Wednesday, June 24, 2009

Onward and Upward

The smile truly has an awesome positive power. Clem's face has finally remembered how to smile again and all the energy around us has changed. I noticed yesterday that not only was he smiling he was actually laughing from time to time and not just at me. It seems that his digestive system is beginning to act relatively normal and the pain and urgency that he has been experiencing has subsided. I think he was afraid to mention it at first but now he is celebrating in the almost normal experiences taking place inside his gut.

As I have mentioned before the Doctors tell you little bits along the way. First they say, "We think we can cure you by cutting you up, nuking you, and injecting toxic chemicals into you." Then they say, "We think we cured you but things may not really work right again and you may elect to have an ostomy because it will just be easier." I heard the Doc say this and Clem heard the Doc say this but we never discussed it or accepted it as a possibility. Yet last week I suspect that Clem was a little bummed because he wasn't working right and he didn't know if he ever would again. He has already lived with the ostomy thing and really didn't want to go back there but there does come a time.

His step now has a little spring in it and his energy is tinged with hope again. It seems that his confidence that a normal life is still possible for him has returned. I too have been able to rip all the nasty negative spider webs away from my subconscious and join in on the trek onward and upward. His smiles have always made my heart sing.

Thanks to everyone who gave us a punch in the arm last week when we were struggling. Just wanted you to know how much it meant and that we are better and back on track again.

Saturday, June 20, 2009

Polyester Moo moo's and diapers

I don't like to post when I'm not feeling well or down because I learned a long time ago that nobody wants to hear about YOUR "stuff". I can't tell you how many times people have asked me about Clem or myself only to listen long enough to segue into their own saga which of course is much worse. During the course of Clem's illness this blog is the place where I have verbalized my feelings the most and I think it could be because you guys only comment with words of encouragement and hope. We both need that so much right now.

We have spent most of the week in silence. Negative thoughts have been running around in our heads and our dreams. Night time has not been our friend. I have been restless in my sleeping and Clem has had all sorts of foreign signals coming from his newly reorganized body which have caused him to visit the bathroom over and over until the early morning hours. I am unsure how we got here but we have both been in a bad head space. I feel horrible because I haven't been able to be there for Clem this week. Oh I have cooked for him and done the laundry and made sure he was not in an emergency situation but I haven't had the energy to give much more. He has felt terrible one minute and fine the next and basically this is just another bad patch that he is going to have to wade through...again. His face has been full of pain and frustration and I can tell that he is sick and tired of being sick and tired. I don't blame him.

We are now alone in our house. Jessica, Nic, and Adley have moved out into their own place near Alex and it was great to see them so excited to jump out on their own. I think they stayed longer than they had planned just to support us but as Adley grew larger the house grew smaller and it was time for them to seek larger accommodations. We will miss them and the experience of helping them start their own lives will be a memory that we will always hold dear. There is a peaceful silence around the house that I have missed and I am hoping that the slower pace will give us a chance to recharge ourselves. We have both been cleaning and reorganizing as energy has permitted but our hearts just don't seem to be into much.

Wednesday we went to return some unused ostomy supplies just to get out of the house. The trip was very quiet and because I was driving, Clem examined the bill boards, businesses, and people that we passed with a critical eye. "We are circling the drain" he said while staring out the window. "We as in you and I or we as in humanity?" I asked. "You and I. You are on the verge of wearing polyester moo moo's full time and I am on the verge of wearing diapers." He looked at me and grinned then said "Isn't that some shit!" That comment was the "funny highlight" of the week for us. I for one have decided that if I am going to be destined to life of brightly colored moo moo's then I am going to have an awesome pair of cowboy boots from Mexico to match and a beautiful straw hat. I have no idea how he will accessorize his diaper.

