Sunday, September 27, 2009


Maybe it was from the catheter during surgery of just having a hard time emptying my bladder, but along about November 8 or so I saw blood in my urine and ran off the end of the street to see my PCP. She cultured and found bacteria and stuck me on Levaquin for a week.

OH MY if I had known then what I know a year later about that drug and the others in its class I would have declined to take it. It did get rid of the UTI really quickly but my digestive system, still suffering from the anesthesia from surgery and the tramadol got even worse. I began to suffer from horrible gas and constipation, which never was a problem for me unless I hate a lot of beans... then the gas well, heck yeah!

I took my probiotics faithfully and digestive enzymes and still do a year later but still have problem eating stuff.

I noticed on top of trying to get my arms to work that I was feeling stiffer and stiffer in my hips and knees and lower back. I figured it was from the stress, or the fibromyalgia like feelings.

Ultimate Breast Reduction

Finally got to the hospital at like 6:30 AM on the 29th and had to wiggle our way into the building since parts of it were still closed from Ike damage. They did have one OR operating and one floor, the obgyn floor open.
I went into pre op and then had to give a pee sample. Whatever for I asked after straining for 10 minutes to get out a few drops as I already emptied my bladder earlier that morning. A pregnancy TEST? You have got to be kidding??? I could have told them with 110 percent certainty that was totally impossible. Still they felt it necessary. ARRRGGG!

The associate pastor from the Methodist church came up to visit me along with my husband, mother in law and sister in law and a good friend. The surgeon came in and I asked him about getting lymphedema after the surgery and he assured me his patient did NOT get lymphedema. Then they gave me Versed and that's all I remember until I woke up in a room later that day filled with tubes and drains and catheters and a leg pump thingy to keep my blood flowing.

The surgery went perfectly and the surgeon felt he got clear margins and I should be good to go! I asked him, I think, through a morphine haze, if I would need radiation and he didn't think so. Phew! I had to get the nurse to give me something for nausea from the morphine and went back to sleep.

The hospital was extraordinarily quiet since only one floor was open. I got lots of sleep and had a huge comfortable room. I could hear babies in the distance every so often and that's all.
The hospital discharged me after one day, thank goodness, because the food sucked. I had my husband bring me a cheeseburger from Fuddrucker's down the street. Phew! I went home with vicodin, xanax, tramadol and neurontin. I had an allergic reaction to the vicodin within 48 hours and dropped it. The rash took about 4 days to go away and was highly annoying.

A friend of mine had had a similar surgery and she was up and out in 2 weeks. I fully expected to be able to resume my life in 2 weeks. This was so not going to happen. Got two of the three drains out after one week and the last and most distracting one out the second week. Those were so uncomfortable and very hard to deal with with numb and clumsy hands.

The surgeon gave me some exercises to do to get my arm mobility back and although they hurt like holy hell I did them several times a day and by my month return had better mobility than he thought I would. The right side lagged behind as that's where the major lymph node removal and surgery was. It took a few months to totally regain my arm mobility.

Got a mastectomy camisole with prostheses from an online company and it was very comfortable for a while. Finally after the scars were less sensitive I found bra online into which I could put the foam pads and look like a normal human. All the normal mastectomy bras were just horrible, and a 85 year old would not want to wear the ugly things. So glad I found a normal bra with just enough of pockets to hold the pads or the foam boobs I finally bought.

I thought the weight off my shoulders would be terrific and it was! However, going from a double D and losing 3 lbs or so during surgery from my chest, totally threw off my balance. Its only now, a year later that I feel fairly comfortable with my new A-B no weight chest.

I did NOT go back to the Oncologist as I figured I wasn't going to buy their expensive poison so what was the point.

After 6 months the surgeon commented that I was fine and healed up great and very fast in his opinion and to come back in a year. OK, so ends the cancer part. Oh and I never had a day of any lymphedema! Thanks Dr O!

Tuesday, September 22, 2009

More History....Chemo or Surgery or what?

