Tattoos

This post is brought to you by a discussion that occurred on Facebook amongst some of my friends. The question posed on one of my friend's status updates was "Do you have any tattoos, if so, what and where?".

I got my first tattoo when I was 22. She is a unicorn's head on my left shoulder. At this point she is really faded and at the very least, could use a color touch up, but things like bills and food tend to take precedence over tattoos. Responsibility. Bleh.

We are going to go back in the wayback machine and revisit my radiation treatment era for the next ten tattoos. I have ten India Ink dots tattooed on my chest, abdomen, shoulders, and back. These tattoos were done for two reasons, first being the necessity of properly aligning the lead blocks that protected my lungs, heart, and thyroid from excess radiation while they were blasting the shit out of the tumors in my lymph system. The second reason for the tattoos is they are a physical record of me having had radiation treatments and are there to tell medical professionals and practitioners that I have undergone radiation, when and if I can't tell them myself. This protects me from unnecessary exposure to x-rays and other radiation.

Yes, I have had x-rays, CT scans and other nuclear medicine diagnostics since 1987, sometimes they are necessary. They do try to protect me from unnecessary exposure, as I have had quite a dose of radiation way back then.

I remember when they first placed the dots, and all the times that they drew the gridmarks on me in permanent marker. This part of the post is probably going to be a little "squicky". I got really ookey vibes (as in "sexual predator") from one of the radiation therapy techs when I first started to have my treatments. It was not anything I could really wrap my hands around, but more of a gut feeling. My sense was, during the "drawing days" (the days they drew all the gridmarks all over my chest and back), that he was deriving some sort of sick pleasure from drawing all this stuff on my body. It was really humiliating. What made it worse was being told by the radiologist not to wash any of it off for two or three days at a time, because they were trying to make sure everything was lining up properly. I wore a lot of turtlenecks and high necked t-shirts in those days because I was embarrassed about the graffiti on my body. I will be forever grateful to M for helping me to still feel beautiful and loved while all of this was going on. He ignored the writing on my body because he wanted to be with me, and although we went our separate ways romantically, we have remained close friends to this day.

Radiation therapy for Hodgkins Lymphoma, at least back in those days, was a daily thing, Monday through Friday. I had two cycles of treatments. The first cycle was, if I recall correctly, somewhere between 6 and 8 weeks in length. During the first cycle of treatments, a rectangular area from my chin down to the bottom of my rib cage and including my entire chest was exposed. I had an entire month off between the two cycles of treatments. Midway through the first cycle of treatments, I noticed that the tech that made me really uncomfortable was gone. I never said anything, more because I had no concrete evidence than anything else, but I am guessing someone did have evidence and did say something.

The side effects of the first cycle of treatments were brutal. I was fitted by an oncological dentist, for trays, so I could give myself daily fluoride treatments, because my saliva glands were knocked out by the rads. As a consequence, there were things I could not eat, because they were too dry and since my mouth was dry as well, I had difficulty swallowing. This was when the mashed potato and gravy diet started. If I went out to eat, the restaurant had to have mashed potatoes and gravy, because I could at least swallow that. I started drinking Ensure® to get the actual nutrition I was missing because I could not eat. I lost weight (not that I had a whole lot to lose, because I was tall and skinny to begin with). I had ugly purple radiation burns on my neck and chest, in addition to the permanent marker graffiti. My hair fell out in all the areas exposed to the rads. On the back of my head, from the notch in my skull down, was bald. Silver lining - I did not have to shave my underams for months! The worst thing about this phase (even worse than losing part of my hair) was the fatigue. I slept for 12-18 hours a day. I would have slept for 24 hours a day if I could, because I was THAT tired. I could not predict, from day to day, what my energy level would be like. It was really frustrating. People would ask me, "Do you want to do such and such next Saturday?" and I would have to respond with, "I don't know, I can't plan that far ahead. Can you call me next Saturday, so I can see how I am feeling then?" The people closest to me totally understood, but it still hurt, that some people dropped out of my life because I could not make commitments in advance.

The second cycle was a little shorter in duration and exposed only a rectangular area of about 6" X 12" along my abdominal midline (to zap the lymphnodes in my abdomen along the aorta). I found the side effects of this cycle to be worse. Add nausea and vomiting to the mix of the above symptoms. It was at this time that I also went on antidepressants and serious antinausea medications. I was not suicidal, I just wanted to go to sleep and never wake up again. I was tired. I was sick. I was battle weary. And I just wanted it to be over, to feel better, and to live a normal life of a young woman. And it just was not happening. Cancer has a way of taking 'normal' away, forever. I sometimes still grieve the loss of normalcy.

