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Surferbabe - Linda - Hostess

Surferbabe - Linda - Hostess

Date : 04-29-2003 - 08:48 PM - Readers : 4552

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Hi! I had my hysterectomy in February 2002 at the age of 45. Prior to the surgery, I was a busy single mom with two preteen boys. When I wasn't taking care of them, the house and my two Maine Coon cats (Rusty, my avatar kitty, and Bear, his equally beautiful and sweet blue tabby brother, who were 11 years old in 2002), I was traveling around the world with my older DS, who was a member of the AAU Junior National Karate Team, or coaching the kids from our dojo who were just getting into competing.

My whole life, I had had what I thought were "normal" periods; they came about every 20 days and lasted 10-14 days each. I had severe cramps and bled very heavily for most of those days. Nobody ever told me that that wasn't how it was supposed to be -- the only inkling I had was when I was trying to conceive a second child and couldn't because my periods were too close together. Since we were able to overcome that, ultimately, using compounded progesterone vaginal suppositories to delay the next period, I figured everyone had periods like mine. When, in my late 30s, I went on depo Provera for a few years and my periods stopped completely, I thought that was the life -- little did I know that it would come back to bite me later.

Looking back from where I sit now, my health issues really started at about age 43, when I started having symptoms of perimenopause. Perimenopause itself was no big deal; just some night sweats, which were annoying but tolerable because I ate a lot of foods rich in soy. However, after a remarkably healthy life up to that point, I started getting sick more and more often with all sorts of infections: sinus infections, bronchitis, pneumonia ... it seemed as though as soon as I got over one, another one started. I was on and off all sorts of antibiotics, but never really felt completely healthy the way I had always felt before. Then the problems worsened - I started having dizzy spells and falling, and getting throbbing headaches in the back of my head just behind my ears, always on one side more than the other. The DRs were mystified. Eventually they sent me for a consult with a neurologist, who ordered an MRI.

When I went in for the results, he told me that I had a large, unidentified mass that was pressing against my eustachean tubes, more on one side than the other, and it was causing the dizziness and headaches because of its size. He was concerned that it could be a tumor and sent me to an ENT (Ear, Nose & Throat) specialist to have an endoscopy, a.k.a. the "nose cam". That was an interesting experience in itself (creepy but not painful); as soon as the camera was up into my head, the DR said "Wow, those are the biggest ones I've ever seen!". I said, "Biggest WHAT?" and he answered, "Adenoids". Apparently they had grown to a very large size, and the infections I was getting were because the antibiotics were never able to penetrate all the way into the adenoids to kill the bacteria that were hanging out in there. I had most of my adenoids removed and the headaches and dizzy spells stopped.

What I didn't appreciate at that time was that part of the reason the infections never went away was because my immune system was obviously weakened compared to how it had always been. I missed that, and I missed that it was associated (timing-wise) with the onset of perimenopause. If I'd caught on back then, perhaps I could have taken steps to strengthen my immune system and might not have had to go through some of the problems I've had since then, but I was just focusing on putting the whole adenoids thing behind me, thinking that was the end of the health issues.

Next, at age 45, I was in the bathroom one day and something suddenly felt strange, so I got a mirror and looked, and there was my cervix smiling back at me! I went in to see my gyn right away, and after a quick exam she told me I had a third degree uterine prolapse, a cystocele and a rectocele. She said the hormonal changes had caused the ligaments holding everything up to relax, allowing all my abdominal organs to fall. It also didn't help that I had a family history of prolapse, I'd had two very large vaginal deliveries at ages 34 and 37, and tended to do a lot of heavy lifting.

The prolapse was so severe that my DR felt I had no other option but to have a vaginal hysterectomy ASAP. However, I had a two week trip to Japan with DS for a competition scheduled for just eight weeks later. Luckily, my gyn was able to squeeze me into the schedule and I had a TVH/BSO with A&P repair and resuspension of the bladder a week and a half later. I had a Foley catheter the first week at home because I had so much swelling that I couldn't urinate on my own when they first removed it; however, when I removed the Foley a week later, I was able to retrain my bladder to work just fine. I started on HRT right after the surgery.