I was totally unravelled by now. Stress is not my strong suit and I try not to get into stressful situations because I worry. Health is a worry. Luckily up until now I had never been seriously ill or even sick with the flu more than once. Colds even were minor things. Wow, Cancer! Chemo. Numbness and nerve pain.

I got a referral to a pain management/Neurologist who ran a bunch of nerve conduction tests with needles and there seemed to be OK signals running. He did MRI's of everything and meanwhile gave me prescription for Neurontin, gabapentin and tramadol for the pain. Oh I previously been prescripted Lyrica for the nerve pain and low back pain. I called it my stupid drug because it really knocked me on my butt mentally and hardly touched the nerve pain. I really felt loopy and ended up stopping it after a week. That made the nerve pain come back twice as strong. So I decided to go with the new drugs, and even though the Neurontin was the older version of Lyrica, this crazy Neuro thought it was a good choice. Tramadol he told me was non addictive too. Also I could continue to take Xanax to settle me down. At this point I really didn't care about getting possibly dependent on Xanax as the pain was excruciating, and making me very anxious. The combo helped a bit, rendering the pain bearable, but the Neurontin made me almost as loopy and lethargic as Lyrica and made my ankles swell some. The Xanax, all of 2 daily doses of a whopping .125 MG really helped me hold onto my sanity. So now I was a druggie after all my life of avoiding drugs like the plague they are. ARRGGHH! I truly felt like a failure by comprising my beliefs.

I decided to go over my choices with my great Naturopathic Doctor. Dr. Bob. Glad I did too. Knowing my pesticide history as he did after helping me get through a bout of chronic fatigue a while back, he advised me to skip the chemo and just have the surgery. Like what does one do when there is a bad spot on an apple? Why cut it out, of course. That did it for me.

I recalled the skeptical look on the surgeon's face when he heard the Anderson people wanted to do 24 weeks of chemo prior to surgery. So I called and scheduled an appointment and went in to talk to him about doing the surgery without the chemo. He felt the tumor again and said why sure, why not? I asked if he thought he could get it all out with clean margins and he said he was very sure he could do that too. I liked his attitude and his confidence. I asked to be scheduled the next day. He laughed. Right.... I did get on the schedule three weeks hence which would have been about a year ago on Sept 15th 2008.

Oh and I figured since there was in situ's in the left side as well that I get a double mastectomy while I was at it. I always wanted a breast reduction and this was my ultimate chance. I had studied my options and it looked like the best for me. No more mammograms, no more chance of the breast cancer popping up later. I wanted the cancer behind me. No reconstruction either. Why? One, I was a smoker and the implant guy probably would not deal with me. Was I going to quit under this pressure. HELL NO! The other options included moving tissue from either my back or my abdomen up to my chest and that would require a second surgery. No thank you to that! Also the double option meant I could have whatever side breasts I wanted when i wanted them. A's for sports and motorcycle riding (those big dudes flop around something wicked on the bumps! and get in the way of tennis or golf swings) B's for everyday wear and D's or Double D's for the sexy going out wear. I liked the idea of the flexibility of the prostheses. ( I still do a year later. Good decision!)

Well, hurricane Ike derailed the plans. Sept 13 and all hell broke loose here in Houston. We stayed home this time since the storm was predicted to exceed a cat 3. Monday morning, surgery day, there was no power and the hospital was totally damaged so no surgery. We ended spent a powerless week living in the RV on generator power in the garage. Luckily the weather was gorgeous after the storm and not hot at all because the wait was horribly stressful and my numb hands and feet were just getting worse.

Finally Monday the 29th of September arrived and surgery happened.... that's the next story.

Monday, September 21, 2009

History Continued...Breast Cancer!

I about freaked out when the mammogram came back with a serious lump and spots in the other breast. The doctor at the mammogram joint wanted me back ASAP for biopsy. So I scheduled one for the following Monday. The mammogram was on a Friday!

Luckily, they gave me a Valium, or rather half a valium, 5 mg before the procedure, and some nice lidocaine to numb the area. The biopsy went fine and then the tissue went off for testing. Not long after the procedure, say within 24 hours, my right hand started to go numb starting with the little fingers and proceeding within a week to take over the whole hand. I could not write, grasp anything and dropped things.

