Wednesday, January 21, 2009

Twelve Weeks

Greetings. I'm still progressing, but realizing that I'm not up-to-speed yet. Mike's knee surgery last week showed just how far I have to go to a complete recovery. I am happy to say that he is doing well and already resuming some of his activities. Mike isn't supposed to drive until he sees his doctor on Friday. Fortunately for me, he is already taking out the trash, emptying the litter boxes, and a lot of other things he's been doing all along. Those activities just about did me in last week. I thought I was doing pretty well when I started to cook again! I don't think I realized how much Mike did for me until I had to help him out for a few days. I asked him if I was that much of a pain! He just smiled.

Anyway, still seeing improvements. One of the neighbors told me that my color was finally coming back. That was a good sign to me. You know, you look at yourself and think, "I'm looking better." But when somebody confirms it, you know it's true.

As far as getting myself on a schedule last week I haven't been very successful. I know I only have a few weeks left before I go to work and I'm worried. I guess everything will fall in place.

I have been cooking quite a bit. I tried out my new oven by making some cookies. The convection part worked great on Snickerdoodles, but I found that using the traditional bake worked better for chocolate chips. I also have been making the most awesome soups. This weekend I made Winter Minestrone. It is packed with kale, one of my favorite veggies. I'm going to give you the recipe (modified a little) because it's so fantastic:

Winter Minestrone
(Taken from Celebrating America's Relish Insert Jan. 2009)

1 Tablespoon Olive Oil
4 green onions, chopped
1/2 red or white onion, chopped (I used red)
1 celery stalk, chopped
3 large carrots, peeled and chopped
4 ounces finely chopped deli ham (I omitted)
3 cups water
3 cups low sodium chicken broth (I used veggie broth)
1 cup wheat berries, rinsed (I used barley)
1 Parmesan cheese rind (optional) (I didn't have, but I was going to grate cheese later)
2 bay leaves
1/2 teaspoon salt
Coarsely ground black pepper
1 14-ounce can diced tomatoes with basil (I just added a little basil to plain tomatoes)
1 lb. kale, chopped and large stems removed
Toasted pita breads

Heat oil in large Dutch oven. Add onions, celery, carrots, and ham. Saute 10 minutes. Add water, broth, wheat berries, cheese rind, bay leaves, salt and pepper. Bring to a boil; reduce heat and simmer, covered, 30 minutes or until wheat berries (or barley) are tender. Stir in tomatoes and kale; cook until thoroughly heated. the longer the soup sits with the cheese rind, the stronger it gets. Serve with toasted pita bread.

Recipe says it makes 16 cups.

Per 2 cup serving: 260 calories, 3g fat, 10 mg chol (with the ham); 12 g prot. 47g carbs, 6f fiber, 880 mg sodium

That's the recipe, as is, from the flier. I didn't add cheese (I forgot), or ham. The flavor was so intense the ham and cheese were not missed. The pita bread was great to dip, but any bread would work. I also had to add more broth after it sat over night.

That's my cooking tip for the week. I hope some one tries it and tells me they love it as much as I do.

Tuesday, January 13, 2009

Week Eleven

The report this week is good. I'm still improving and feeling a little stronger every day. On Friday, 1/9, I had a procedure performed at Mercy to remove the IVC filter that was installed to prevent blood clots from reaching my lungs after surgery. This is a persistent problem that Dr. Sardi has addressed by requiring his patients to have the IVC filter placed prior to surgery. He says it has prevented a lot of problems after surgery. IVC stands for inferior vena cava. It's the vein that brings the blood supply from your legs to your heart. Here is a website to help explain: http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/dc/tp/ivcftr.jsp

The removal went smoothly. Removing the IVC filter takes longer than putting it in. Something like 30 minutes to put it in and 40 to 50 minutes to take it out. Then you have to lie still for an hour to make sure the vein doesn't bleed. My filter looked similar to the one on this link: http://members.tripod.com/Daryl_D/08079906.html

I'm not a person who likes to dwell on things medical. I do feel better though, if I understand the procedure I'm having. I don't like to be surprised by what is going to happen to me. I think it makes for better recovery if you aren't thrown for a loop. That's one reason I include these little links.

