August 12, 2008 ~ Christmas in August

Monday I returned to work.  I burst into tears when I saw my cubicle. My boss warned me I might not get much work done as everyone was excited about my return.  She wasn’t wrong.  My crazy, lovable, darling co-workers wrapped up my entire cubby with tape, bows and Christmas wrapping paper. 

Everything: each pen, pencil, my computer, the mouse, my silverware, my coffee cup and a few real gifts. 

 Notice the duct-taped exercise ball on my chair, ‘the pregnant chair’, its called.  

Then, at the entrance to our little office suite, they taped down yellow-brick-road arrows to show the way to my cubby in the event the surgeon took out my brain instead of colon.  I laughed and cried all at once.  And I am working on payback as Crystal is pregnant and she will be gone for many more weeks in February!  Hee! Hee!

Once again, I have lagged on my entries.  I am coping well.  Returning to work is such a great thing with today as my second day.  I was able to take the three flights of stairs up today without feeling winded.  My body amazes me continually.  I missed only twelve days work which is less than I thought.  This is good as I will need the time for the pull down surgery on October 20 and recovery after that. 

I was quite anxious about returning to work and wondering what to wear and if the bag would show.  I am not able to forget about it as I have learned from others that they do.  I am still always checking.  I packed myself a little kit for the bathroom and that gives me great sense of security.  In my kit I have: deodorant packets, scissors, water squeeze bottle, and extra pouches.  I am going to add in some wet-wipes.  I had a heck of time finding a small enough squeeze bottle.  I finally purchased one that was filled with saline solution for the eyes.  I emptied the solution out and popped out the little dropper thingy and voila, squeeze bottle.  I carry the kit with me every time and stop at the sink and fill it with warm water.  Its perfect.  I make use of the handi-cap stall and the extra hooks.  So, that is not bad like I thought it would be. 

I have been feeling a little depressed in spite of my positive intentions and I am not sure why.  The weather has been a bit dreary for summer and that could be part of it.  Generally, I tend toward a serious outlook anyhow.  But I really want to feel sunshiny!  How does one go about that?  If you have any ideas please let me know.

Eating: I am eating about two meals a day.  Thats about all I can get down before I feel terribly full and then the appetite just goes away.  Its really wierd.  But I try and make what I eat really count.  My new favorite thing is a meat burrito.  Here is the recipe

Simple Ground beef Meat Burrito

4 oz. lean ground beef

1-2 thin slices swiss cheese

1 whole wheat tortilla

1/2 or 1 c. dark green salad greens

salt, pepper

basalmic vinegar

Heat cast iron skillet on medium and add meat.  Saute meat until well browned.  Lay the cheese slices on top to the meat and then the tortilla on top of the cheese.  Turn off the flame.  Place a heavy lid over the tortilla allowing it to steam and melt the cheese.  (About one minute).  Then remove the lid, lift up the tortilla, cheese will stick to it, lay it on a plate.  Scoop out the meat on top and then salt and pepper to taste.  (Extra salt, remember!).  Cover with the salad greens and sprinkle with a nice balsalmic vinegar.  Wrap it all up like a burrito, sit down and and enjoy

Just want to send out good thought to Living with(out)uc  as she is having her surgery on thursday.  I hope it all goes well!

Wednesday, August 6 ~ 13 Day Check-in at the Docs

They took my staples out this morning, and marveled at a how good I am doing. The surgeon teased me about how soon I will be belly dancing again.  I mentioned the light headedness and dizziness and they poohed all that as normal symptoms after surgery.  I insisted on having my hematocrit test just to be sure.  I have been taking iron, eating protein heavy foods, which seem to help. 

It’s been so many days since I last posted.  The adjustment has been daunting.  On Sunday morning my girlfriends Linda, Mary and Lisa came by to take me to brunch.  Instead, they found me flat out on the sofa with low blood sugar and overall general lethargy.  They pumped me full of bananas, protein shake and liquids.

After about an hour, color returned to my cheeks and I was revived enough to go on out to brunch.  At the insistance of Linda, they placed us at the top of the waiting list because, me the poor invalid, could not stand long.  It was terribly sweet.  We had a feast.  I ate about one quarter of my breakfast and brought the rest home with me.  The reason I had let myself into this bad state was not eating.  Fortunately I have been okay since then I as went to Whole Foods and bought a bunch of prepared stuff to have on hand ready to eat. 

On Monday, Dana, another dear friend had me over to her shop and we had red lentil soup, fresh bread and hummous for lunch.  Then we took a whole big walk around the block with Tipper her dog.  I think I disappointed Tipper because we just passed by the park and didn’t even stop.  It was a pretty wimpy walk.   Keeping good food in me really helps though.

