Tuesday, January 3, 2012

Ready for a New Year.

Wow! Is all I can say to 2011.

My predictions for Roanne's longevity didn't ring true. 48 hours after my neck fusion, sitting on the couch with Roanne and hospice nurse, Joline, Roanne lifted up her shirt to expose a small rounded tummy and said, "I feel a little bloated", I realized she was not as well I thought she was. That was wednesday 10/12.

Friday night 10/14, sitting on the couch watching TV, her and Chris came back from Taco Bell with 3 small bags of food. I sat there shocked as I realized all the bags were for her and watched her eat practically everything. I knew deep down nothing good would come of that.

Saturday afternoon she took off to go shopping with her mom. Later I learned she shopped and ran errands all by herself in her mom's car. Saturday night would be the start of a long arduous journey. By midnight, Chris would be waking me up. Liquid morphine and phone calls to hospice were required to calm our ailing girl. Her abdomen was getting larger and larger and she was in excruciating pain. Brad the Brave, as he would later be dubbed, showed up bright and early sunday morning. Good bowels sounds, determined no obstruction, or so he thought. We continued to monitor with morphine and keep her as comfortable as possible.

Friends, mothers of friends, all came to help out, to stay with her, support her, support Chris and to support me. 6 days out of a 2 level neck fusion I was feeling exhausted. Someone brought donuts, Roanne had a bite. She seemed to be doing better. But a change in her previous independent status was becoming obvious. The moms ran over to Walmart and bought a baby monitor. Worried she would be too far away for me to hear cries of help and Chris going back to work, I needed some sort of assurance she could reach me.

Chris feeling like she was on the mend, headed back to Beale Air Force Base sunday evening. One of the friends stayed the night and I headed off to bed for much needed sleep. At midnight I got woken up, she wasn't doing well. More distended, more unbearable pain. Morphine and 1-800 hospice. By 2 am we had the ambulance on their way. She had to of had an obstruction, she was just too distended and in too much pain.

I rode in the ambulance with her, Greg went back to bed to try and get a few more hours of sleep with the plan to pick me up when I was ready. Just shy of one total week post-op I was not allowed to drive. Wearing my soft cervical collar, taking my norco, neck precarious, I solidered on, I had to be there for her.

A xray determined there was indeed an obstruction. Next up a Nasal Gastric Tube. They had hooked and IV line up to her port-a-cath so hydration and IV morphine was on board. She was amazing, cooperative, never complained, she readily accepted what had to be done. I asked that they use the smallest tube possible, but worried it would get clogged they used their standard size. The placement of the tube (a large tube that goes in your nose, down your throat and into your stomach) stimulated her gag reflex and buckets of green bile started coming out of her. She had been holding that all in.

With some of the pressure relieved and the morphine on board, she started to get some relief. Arriving at the hospital as a FULL CODE, I expressed my concerns for her being at my house, me an RN and the obligation I would have to her to perform CPR on her should something happend to her. (One week post-op I would not be performing CPR on anyone). Roanne was not ready to accept DNR status. Every time it was discussed with her, she said I am still thinking about it.

Roanne was interesting in that she was tired of suffering, tired of being sick, but she didn't want to die either. She couldn't handle chemo any more but in hindsight I am not sure how she really processed what the next step would be. As a nurse I knew if she stopped the chemo, she would get sicker and die. So the next logical step would be to start the hospice process.

But Roanne seemed like she was just going through the motions. She wanted to live here. To do that, I wanted her under hospice care. So she went along with it for my sake, but she really wasn't ready for it, I believe. If I could have one do-over it would be do have a conversation with her about what it was really going to mean if she stopped chemo. We talked about how much she didn't like it, how sick it made her, but not what the specific outcome would be. I thought it was obvious.

She had tremendous hope. If someone could survive cancer on HOPE alone it would've been Roanne. She had such a fighting spirit. She was such an enigma to me. I couldn't understand how someone with such a fighting spirit could give up the chemo. People I talked to thought her age had something to do with it. An inability to accept death. Not accepting your immortality at the age of 24 would seem the only explanation I could grasp.

