One Year Anniversary

Today is one year since my surgery. I'm trying to remember... but I can't remember much. Maybe it's supposed to be that way.

I'm happy to be feeling pretty normal. As I said in my last post, I'm waiting for the next scan. Does that ever change after you are diagnosed with cancer?

So one year out, here's a big thank you to everyone who supported me and did so much for me over the last year. I know I wouldn't have made it without you. Especially Mike who did more for me then I could ever have expected. You took your wedding vows seriously! Hopefully, you don't remember everything you had to do for me. I won't go into detail here. You know. You are the best.

Carrie and Keith you had to take care of both of us. Carrie, when you first came in the ICU and I could hear you crying and couldn't move or communicate, that was the worst part of the whole thing. And Keith, you had to bail my car out and drive all over creation! Thanks for letting us use your house too. You both went above and beyond the call of duty... Carrie, do we have plans for our annual shopping trip in February?

Justin and Unkyong, you might be 3,000 miles away, but your support was awesome. Jus, when my first surgeon didn't know what was going on, you figured it out. Before the lab results! If you hadn't found Dr. Sardi... I don't know...

Our neighbors and my co-workers were very supportive with food and friendship. It really means a lot.

And what a year. Mike and I went on the trip of a life time this summer. We drove cross-country to visit Justin and UnKyong in California. I've always wanted to do that. I think the trip made me stronger. I sure felt great the entire time. And I'd do it again in a heartbeat.

I'm posting a picture of Mike and me in San Francisco in a cable car.

I'll be back with more updates. Until then, take care and enjoy life.

Good News

Met with Dr. Sardi this week for 2nd six-month check-up and got good report. Wait another six months. Still paranoid about every ache and pain, but overall, feeling good and getting a good appetite. Hands are almost completely normal! Yeah!

IRON GIRL

Well, it's been a while since I looked in on the blog! Everything is going well. We had a wonderful summer driving cross-country and visiting son and daughter-in-law in San Francisco. It was so much fun I want to do it again. I'm tempted to start a blog to talk about my vacation! Now we are back to reality--and I'm getting ready to head back to the classroom.

I've had good relief for my hands with a monthly B-12 injection and an oral medication called neurotin (generic gabapentin). Just minor numbness and tingling and almost totally normal as far as strength and mobility goes. In a few weeks I go in for my 2nd CT scan and tumor markers. Can't say I'm looking forward to it, but I guess I'll feel better once it's done. So, I'll post results when I get them. I see Dr. Sardi again in September.

The main purpose of today's update is to announce that my daughter, Carrie Price, is running in her second sprint triathlon on August 23. She has decided to donate any funds she raises to Dr. Sardi's research. I'm including a link for anyone interested in donating.

http://www.facebook.com/home.php#/note.php?note_id=113611146966&id=545929840&ref=nf

More info will follow on the IRON GIRL.

Good heath to all!

Good Hand Results and Cancer Survivor Celebration

I'm happy to report that my hands are sooooo much better. The B12 injections and gabapentin medication seem to be doing the trick. I still have super-sensitivity--I suppose what doctors would call neuropathy, but it's much better than it was. I have more hand strength, less pain, and my writing is almost back to normal. It's wonderful!

I'm also happy to report that Mike, Carrie, Keith, and I attended, on June 7, Dr. Armando Sardi's Cancer Survivor Celebration. It was held at the Inner Harbor. We had a bird's eye view of the harbor and a delightful luncheon. The event was emotional for all of us. We got to meet several other survivors--at our table, one coming all the way from Chicago, one from good 'ole Taneytown, MD, and one from Harford County (his wife had just had the surgery that Tuesday and he came solo!).

The Chicago survivor holds the record for longest HIPEC surgery (18 1/2 hours). It made me feel like 9 1/2 hours was nothing! Sharing stories and experiences was interesting and draining. For some reason it makes you feel better to know that others have been through the same thing. At the end of the event though, I was ready to go home.

There was one 15-year survivor and several who are beyond five years. Dr. Sardi,in his usual upbeat fashion, made everyone feel comfortable and healthy. Somehow he manages to impart optimism wherever he goes. He spoke about on-going research. There are changes and adjustments to the surgery on an on-going basis. The newest trend is to do a biopsy of the tumor and determine which type of chemo is most effective. Current procedure is to use mytomycin c, which apparently doesn't work on all tumors.

I am going to post a picture taken by Carrie of the survivor group that attended. There was a lot going on and everyone looks confused.... including me!

On another topic, I made it through the rest of the school year. When I went back to work in February I was NOT ready! At least I didn't think I was. Other than being very tired (I do get tired easily) everything went well. We finished up on June 4. It went by really quickly and I'm actually missing it!

Since school's been out Mike and I have been trying to get our exercise in. We've walked almost every morning and I'm increasing my speed and distance. I am actually doing better on hills than I have in years... so that makes me wonder if my breathlessness from years ago could have been related to this.

So, all good. I hope it stays that way.

Here's to a wonderful summer--whether you have to work or can enjoy a little vacation!

