Our Family Journey with PMP

Two Years

2010-11-30T20:35:00.000-05:00

I've been slow in putting up the good news. Another good report from Dr. Sardi. I won't need to be scanned again until March. I wish I could say it gets easier each time--but it doesn't. I'll just keep plugging and hoping for the best.
I will need surgery to repair surgical hernia and scar tissue--but that is pending. Believe me, I don't want more surgery. But I don't want a problem and emergency surgery either. So more on that later.
I'll try to update more thoroughly later.

One Year Anniversary

2009-10-28T20:24:00.002-04:00

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

2009-09-20T14:11:00.004-04:00

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

2009-08-06T11:51:00.002-04:00

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

2009-06-14T14:57:00.008-04:00

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

2009-05-11T22:14:00.005-04:00

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?

2009-04-25T17:36:00.008-04:00

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)

2009-03-15T17:03:00.002-04:00

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

2009-03-08T22:13:00.003-04:00

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

2009-02-22T19:27:00.001-05:00

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

2009-02-12T16:32:00.003-05:00

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

2009-02-03T09:41:00.007-05:00

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

2009-01-21T11:06:00.004-05:00

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

2009-01-13T13:13:00.003-05:00

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

2009-01-07T17:55:00.007-05:00

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

2009-01-02T10:06:00.000-05:00

Merry Christmas & Happy New Year!

2008-12-31T19:15:00.003-05:00

Greeting. I must apologize for not making a posting last week, especially after I said I'd do a weekly update. As it was Christmas, we stayed very busy. We got to spend some quality time with family. Mike and I decided not to decorate much (no tree), as he is scheduled to have knee surgery for a meniscus tear on January 15. That would leave neither of us in shape to do the un-trimming! Since we got to see Carrie and Keith's tree, and my mom and dad's tree, we were in the Christmas spirit.

Our children and their wonderful spouses surprised us with a blu-ray disc player. You have got to see the picture to believe how much different it is from the traditional DVD. It was a perfect gift for someone recovering from surgery. We are definitely going to enjoy.

As for New Year's eve, we are planning on staying right here and relaxing. Did you hear the wind blowing out there? The blu-ray is cranked and ready. We are going to watch Cars.

OK, I am doing very well. My pain level has decreased--I am completely off the pain meds. Although the pain is still there, it is definitely less than just last week. My breathing has improved. For the first time since surgery, I can inhale deeply without a stabbing pain in my back. I guess the biggest problem is still my hands. They remain numb and I drop things a lot. I am just hoping it will eventually improve as other patients of Dr. Sardi have indicated. In the next few weeks I have to have the filter removed that was installed to prevent pulmonary blood clots. And, at the end of January, I am supposed to return to work. I still don't feel up to that! Maybe with continued improvement I'll be ready. I do miss work, co-workers, and students!

Our appliances are conspiring against us. I was feeling like I could bake a batch or two of cookies and got out the ingredients to give it a try one morning before Christmas. My oven decided not to cooperate. It turns out we have to get a new oven--and it won't be installed until next week. (I don't recomment Maytag--this oven was on its third five hundred dollar timer!) So no cookies! However, Carrie and neighbors supplied us with some goodies. The garbage disposal then went beserk. We had to call a plumber and now it's working again--but who knows for how long.

You'll see from the posting made by Mike that I ordered a quilt hanger for the 4th mod quilt (see earlier posting). It's now hanging in the family/TV room. Posing with me in the photo is White White (aka Schneewittchen). She thinks it's her room. Schneewittchen means Snow White in German. I happened to be studying German when we acquired her. It seemed a perfectly fitting name. No one, including the vet's staff, can pronounce it though and this led to much confusion. So, she became White White, to which she answers happily. The quilt is beautiful and I will always cherish it. Thank you 4th mod. Hope you are all doing well as the semester draws to a close. I hope you will stop and visit me when I return to school.