Next I went back for a biopsy on the left breast and as with the right hand, the left started to go numb a few days after the procedure. Ouch! Not only were my hands numb but they hurt like holy hell. Burning pain etc.

My Primary Doc prescribed Cymbalta, like I was deficient in it. OK, being all stressed out now waiting for the biopsy results, I agreed to give it a try. OH MY GAWD!. After the third dose, I almost passed out, dizzy, foggy brained, pulse racing, couldn't breathe! My husband called my best friend who is a paramedic and she and her husband, also a paramedic came racing over and helped me through it. The solution? Xanax. Luckily I had some around even if it was a few years out of date. It stopped the reaction to Cymbalta within 10 minutes. Thank goodness. What a horrible horrible drug. Who the heck created this monster?

Nothing was helping the pain in my hands either and I was getting more and more disabled and unable to cook, write, type or use my camera. Scary!

Then the results came back from the biospy: Cancer. Stage 2, ER+ PR+. And it was off to MD Anderson for the possible treatment options. And I didn't like what I heard one little bit!!!! Remember cancer is big business and although Anderson is the best in the country for cancer, its big enough business that they advertise on the nightly news.

I was told that I needed 24 weeks of chemo then a mastectomy then tamoxifen for 5 years. After having sprayed pesticides for years and knowing I was already toxic I did NOT want chemo at any rate. Frankly I knew it would kill me. I would rather die from falling off my motorcycle than from being systematically poisoned to death. I did have time to research it. I went to meet with a local general surgeon to see about having a port put in. He gave me the strangest look when i said they wanted to do chemo for 24 weeks prior to surgery. That look stayed with me. More on that later.

I researched on the internet for the efficacy of the chemo and red the hundred pages of side effect including losing my hair, maybe some heart damage, etc etc and got madder and madder. Even with the spin on the great odds of surviving with my cancer after chemo, the real numbers were not great at all. Chemo would give me about the same chance of survival as surgery and nothing else. What about radiation? I got another appt with the oncologist and she said point blank that there was no other way to treat the cancer than the chemo and radiation was not an option. I left with no decision.

A Long History: Little Indications of MS.

So the Copaxone was out and of the MS DMDs, it has the least side effects and is not supposed to cause depression. What else is there? I started researching on the internet and got very discouraged at the limited treatments accepted for MS. Supposedly, I have relapsing remitting type, but I am not so sure now.

Had several 'events' during my life that indicated MS but never connected them with the disease. In 1988, I crashed from working too hard I thought, with muscle weakness and overwhelming fatigue, and spent a week in the hospital undergoing all the tests that seemed applicable. Ulcer, upper GI, Epstein barr, blah blah.. all this stuff found out was that I had Mitral Valve Prolapse and general anxiety disorder and left with a prescription for Xanax to take 1 mg once a day and Mylanta for the stomach problems. Well, the hospital rest must have done me good. I took one Xanax and was wiped for the day. I cut it down each day by half and ended up taking .25 mg once a day at my problem time, at 11AM. In a week I was fine again and went on with my life. End of problem end of Xanax and end of mylanta. Back to working out in the heat 8 hours a day doing hard labor. Back to running 3 miles a day. And, I was fine for 10 years.

In 1992, I produced a perfect daughter! During the pregnancy I never felt great like most pregnant ladies do and was diagnosed as possibly having gestational diabetes. I never ate sweets and usually avoided carbs so decided that I would bypass the long test and just eat the diabetic diet my OB-GYN prescribed. It included lots of carbs with protein. I felt pretty bad on it but wanted to do the right thing for my baby. Luckily she came 3 weeks early after I spent 3 weeks on the sofa with elevated blood pressure and preeclampsia possibilities. New Year's Day child, born during one of the Aggies worse football games ever. I had planned to have an epidural but my dear husband passed out in Lamaze class after seeing a photo of the epidural needle. Runs in his family. I decided to forgo the epidural in order to have him with me. All I got when delivering was demerol and just a little of that. Nurse wanted to give me 50 mg and I opted for 12.5. It put me out for a few hours. All went well.