The running joke, for years, about my little India Ink tattoos is that someday there will be an epic game of "Connect the Dots" played on my body. My friend, who had the Facebook status, told me I should tell people it is a constellation. I like that idea a lot.

Spinal Chord Stimulation

Well, the facet joint injection procedure only gave marginal relief from my back pain and muscle spasms. So, in essence, I am still swallowing a whole bunch of pills that only alleviate the pain and spasms, but not get to the root what is causing my back problems. I went in for epidural cortisone injections today, and had a good chat with Dr. C. about what is happening.

I have had the epidural cortisone injections before (on three different occasions). I did get much needed relief from them in the past, and am hoping the injections today offer me respite as well. My back is really screaming at me today, after the injections. I do not remember being in this much pain after the other epidurals, but that may be due to the fact that for those injections I was under conscious sedation (Versed is a wonderful thing). Since K is now home from school, I was finally able to take something for the pain (I had to wait for four hours though). I am still in pain, but I don't really care.

Dr. C. is convinced that what is causing my problems is the scar tissue from my lumbar laminectomy. I only have one disc that is degenerated (the one that was operated on), and the other discs are within normal limits for my age as far as compression goes. On its face, that is really good news. My back is not as fucked up as it is acting. I asked Dr. C. if he thought an inversion table would help me at all. He told me that he thought it would be beneficial and gave me an anecdotal story about his brother in law using one and swearing by it. So now, I am putting out to the Universe that I would like to manifest an inversion table. We really do not have the funds to be able to buy one, and probably won't have the money in the foreseeable future. I just want to get to the point where I can start some sort of physical therapy to strengthen my back and core so I don't get to this point as often. Acute situations are so much easier to handle than chronic ones. And I am in a chronic stage right now.

I saw a clip two or three weeks ago on TV about Spinal Chord Stimulation, and am curious if I would be a good candidate for it. Essentially, the surgeon implants an electrode onto the spinal chord, and the patient has some sort of remote control device that can turn the stimulation on and off as needed for pain and spasms. They do a temporary one, as a trial and after a specified amount of time, the patient decides whether they want it on a permanent basis, and the surgeon implants a permanent device. Apparently, according to the news clip (http://abclocal.go.com/kabc/story?section=news/health/your_health&id=7395631) 85% of patients who have the temporary electrode implanted opt for the permanent one. It really looks attractive to me at this point.

The $64,000 question is: does anyone at the orthopaedic practice I go to DO this procedure, or am I going to have to go to Los Angeles to get this done? Los Angeles is not a deal breaker, but it makes things a little more complicated. Although, I love the UCLA campus, and would not be against going there for a same-day procedure, if necessary. Westwood is beautiful any time of the year.

OK, A Little Better Today

I had myself a good, old fashioned wallow in my pity day yesterday. Still kind of dealing with the residual grief of losing R permanently last year. That, in combination with kind of an emotionally intense day on Sunday and yesterday's doctor appointment were more than enough to send me over the edge.

When I was at the doctor's office yesterday, he gave me a diagnosis that has a rather ugly and negative sound to it, Failed Back (Surgery) Syndrome. This is in addition to osteoarthritis. This condition also has a kind of grim prognosis, as evidenced by the doctor's statement as he was leaving the exam room, "Just let us know when you are running out of Vicodin and Soma, we'll call them in to your pharmacy."

I am scheduled for an epidural injection next week. At some point, if we can get my back out of the cascade of spasm, I will be going in for physical therapy to (hopefully) strengthen the muscles so they do not go into spasm in the first place. I can handle the back pain, it is the spasms that pretty much lay me flat out. And I am pretty much in back spasms for at least 1/2 of my waking hours. Needless to say, I have to really think about what I do and whether I can accomplish certain things. And even with all this lying around, I am still losing weight. I am seriously not exerting much energy (although the energy it takes to just exist with chronic pain could possibly be Herculean), my appetite is not as large as normal, but I don't think I am eating THAT much less. Weird. I have lost 15 pounds in the past couple of months. At this rate I should be ready for bikini season really soon. (HAHAHAHA - I know better than to wear a bikini).

I did cry for about 10 minutes total last night. Somehow I stopped myself before I totally lost control. I have become a master of distracting myself from my grief. I know there is a vast rushing river of tears within, but I dare not let very much of it out for fear that I will get lost in it. As afraid as I am of letting it out, I also really wish I could let it go and be done with it. Having it all there, so close to the surface, feels crazy to me. I cry about the stupidest things sometimes, just because it is all there and has to overflow sometimes. Then I feel really foolish.

OK, I have started to cry

I am not sure how I am going to stop. The floodgates are open and I am losing control. Not sure if I really ever had control, but the river of tears has started flowing, and does not look like it is going to stop any time soon.