Missy, thanks for your updates and good wishes. You are so consistent and I love reading your notes. Can't wait to see you in a few weeks. Hello to Becky and all your classmates too.

Lindsey and Doug, I hope you have had a very pleasant, relaxing, and HEALTHY holiday. It's good to know I can expect continued improvement. I hope, Doug, that things are going well for you. My family is anxious to hear how you are doing... you have been a real inspiration. I'll be sure to let you know about the survivor celebration. We'd like to meet both of you.

Here's hoping that 2009 is good to all of us. Be safe.

The Quilt from 4th Mod on New Quilt Rack; Diana and "White-White"

2008-12-30T19:32:00.004-05:00

Seven Weeks and Dr. Sardi visit

2008-12-16T16:57:00.003-05:00

Well, I went to see Dr. Sardi on Friday. He and his team continue to say that I am doing well. The pathology confirmed that I do have the least aggressive type of appendix cancer. This means that I don’t have to have additional chemo. Now we are in watch and wait mode. I’ll have a baseline CT scan and tumor markers taken in about six weeks. After that, I’ll be checked every six months to make sure there is no recurrence. Dr. Sardi said his longest survivor is at 15 years. So that is encouraging. There is a survivor celebration this summer and Dr. Sardi invited me… or should I say insisted that I be there. Family members too. It sounds like a big deal. If you want to learn more about the types of appendix cancer you can check out the link on the blog called “PMP Awareness.”

Today is seven weeks. I am feeling stronger and I’ve started doing some light housework as well as cooking. It feels good to be doing something other than reading, watching TV, or sleeping! I am continuing to have pain and Nick, Dr. Sardi’s PA, thinks it is probably related to the rib retraction during surgery. He says it will eventually go away. I’ll believe it when it happens. I’m hoping I just wake up one day and there isn’t any pressure! My hands are still numb as well. That is probably the hardest thing to deal with at this point as I drop things a lot and I’m not able to open pill bottles, or button shirts, or put in earrings (at least not easily). Good thing Mike is such a great caretaker! I’m getting ready to do Christmas cards and I’m wondering if folks will be able to read my writing. Well, if you get a card and you can’t read it, it might be from us!

I am still on track to return to work around February 1. Like I told Dr. Sardi, I can’t imagine that I’ll feel like working based on how I feel now. We’ll see.

I’ll continue to update the blog on a weekly basis for now. I’d love to hear from you, so leave a comment or give me a call.

That’s all for now.

Six Weeks

2008-12-10T15:58:00.007-05:00

I can't believe it has been six weeks since I had surgery. In some ways it seems like forever ago, and then again, just like yesterday. At any rate, I don't have much to report this week. No big changes. I did try to go off the pain medication--unsuccessfully. On Sunday I thought it would be a good idea to try to get through a day without it. Even though I'm still having pain, I thought I'd be able to handle it. By Tuesday, I had a splitting headache, my blood pressure was through the roof, the pain, while not unbearable wasn't at a good level. Mike convinced me that pain medication was prescribed for a reason and that maybe I'd stopped too soon. So I took the pain meds again and immediately started to feel better. So I guess I did jump the gun.

Hopefully, I will have some more detailed info after my visit with Dr. Sardi on Friday. I'm not looking forward to the drive to Baltimore (especially since there is a possibility of bad weather). I'll be sure to update the blog when we know more after the visit.

Wasn't Mike sweet to put up a picture of me? I hate to see pictures of myself--but now you can see I'm still here!

I have to thank the folks who've sent food, cards, called, visited, and had us over for dinner. If I haven't returned your phone call it's not because I don't want to. I still get a little winded if I try to talk too much. So, in good time, I will get back to you. So many people have been so thoughtful keeping us supplied with food and keeping me cheered-up.

Also, I'm happy to see comments on the blog from my students: Missy and her sister, Bethany, Micah, and Taylor! It means the world to me to hear from you. I can't wait to get back to school and see you.