Tuesday evening was our annual block party and it was really nice.  I helped set up by making no parking signs, and 12th Ave NE was blocked off from NE 55th Street to NE 56th Street.  It was not an ugly summer evening.  There were three bbqs going and I steamed some wild salmon on the grill with polenta.  Yummy!  There were lots of children riding their bikes and the adults really enjoyed some good food, wine and conversation.  That was fun, and I wore out by 8:00.

The painting preparation continues in earnest on our house.  They are doing an amazing job of hand sanding and clean-up as they go.  I wonder when the painting will begin, but I am in no realy hurry and the weather is thoroughly cooperating.

Saturday, August 2, 2008 ~ Coping

Yesterday was the first day I spent mostly alone since my surgery on July 24.

It was difficult, and I spent the morning weeping uncontrollably. I spoke with my sister last night on the phone, and we both agreed the thing that makes us sad is the permanance of it. She had a hysterectomy several years ago.

It’s odd to have something taken from my body that I’ve carried all my life.  Sigh!

I am not sure what all the sadness was about, but after about twenty minutes I was tired and so I got up off of the couch and went to empty the Bag. Ugh!

I decided after a long hot shower I would go to Taco Time and have a soft beef burrito and then go to the lake for a walk. It was not an ugly day. Not a cloud was in the sky and the wind was a balmy breeze. I took about three bites of the burrito and tossed it. However, Taco Time has this fabulous soft crushed ice for their drinks and I took a large cup filled to the top with ice. I went to the lake and sat on the sand.  I waded in the water.  I watched the ducks.

I was hoping to just get some blood rushing through my muscles to counteract my restless-leg-syndrome. However, I learned from J-Pouch that this could be a result of anemia. Makes sense.

I walked along the path around the lake and stopped occasionally to sit on a bench and read my book.  It was really nice until the sun eventually went behind the clouds and it began to feel downright chilly. I headed back to the car. I had a nice time in spite of myself.

I talked with my sister about coping day to day, and she, like many others reminded me that this is temporary. However, I struggle with that becuase I believe in living fully in the moment. But this moment is not fun! I don’t like this moment, this healing, this recovery, this coping.

So, how do I reconcile?

Distractions help. Walk the lake. What else? Clean the house, make some plans, read good books. Listen to good music. Try not to feel sorry for oneself. Ugh, as me and my sister-in-law discussed one day, it’s really a challenge to stay cheerful. There is alot that simply is not cheerful. But, I am going to try. I will put one foot in front of the other and plug on. There is so much I have to be thankful for:

My husband loves me;
My beautiful daughter adores and cares for me;
I have good insurance coverage;
I have a good job that supports;
People at work genuinely care for me;
I live in a big old funky house that is ours;
House is getting painted and new wiring this summer;
I have terrific friends who will bend over backwards to help me;
My city is magnificent and fun;
I can walk everywhere in my neighborhood and I never have to drive;
I have everything I need;
I know all my neighbors;
Oh, and, I have fabulous legs!

Thursday, July 31 ~ Labor of Love

My dear sister-in-law has been with me the past three days and two nights. She has cooked, cleaned, sorted, putzed and waited upon me hand and foot. It has been an amazing display of love, patience and generosity. I am eternally grateful. Thank you Leslie.

Today is one week post-op. I am eating everything, anything, with no problem. I eat small amounts of things and it all seems to go down okay. I have a little bit of repulsion toward soft mushy foods. This will pass, but I haven’t done my protien shakes in a few days. My insides feel odd. There is no painful cramping like before and no sitting on the toilet for hours. Instead, this odd gaseous kind of feeling sort of in my tummy. Cannot determine if it is indeed gas or my tummy or what. Its just a little nauseous and soda crackers seem to help. I don’t like the iliestomy bag hanging down. It always gets a little puffy and poofs out. Plus, Puffer is noisy! Ugh! I have decreased the Alleve now and seem to have no pain at the incision site. Amazing.

Thank you Mark and Megan for the shout out! Yes I have officially joined the No Colon Cardholders Club!. Hey, but what do you think about ” ; ” ??? I’ve gotten lots a jokes about that as well! LOL!

Wednesday, July 30, 2008 ~ The Story of Puffer (My Stoma)

Not sure if you caught it but my stoma is named “Puffer”. Puffer came to be when the the medical staff kept asking, have you passed gas? Well, no. How could I have, with no colon? The first sensation I noticed early on in the wee hours of the morning, while still dark I felt dear stoma going ‘puff, puff’. It was so cute, just like the little blow hole of a whale. Puffer!

On my first nite home, I explained the whole operation to my dear (young adult) daughter and husband. Although they understood it before, now that it was over and actually done, they had many questions and misconceptions. It was a terrific close family moment, where we all got our fears and concerns out and things felt very relieved afterwards. I actually drew this cute little picture of my belly, belly button with incision down below, and stoma “Puffer”. The picture really helped.