International Day

Our citywide Girl Scouts International Day was today. Troops can choose whether they wish to be a country, or tourists. Most troops choose to be countries, which is really fun. Our troop was Kenya this year. We served samosas and iced tea (as Kenyan food is very Indian inspired and tea is one of their main exports). Our girls' costumes consisted of 2 yards of one fabric as almost a sarong looking style and a contrasting fabric as a sash. The girls looked very cute.

The above photo is of our troop's banner. I cut out and sewed the letters on it, the girls made the animal faces, and I hot glued the animal faces and the "Troop 2065" on the bottom. I am very happy with how it turned out.

Without fail, no matter what the weather forecast is, International Day is always a hot day. This morning I was watching the news before we left, and the forecast was for a high temperature of 70° F. When we left after the event was over it was well into the 80's. So much for Live Mega Doppler 7000 in HD today. Garth Kemp totally let me down, man!

Upon arriving home, K went directly to her room. She is napping as I write this. What is it about being outside in the direct sunlight that saps everyone's energy? I have never been able to figure that out.

It is always nice to see K's friends who are in different troops and the countries they represent. K's friends represented Argentina, Taiwan, Japan, and the Philippines. Going around and sampling the foods of the different countries is always fun. K's favorite was Switzerland, who was serving Swiss Cheese and Chocolate. My favorite was Korea, who was serving glass noodle salad. Yum. All of the girls from all the different troop looked fantastic.

Let's Try This Again

One year ago tomorrow (April 22). My friend R passed away suddenly. I am kind of sketchy on the details, but she was on vacation with her parents, and she was either on a cruise (and off the ship in one of the cruise ship tourist towns in Gulf Coastal Mexico) or she was in Fort Myers, FL. At any rate, she had gone into a gift shop, while her parents waited outside. They waited outside the gift shop for awhile, and then H (R's mom) decided to go in and find out what was taking so long. R had collapsed on the floor, and someone was trying to revive her when H went in. R had a brain aneurysm which had ruptured, and it is likely she was dead before she even hit the floor.

I met R probably about a year after I had completed my radiation treatments for Hodgkins Lymphoma. We met in the kitchen at Camp Vermilion which was the setting for a recovery retreat up in the iron range of northern Minnesota. She was new in recovery and appeared very overwhelmed by a few of the Type A personalities barking orders in the kitchen. We had an almost instant connection. There was definitely a kinship bond between us which seemed to predate both of us.

For whatever reason, as deeply as I loved (and still love) R, our friendship has not always traveled a smooth road. Rough, rocky, and intense are probably apt descriptors for our relationship. There was a fragility about R, and an a certain amount of unpredictability about what was going to trigger the fragility. From R, I learned much about tact, diplomacy, and gentleness in confrontation. I am very much a bull in a china shop, and R's fragile nature taught me how to be more gentle and thoughtful. I am actually amazed she was willing to be friends with me because I am not a very gentle person (even today I have more than my share of rough edges).

Even though she was fragile (and due to stuff from her past) a very broken person, there was a depth and a beauty to her spirit that I always admired and found myself very envious of. Here I was, a hardened biker bitch, and R was this very feminine (but not ruffly), very artistic, creatively gifted woman. I still wonder to this day what it was that attracted her to me, because I am very logical, linear, and mathematical, and outwardly not really warm and cuddly.

I, too, am a very broken and flawed person. I keep all of that very well hidden. Truth be told, sometimes I am afraid to start crying, because I fear I will never stop. Don't get me wrong. I do cry, I just don't allow myself to cry for very long. She was so fearless about accessing the sadness and grief of her life, feelings I really have difficulty allowing myself to really and truly experience. I envied her ability to let herself feel those feelings.

Her artistic ability and creativity were qualities that I loved. I can barely draw stick figures, and she was able to draw, paint, use pastels, and other media to create beautiful works of art. The only thing I can do is sing, and once I am done singing, there is nothing tangible left, but when she painted, her paintings remain, even long after she is gone. I long to be able to create like she did.

Her loyalty to her family, even though they did not deserve her loyalty, showed an inner strength that was profound, and belied how delicate she was inside. As much as they hurt her, she loved them without condition, and would move heaven and earth to be there for them when they needed her. Maybe now they realize what a treasure she was.

I know why she was put into my life. I needed (and still do need) to learn how to be gentle, how to appreciate beauty. As emotional and painful as our relationship was, I miss her. Not a day goes by that I do not think of her and wonder about what things would have been like if I had just swallowed my pride and reached out just one more time. I wish I could figure out why she was taken from my life. Not sure I will ever really know the answer to that.

RJH
April 8, 1960-April 22, 2009
Loved and Sorely Missed

To Those Who Have Gone Before Us.