And here's a nice bit of good news, fellow PMPer Doug, (see link) and Lindsey are engaged. I'm so happy for them. That is the best news I've heard in a long time!

That's all until the update.

Diana on Sunday December 7, 2008

2008-12-07T16:18:00.001-05:00

Diana Update (from Mike)

2008-12-05T10:09:00.002-05:00

Diana is out of surgery a little over 5 weeks now. She continues to make progress. We have been shopping (Diana calls it "walking"!) a little. She is still on meds so she cannot drive yet so I am taking her everywhere. Yesterday we visited my brother Jeff who had a massive stroke about 6 weeks ago. He is in an Acute Rehab facility in Lancaster. He has made progress but has a long long way to go. His police buddies came up from Maryland to visit with him the day before.

Diana is able to do more without getting winded. She no longer sleeps on the couch in a sitting position; she is back in bed and sleeping well. Diana goes back to see Dr. Sardi, her surgeon, next Friday (we will update the blog). She still has tremendous pressure on her abdomen so she is still on pain meds.

If someone would've told me that she would look this good 5 weeks after such a surgery I wouldn't have believed it. Thanks to everyone for the calls, visits, flowers, food, and cards. That definitely has kept her spirits up.

Four Weeks

2008-11-25T19:34:00.002-05:00

Time for an up-date. I'm happy to say that I am continuing to improve. Today was four weeks. A lot changed in the last week, including the fact that I can now lay down and was able to finally sleep in bed this week. My breathing is improving daily and because Dr. Sardi has made it clear that exercise is important, Mike took me to the Chambersburg Mall today so I could get a workout. I really didn't think I'd be able to walk the entire mall--but we did. Very slowly, but we made it from one end to the other. I think it will make me sleep well tonight.

Thank you to everyone who has sent cards, flowers, food, and just called to check up on us. It means so much. We will never be able to thank you enough.

Three Weeks Tomorrow

2008-11-17T11:03:00.004-05:00

Tomorrow is the three week benchmark for surgery. It still feels like a long haul, but when I look back to how much I have improved, even over just the last week, it is truly amazing. I remember reading other people's experiences prior to this surgery and I was sure I'd still be in the hospital at this point. I was certainly prepared for the worst-case scenario.

Lucky for me, every day gets a little better. At my recent visit to Dr. Sardi, Kim the PA suggested that I could start doing some light activities, like doing dishes. I thought to myself, no way. I feel like a thousand pounds is bearing down on my stomach at all times... how can I do anything like dishes? But, being the good patient that I am, I decided I should try. So I loaded the dishwasher after dinner one night and it wasn't so bad. It was nice to move around a little. Last night I even made dinner. Mind you, it wasn't fancy, and Mike did the lifting and shifting, but I made some fish, Mike mashed some potatoes and it was sooooooo good! Then Mike got to do all the clean up from that!

I feel like I can stand some light company, so if you are interested, just give a call first to make sure we aren't at an appointment. Also, Mike will try to balance visits so I don't have too much of a good thing at once. One does get tired of looking at the same walls, but hey, I'm not complaining. It could be so much worse.

So, that's all today. I'll look forward to hearing from ya!

At the Obama Rally-Leesburg VA

2008-11-15T20:40:00.000-05:00

Dr. Sardi Visit Today (Mike)

2008-11-14T17:33:00.003-05:00

We returned to Mercy this morning to have Dr. Sardi and Kim, his PA, remove the sutures from the operation. They both said that Diana is doing very well for only being out of surgery for 2 1/2 weeks. Althought the official lab report didn't come back from the lab yet, Dr. Sardi said that he knows enough from his calls with them that Diana had a very low grade of PMP. The good news is that no further chemo treatments appears to be necessary at this time. Follow up CT scans and tumor marker tests will be a normal part of recovery and will be administered on a frequent basis going forward.

