He was holding his stomach and there were tears in his eyes. He said it felt like an atomic bomb exploded in his abdomen. Once again, his pills helped to ease the pain, but not as much as the day before. In fact, Spider spent most of the day lying back in our easy chair and watching the clock, waiting for his next round of pills. I felt so bad for him, feeling helpless that I couldn’t make the pain go away. In the evening, Spider said he was feeling a little bit better so we took a drive up to our old house to pick up mail, but on the way back home, Spider’s pain returned with a vengeance. Even though the pain was bad, he was able to eat a little dinner when we got home without getting sick to his stomach and that was a good thing.

Today is Sunday and I’ve had very little sleep last night as Spider was moaning in his sleep off and on throughout the night and it worried me. He is still asleep now and, of course, I’ll let him sleep all day if that’s what he needs. Again, I hate seeing Spider in such pain, but I am grateful that things are not worse and I’m glad that he is able to eat (as he can’t afford to lose any more weight). I know that in another day or two, the pain will begin to ease and he will start to feel okay. I just hope that those isotopes are doing their job and attacking and shrinking Spider’s tumor on that side of his liver. If we can keep the cancer at bay, the hope is that Spider can live a few more years. There are no guarantees in any of this, but if anyone can beat the odds, it’s my Spiderman.