Life with Leana

Loving LIFE after Colon Cancer and with Lynch Syndrome

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Wednesday- 19th-There is no place like home! And boy I was so glad to be home. The ride home was rough- a lot of bouncing and bad roads. It’s lunch time so I opt for a sandwich. A lot less than I was getting at the hospital. No cheese- just bread- I eat the whole wheat white bread- lil mayo and sliced ham. Found out later no WHEAT! I eat about half of that. My tummy is rumbling before I ever eat. I rest. I have chicken noodle broth for dinner. I’m just not hungry and finding it hard to drink or eat. It feels like it’s just there in the middle not going anywhere. During this time I am still going to the RR.trying to snack on crackers and nibble on a banana- bananas are acceptable- ripe- lil over ripe is best. Now when I say I’m going to RR it’s liquid- but I know things are working and passing. So I’m not fearing a blockage. I’m feeling miserable – bloated- and like I need to throw up and would feel better if I did- but I’ve just had major abdominal surgery. I was cut from above my belly button to my pelvic region. They have dug, probed, tugged and pulled my insides and have 30+ stitches. I don’t want to hurt that healing process by puking. My husbands says”try not to throw up” really- I’m trying to avoid that- but belching feels better. I’m up and down and then I PUKE. Man do I feel better. I’m in the RR so the convenient place was the tub! It was green gastric stuff- just flowed right out of me like I was possessed or something. Man I can lay down and rest now. It’s after hours so we call the after hour number for the doctor. Dr. Patel says he will call something in and to revert back to just liquids. It’s midnight- we don’t have 24 hour pharmacy service. Probably having a reaction to the anesthesia. Well I suck on Popsicles at the advice of a dear Lynch friend who has also had her colon removed and has a little bit of trial and error under her belt. I proceed to throw up in the middle of the night – but not as bad. I didn’t even wake my husband up- just left it in the tub for him to clean –lol! Man does that stuff stink!! I’m thinking- did I come home too early??

Thursday 20- I talk to the assistant who says they want me to wait and see if things clear up with out medication. At this point I haven’t thrown up anymore . The doctor calls and says I’m not hurting anything by throwing up- and feels it’s a reaction to the anesthesia. If it persist they will get me something. My husband ask that they go ahead and call it in as it’s fixing to be the weekend and we don’t have 24 hour pharmacy where we live. Did I mention we are nearly 2 hours away and I don’t want to make that trip again?? No throw up Thursday.

Friday 21st-The following day I get some meds called in. By the time I get it – and take it- I’m already feeling the feeling again. I take one of the meds and immediately throw up. Not just one gulp but three times when you feel it all the way through. Man this hurts but again I immediately feel better. I let the assistant know (open communication via email- the BEST) and I inform him I wouldn’t be taking it if it’s gonna make me throw up. He assures me I’m not hurting anything internally if I throw up just make sure I replenish what I’m throwing up. I can’t drink that much fluid. I get ensure – no whey products- soy is fine- preferably ENSURE. I can taste ensure every time I stand I belch and taste it- yuk!! I can’t drink it. So at this point I’m feeling oh shit I’m going to get de-hydrated. They are going to have to put a GI TUBE IN AND PUMP MY STOMACH- the ride back to Dallas is going to kill me. Lord just please let this pass. Where are my Popsicles??

Saturday 22- pretty much the same. No throw up. Up and down and belching and feeling like crap. Still pooping and sipping broth and potato soup and Popsicles. Had my husband get me some pedialyte. I have this online group of wonderful ladies from all over the states I’ve met in person through different events through Colon Cancer and Lynch Syndrome events. They are helping me through this with advice and suggestions etc. They are wonderful!!!

Sunday 23- yea it’s pretty much still brewing. I’m feeling it again and think- I’ll try the other medicine. Immediately I throw up. WTH!!! Ok the gastric fluids are out- let’s start over with the first medicine (regalan)that is suppose to get the gastric fluid out via the intestine NOT THROAT- that I thought caused my throw up the first day I took it. Lo and behold it starts working. I proceed to call the on call doctor Sunday night/Monday morning early as I’m figuring I need to go in and per my friends advice- wouldn’t it be easier to go early in the morning hours when the highway isn’t so crowded? The doctor calls back and said he will consult with my doctor when she gets back and come up with a plan and get back with me. By this time I feel a tiny bit better- don’t feel the fluids building up but am not hungry or thirsty. I’ve lost 10lbs since I got home on Wednesday. I’ve already emailed the assistant so he would have the email when he gets in. I have NO FEVER- no bleeding, not hot to the touch and I’m pooping. All should be good??