I'm beginning to prepare for returning to work in February. At this point I am looking at part-time for a short period. It is a little scary to contemplate. I know I need to put myself back on a schedule. And even though I know I need rest, I feel guilty for just getting up whenever I feel like it. That's not good prep for work!

So here's my goal for this week: Get myself on a schedule. I also get to repay Mike for taking care of me, as he has his knee surgery Thursday. It is supposed to be out-patient and he should back in business with-in days. I'll let you know.

Try to stay warm... the weather forecast for the weekend is COLD.

Wednesday, January 7, 2009

Ten Weeks

Yesterday was ten weeks. It is hard for me to believe that it's been that long since I had surgery. On the other hand, it seems like yesterday. I can report that the pain is definitely beginning to subside. I mostly notice it now when bending and for some reason, when I lay down. I'm still not lifting, but I have been assisting Mike with chores around the house, like folding laundry and yes, I am cooking! Yeah! The new oven came yesterday and I'm really going to like it. Now I get to experiment. I made banana bread yesterday with a recipe that daughter Carrie gave me. It was the best. I'll have to include a link so you can enjoy it too. Here it is: http://orangette.blogspot.com/2007/02/i-really-really-shouldnt.html. Absolutely the BEST banana bread ever.

I thought I'd make today's post about my recollections of the surgery. Unless you are a PMP patient or a family member you might not find this interesting. I just think it's important to get my memories written down before they fade. It's like child birth. Even though it's painful, you eventually start to forget.

The surgery is called cytoreductive surgery with IPHC/HIPEC (which basically means removal of visible peritoneal tumor and injection of hyperthermic chemotherapy, basically a warmed chemotherapy solution is used in the peritoneal cavity to prevent microscopic tumor left after surgery from growing back). It is often called M.O.A.S. or Mother of All Surgeries and the chemo part is fondly known as "shake and bake." I was pretty scared to have the surgery. The hardest thing was probably showing up. I had several months to think about it, mostly because I had to return to work for 30 days (after my leave last year) in order to qualify for using the sick-leave bank again. I was admitted to Mercy the day before the surgery, as is Dr. Sardi's practice. I even had lunch--crab cakes. Never before was I allowed to eat a meal the day before an abdominal surgery. The purging process is a little more industrial at a hospital... though I would recommend forgoing the lunch if possible, because it all has to come out, if you get my drift. I think the philosophy is that since you won't be eating for several days/weeks, Dr. Sardi wants you to get as much nutrition prior to surgery as possible. My family was allowed to stay with me. I'm sure they were bored to distraction, but they stuck it out. I managed to be upbeat until the Ostomy/Colostomy/Ileostomy nurse showed up. She was very encouraging and explained that Dr. Sardi makes every effort to avoid using an ostomy, colostomy, or ileostomy. She explained that a person can live a relatively normal life with one of these openings. Seeing the hardware though, and being marked for where the opening would be, if necessary, was very disconcerting. It made me suddenly depressed. I couldn't stop thinking about it. I was lucky and did not need to have one. Of course, one doesn't know what the result will be until you come back to consciousness. I think that was one of the first things I asked about. I've included a link to a very good website that will help explain the differences and procedures for anyone who is interested in learning more about an ostomy, colostomy, or ileostomy. http://gicare.com/Diseases/Ostomy.aspx

Mike got to stay with me that night and neither of us got much sleep. We had to get up early and we went down to the surgical area. I had a small IV in my arm, but I can't remember whether it was started on Monday or on Tuesday morning. At any rate, the IV was just to administer anesthesia. I was told that I'd have a central line installed during surgery. Carrie and Keith were to come to the room to see me before surgery. But, since we went to surgery earlier than expected, I was afraid I wouldn't get to see them. They did find us. I had just enough time to say hello to them. Dr. Sardi recommended that the family not stay in the hospital all day. Dr. Sardi has a nurse call the family periodically during the surgery to keep them apprised of progress. The nurse will also give the family notice so that they know approximately what time the surgery will be over so that they can return to the hospital to talk to the surgical team. They went to visit Mike's brother Jeff, who was hospitialized nearby. Not exactly what Dr. Sardi had in mind. My surgery, so they tell me, was around 9 1/2 hours. Of course, I remember not a thing. Just the way it is supposed to be. Depending on circumstances, the surgery can be even longer. Typically, surgery is done on Tuesdays as it is strenuous and even Dr. Sardi and his team don't usually do more than one a week.