Anyway, that gives you a little idea of where we are right now. I actually had a few moments of weeping this week that helped my attitude a bit but I am still topped out with the build up of stress from the last year and my body is screaming at me to let it go. Clem's body is screaming at him too. His calm resolve has turned to frustration and anger at times and he so deserves to have those emotions. Unfortunately they suck away what little energy he has right now and all those mantras about the bright light at the end of the tunnel and tomorrow is another day are just pissing us off right now. We deserve to be negative and just like everything else we do we do it whole hearted so this week has been bleak and dark and a huge struggle just to hang in there.

With that said, Clem is improving. We go back to the Doctor Tuesday to start chemo again. Two more months of that and his therapy will come to an end. I thought I had a handle on all of this until this week. I'm a realist. I know that life is not fair. I know that sometimes life really sucks. And this week I learned that sometimes it is okay to just be pissed off about that. It doesn't change anything but its okay.

SIDE NOTE: The correct spelling for this traditional hawaiian, flowing and colorful woman's dress is actually mu'u mu'u (correctly pronounced moo-oo moo-oo) .

Monday, June 15, 2009

A Dirty Wound

Home at last! Clem here, with an update on how I am and where I'll be going next.

The "take down" surgery went quite well, and I guess you've been following along with all that it took in the hospital to get my digestive tract working again. Let's catch up with what I've learned today:

An ileostomy repair leaves what they call a "dirty wound." I suppose that's obvious, with fecal matter right there in the hole and all. *yuck* In order to deal with that, the way they close the wound is very unusual. They stitch the holes in the intestine and drop it back down inside. Then they stitch the holes in the fascia, but they leave the wound in the skin wide open! Yes, at this moment there is a 3" hole in my side, through which I can see scary-looking guts and stuff. Ok, it's not really all that scary, but it's definitely a change from the neat, glued-together scars that were there to greet me upon waking up in the past. The wound will stay open like that until it heals up and closes on its own. I can shower with it just like it is--let the water run right over it. Wild, eh? There's never a boring moment around here.

It keeps getting better: since my large intestine has been unemployed for the last few weeks, and handled roughly before that, I can look forward to a little touch of colitis. (Sing Elton John's song, "...the girl with colitis goes by..." In other words, difficult-to-control, very watery stools for the next few weeks. If I come to visit, don't seat me on the good furniture.

Just kidding! I hope... The doctor asked me this morning if I'd had any "accidents", with a look that suggested he already knew the answer and that it would be an embarrassed "yes." But no! So far, so good, I've been able to keep things where they belong, and I'm really happy about it. He said that I would have a smaller than usual section of the intestine to collect stool, but that it would get better with time. The part that's doing that job now used to be a long way up the line, so it's not as elastic as the original equipment had become. "Increased frequency" is a relative term, though, and even if I'm in the bathroom 10 times a day that's still half what I was dealing with when there was a huge tumor stopping up the plumbing.

Well, that's more than you ever wanted to know about me, isn't it? Me, too! I have learned so much about anatomy and what is possible that I am amazed every day. Now that I've walked a bit in the shoes of the folks who have an ostomy I am humbled and encouraged by their dignity and perseverance. As for the other people I see in the hospital, they are a constant reminder of how lucky I am and how easy I have it. Frankly, I wouldn't trade with a one of them. The inspiration that I get from them keeps me going every day.

Finally, I'd like to say more good things about the staff at Memorial Hospital. I've been a guest in their facility for three extended stays now, and a host of shorter visits, and the people there have been fantastic. Every one of them, from the janitor up, has been polite, concerned, respectful and they have gone out of their way to maintain my dignity and humor. I'm going to do something nice for them when this is all over.

Cheers,

Clem

Sunday, June 14, 2009

Back on the Juice

Long night in the hospital. Clem woke me up at 2:30 to help him get to the bathroom and the rest of the night he spent in agony going back and forth attempting to interpret the signals coming from his gut. Things are slowly moving through but he has developed a common issue that the Doctor referred to as an ileus. Basically it means that his intestines are in shock from the trauma and are sluggish. Today he is back on liquids only and is playing the waiting game again.