Monday- 24-The assistant replies to keep taking the medicine every 6 hours and come in the morning to see Dr. Boostrom. I’m able to eat and drink a lil bit more and have a lil more energy. I might make it. No more throw up. I pretty much rest.

Tuesday-25 I wake up hungry- yes hungry. I cook 2 pieces of toast and eat one- but it tasted so good. I take crackers with me to the doctor appointment and mKe it just fine. The trip was rough but not as bad as the initial ride home. The doctor checks me out and things look good. She checked for a hernia- didn’t feel one- my incision looks good-I’m past wound infection stage. She says she doesn’t see it often but sees it. I’ve just had a reaction to the anesthesia and the stomach was building up quicker than what I was releasing- sluggish still- but all seems to be on the right track now. Still no lifting and no fresh fruits and vegetables. No problem. Continue the medicine every 6 hours. I have faithfully taken it every 6 hours- setting an alarm to get it faithfully during the night. I do not want that again. During all this I was still trying to walk my laps around the house- down the drive etc. for the most part I did- there was probably a couple of days I did good just to walk to the potty. I can say this phase has past- on to the next!! That in itself is too another story- I’ll share it next!!

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Hospital Stay

I was in the hospital Monday 17th until Wednesday 19th. Not very long for major surgery and having your colon removed. After surgery I had a catheter, IV and leg pumps on. The GI tube was removed before I woke up. I was told I would be up and eating the day of my surgery. I didn’t believe it. I had a regular meal brought to me for dinner. Not what I should have had- I had a couple of bites of the chicken and zucchini.and roll of course. I didn’t touch the salad- I knew for sure I wasn’t suppose to have that. IF ANYTHING I WOULD DEMAND A LIQUID DIET AT FIRST REGARDLESS OF WHAT THEY BRING YOU. I DONT BELIEVE THE DOCTOR IS FULLY AWARE OF WHAT IS PREPARED AND SERVED. Dr. Patel came by night one- didn’t see Dr. Boostrom until day 2.
I started getting Coumadin shots the first night as well as some eye drops and a patch for that scratched eyeball I got after surgery. Apparently when coming out from anesthesia I rubbed my eye too hard. My glucose was 167 and was given insulin. I’m not diabetic but for the healing process all levels need to be in line- or something to that matter.
Didn’t sleep real well although I wasn’t in pain- my pain was managed very well. I think I had just rested so much during surgery that I wasn’t sleepy- LOL- is that possible?
I walked a lil bit- not far and pooped night one!! Amazed at what the body can go through and start functioning again so quickly.

Day 2
Dr. Patel and Dr. Boostrom was by early. Everything went well with the surgery. Did a lot of scar/adhesion removal. My small intestines weren’t kinked or twisted but were adhered to my liver with adhesions. Tucked back under my liver- explains the pain I was having in that upper right quadrant.
Spoke to the dr about my meal I received and she had the nurse change that to a soft diet instead of regular. It was still more food than I expected to have – I nibbled a lil on the stuff I liked and avoided the other. Steven of course took the deserts I didn’t eat for his snack later.
They removed the catheter and leg pumps. IV fluids disconnected but the ports were left in. I had one in each arm. Still having blood sugar monitored and insulin as needed as well as Coumadin. I continued to walk around the nursing station. The first morning trip resulted in poop running down my leg and me putting it in fast gear to get back to the room. They got me some pads to wear when I walk until I got that under control. Didn’t take long I just didn’t know that would happen. With every thing disconnected it was easier to get up and walk and go to the rest room. They provided barrier wipes to protect the tooshy! This is a must! I also got some cream for my eye as it was still hurting to where I couldn’t hold my eye open. That was all that was needed- a lil ointment.
Dr Boostrom was by again and said if things continued well I would go home the next day. YIPPEE.

Day 3 – Dr. Patel comes by. Removes my bandages and checks the abdominal block thing- they are nearly emptied. I’m going home so he proceeds to remove the needles and huge band aids holding them In place. OMG- that was bad. Said everything was looking good. Shortly after Dr. Boostrom is there, checks me out and says all looks good. Verbal instructions were given for taking care of incision. I had 30 + stitches. All dissolvable. She stated I’ve had several people in my abdominal area over the years and I must take it easy and recoup. No lifting more than a gallon of milk for first 2-3 weeks. Pain meds were given and prescriptions written. It didn’t take near as long to be discharged as it did to get me in a room.