After the delivery, I never lost the baby weight. The food pyramid dictated that lots of grains and carbs were the best thing to eat and I ate the food pyramid and actually gained weight. Before my pregnancy I could eat like a horse and maintain my weight at about 130 which was fine for me at 5'4". Mostly muscle. After the baby, I dropped from 173 to 158 and stuck there like glue no matter how I managed my diet. I was tired, crabby and kind of discouraged that first year.

I went to the regular doctor sometime in this period and discussed the possibility of thyroid problems or Lyme disease. I grew up in New England with lots of ticks and outside in the woods and all. I had worked in Texas in the woods an recalled a tick bite or something that caused a ringed rash on the back of my neck. The local lyme test, the basic lab corp one, was negative. My TSH, I went to the regular doctor and discussed the possibility of thyroid problems or Lyme disease. I grew up in New England with lots of ticks and outside in the woods and all. I had worked in Texas in the woods an recalled a tick bite or something that caused a ringed rash on the back of my neck. The local lyme test was negative. Of course, TSH, was perfect. No thyroid problems then. But the Doctor put me on a month of tetracycline, just in case I did have Lyme, and I did improve somewhat. We never reran the test after the antibiotic course.

I started playing tennis in 1993 and at least got back in shape. Lost a few more pounds and ate the food pyramid like a good girl. Now I weighed 153. Still a good 23-25 lbs over my ideal weight.

Bad things happened starting in 1994. My ex step Dad, (don't ask), Phil, was mistreated with steroids for an asthma attack and ended up in the hospital at the same time my ex step mom, Minn, was being treated for Ovarian cancer here in Houston. They both got better. In 1995, Phil again had an asthma problem and again was mistreated but this time ended up on a ventilator and moved to a Vent hospital in Chicago. We were called to his bedside in mid July. I saw him July 24th for the last time. When we got home on the 25th, my 40th birthday, we got a call he had died. It was awful. It was also a blessing for him.

In 1997, Minn was back on chemo and got sick with a virus or something, went to the hospital, where they insisted on more chemo and she died. My faith in doctor's, hospitals and modern medicine was at a low point for sure.

In 1998, my dearest Dad, who had been diagnosed with prostrate cancer in 1990 and recovered, had a relapse, went downhill pretty quickly and eventually died. I was devastated but unable to go to him as he died out of the country and with a young child in school it was impossible to leave home. He had also asked me earlier that year to NOT come home to be with him. He said to go on with my life. I did as he asked. This basically concluded 3 years of horrible stress with almost all of my parental units dying.

Also in 1998, late summer, I went to a college reunion in Vermont and had a terrific time. When I got home, I broke my little toe trying to avoid kicking the cat, by slamming my foot into a door jam. I limped around for a month then my lower back got messed up and my feet went numb up to my knees. I was pretty sure it was coming from my back after the limping incident. This started in late summer and cleared up on its own by early 1999. Needless to say it was unnerving and stressful.

We built a house, our dream house, and moved in on April Fool's Day, 1999. I had gotten so mad at my weight, at this point, I went to a high protein, good veggie, low carb diet during this time and finally lost my way down to 138. A huge improvement but I still felt drained most of the time. My life was good though! During the building of the house, I spent some time scraping windows with a razor blade and developed bursitis like shoulder problems and had to rest them a lot. Finally, with good chiropractic care and time it went away.

Late July 2001. We took a wonderful family vacation to my home in Ipswich, Mass and then up to Sebasco Resort in Maine. We love Sebasco and before when we have visited there, the weather had been perfect, cool and delightful after the Houston hot humid summer. This year, however, the heat in Maine was unbelievable! It was in the upper 90's every day. No air-conditioning. I noticed one day after playing golf in the heat that the sight in my left eye seemed off. It got worse. I lost the colour red almost totally. It looked grey. Also, the contrast went too. All I could see was sharps and there were no midtones. I was a bit scared. Also my head ached which was not normal for me. I almost never got headaches.