Fortunately I am not playing the role of the Nazi today. He has this cute little nurse that has cracked the whip on him and given him the schedule. Walk, nap, and drink. When I woke up this morning or should I say mid morning Clem was sitting in a chair and had already walked down the hall by himself and the nurse assistant was making his bed. I think this is the first time anyone has made his bed in the hospital besides me. I could get used to that.

I am hoping that this is the last time that he has to suffer like this. These last two surgeries have been a lot tougher than we both anticipated. Hopefully by tomorrow this phase will have passed and the Doctor will come in and release him. His dressing still has to be changed which should be interesting. There are no stitches just packing in the wound. The Doctor plans to take all that out and then put a small dressing on the site which will heal by itself.

He is quietly napping now after hitting the morphine pump to send him off to la la land. He is so funny when he wakes from the morphine stupor. In the recovery room he told me that he had had brillant thoughts while under the influence of the drugs but when he woke he couldn't seem to remember them. In other words, morphine makes you think you are brilliant. Now that I think about it Clem thinks he is brilliant all the time. hmmmmmm Just one of the reasons why I love him.

Saturday, June 13, 2009

So far...so good

Clem here. It's early morning on the south wing, and our east-facing window is filled to bursting with all the sunshine in the world. It wakes me up every time, though Pam seems to find it the most soothing soporific ever.

The operation seemed to go well, though we'll only know that over the course of the time I'm here, the next day or so. Last night my gut had not started working yet. It's a feeling that I remember well from the last visit. Any food (a mouse-bite of cracker) or drink (several sips of Sprite) that I ate went down well, but then just sat there in my belly. After an hour or two of that, it got bored and came back up to see what was going on out in the barf pan. Vomiting is something that I'm getting good at, so it's "better out than in" as Shrek says.

This morning things appear to be going a little smoother. Over the last two hours I've eaten a whole graham cracker (3x4cm in size) and a small cup full of water. Breakfast just arrived! Add to that some chicken broth, jello, Italian ice, and a bit of apple juice.

Pam has her own illnesses going on as well. I offered to trade places with her, and she almost took me up on it! Nothing dire, just a little back pain (from the chiro-quack-ter's adjustments) and a minor infection. Give her a little of that healing energy, too.

That's about it around here. Once again, we're in a lovely room and the staff is fantastic. I've not been in many hospitals, nor for very long, but this one is the best that I've seen. I will write them a really glowing letter when I get out of here.

Thanks for listening,

Clem

Friday, June 12, 2009

Clem is no longer packing

Here we are again. Different room but same stuff different day. It was a long day too. The surgery started at 12:30, finished around 3:30, and we got into a room at 8:00. It was a busy day on the surgery floor. The Doctor reported a successful mission and Clem no longer has an extra orifice protruding from his side. I for one am thrilled. I am pretty sick of people looking at us every time that thing "went off". Clem would always look at me like I was the one that had just farted and I couldn't help but look guilty.

It finally feels like we are on the home stretch at last. This is the last surgery with the exception of the port-a-cath removal which the Doctor said he would do in the office. Chemo will be over right around his birthday on September 9th.

Clem is nauseated and throwing up again tonight but not nearly as bad as before. Tomorrow we will get up and start walking the halls again attempting to revive his intestines from the shock. We are hoping to be back at home by Sunday.

Thursday, June 11, 2009

The take down

The Doctor has decided to repair Clem's ileostomy tomorrow at 12:30. Good news!! All looks good. A potential hospital stay of 2 to 5 days. He is ready to have this part behind him. More details to follow from the Hospital.

Thursday, June 4, 2009

Tim The Tool Man has nothing on me!!

I thought I would give a brief report on Clem since he has not posted since the dreaded "drain incident". Chemo started on Monday and was uneventful in that he has not experienced any serious side effects. The process goes like this: Monday morning we show up and he gets hooked up to an IV that delivers an anti nausea medication. Next he spends a few hours in a comfy recliner cuddled up with a fleece blanket having a platinum based chemical slowly infused into his blood stream. Other than the fact that his color changes almost immediately and he becomes very quiet and sleepy, no one would know that inside his body bagillions of cells are getting nuked. After that is complete the nursed hooks him up to a pump that he will wear until sometime on Wednesday which delivers a chemical called 5FU which will be slowly and methodically pumped in on top of the of the oxalyplatin. The combination of these drugs makes for a very lethal cocktail for his type of cancer.