My first memory after surgery is in ICU. I can hear people talking, and I try to respond, but I can't. Someone is asking me to squeeze their hand and open my eyes. I try with every fiber of my being to do it, but I can't. It is the most helpless feeling. I don't know how long I was like this. I vaguely remember Mike and Carrie coming in and talking to me. I still couldn't respond. I could hear them talking. I tried to open my eyes, to squeeze their hands when they grabbed mine and I couldn't. Later, Mike told me that my eyes were open, but extremely swollen. In fact, he said my entire body was grossly swollen and they had a hard time realizing it was me. Both Mike and Carrie said they weren't prepared for how I looked and that it was quite upsetting for them.

I was on a ventilator, a machine that breathes for you. I knew this would be the case and even though I was told about it, it is an unnerving experience. Prior to surgery the team explained that this would happen and that it is important to not "fight" the machine--just relax and let it breathe for you. Well, that is easier said than done. First, I felt like I was choking. There was mucous in my throat and I really thought I was going to choke to death. I couldn't communicate with anyone. My hands were tied down. When a nurse came to check on me I TRIED to let her know that I felt like I was choking, to no avail. Eventually, I was able to grab one nurse's hand and somehow communicate. She used a device to make me cough and that seemed to relieve the choking sensation for a bit. Fortunately, I wasn't in ICU for very long. It was the most wonderful feeling to have that breathing tube out and to be told that I was leaving the ICU floor.

Before the surgery, I was told that patients often spent two weeks in the hospital and a week or two in a transitional setting near the hospital before being released. I was in Mercy for ten days. I later learned that if I'd have gone home one day earlier I would have broken the record for early release. Truthfully, I don't think I was ready to go home when I did. I was so weak and having a lot of trouble breathing. Everything worked out well, but I was one scared person when we came home on November 7. But I'm getting ahead of myself.

I spoke about the breathing tube being removed when I left ICU. Not to worry: I was still laden with tubing. I had a central venous (CV) catheter or central line, which is used to administer medication, fluids, nutrition, and draw blood. This line is placed in neck. I had four drainage tubes: two in my lungs, two in my abdomen. I can't remember the clinical names for these drains. Two hung on each side and had to be pinned and unpinned from the hospital gown. When you move around (and you do move around) these things hang off of you and bounce around. Each drain reminded my of the DOWNY BALL. You might remember the little device that DOWNY came out with so that you could treat your laundry with fabric softener before the advent of the automatic dispenser. Well, maybe most of you won't remember... that was in the 70s. There was another large "ball," also attached and hanging; that I was told was a device to help with pain. So imagine when therapy arrives to take you for a walk. You need a walker, and all of these devices have to be draped over it--including the drainage collection vessels that are sitting on the floor. There is also a suction tube in the nose to prevent nausea. My nurses were awesome. They had to check these devices, and empty them, administer pain meds, and many other duties. It takes a special person to be a nurse. I also had a pain pump. You push the little button and it administers pain meds... but you can't over-dose because it will only inject every 15 minutes. So my pain was managed very well. Of all the abdominal surgeries I've had (and I had four including this one), the pain was managed, in that I was able to get up and move around without that excruciating pain that usually grabs you right in the gut and radiates everywhere. Even coughing wasn't too bad. Coughing after abdominal surgery is challenging. You take your cough pillow with you everywhere, just in case. It truly feels like you will NEVER have these tubes and pipes removed. But eventually it does happen. That is the best feeling. Then you can walk and move and it almost feels weird not to have all the attachments.

Let me also say that it became obvious to me that I really didn't know what was going on... at least not totally. Dr. Sardi recommends that you have family members stay with you 24/7 and my family did this. Mike and Carrie took turns spending the night with me on the most uncomfortable chair! But I needed them around because I really wasn't fully aware of what was going on. I knew the medicaton I was taking would affect me, so I didn't get too concerned when I started to see things and hear things that other people didn't. That went away too as the dosages were lowered. It is scary though if you aren't prepared for it. It's also embarrassing when you think that you know what's happening and you don't. I gave one of the doctors heck one day beause I thought they hadn't changed the dressing on my lung drain. It was changed. I just didn't remember it.