When we had the hospice intake nurse come to start the process, there was Roanne, her brother Ryan, her sister MaryRose, her mom Avel, Chris, me and her best friend Megan all there. I heard the nurse ask her at least 5 times in this 2 hour meeting if she was ready for hospice and what it meant. She could find a study, fight some more, or she choose to start hospice. She chose hospice.

So here we are in Walnut Creek Kaiser ED. Confirmed bowel obstruction, NGT placed, end stage metastatic colon cancer, 24 yrs old, FULL CODE. Me just one week out a major surgery trying to manage her care. Not knowing what the bowel obstruction really meant and what laid ahead, Chris was called to come back. Then Greg was called to come pick me up.

Completely exhausted now, 2 nights in a row of limited sleep, one week out of surgery, fragile, scared for her and for me, I went home turned off my phone and went to sleep. Loud noises in the house (Greg and Brittany) woke me up 2 hours later. I check my silent phone and see many missed calls from the hospital. Crap!

Friday, September 23, 2011

ACDF with plating (Anterior Cervical Discectomy with Fusion)

Well I am going to do it!

I made the decision, with a little help, to have my lower neck fused in 2 places. They are going to put in a carbon fiber and titanium cage and put some material in there that will cause my 2 levels to fuse together. It will take about 6 months-1year for that to happen.

It's been a hell of a process. Agonizing to say the least.

I think my journey started when I was 18 and fell off a ski lift at Dodge Ridge. Not incredibly high off the ground, but enough to knock the wind out of my sails, I fell after the lift restarted 100 ft from the dismount area. I never went to the doctors but was unable to move my neck for 3 days after that.

Then 2 years later, traveling approx 40 mph as a passenger in a car, I used my arms to brace myself with the dash board when a car hit us head on. This was before the seat belt law. After that I was unable to use my arms for a couple of days. Not fun trying to pull up your pants after going to the bathroom.

Then last but not least, last year my dog took me for a walk basically. My arm was practically yanked out of my socket and I was thrown to the ground. This started 18 months of doctors, MRI, physical therapy and massage appts.

The conclusion: 2 herniated discs at C5-6 and C6-7, with the start of new herniation at C3-4 on last MRI. No Spinal fluid surrounding the space at C 6-7 (this means my spinal column is not protected here) and bone spurs at both levels also. Nerves are being pinched and trapped in the foramina causing my hands and fingers to have numbness and tingling. Over time I seem  to have more pain everywhere and can't help but wonder if it doesn't have something to do with my central nervous system being compromised.

In the beginning I resisted safe activities. I still skied, but very cautiously. If I could help it I didn't let anyone come up behind me. If I could hear them coming I would stop and wait for them to pass and then go on my way.  I mountain biked once, but a miscalculation with the front brake had me over the handle bars and back in the MRI machine. Road biking: challenging in the postion it put me in: Arms extended forward with head tilted back. Freestyle swimming out, too much neck turning. Hiking my only vice left, but after a foot surgery in June, that is limited also.

After 2 surgeries in May and June of this year, I am more accepting of my limited activity level. I could go on this way. Just hiking when I can and the recumbent bike at the gym.

However with increasing symptoms I went back to the neurosurgeon again. The VERDICT: I have to have a fusion eventually. It's just a matter of when. How long can I live with these symptoms? How long can I go on with my life this way?

My husband who just happened to remember I had an appt that day and was free to sit in said, "JUST DO IT".  Get on with your life! Do it!

I was stunned. I figured I would wait until next year, after Roanne. My son's gf has been living with us for a couple of months now. She is under the care of hospice for colon cancer. Recently, Greg had his first routine colonoscopy since he turned 50 last year and we couldn't even handle the stress of his colonoscopy! How were we going to handle a big surgery like this?

How could I do this? How could I take away this time from her and do something selfish for myself? How could I put this kind of stress on my already stressed out family?

I did what anyone would do in my position, I called Dr Laura (radio personality who has a strong moral compass) and then I called my mom and dad.

They all said "DO IT".  Even my best friend Sue who is the most giving person in the world said DO IT.

So I called his office and said LET'S DO IT! I asked for October 10th and am still waiting to hear back if that's the day.

Roanne is doing miraculously well. The steroids and laxatives are keeping her out of too much pain. She is not even here most days when I get home from work. She is either with her friends or family. And that is exactly as it should be. Her parents moved to a better neighborhood recently. Although still small, so Roanne doesn't have her own room, she is spending more time with her family.