Now for the 2 hour ride home. Extra pain med given and I make it home. I45 is horrible not to mention the road construction around the hospital.

To recap the hospital stay- eat soft food regardless, walk- ASK FOR DISPOSABLE UNDER WEAR AND PADS- use the barrier wipes, drink your liquids- pee and poop and you can go home. Don’t push to leave before your ready- because even when you think your fine- things can change by the time you get home. That’s a later post.

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PreSurgery-Post Surgery notes

I had surgery March 17, 2014 at Baylor Hospital Dallas. Dr. Boostrom was my surgeon. Dr. Patel assisted. I really liked Dr. Patel almost as much as Boostrom.

I checked into the hospital at 5:30 am. Once in my pre-op room I was given 2 Fleet Enemas. Really not bad – there was no other pre-surgery requirements. Nothing to eat or drink after midnight. I was given 2 Tylenol, 2 flexarel and 2 Celebrex.

They took me up to pre-surgery room where things went pretty fast. I had so many medical professionals in and out of my lil curtain room. The anesthesiologist and his assistance explaining my drugs for the surgery. Nurse couldn’t get an IV started so that was done when I got to the surgery room. Everything was in order and ready to go. I did receive some acid reflux medication before hand as I normally take that as I also get sick when I have an empty stomach. All areas seem to be covered.
My husband was with me- the rest of the clan hadn’t made it to the hospital yet. I’ll have to see them when I “awake”.

I get in the surgery room and let them take my glasses at that point. I wear night and day contacts and of course couldn’t during the surgery- so I had my glasses. They tried taking them before hand but I can’t see ANYTHING without them. After seeing Dr. Boostrom and knowing I was in the right place I turned them over- LOL.

The anesthesia assistant was still trying to get an IV started- was hurting me- they told me to just breath into the mask and I wouldn’t feel it- I inhaled a couple of times and that’s all she wrote. I was out.

I awoke with an abdominal block. Pain medication inserted into the abdomen via two needles – one on each side of the incision. They stayed in until I was released. I was given Tylenol and Ibuprofen piggy backed every 4 hours as well as tramadol by mouth and injections as appropriate. I woke up thinking I’d been cut down and across- like an anchor when in reality I only had the same incision as the previous two surgeries- from above navel down to pubic- about an inch further than last surgery. Massive adhesions in the abdominal cavity was very painful. The nurse was nice to give me something for that. My doctor tries to stay away from narcotics as they cause constipatin. Her means of pain management results in quicker recovery- quicker release. I also scratched my eye during surgery and it was bothering me quite a bit!

During my surgery I had a few family members with my husband. I think it was about 4 hour surgery. Steven, Shane, Tera, Dillon , my Mom, my sister Carmen and my BF Anita. They all came back to recovery 2 at a time to see me so they could head on home with the exception of Steven and my BF Anita. Did I mention Anita brought breakfast tacos for my family while they were waiting on me? So sweet. Later our best friends Liz and Mark were there. They visited for a while. I was feeling great under the influence of the surgery meds still.

More to come in regards to meals and my days in the hospital!!

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Every Day is a New experience

Yesterday I walked a little further than normal and swept the kitchen floor! Maybe that was too much. I’m a very inpatient person- I hate wasting time on “nothing”. I keep reminding myself it’s only been 2 1/2 weeks since major surgery. I must be patient. I’m back on my pain pills and just taking it easy today. I’m a Bed potato today instead of couch potato. I did stop taking my Regalan so I’m hoping the gas/pressure pain will subside. So far so good.

I did receive a call today from my surgeon- checking in on me to see how things were going. I filled her in on everything and she agreed I should stop the Regalan- ween off it. I was down to once a day so I’m hoping this will fix my issues. She also informed me I will need to call the office if I need anything as her medical assistant “Josh” has moved to another position. He was my go-to person via email. It was wonderful,the direct communication I had with him- he was good about getting with Dr. Bostroom and getting right back with me. I hope they find an adequate replacement.

All in all LIFE is grand and I love it!!

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No —–Mo——- COLON

Well I’ve had my surgery. I had a Total Colectomy and an ileorectal anastomosis- they removed what was left of my colon and connected my small intestine- to my rectum. I had massive amounts of scar tissue removed. My previous surgery left me with a restricted opening from my small to large intestine. This was causing me distress. I had been having issues in my upper right quadrant and lower abdominal area. Test had revealed the scar tissue in my lower abdominal area although test did not reveal an obstruction I had classic symptoms of an obstruction. This went on seriously for a year- bit probably since my second surgery in 2010.