Today is day two at home. I am off the narcotics now and the pain sensations are really just that - odd aches and movements deep within the tissues of my abdomen. Puffer is emitting product nicely. Have had to discharge it several times today. We are developing an intimate relationship. Its difficult. I am not real comfortable yet with this tender close knowledge of my body’s waste. It makes me not want to eat. Also, my appetite is all wierded out. Not sure if its the drugs, or if I don’t yet have the right balance in food or what.

Food eaten today:
Half slice sourdough toast with scrambled egg;
orange juice; apple sauce; some saltine crackers;
hot tea;
tiny quiche and iced chai soy tea;
1/3 almond croissant;
small salad with grilled chicken;
few bites fried potato;

Tuesday, July 29, 2008 ~ Healing, recovery, being at home

I arrived home last night about 8:30 pm. I slept through the night til about 8:30 this morning. I feel good. I have some abdominal pain but am still sedated with Percoset every six hours. I am up walking around. Am currently eating some mushy out-of-the-box mac and cheese. Have no idea how it will process, but it’s helping with some slight nausea I was experiencing. I have been so anxious to get here and post. There is so much I want to share.

Here is a brief synopsis of my days in the hospital:
Thursday, Day 1 Surgery
Surgery successful; Stood up to brush my teeth; slept the rest of the day and night.
Friday, Day 2 Post Surgery
Walked the hospital hall way with assistance about three times; moved to a new quieter room; groggy still; stopped pushing the pain button;
Saturday, Day 3 Post SurgeryWalked the hallway unassisted; liver produces green bile (IMPORTANT accomplishment after surgery!); had a melt down with reality at one point. However, the resident doctor Jennife was terrific in her positive upbeat support. Reminded me that “My Ulcerative Colitis is gone forever!” Upgraded from clear liquids to full liquids; slept most of the day when not eating or walking; named my stoma “Puffer”.
Sunday, Day 4 Post Surgery
Walked the hallways alot; met with docs - chief resident and general anathesiast; had tapioca pudding; The two docs conflicted over when to remove epidural. This seemed more like a power struggle between them rather than what right for the patient. Not good. I ended up being on pill meds and the intravaneous.
Monday, Day 5 Post Surgery
Epidural and catheter removed in the morning. What a relief! Docs showed up in the afternoon during my hallway laps to say I could go home if I wanted. Fine by me! After four nights, going home. It felt right to me. I called Tad.

Coming Home!

TAD posting:

Carmen is coming home this evening (Monday night), earlier than I thought.  So that phone number for her room is no longer good.

More later.

Sunday night: improving

TAD posting:

I visited Carmen at the hospital Sunday evening until around 10:30 PM.

When I came in she was asleep.  She had been passing in and out of consciousness all day, and told me on the phone earlier that this was because of pain meds, which are still being fed through the epidural.

They were hoping to remove the epidural, but the anesthesiologist intervened.  The nurse had already given her oral pain meds because of the switch, but then had to hook her up again, so she was really dopey.

My mom was visiting earlier, brought Allison’s laptop so Carmen could post, but she was too out of it, and also couldn’t connect to the hospital’s Wi-Fi network.

I tried to fix it, but it required Admin privileges, and Allison has that thing locked up tight, and we couldn’t do it with her mom’s user account.

I connected with my laptop, but Carmen was too out of it to write anything.

Carmen may come home Tuesday.

More later.

Carmen moved down the hall

This is Husband Tad typing, from my bunker in an undisclosed location.

Carmen was in 1082 at the hospital, at the end of the hall, and was bothered today by construction noise.

They’ve moved her to a nearby room, 1078.  Her new phone number is 206-341-1078.

Resting peacefully

TAD (Mr. Carmen Cook) typing:

I’m sitting with Carmen in her private hospital room, 1082 at Virginia Mason, after 9 PM on Thursday.

The surgery lasted three hours, and the surgeon said it went very well because she is in such great physical shape.  Until her flareup a few weeks back, she was working out at the Y every day, going to Pilates three times a week, attending aerobics classes, and recently the Y certified her as an aerobics instructor.

She asked Dr. Thirlby to please try to leave only a small scar, because she is a dancer.  Or if not small, something she could decorate with a henna.  He was able to do it all with just a tiny incision.

I titled this post ”Resting peacefully”, but she is starting to get feisty.  She is very weak, and has one of those way-cool pain management systems with the More-Dope button resting in her right hand.  Any time she wants, more opiates!  It is hooked to the epidural space inside her bony spinal canal via a catheter.

Earlier with the assistance of her PCT I helped Carmen get out of bed and stand, her first time.  She was very wobbly and weak.  We slowly moved to the sink, tubes trailing behind, where I helped her brush her teeth.  Then back to bed, and she asked me to wash her whole head with towels soaked in cool water, which she found very comforting and refreshing.

She just said, “It really feels different down there!  I feel lighter!”

She told me they may release her on Monday, so she probably will not spend 6-8 days here.

Tad