So in the mean time I am stressed more ways to sunday. I never imagined that I would really have to do it. My brain knew on some level, but another part of it is still trying to comprehend that at 47 I need to get my neck fused. As a nurse, knowing and seeing all that I do, I am freaked out. I don't want to be a quadriplegic, I don't want to wear a neck brace for 6 weeks! How am I going to sleep? what if it doesn't fuse right, what if I am worse off? look at my foot it's worse than it was before. Oh my god I hope I know what I am doing!

And then I calm myself down and I think about all the things I will be able to do again. After I am fused, the first step will be to become a gym rat. To build muscles all over my core, arms, back and neck. Strong supportive muscles. This I will be able to do without my spinal column and nerves being pinched all  over the place. This I will be able to do with 2 strong vertebrae that won't give or sway when I do too much. This will work. I have a plan. I just hope it's God's plan too.

Wednesday, July 27, 2011

NO EXCUSES!

First off I have to say I am doing ok. My weight got down to 146 at my lowest. My confidence soared at that point! I was getting back to the best part of me. The confident, stand up straight, doubt free spirit of me. Now I am hovering between 147-149. I am struggling and I feel myself sliding. Especially now that I am back to work.

The hardest thing is since I am more active, I am hungrier. I don't tolerate hunger well. Even the slightest bit. I tend to go for the high fat snacks and sugar. Those seems to satisfy the hunger and me, the best.

The next hardest thing is the stress of being back to work. I want to eat when I am stressed.

The key will be to keep healthy snacks and food in the house and eliminate the sugary and bad fat foods. I never begrudge myself fat, but it has to be the healthy kind. Avocados, nuts, good protein sources, olive oil, those kinds. The sugar in fruit is perfect, especially this time of year. Right now I have a big jar of gourmet jelly beans left over from a party. Those are going to have to go. And there is a big jar of peanut butter staring at me every time I open the refrigerator, I need to move that!

I have always loved transformations. Before and Afters. I've been watching Extreme Makeover: Weight Loss Addition. I love to watch the process they go through. They soar in the beginning when they have one-on-one help for the first 90 days. Then the next 90 when they are on their own, they inevitably slide backwards. They start feeling bad & then they get back on the wagon and do better. In the end it seems as if they don't do as well as they could've, because of the falling off and getting back the wagon they do throughout the year. I see myself doing the same thing.

You could argue that people aren't perfect and they don't have to do things perfectly. Shit happens. Just do the best you can. Progress Not Perfection. I agree with all of that.

However, from what I see, it seems the EXCUSES are the mostly limiting factor. And this is my biggest downfall. I let everything get in my way and I become a victim to my own life.

I cancelled my pilates class monday night because I had a rash that was suspected to be shingles. It was not. Not only did I miss it, but I closed a door in my brain. It's like I was walking down a long hallway and I had 2 doors to chose from. Door #1 Cancel class, play it safe. Door #2 go and do your best. Maybe it's more like riding an elevator. Floor #1 takes you down, Floor #2 takes you up. Either way, one plays it very safe and keeps you stuck and the other lifts you up and out of the old way of being and thinking.

So I've decided to have a NO EXCUSES mentality. I am going to suck it up and follow through. Even if I am tired, even if I had a bad day, even if my foot hurts, even if, even if!

NO EXCUSES BABY!  MOVE MORE, EAT LESS!

Wish me Luck!

Thursday, June 23, 2011

Losing my way or just being the real me?

I haven't blogged because I have fallen off the wagon so to speak.

I am far from perfect and who wants to blog about their "failures" or weaknesses?

My 6 weeks no sugar, no wheat, no dairy, no alcohol, no processed foods has not completely fallen by the wayside, but I am not as diligent as I was in the beginning. I am cheating frequently, daily.

Not sure if it's because it's getting old or I am just getting lazy. Deep down I think it has something to do with not feeling worthy enough to succeed. And I think I could throw some fear of failure in there too.

If I stay out of my head and just go back to the task of reading my 3 x 5 cards and reading the book again (I stopped when it got to the part about being active. Not possible recovering from 2 surgeries in the last 4 weeks). I just might make it to the next milestone 145 #.