On The Right Track

I'm happy to report that the B-12 deficiency that I talked about in the last post might be the answer to my hand problem. The latest news is a trip to visit a neurologist. I really like him and have had instant relief--though I still have problems. Dr. Mir says it would take up to six months to completely recover.

Bottom-line: Dr. Mir believes the hand problem is related to positioning during the long PMP surgery. He said that open-heart patients have hand problems like this because of rib retraction and the way the retraction puts pressure on collar bones and the nerves that run to the hands. Then, in my case, the additional B-12 deficiency which is probably related to removal of ileum (the part of the small intestine that absorbs B-12--Carrie discovered this!) exacerbates the problem. He also mentioned that stress will make it even worse! (And I haven't been stressed at all!)

After a nerve conductivity test which indicated that my right hand might have a little carpel tunnel, Dr. Mir prescribed B-12 injections and Nerontin or Gabapentin, which is used to treat neuropathic pain. The amazing thing is I had some relief almost instantly. Hands are so much better. Mike said I'm a different person. And I thought I was pretty awesome already!

Only thing that worries me about this treatment is that Gabapentin causes weight gain--just what I don't need!

Maybe making progress?

I've been so busy I haven't written for quite some time. School/work is keeping me stepping. I'm happy to report that all is going well at work though. I believe there are only 30 (or around that) work days left. Then, unlike last summer, I'm planning on a nice relaxing vacation. (Justin, don't take that personally, we loved our visit to see you last year!)
For the most part things are going well for me. I still have the occasional pain and the old ribs act up once and a while. I was just talking to a co-worker who is five years out from this same surgery and he says the pain doesn't ever go away and that there will always be discomfort. Well, there is less pain for sure, and some days I don't even notice it. Other times, it can be very bothersome. Like this week--the weather was nice and we decided to take a walk, but I got extremely winded and my ribs really hurt. That hasn't happened in quite a while, so I was disappointed, because I thought I was doing better in that department. I also notice that I have to remind myself not to eat too much. My appetite has improved and if I eat restaurant size portions I end up with a tummy ache.
My big reason for writing today is because I wanted to update the hands--my only major problem at this time. I've been to the rheumatologist, I've talked with Dr. Sardi's office, had hand massages... Nothing seems to help. I had found relief, for a bit, from manicures and the massages that accompany them. Then, about three weeks ago I went for a manicure and the next day my hands hurt like crazy. It was different than this numbness that I've been trying to describe to doctors. It hurt! I was almost in tears and was using Icy Hot at night for the pain. Also, my knucles were so swollen I could no longer get my rings on or off (still can't!).
Your first thought when something funky like this happens after an experience like mine, is that the cancer is back and that's what causing the problem. Thankfully, so far no doctors seem to think that that is the case. I made an appointment with my rheumatologist--even though the last time I saw him I said I wasn't going to go back because he just keeps saying it's carpal tunnel and I should have the carpal tunnel release (again!).
I keep saying it doesn't feel like carpal tunnel. I keep trying to explain what it does feel like and I've finally come up with this: It's NOT numbness--it's super sensitivity. For example, a washcloth feels like sandpaper. Touching something cold makes my hands feel wet. Or it sends a streaky sensation down my arm. In addition, now it hurts, my joints are stiff, I can't bend my fingers very easily and I STILL have the droppsies! So, as I explain this to the rheumatologist, he says "that sounds like hyper-knesia." He said hyper-knesia is treated (generally) with a low-dose of anti-depressant. So he prescribes Trozodone and sends me for blood work because sometimes hyper-knesia is related to diabetes and B-12 deficiency.
Trozodone has side-effects like rapid heart beat and dry mouth. Nothing major. But wouldn't you know it, I took it for two days and had heart palpitations. Then yesterday, Doc rheumatology's office calls and says I need to get more blood work. When I called to find out what for, I was told I have a B-12 deficiency. I'll have to wait a few days for the results of the new tests. So far, what I've discovered about B-12 deficiency is that it can be related to depression and neurological problems related to tingling sensations in the hands and feet.
Sources of B-12, according to The Vegetarian Society Website are:

"meat, dairy products and eggs. There has been considerable research into possible plant food sources of B12. Fermented soya products, seaweeds and algae have all been proposed as possible sources of B12. However, analysis of fermented soya products, including tempeh, miso, shoyu and tamari, found no significant B12."

Another problem could be absorption--since my diet is very healthy. That's probably possible. Either a medication, or just the surgery could have changed the way my body absorbs B-12.
At least I finally feel like I'm getting some where. It's been so frustrating. So, I'll post again when I know more.
Enjoy the wonderful spring weather (finally). It was/is so beautiful today.