I was a very good Princess and was careful not to overdo, because I knew I needed to be OK to travel to Japan at six and a half weeks post op. My DR had told me that as long as I didn't carry anything over ten pounds, I could go. Unfortunately, unforeseen complications arose ... at about four weeks post op, I started having horrible left-sided abdominal pains and cycling high fevers. In hindsight, I'd had lesser pains for days, and probably mild fevers too, but had figured they were just normal post op twinges due to stitches dissolving and not been concerned. It turns out that I had diverticulitis, which had been untreated for so long that my colon perforated and I had peritonitis. We got it under control with antibiotics, but it recurred, so I had to stay on the antibiotics for 30 days. The gastroenterologist told me that if it happened again, I'd have to have a colon resection, so I was very careful of what I ate after that.

In addition, at my six week checkup, my DR told me that I had a vaginal adhesion. She'd never seen one before in all her years of practice. The anterior and posterior vaginal incisions had healed with a bridge of scar tissue between them about half way up the vagina. I went on the Japan trip a few days later, and after I got back I had another surgery to remove the adhesion.

Fast forward to my first Hysterversary ... in the middle of celebrating how good I was feeling one year after my hyst, I had another diverticulitis attack. I went back on the heavy antibiotics and restricted diet, and six weeks later I was back in the hospital having a colectomy. The surgeon told me afterwards that I was extremely lucky to have survived the initial attack a year earlier, because my an abscess had formed around the perforation in my colon, keeping the infection from spreading through my whole abdomen.

He also said that the blood vessels that used to supply my left ovary had wrapped themselves around my colon, probably as a result of sticking to the infected area, and were in danger of causing a strangulation of the colon. He ended up removing most of my colon, from just before the hepatic flexure to halfway down the sigmoid. I had a twelve inch vertical incision, which became a very large hypertrophic scar. I tried several different treatments to soften and fade the scar; the most successful was Aldara cream that a plastic surgeon prescribed off-label. It improved the appearance to where the scar no longer itched and burned all the time, and wasn't quite so prominent, but it will always be very noticeable.

Recovery from the colectomy took about a year before I felt really normal again. At that point, in mid-2004, I began working out at Curves and starting to feel great, and - wham! - I had my first bad mammogram. I'd had mammograms every year since my 39th birthday, and they'd always been fine, so this was a shock. I was told that I had some suspicious microcalcifications that needed evaluation. First they did a diagnostic mammogram, which reiterated that the microcalcifications were of a suspicious nature. Then I had a stereotactic core needle biopsy; the pathology results showed ADH (atypical ductal hyperplasia), ALH (atypical lobular hyperplasia), LCIS (lobular carcinoma in situ) and borderline DCIS (ductal carcinoma in situ).

I was sent to a surgeon to discuss my options. He felt that since it had been caught very early, we could try doing a lumpectomy only, and then he would refer me to whichever oncologist I chose. I went ahead and had the lumpectomy and was very pleased with the cosmetic results, feeling like I'd dodged a bullet. I elected to see an oncologist who was doing research in the use of Arimidex in the treatment of women who'd had DCIS at a major teaching hospital nearby and had reported some very encouraging results in terms of lower recurrence rates.

That was a very frustrating experience. This particular oncologist had the bedside manner of Attila the Hun, plus the attitude that she didn't have to answer any questions or explain anything to me; after all, I was only the patient. I remember her telling me I had to stop my hormone replacement and go on Tamoxifen. When I asked her if she'd be telling me to have my ovaries removed if I still had them, she said "of course not"; when I asked her why, then, she was telling me to stop my HRT, she wouldn't answer. When I asked her why she wanted me on Tamoxifen instead of Arimidex, since I had no ovaries and she was doing research on Arimidex for postmenopausal DCIS patients, she said "because Arimidex is experimental".