In my own defense I have not completely blown it. I do good 75% of the time. I am staying steady at 149 #. I am wearing my size 10's comfortably and the 12's are starting to swim on me.

There is a lot of talk lately about stories. The stories we tell ourselves about our past. These stories shape our attitudes and how we perceive ourselves.

I could tell myself I am a failure because I didn't to do it perfectly and I could just give up on the whole thing altogether, why bother............. oh poor me..........

Or I could write a new story. I am doing amazingly well considering I had 2 surgeries in 2 weeks. I can't exercise or even walk for any length of time. And I have lost 6 pounds!

Maybe my journey is not as perfect as I would like it to be, maybe I could be better. Maybe I am expecting too much from myself and my good is good enough, for now : ).

Wednesday, June 8, 2011

Progress!

Whoo-hoo! I am officially in the 140's. I can't remember the last time I have been here. It's been at least a year probably two!

I feel so much lighter physically and emotionally! I still have a ways to go, 10-15 lbs,  but being in this direction vs the other one I have been in the last 2-3 years feels a 1,000 times better.

My "no sugar, wheat, dairy or processed foods" diet is working! (I have cheated a few times)

My 5+ pound weight loss in 2 weeks is without exercise too. I am really looking forward to when I can be active again.

And the best part is I am not really hungry. My body seems to do really well without all the allergen causing foods.

Surgery #2 is tomorrow. I am finally getting a very pesky neuroma removed. I figure I might as well since I am off work for 6 weeks and I can't be active. And then when I am all recovered I can really get back to doing the things I love!

Saturday, May 28, 2011

Training my brain to THINK like a thin person.

I started reading Judith S Beck, Ph.D's NY Times bestseller, "The Beck Diet Solution: train your brain to think like a thin person."

As a big fan of psychology I like her approach of using Cognitive therapy to help you change your eating behaviors by training you brain to think like a thin person.

You can use any diet you want and she has you pick a back up diet in case the first one doesn't work.

I am an RN, with years and years of dieting experience and along with my medical back ground,  I am pretty sure I know what I need to eat and not eat to be thin and healthy. The "diet" I chose is my own and I call it the Whole Foods Diet. No not the grocery store, but I am sure you could shop there, but just like it sounds, Whole Foods. Nothing processed. No wheat, no dairy, no sugar, no alcohol (except on special occasions). Only Whole or Natural foods. Fruits, vegetables, lean protein from grass fed, free range sources, couscous, quinoa and whatever else I can find.

My goal is to follow this strictly for 6 weeks while I am off work recovering from my surgery. I am currently on DAY 6 and I have to say it's going surprisingly well. It's not nearly as painful as I thought it would be. Of course I don't have my normal stressors of living and I am sure that is helping immensely. Which is precisely why I wanted to do it now.

With having this time off I have the luxury to plan my meals, sit undistracted at meal times, focus on my food in front of me and to eat as slowly as I can. It's amazing to me how much effort it takes for me to be conscious of my food. Eating unconsciously was one of my favorite past times.

On 3 x 5 cards I have 29 reasons why I want to lose weight and I read these cards at least 2 x day to reinforce why I am doing this. I work constantly at giving my self credit for staying the course and doing the best I can.

Each Day of the 6 week Cognitive course that Dr Beck has created you have a new chapter to read, short 3-4 pages and she has objectives for you to follow for the day. Simple easy to achieve steps.

Today, Day 6, I am to find a Diet Coach. Someone to keep me motivated, build my self-confidence, help me solve problems and keep me accountable. My sabotaging thought is that I don't want to impose on anyone. It's a lot to ask and I know people are busy. I didn't even ask my first pick, I made the decision for her, and decided she is too busy. My next choice was my husband Greg who jumped at the chance to help me. He is the most physically fit 50 yr old I know. He probably weighs less now than when he did when he graduated from college. He has a logically engineering mind and is an excellent problem solver. He should be a great choice.