Diana expressed her concerns about the shallow breathing and Dr. Sardi assured us that there is still quite a bit of fluid to drain off yet. The excess fluid is inhibiting her ability to breathe deep breaths. This affects her mostly at night, and she has to sleep in a semi-sitting up position.

Diana will slowly increase her exercise regimen. Next week we are going to start walking at the Chambersburg Mall. With the economy the way it is, we should pretty much have the whole mall to ourselves.

So, it's the kind of conversation we were hoping to have with Dr. Sardi, and we did. We are very happy and remain optimistic that Diana will recover fully.

Thirteen Days Post Op (Mike)

2008-11-10T11:13:00.003-05:00

Slowly but surely we are getting a routine back into our lives. Last night was better than the night before. And each day, she finds she is able to accomplish some small task that she couldn't do the previous day (we'll have her raking leaves in no time!!!). That's progress and I am very happy.

Our neighbors have been so kind and thoughtful. John and Mary Ann brought us the absolute best homemade chicken noodle soup ever! In fact, Diana had some for breakfast this morning. Roger and Marion brought us a roast chicken on Friday when we returned from the hospital. We are so touched by the thoughfulness of our wonderful neighbors. Homemade cooking beats hospital fare and tv dinners and my feeble attempts in the kitchen every time!

Diana is very weak so if she hasn't returned your call, she will in time. Even talking on the phone plays her out. We both appreciate the many cards and letters she has received. I also want to thank the student who gave Diana that little brass bell that she uses to summon me whenever she needs something!!!

My brother Jeff is being moved to an acute rehab facility in Lancaster today where he will continue his slow recovery.

Home

2008-11-09T14:06:00.002-05:00

Well, I'm home. I was discharged on Friday and drove straight back to Fayetteville. Dr. Sardi didn't think we needed to stay at Hope Lodge.

Doing OK. The ride was three hours as we did not leave Mercy until 5:00 p.m. which meant we (I should say Mike) had to drive through that awful Friday night rush-hour. He was wonderful. For me the trip was difficult. I had trouble breathing and by the time we got home I was ready to freak out. But Mike got me calmed down and I was able to get a little sleep proped up on the sofa. I still can't lay flat...

Each day seems a little better. Mike is taking excellent care of me and our cats are just so happy to have me back.

Our neighbors Roger and Marion had us a delicious chicken ready to eat. It was so good.

I have lots of people to thank and lots more to tell, but my hands are numb and it is hard to type, so more later.

Thank you to everyone who has been supporting us. It means a lot.

Day Nine Post Op (Mike)

2008-11-06T12:01:00.002-05:00

Diana is still exceeding everyone's expectations. Dr. Sardi would have let Diana go home yesterday if she wanted. We discussed it and decided that until Diana's oxygen is better stabilized, she is better off here where professionals can help her. Dr. Sardi acquiesced but he definitely thinks she is ready.

Diana said she had a very good night last night. I stayed at Hope Lodge where I can shower and relax a little. As I write this she is on another floor in Occupational Therapy. There they teach her how to do the most basic of things like putting on her socks, getting into bed, and other things she will need to do prior to getting her strength back.

We are very encouraged so far. While we don't have the lab reports back of the stuff they removed, we hope that no further chemo will be required.

I would like to give a shout out to our friend Nancy, a retired oncology nurse herself. Nancy spent the day with Diana on Tuesday, allowing me to return home for awhile to take care of business. Nancy and her husband Ted have been steadfast friends for over 30 years now. We are truly blessed.

Please continue to keep Diana in your thoughts.
Mike

Six Days Post Op - Good News (Mike)

2008-11-03T17:47:00.003-05:00

Diana is doing fantastic! She has been weaned off everything except her chest drains and even they may come off tomorrow, Dr. Sardi says. I just took her for a walk around the hall and she did fine, even without the assistance of oxygen. Dr. Sardi predicted that she may be able to be released by the weekend! And...she may not even have to go to Hope Lodge. When she is released from Mercy, I can take her home. I wish you could all see her. We want to wait until we get her home and settled before she has visitors. Dr. Sardi says that she no longer needs a family member to stay with her through the night here as long as she remains stable.