On Thursday (April 22) it will have been one year since R passed away, and on Sunday it will be one year since I was told of her passing. I miss R. She left my life about a year and a half before she actually died, but I always thought there was time to try and reconcile. There was...the year and a half that we did not speak before she died.

We met in recovery, and I think because of that, I think there were things on both sides that were tolerated, that would not have been borne had we not been in recovery together. Funny how that is.

I am feeling a need to share some of the things that hurt me. Perhaps so I can let them go forever. One of the rifts in our friendship occurred in the months leading up to my wedding. I had asked my friend, J, to be my Matron of Honor. It was a difficult decision to chose between J and R for this role since they were both my best friends, and what it boiled down to for me, was I had known J longer than I had known R. I did ask R to be one of my attendants; I also asked my sister-in-law to stand up in our wedding. My mom made not only my gown, but she also made the bridesmaid dresses.

Behind the scenes, and apparently behind my back, R (at least from my limited viewpoint) harbored a resentment about my asking J. This all blew up in my face about a week before the wedding when she got really upset with me (about what, I can't remember). I remember quite clearly her saying, "You know, J, your wedding is not all about you!" Yep, I am still scratching my head about that one. At that point, right or wrong (probably wrong, in retrospect), I told her that if she could not be supportive of me getting married, that she need not come to the wedding at all. We did not speak to each other for about a year after that. And I never truly trusted her again.

Almost three years ago, my parents and my son were planning to come out here to visit. This visit was to coincide with K's (my daughter's) birthday. R invited herself along for the trip, I could see this was going to be a trainwreck, but other than tell her not to come, there was not a whole lot I could have done to avoid major derailment. I can handle the dysfunction of my own family. I can handle R's dysfunction, but I cannot handle the two of them simultaneously. And that is exactly what happened.

During that visit, R, my parents, my son, my daughter, and I went on a road trip for a few days to the Grand Canyon. I had never seen the Grand Canyon, and since it is a day's drive from OC, we decided to make the trip. No biggie, except for the fact that road trips with my parents can be a psychological adventure. My dad uses no courtesy when he drives, my mom gets angry with him, my dad gets defensive...etc. In other words, things get fiery.

In true F Family road trip form, things got fiery. And R totally wigged out about it. Wigged out to the point of screaming at me, in front of K, about how I am more evil than my dad, and that K is a brat. At that point (two days into the week) I was done. I shut down, and just pretended everything was fine until after they left. My mom knew something was up but knew me well enough to know that I would tell her what was up when I felt comfortable (which was over the phone after they got home).

Later in the week, we were getting ready for K's birthday party. We had planned to commandeer some picnic tables in the park, invited some of K's friends, and had ordered pizzas, a cake, and picked up a fruit plate for the party. We have a side by side refrigerator, so the refrigerator side is tall and a bit on the narrow side. R was going on and on about how we need to refrigerate the cake (when there was no room in the fridge to do so), and my mom, my husband, and I told her that the cake would be fine without being cold. After all, the bulk of the "audience" was 6 year old children, who quite frankly would not know a hot cake from a cold one.

Throughout the week, she tried to dominate the kitchen, which annoyed my husband greatly. Every time we were in there, she had to get in the middle of everything. "Oh, are you sure you want to do it THAT way?" etc. On K's actual birthday, we let K choose the menu. She chose macaroni and cheese, corn on the cob, and dinosaur (chicken) nuggets. Well, R decided that we had to have a salad, and she took the strainer I was planning on using to drain the noodles in, and put her salad greens in it and plopped it into the fridge. No big deal, really, I put her greens into a different bowl, and rinsed out the strainer, so I could strain the noodles. Well, you would have thought I had stomped a kitten to death. She got very passive aggressive about it.

The day before they were going to leave, she decided she wanted me to bring her to Costco so she could get her pictures developed. I told her that I was not sure whether Costco did the one hour processing (at the time I did not know). I did not tell her that, quite frankly, it is kind of a hassle (on a weekend day no less) to walk almost all the way through Costco just to get to the photo lab. I offered to take her to CVS to get the film developed, since I could be assured that the photos would be ready before they left the next day. She got really snippy and said, "Never mind, I will develop them at home." She had taken a lot of photos of S (my son), K, and I. Photos that no one else had taken. She had stated she wanted to get double prints so I could have a set. As far as I know, she never got that film developed. And there were photos I would have loved to see. And pardon the language, but it fucking hurts.

As flawed as I am as a human being, I never called her any names, either to her face, or behind her back. She not only called me names, she called my daughter names. And she did this during a period in which she was a guest in my home. And I let her. But yet I miss her. How fucked up is that?