So far I have to say, I feel great physically and emotionally. My body is not hurting nearly as much as it usually does (could be the rest also). Emotionally, I feel like I am starting to climb out of this hole I have put myself in. Like a deep dark well. And right now I am finding little hand and foot steps carved into the sides the well and I am slowly climbing my way out. We saw this show once, "I shouldn't be alive", and these 2 climbers got stuck in a crevice. One of them survived and they showed his painstakingly slow efforts to climb his way out with a pick ice and crampons. His will and determination saved his life. I would have to say it's going much easier for me. And for that I am thankful. My hope is my will and determination with save my life also. With a big family history of heart disease, diabetes, cancer and arthritis, I need to take the steps now to save me a life. One little foothold at a time.
 

Friday, May 20, 2011

6 Week Post Op Hiatus.

After years and years of dealing with stress urinary incontinence I am ready to take a risk and fix the problem once and for all.

Let me start by giving a "little" back ground information: I had my first bladder infection at the age of 3. It was very traumatic and I remember it well. I remember telling my mother over and over that I had to pee even though I had just went. I remember being distraught over having to be in the car on the way to the Dr's office. How could I be away from the bathroom that long?  To this day I have a mild sort of PTSD every time it starts to feel like I am going to have a bladder infection.

In my 20's, after years and years of bladder infections, I trusted a  urologist who "dilated" my urethra in his office. He said I had strictures which were causing the infections. After that I had to go home and sit in a bathtub with warm water to ease the pain and wondered if I would ever be comfortable enough to get out of that tub again. I sat in there for hours. The good news was the procedure dramatically reduced my infections.  What also helped, for those of you that might have this problem, was ALWAYS voiding before and after sex (no matter what) and wiping front to back. Such a simple thing to not introduce E. Coli into the urethra.

When I was 30, I was told I had an incurable condition called adenomyosis. The only way to cure my 2 weeks of back pain I had every month would be to have a hysterectomy. Not a nurse at the time and naive to what this would really to do me, I was ready to be pain free. I opted for the hysterectomy. Afterwards I discovered that without a cervix, my orgasms would never be the same and that without a uterus my bladder and urethra would drop over time. The pathology on my uterus ended up coming back as endometriosis, maybe not curable but at least treatable. They don't do hysterectomies now like they did back then.

In my 40's the incontinence was rapidly becoming out of control. I could not jump, run, laugh, sneeze, or cough without peeing on myself. As a nurse you hear and see all the horror stories of good surgeries gone bad. I was scared to death to have anything artificial put in my body. Erosion of my bladder or my urethra would lead to a life of constant and continual urinary leakage, not to mention infection, and smell! As a young vibrant woman, not an option for me.

I opted for a BURCH procedure done by a highly recommended surgeon in 2007. 5 days into my recovery with a foley catheter attached to my leg, I had to pull a drowning 70 pound dog out of our pool. I was home alone and dog sitting. I couldn't let my niece's dog drown. I just couldn't. The other mistake I made after that surgery was to start exercising right after my 6 weeks post-op period ended which included boot camp (jumping) and running. In hindsight I should've gave myself more time to heal completely. Afterwards I never was completely incontinent free but it was better than it had been in years.

Over the last 4 years I am pretty close to where I was at my worst. Tired of years and years of having this problem I sought advice from multiple experts. The answer is a TOT surgery. Transorbital Tape. From what I understand he is going to go through the top of my inner thighs and insert a piece of tape that my urethra with rest on. The tape will give it the support it needs to keep from dropping down and leaking. It's a fast 20 minute procedure. The recovery: lifting nothing heavier than 10 pounds for 6 weeks. As a nurse this mean no work for 6 weeks.

I didn't arrive at the decision lightly but I can honestly say I don't know what I am more excited about, getting my urinary incontinence fixed once and for all or having 6 weeks off work.

I have been under a lot of stress lately. I severely injured my neck last year which lead to a long year of uncertainty and limited exercise. My 4 kids have their own issues (good and bad) and as their mom, I get involved and try to help them as much as I can. My long time co-worker retired in January which left her position to me. I gladly took her position but it came with a price of more stress and responsibility.

So for me 6 weeks off work means having 6 weeks where I can focus my time & attention on me. I can read, meditate, get more than 6 hours of sleep, prepare healthy meals, do activities that don't require lifting, like scrap-booking and knitting. I will visit my grandma & my parents, water my garden, basically be more emotionally present in my life and my loved ones lives.

I love my job as a nurse but I won't lie, it does drain me, physically and emotionally. I am looking forward to this time of healing to allow my body to recover and my mind to recharge.