To humor her, I agreed to cut my estrogen dose in half and start on Tamoxifen. I lasted six days. I developed every known side effect of Tamoxifen except vomiting. The worst were the bone pain (could not walk unassisted), migraine-type headaches and blurred vision. I went to see my GYN, and she took one look at me and told me to stop taking the Tamoxifen. She sent me back to the surgeon who'd done the lumpectomy, who agreed that some people just can't tolerate Tamoxifen, and for those people the risks outweigh the benefits. Both he and my GYN suggested I go back on my HRT and see a different oncologist, which I subsequently did.

For two years after that, I had mammograms every six months. They kept coming back clear. I worked out regularly, made sure I ate a healthy diet and lost some weight. I figured once again that my health problems were over. However, in 2006, the last of the every six months mammograms came back with suspicious microcalcifications once again. I went through the diagnostic mammogram and the stereotactic core needle biopsy again, and this time there was no "borderline" -- it was definitely DCIS. I had a second, much larger lumpectomy and did radiation this time.

Not being one to spend six weeks in treatment when there was a way to do it faster, I elected to do MammoSite internal brachytherapy. It was a thoroughly fascinating process from an intellectual viewpoint. It was very intense -- it was my whole life for about ten days, during which time I wore a catheter that looked a lot like a Foley inflated to the size of a golf ball inside a cavity where the lumpectomy had been done. It probably wouldn't have been too uncomfortable except that, because I had had a hematoma in the lumpectomy cavity after the surgery, the catheter couldn't be inserted for six weeks afterwards, and I'd already begun to heal when it was inserted and then inflated, tearing the healing tissues. The result was that it was very painful for the entire ten days. Still, in ten days it was over, and the ability to put that behind me relatively quickly was worth it to me.

I've had two good mammograms since the last lumpectomy and radiation, and I'm keeping my fingers crossed that the problems are finally over. Through it all, I'm still on HRT and trying to stay as healthy as possible. Thinking back now, I wonder what role my weakened immune system played in letting the bad cells take hold and grow? And, since the WHI study results have been interpreted in detail, I wonder what part my years of depo Provera use played in my cancer diagnoses?

These days I'm still a busy single mom, though my older son is in college now and the younger one is in high school. DBF and I own our own karate school (we opened in the summer of 2005), which is challenging and fun at the same time. I also work as a publisher online for a company in New York. I still have Rusty and Bear, my two kitties, and we've since also adopted two pit bulls, Beau (adopted in 2003 at age 1) and Ruby (adopted as a puppy in early 2007).

I first found HysterSisters a few days after my hysterectomy. I was home alone and bored, and noticed that my laptop weighed less than the prescribed ten pounds, plus the heat from it kept my tummy warm, which helped with the pain, so I started surfing the web and looking for info on my surgery. I lurked here for a little while and then signed up on Valentine's Day, 2002. At first, I posted questions on the Post Op board, looking for support and help in understanding what was going on with the complications I had. Then, because of the diverticulitis and colectomy, I ended up looking for answers to my questions on the Road Less Traveled board. Next I discovered the Hormone Jungle, and was happy to find that my research background helped me a lot in understanding how my body responds to HRTs. Gradually I found myself answering other members' questions more than asking my own. I found that reaching outside of myself to try to comfort others made me stop focusing on my own problems, and I started feeling better and better.

In July 2002, I became a Post Op hostess, and since then have helped out in many of the forums. These days, I'm honored to have the opportunity to help out in the Hormone Jungle and on the Road Less Traveled, as well as in the Breast Health and Sexual Dysfunction forums. I have never in my life met such an intelligent, caring group of women, and I feel lucky to be able to be part of this site. Thank you, (((Kathy))), for creating this wonderful "home" for us.

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