Wednesday, May 26, 2010


I am having both the spasms and the pain tonight. I had the Brownie meeting this evening, so I had to go without the meds, because I have to be able to be clear, present and to be able to drive home. Now that I am home, I decided to skip the Baclofen and take the Soma, along with the Vicodin. I really hate this. I would love to be able to go a couple of weeks without my back screaming at me. I really would.

I am grateful that I had four days last week without pain. It was truly luxurious.

Tuesday, May 25, 2010

Baclofen Day 2

Tonight is the second night with the Baclofen. So far I am a wee bit less than amused. While it is doing what it is supposed to with regard to the back spasms, it has made me rather listless and flat. I will have to scour the side effects to see if flat affect is listed. The house could be burning down and the Baclofen makes me feel like I just don't care. NOT. GOOD.

I will give it probably two more days, before I go back to taking the Soma. At least on the Soma, I am not flat. I am not used to having no emotions at all. I might as well be a freaking robot the way this drug is affecting me. Yuck. I mean really, I cannot even generate very much outrage over how British Petroleum wants to stick the US taxpayers with the bill for cleaning up their mess in the Gulf of Mexico. Normally I would be livid about stuff like that, and right now all I can muster is a "Meh." This is so not like me at all.

Monday, May 24, 2010

Jacob's Ladder

We are climbing Jacob's Ladder
We are climbing Jacob's Ladder
We are climbing Jacob's Ladder
Soldiers of the cross

Went to see Dr. C. (pain management specialist). I have gotten a lot more relief from the epidural cortisone injection than I did when I had the facet joint cortisone injections. He is puzzled by this, since he thought the MRI ruled out any nerve involvement with my back pain and spasms. And since I do not have sciatica, and haven't since I had the surgery in 1992, the epidural really should not have done squat.

I asked him today about the spinal chord stimulation. He said he thought I would not be an optimum candidate for it, because I do not have the sciatica. But he also said he would keep my file with him and ask a couple of his colleagues what they thought.

Now that I am to the point that the slightest wrong move does not send me into excruciating pain and soul crushing muscle spasms, I will be starting physical therapy to strengthen my core muscles and stretch my back muscles.

Here is where the climbing Jacob's Ladder thing comes in. We have worked from relatively mild anti spasm medications (Flexeril), to medium (Skelaxin), to strong (Soma). We have now left Soma behind and have moved up to Baclofen. He is starting me on a really low dosage, and probably will bump it up later as I am able to tolerate it. Quite frankly, after taking my first dose a few hours ago, I am thinking I may go back down to the Soma. The half tablet I took today has sucked the life right out of me. I feel listless and like I have been dragged behind a truck for 5 miles. There is no way I can function like this, and will likely only be able to take the Baclofen at night. Of course, I can only take the Soma at night as well, because of the drowsiness and lightheadedness. UGH. I am wondering if the Baclofen is something I will get used to so I don't feel like this every time I take it. If not, the next stop up the ladder is Neurontin.

I also had the "You know, doctor, you have me on some heavy duty drugs...and I worry about dependence" talk with him. Having been prescribed the various muscle relaxers and having the standing Vicodin ES prescription, there is cause for some concern. Ultimately, only I know whether I am taking the meds inappropriately or not (I have not taken them inappropriately so far, but the potential is strongly there, and I am at least aware of it). But for me, it added a measure of safety for me to be able to have this conversation with him. Dr. C. reassured me that I was not using the meds excessively and that he would not refill them if he thought I was.

Dr. C. seems to think that some of my problems are related to the buildup of scar tissue around the laminectomy site. That and the osteoarthritis of the facet joints are probably the crux of my issues. And sadly, there may not be a permanent fix for it. He said, at my last visit, that although there is some compression of the discs, that lumbar compression was not the major thing causing my pain and spasms. This may be as good as it gets. And that makes me kind of sad.

Friday, May 21, 2010

The Nightmare is Over

Okay, so it really was not a nightmare. We finally got in to see the Pediatric Orthopod today. Sunday night, when they were splinting K, I asked if it was a radius fracture. The tech said, "No, she fractured her ulna." which did not make sense to me but, so be it, she and the ER doc (who I only saw on the way in) are the professionals.

She did fracture her radius and not her ulna. Her fracture is diagonal and right into the growth plate, which, in a weird way, is a good thing. Because it is near the growth plate, it is likely to heal faster. But needs to be watched closely.

I paid the extra $40 for K to have a waterproof cast, since swim team starts soon and I at least want her to go to practice. Plus, my back cannot take the stress of giving her a bath, I will have to help her, but at least I don't have to hold her arm up while she rinses her hair, etc.

Her cast is pink. Above is a picture with her identifying features blocked. We have an appointment for a recheck next Thursday.

Tuesday, May 18, 2010

My Head is in Orbit

Would anyone who finds my head whenever it lands, please kindly send it back to me? I may need it again.

Yesterday morning, I called the CHOC Orthopaedic office and was informed that they would do a review board and get back to me to schedule an appointment. Well they called and got our voicemail (when I told them specifically to call my cell). K's appointment is scheduled for June 8 (!!!!!!!!!).

Um, today is May 18, are they trying to tell me they can't get her in to put a cast on for THREE EFFING WEEKS???? Are they really THAT busy?????

So, as calmly as I could, I called them back. (Maybe it was better that they called the home phoneline...) I told the person on the other end that K has a TEMPORARY SPLINT, and that she needs a permanent cast and a note from doctor with her restrictions before I can send her back to school. And June 8 is the first available appointment????

She told me that, yes indeed, they could not see her before June 8. I told her that was unacceptable. I also told her that I might as well take K out of school for the rest of the school year if we cannot get in until June 8. She then looked into the records and said, "Oh wait, you have a PPO, let me give you our 'Private Office' number. Make sure you tell them you have a PPO or they will hang up on you."

So I called the private office number, and K has an appointment for this coming Friday (May 21st ). Now why did we not get this 'Private Office' number when we left the ER? The ER knew we have a PPO and not an HMO. Perhaps if I had been able to call the 'Private Office' in the first place, K may not have had to miss an entire week of school. Best Health Care in the world.

I was respectful and did call the first office to cancel my appointment.

Now if you excuse me, I am going to go outside and look up to see if my head is ready to land.

Monday, May 17, 2010

Night in the ER

My husband took K out late yesterday afternoon to the park. She fell out of a tree while she was climbing it and injured her wrist. No big deal, it was not swelling up too much and I figured if I gave her some Tylenol and iced it, things would be fine. About 3 hours after she injured it, she was still in excruciating pain, still not a lot of swelling, but the pain was pretty bad. We decided to head to CHOC. At first I thought I may have been overreacting, but since Urgent Care was closed, we kind of had to go to the ER.

We arrived about 9:30 PM. After about an hour in the waiting room, we were brought back to another waiting room. Saw a doctor really quickly, then waited for x-rays. After the x-rays were taken, we waited awhile, then a nurse put a splint on K, told us she had a hairline fracture on her ulna near her wrist and gave us the number to the CHOC orthopaedic clinic.

Called them first thing this morning, and was told that I have to wait until the "review board" looks over her files, before they will give us an appointment. WTH??? So I am waiting for them to call me. In the meantime, her splint is a temporary one, she is desperately in need of a bath, and we are not allowed to get the splint wet. GREAT. It was a very small consolation that "fractures get priority" with the review board. It could still be tomorrow before I hear from them. *sigh*

Sunday, May 16, 2010


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.

Thursday, May 6, 2010

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 ( 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.