Clem doesn't drive during chemo week, he doesn't stay awake a lot during chemo week, and he doesn't really talk very much during chemo week. I think it is a very tough head space for him. He is forgetful and somewhat spaced out. This symptom seemed to increase in severity as the weeks went by during his last round of chemo. His worst symptom seems to be fatigue. By the weekend I can see signs of renewed energy and on his off weeks he comes back to life a bit. I'm not really sure what to expect this time because his first series of chemo took place before having 75% of his liver removed, a foot and a half of his colon removed, and before he had his bone marrow nuked with radiation. It is quite amazing that the man can get off the sofa at all. But he does and he attempts to move around and drink lots of fluids and tonight he ate quite a large meal with success. He seems to be adjusting to the ileostomy and now realizes that he will still be capable of getting out and about with it.

I miss him right now. He spends a lot of time in his own head when he goes through chemo. He is so tired that he doesn't really want to have much conversation. Of course if I would have long detailed banter about rope rigging that might get him going but...that's just not going to happen. I am counting on YOU for that and YOU know who YOU are. So thanks for keeping my husband's brain busy. This week has been a quiet week on the home front. He has moved from the sofa to the man pad and maybe to the front porch a bit. Our good friend Doug Strait came to visit on Tuesday and he spent some time with Clem in the back yard doing shooting drills and adding a little auditory interest to the serene atmosphere here in Hooterville. That is the most he has done this week. Thank you Doug.

Me...well I have been a bit manic. I had a small meltdown and almost cried. Stupid stuff. We went camping this weekend at SERA which is a Caving event that we like to attend. Clem was feeling well and he wanted to see friends before starting his last round of therapy. Our really good friends Mike and Nancy Harrison encouraged us to go. It was so awesome to camp with them. They are like family. Clem seemed to have a great time and for a while there it was eerily like our old life. On Saturday night we visited with lots of different people and just enjoyed being outside in beautiful weather.

On Sunday morning we met up with our friends Benjy and Dawn von Cramon and shared a few laughs before heading to Doug's house to check out his garden full of raspberries. No one wanted to go inside so we had a picnic outside of Fricks cave while enjoying the cool rush of air coming out of the entrance. Nancy Neal, Doug and I jumped in the creek to cool off. I closed my eyes and poured the cold water over my head and for just a few minutes I felt like a kid again. I think that is what did it...the meltdown thing. I actually let go and laughed and allowed myself to feel again and laugh again and want things again. I suddenly wanted to go to Mexico to see my friends there, I wanted to dress up nice and do my hair and wear sexy shoes and have too much wine to drink. I wanted life to be frivolous for just a few minutes. I haven't wanted for myself in quite sometime now. It just has not been an option.

All of the sudden my controlled world had busted out of its box. I am not really good with that box thing on a good day much less under pressure. It was like spending the winter snowed in, getting on a plane, and a few hours later arriving on a beautiful beach. Staying on the beach for two hours and then being forced to get back on the plane and go back to the snowed in cabin. It would have been easier just to never leave the cabin. It took me a while to get back to the day by day and minute by minute thing.

So what did I do? Use power tools! Loud noisy crunch your bones up and blow your skin off power tools. It works every time. Tonight I am exhausted but better. I don't have the energy to want anything but rest and sleep. Today I chipped all the downed limbs in the yard, turned the compost pile, planted 19 new perennials, pressure-washed the siding on the house and deck, and smashed the crap out of my thumb. Good day!!! Clem tolerated the noise because he could sense I had some stuff to "burn off" but he will most likely bitch if I do this tomorrow. I think I will run my raku kiln. The power of 1000 degrees of swirling vortex flame. That should do the trick.