I had to have therapy because I was not able to do a lot of things that I'd done prior to surgery (like put on my shoes and socks without aids). I had just attended therapy with my mom when she had hip-replacement surgery, so mentally this was a hard thing to do. Here I was a relatively young person with people who were much older, learning to dress and undress, walk up and down stairs, etc. There were also patients who were young, but who were not making progress. It was sad and hard to watch. It also made me realize that things for me could have been a lot worse than they were. My "aids" were only temporary. But some folks weren't going to improve. So don't we have to count our blessings?

I was also lucky in the fact that I never experienced nausea after the surgery. Dr. Sardi said that this was very unusual. I did have problems with nausea after my surgery in June and lost about 30 lbs then. But I'd managed to gain some of it back before the October operation. My appetite has not returned full-force, but this is not a bad thing. I've lost about 32 pounds (from both surgeries) and I hope to keep it off. Dr. Sardi said that most patients lose about 25% of their body weight. While this is true for most, it didn't happen for me, which I guess is good. I will definitely be working on keeping the weight off that I did lose. The recommendations for extra meals and shakes that most people need haven't been necessary for me.

Breathing problems were also an issue for me. This may be because a lot of the tumor removed was on my diaphragm. I was unable to lie down for several weeks. I remain short of breath but I'm doing breathing exercises and recently my niece, who is a respiratory therapist gave me some exercises to do that seem to be helping. Not being able to breathe is probably one of the scariest things I have ever experienced. In therapy, I was taught that when you can't breathe you panic and that makes it even harder to breathe. So, you have to try to stay calm and just breathe deeply and evenly and eventually you'll be alright! I know: easier said than done.

Dr. Sardi started asking me if I was ready to go home three or four days before I actually was released. I kept saying I wasn't ready, but it was obvious that they were pushing for me to get out of there. I'm not saying this in a negative way. Research shows that people heal more quickly at home in a comfortable environment than in a hospital. And Dr. Sardi is VERY positive. One of his treatments for the day is "smile at least seven times." He is so positive that it is hard to complain or be negative--you'd feel like you were letting him down. At any rate, when it was decided that I'd be released, we thought we'd get out of the hospital prior to Friday night rush hour! We didn't make it though. You know, there is all that paper work and last minute tests, so we finally got out on the road at about 5:00 p.m. on a Friday night. Mike handled it well in the stop and go traffic and we made it... but it was a three hour ride when it should have been an hour and a half. I was still pretty swollen; I couldn't wear shoes or clothes yet, so I was quite a sight. By about the time we reached Frederick, I was beginning to have trouble breathing--I think from the exhaust of all those cars. We stopped at the McDonald's in Myersville, to get some fresh air and get a drink. I'm sure anyone who saw me that day thought I had the plague. My legs were wrapped and bandaged, my hands were in splints, like I said, still in a gown and hospital socks. I did get my breathing under control and we finished the trip. I really thought Mike would have to take me to the local ER. I couldn't find a comfortable way to sit, I couldn't get my inhaler to work. I was really freaking out. But Mike stayed calm. He got me to breathe slowly and get myself under control. He fashioned some pillows on the couch so that I could sit up and sleep in a propped-up position. I slept like that for the first three weeks. Mike wrapped my legs in bandages designed to help force the extra fluid out of my body every day for a week (that was a very long and involved process). He gave me 30 days worth of lovenox injections to prevent blood clotting. What a wonderful husband. He really went above and beyond the call of duty!

Looking back on the process I can't believe how much progress I have made. I'm not one hundred percent yet, but I am feeling more and more normal every day. I believe that the remaining issues will resolve themselves eventually. I hope I never have to do it again, but if this disease is now under control and I get some more time on this earth it will have been worth it.

I hope that this so-called journal is helpful to others. I'd be more than happy to communicate with anyone contemplating surgery with Dr. Sardi or another surgeon. I know it helped me to talk to other people who have gone through this. I'm going to post my e-mail address so that you can contact me: dilylopr(at)hotmail.com

I'm also including a link to Dr. Sardi and Mercy: http://www.mdmercy.com/centerExcellence/cancer_services/surgical_oncology/sardi.html