I went in to U. of MD. Medical Center to see my brother Jeff and was pleased to see some progress there too. (Jeff is in room 723; Diana is in room 722; their respective hospitals are less than 1 mile apart!!!) When he heard my voice, he opened his eyes and squeezed my hand. He even gave me a thumb up when I informed him how well Diana is doing. Jeff still has a long road to hoe before he is the old Jeff. Acute rehab is probably in his forseeable future and then...??? We are all hoping for the best. My sister Jill has everybody in Lancaster County praying for him and it appears to be working so far.

Thanks to everyone who has helped ease our burden. Please keep both of my loved ones in your prayers.

Day Four Post Op (Mike)

2008-11-01T21:20:00.002-04:00

It's 9:35 PM and Diana is getting settled in for the night. She had another good day. Vitals are excellent. She went for a walk today in the hallway with her physical therapist. She said it hurt but it was worth it to "just get out of this chair!" Carrie spent the day with her so I could go back home for the day.

Update (from Mike)

2008-11-01T05:16:00.004-04:00

After a frustrating start on Friday, Diana's doctor assigned her an excllent nurse. She and the rest of the team here at Mercy worked hard to ease her discomfort and manage her pain better. As a result, Diana had a much better night, the best one yet. Most of yesterday was focused on clearing her lungs and managing pain. While she is still working on the first one, I am happy to report that her pain is being managed very effectively. The medical team should start removing some of her tubing soon. Today (Saturday) she will begin physical therapy. She looks great! Carrie washed her hair last evening. Her color is good. Her vitals are excellent (even though her heart rate is still around 115, this is normal). She received 2 units of blood yesterday (also normal). While I don't think she is ready for a game of Scrabble yet, she is noticeably more alert. Yesterday, she had trouble even reading her blog. She is sitting in her chair as I write this, doing her breathing exercises. The health care professionals here assure us that Diana is progressing very nicely.

Diana requires a family member to be with her at all times. Today, Carrie, bless her heart, will be spending the day. I will run up home (2 hours away) and take care of some domestic things (water plants, clean up cat messes, etc.)

Diana and I have the best neighbors one could ask for. Roger and Marion next door and John and Mary Ann across the street are looking out for us while we are gone. They are feeding the cats, bringing the newspapers up, and generally keeping an eye on things. Diana and I appreciate that so much. What a relief to not have to worry about that too.

Carrie or I will continue to keep you updated. Let's pray that the news continues to be good.

THANKS!

2008-10-31T15:09:00.003-04:00

Thanks for all your kind wishes, everybody. Some of you have asked for her mailing address. It is:

Diana Price
Mercy Medical Center
301 St. Paul Place
Rm. 723
Baltimore, MD 21202

She's doing better today. She has an awesome nurse who is really taking care of her and making sure she is comfortable!

Two Days Post Op (From Mike)

2008-10-30T10:14:00.002-04:00

Diana had a restless night. Nurse Maravic moved her to a firm chair about 10:00 PM last evening because the hospital bed was just too uncomfortable. That was marginally more accomodating to Diana and she was able to get some rest, but not much. She has many tubes that contribute to her overall discomfort.

Dr. Sardi (the chief surgeon) and Dr. Thieme visited Diana this morning and said she is doing well. The surgery wound looks good. Vital signs look good. There is some swelling in Diana's legs but that should go down as the fluid leaves her system. Dr. Sardi said that they will be weaning her off some of these tubes shortly which will add greatly to her mobility. He also stated that they didn't have to do much once they got in there (these surgeries can last up to 14 hours I am told).

Once Diana can get up and walk a little I think her situation will improve a lot. It's the lying in one place that is making her miserable. As I write this, Diana is sleeping and appears to be comfortable.