WHY REMOVE MY COLON?! Simple- I’m Lynch- I have had colon cancer @ the age of 36. My dad has had colon cancer twice. My risk of a second colon cancer was decreased from 60-80% to 0%! Yes- seriously. No– mo— colon- no— mo— colon cancer. That makes me happy.

https://www4.mdanderson.org/pe/index.cfm?pageName=opendoc&docid=2133

Now yes- Lynch does affect other areas of your body- the second are for women is gynecological – and I had those removed before I knew I was Lynch due to other medical issues. I consider myself good to go!!

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Exploratory Surgery

Well I’m going in today for surgery. I hope Dr. Sarah Boomstrom is as good as everyone says. She comes highly recommended and she and her (male) nurse are very confident and are sure they are going to fox me up. I have issues with my reconnect since my colon cancer surgery in 2000. I had a second surgery in 2010 to fix an obstruction. I don’t thin things were done correctly at that time. Nobody’s fault I just think more could have been done. Needless to say I have massive scar tissue and adhesions and pain at my reconnect. Hopefully after today’s surgery I’ll be good to go for a while.

Headed that way. My family clan will be here shortly. Safe travels to them.

I will post more when I’m able.

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Great Nephews

Kept two of my great nephews Thursday night. We had so much fun. Boyd just turned 7 and Brody is 4. We played outside, went and saw the baby cows, cooked hot dogs, swam in the hot tub- lol- and when it got dark we played with mega sparklers left over from Shane n Haley’s wedding. Of course when you tell a child not to touch it it’s hot- what do they do- yep Brody got burned on his wrist. A lil loving and ointment and he was much better. Ended our night with Toy Story. Friday we went to the movies and saw Lego. It was good and the boys had a great time. Love them boys so much!! They are definitely boys- so miss the lil kid noises in the house on a daily basis. Mine are 30, 28 and 21. No grand kids YET! Just listening to them two lil ones in the back seat coming back from the movies, talking arguing talking laughing – brought back so many memories of my kids when they were little. Miss those days! Where has the time gone?!

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Lynchies MD Anderson visit

Well we had another visit @ MD Anderson Monday for my Lynch son Dillon. This was an additional visit due to the amount of blood found in his urinalysis during his last visit for his screenings. This visit he had a Cystoscopy and CT UROGRAPHY as well as more lab work. Still waiting on his lab work but the other procedures were clear. No cancer related Lynch issues. So we just watch his urine. He’s had this issue in the past before knowing he was Lynch and they never found anything then either. So we will take this good news and just work on staying hydrated. LOVE MY LYNCHIE!

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Happy Colon Cancer Awareness Day

Yesterday was the official “Dress in Blue” Day. A day to show your support for those with colon cancer- present and past. It’s also a day to bring awareness. It’s simple- colonoscopies save lives. If you are fifty or over OR have a family history (I’m Lynch) or have symptoms – regardless of age or family history- then you should be getting a colonoscopy- NO IF AND OR BUTTS ABOUT IT!!

Colonoscopies aren’t what they once were. There is not a three day clean out process. Yes, the clean out is the worse. But the procedure itself is painless- the only pain is the stick from the needle to get your IV started for your DRUGS! Your out and then awake to “what happened?” I had a sig flex last week in preparation for upcoming surgery. The anesthesiologist said by the time we count down from 10 you’ll be out- 10, 9, 8 – what happened? I was out.

Most insurance will pay for a screening colonoscopy. Check with your insurance and doctor office. Even those with high deductibles- there are options. Just make sure it’s noted as preventive- all insurance companies are different so be sure and have the doctors office check before hand. Now if they find a polyp it can chance from preventive to whatever they call it and insurance will pay differently. We were told this with my husbands scoped a couple months ago. Luckily he had no polyps- makes no sense at all- gggrrrrr

BUT paying for a colonoscopy is better than paying for cancer treatment. Been there done that. Even with insurance it adds up!

So let’s all wear our blue the rest of this month and get scoped!

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What a ride

Well it’s been an adventurous couple of weeks. This past weekend we celebrated my 50th in Mardi Gras! My husband planned the trip. It was wild needless to say. I think he was trying to rejuvenate my wild side. I did let loose and had a GREAT time on Bourbon Street. Would I do it again? HECK YEA! I love living life! Even if we were in bed by 10pm- what does that matter?

The weekend before was spent with my sisters and best friends celebrating in Dallas at the Stock Yard and Grapevine area! February is over- March is here! And with March brings Colon Cancer Awareness!! Be sure and wear your blue in recognition and GET SCOPED!!

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