Six Month Check-up (Almost)

Well, I just had my six-month check-up on Friday. Dr. Sardi gave me a clean bill of health and said not to worry (unless I want too) for the next six months. So I'm scheduled for the next check-up in September, when I'll have more blood work and another CT scan. Dr. Sardi and his staff say I'm doing well. I complained about my hands and the rib pain. I guess time is going to be the issue here. It will either get better or it won't. But in the big picture, a little hand pain and rib pain isn't a big deal--not when I think back to the early days of recovery... I've certainly come a long way.
On a VERY pleasant note, Mike and I walked down to Lexington Market after my check-up. He promised me we would back in November, and I wasn't disappointed. The Faidley crabcake was awesome. It was a pleasant day and it was nice to be out and about it B-more. I recommend the crabcake it if you've never had one, or haven't had one in a long time.

So It's Been Three Weeks

Wow. Time flies when you are having fun. I can't believe I've been back to work for three weeks already. I'm happy to say that all is going well. The students have been great. My second and fourth mods had a cultural day on Friday and mods 1 and 5 will have culture day tomorrow. I think the experience was great. We learned about other cultures and got to eat some really good food!
As I said, things are going well. I was pretty tired the first week and would go to bed almost as soon as I got home. I've gotten stronger and I am surprised at how energetic I feel at school... almost normal.
I'm still trying to fit in exercise by walking on the treadmill or doing some short yoga sessions. Today we walked about three miles and yesterday we actually did some hills. I was huffing and puffing, but I made it. It is definitely good to push it.
I can't believe I still have rib pain... though it's not as bad and it comes and goes... but its still there. Doctors and other patients told me it would take a long time to clear up. My biggest complaint right now is my hands. They've actually gotten worse since I went back to work. Perhaps because I'm using them more? I sleep with braces on. That helps a bit. The hardest thing is writing and I still drop things. Since I don't have much strength in my hands it's hard to do a manicure/pedicure. So I thought I should treat myself. I stopped by a local nail shop this week and was pleasantly surprised that the hand massage helped my hands (especially the left). For about a day, my left hand felt normal. So this is a good excuse to go back for more! Which I will in a week or so. I'm also thinking of trying acupuncture... but I need to do some more research first.
We go to Baltimore on Friday for a check up, so I'll let you know how it goes.
Enjoy the warm weather. Wasn't today great?

First Week Successful

Here's a quick report to let you know that I completed my first week back to work. It was only a four day week and I was/am very tired. But couldn't have asked for better students and everything went well.

More later.

Back to Work

On October 24, 2008, I said goodbye to my classes and co-workers and embarked on this journey--cytoreductive surgery with hyperthermic intraperitoneal chemotherapy (HIPEC),or as it is more fondly known mother-of-all-surgeries. A lot of the past few months is a blur. Fortunately, I have made good progress. On Tuesday, February 17, 2009, I will return to work full time. I think I'm ready, but I'm still nervous about it... will I have the stamina? I guess I won't know that until Tuesday. I am excited about seeing my students and co-workers again and will definitely do a posting to let every one know how it goes.

Also, some good news: I got my first tumor marker report since the surgery and the numbers are well with-in normal range. I'm still waiting to hear about the CT-scan. This is the nerve-racking part, as anyone who has been diagnosed with cancer can attest. I think the important thing is to keep a positive outlook and live every day to the fullest. I certainly am not perfect and find myself slipping sometimes, but when I remind myself that many folks have it a lot worse than I do, it is easy to "pick myself up" and get back on track.

I am certainly going to miss my best-bud when I go back to work next week. Mike and I have been together almost non-stop since surgery and I think we'll both have withdrawal symptoms!

I must go. I have to fix a few more "good" dinners. These will be in short supply when the work schedule kicks in.

Missed a Week

I can't believe I missed a week of posting. That puts me at fourteen weeks. While I can't say that I feel normal, I do feel stronger. Good thing, because I'll be going back to work full time on 2/17. Yep, it is fast approaching. I'm happy and scared at the same time. To strengthen myself for the "long" school days which require a lot of time on your feet, I have started exercising and walking on the treadmill. Well, here's how far I've gotten on the treadmill so far: 2 laps, which equals about 1/2 mile. And I was huffing and puffing. Yes, I do have a long way to go. Yoga is better. Except for positions that require you to be flat on your stomach I am doing pretty well. Three months of inactivity have caused a lot of stiffness and soreness, Hopefully, the exercise will serve two purposes: stamina and flexibility.

I had my baseline CT scan and tumor markers taken on 1/22. I haven't heard the report yet, though I have called Dr. Sardi's office several times. No news is good news, but as you can imagine, you can really feel anxious while waiting for these results.

I will continue to update this blog periodically as events unfold, but I think a weekly post isn't necessary at this time. I think going back to work will keep me pretty busy too. If you want to contact me, I have previously posted my e-mail, but I'll put it up again: dilyloprathotmaildotcom

I am disappointed that no one tried my Winter Minestrone! I was hoping to have a future in food blogs! Well, you don't know what you are missing!

One last thing today, Carrie will be participating in a triathlon this summer. She told me that she would like to try to raise funds for PMP. I'll let her give more details, but I thought I would mention it because it is for an important cause. Not a lot of research funds go to PMP because it is so rare.

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.

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.

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

Our Daughter Carrie in the Kitchen at Xmas