When we got back to Houston and the sight had not resolved I made the trek from eye doctor to Ophthalmologist where I failed a visual field test miserably in that left eye. The optic neuritis, as I found out it was called, eventually resolved on its own over a few months. That was the first time the words Multiple Sclerosis came up. Why would I have MS? Not me surely. I blew it off.

Meanwhile 911 happened and it was very stressful even here in Nowheresville Texas. My husband was away playing golf and I was very unsettled being home alone.

When he got back, I went to a neurologist. She was a total ditz and all my other tests done in her office were fine. She did say well, it could be MS, I just don't know. We can start you on medication that might stop it for 2 years. She was way too vague for me and being a NO MEDs type person, I opted to forget it.

Somewhere in and around 2003- 2004, we took an inital RV trip to north of Houston with some friends to see if RVing was going to be fun. It was but we were fishing by a pond and I got over 50 chigger bites. No big deal except for the incredible itch. Well one of the bites never really healed and i thought it was just because my bra strap rubbed it all the time as well as the car seat belt. Eventually it go worse and nothing would heal it up. I wore a bandaid for years until last summer, 2008.

June 2008. We took our daughter to tennis camp and took the RV to Garner state park where we going to ride the three sisters on our motorcycles. I had been feeling really tired for the past few months and was getting by on a daily nap. It was incredibly hot! While I was showering, I felt a lump in my breast that had not been there before. That unsettled me to no end. The first day we rode the sisters and it was fabulous. Riding these little roads is a motorcyclists dream and it was on my bucket list! Little did I know it might have really been on my bucket list. The second day we started out but by mid ride I really felt horrible and overwhelmed with the heat and limped my way back to the RV where I slept all afternoon. My feet had been feeling kind of numb and my lower back was aching most of the time. The rest of the trip was a long nap. The lump thing bothered me too.

As soon as I got home I went down the street to my primary doctor who took off the skin cancer under local anesthetic, got clear margins, and did a pap and felt the lump and told me to get a mammogram ASAP.

It was at the end of June I finally got in to see the mammogram folks. More later....

MS Therapy

I started Copaxone at a co-pay of $484.00 a month (GASP!) but had a flu like reaction on the 10th day which was NOT supposed to be side effect of the drug. Oh yeah, right! After calling the company and hearing that, with a suggestion I might be getting sick ( I never get sick, my immune system is bored stiff and attacks me when it has nothing better to do, which is all the time) I called my Neurologists office. They confirmed people have the same reaction. Rather than take an antihistamine then then Tylenol, (which knocked me out for the whole day when I tried it)then the shot ,then more Tylenol, I stopped the copaxone. I still have lumps in my abdomen where I took the shots. For $484.00 a month I need a better quality of life then constant sleep or flu like symptoms with temps of 103. The hell with Big Pharma. And the more I read about the efficacy of Copaxone and the other MS drugs, the more I was turned off.

My whole year has been about seeking an alternative to MS drugs, fixing my fibromyalgia and holding onto my muscles and my cognitive skills.

Welcome to my world...

It's mid September 2009 and I have survived the worst year of my life. Last July 2008 I was diagnosed with basal cell skin cancer, had that removed, with stage 2 breast cancer, had my hands go numb after the biopsies, survived Hurricane Ike, had a double mastectomy, lost 15 lbs (not all breast tissue, just to clarify), was diagnosed with MS.

I opted not to have chemotherapy due to my intimate relationship with pesticides from a long career as horticulturist from which I became toxic. Chemo would have killed me. I am sure of it. So I had the cancer removed. Bye Bye!

To find the MS, and transverse myelitis, I had a gazillion MRIs of my brain, cervical spine, thoracic region and lumbar region. There are lesions in my brain and one rather long one in my cervical spine which probably is causing most of my numbness and other MS problems.

I am on Neurologist number 4 as the rest either shook their heads, loaded me up with pain killers, or offered antidepressants and demanded for more tests. My current neuro is a gem, as are her staff and PAs. I relented and had a lumbar puncture which confirmed the MS last January and immediately got treated with a 4 day Solumedrol drip. UGH! That was supposed to make me feel so much better but I am still doing battle with ceaseless Fibromyalgia from the steroids.