All in all, I don't think we could have asked for more. Diana is exceeding my expectations for being only a day or so out of this 9 1/2 hour surgery.

I signed us up for Hope Lodge at 636 W. Lexington Street. This great facility is for cancer patients and their caregivers. Carrie, Keith, and I received a tour yesterday and it appears that this will be an excellent transitional place for Diana once she is released from Mercy. There are 36 guest rooms, a large kitchen area, a great room with satellite tv, laundry facilities, library, and even an exercise room. They even have a shuttle back and forth between there and Mercy and U. of MD Medical Center. It is right across the street from Ronald McDonald House and is right downtown (a block away from Lexington Market and their killer crabcakes!). So, it's a relief to not have to worry about lodging as her surgeon wants her to stay in the area for awhile after her release from Mercy.

No news on my brother yet. I am going to try to see him today too.

Thanks for all your love and support and please continue to keep Diana and my brother in your thoughts and prayers. Our love goes out to our heroes Doug and Lindsey who are a major source of inspiration to us. Doug has recently undergone the same thing from the same wonderful Surgical Team Sardi!!

EVENING UPDATE

2008-10-29T17:55:00.003-04:00

Diana was moved to a regular room out of the ICU. I don't think she's quite ready for visitors yet. She's looking good and talking. Resting a lot. She took a few steps today with the help of a walker. I think the hardest days lie ahead--walking, getting function back, etc. Overall, today was a good day. She's had a few stellar nurses and a few not so stellar, but I think we had set our expectations up really high.

Mike's brother also showed signs of improvement today, moving his left side and his right side just a little bit.

RECOVERY BEGINS

2008-10-29T13:30:00.003-04:00

Diana looks really good this morning and is supposed to be moved to a room on the 7th floor later this afternoon. She's talking and ordering us around already. Once the tubes were removed from her mouth, she started feeling better. I think they were mighty uncomfortable.

Mike got a room at the Hope Lodge so he can be closer to her and have a place to shower and shave when he's not with mom. Of course, he can stay with me too, but I've still got the traffic to deal with. This way, he's right there.

C.

MOM'S DONE!

2008-10-28T21:25:00.002-04:00

Mom made it through the surgery and is in ICU tonight. She was moderately responsive when we saw her. It was obvious that she was under a lot of medication. She squeezed our hands and looked at us. I don't think she wanted us to leave! But we could not stay with her in the ICU tonight. We'll be back first thing in the morning. I don't think she's ready for company yet but we'll be sure to post when she's more stable and back in a regular private room.

We saw Dr. Sardi briefly at the end of surgery. Sounds like they found exactly what they expected to find. Tumor/mucin was concentrated up under diaphragm. They removed her spleen and removed tumor from the liver, as well as removed a small part of the small intestine in the lower part of her abdomen. The good news is that she didn't have to have a colostomy. At least I don't think so, that's what I heard today, but it's been a heck of a day.

We also saw my Uncle Jeff who was wiggling his toes and furrowing his brow, but is otherwise unresponsive. He did not open his eyes but Dad's sisters told us that he sometimes does. We'll see what the next few days hold for him; no one knows yet.

So anyway, I don't think this is a day that any of us will forget anytime soon, except maybe Diana--she'd probably like to forget it! Things are good for now and we'll post when we see her tomorrow.

Best wishes to all!

Carrie

From Mike

2008-10-28T16:01:00.002-04:00

We are now 6 hours into the surgery and so far so good. The head nurse called me about 2:00 pm to let me know that Dr. Sardi was into the heated chemo wash (to make sure all the cancer cells are destroyed). We remain hopeful! Dr. Sardi should be able to talk to me in person about 5:00 pm. Carrie and I will leave after that to visit my brother Jeff, who is a mile away at the University of MD Med. Center.

My 48 year-old brother, with no history of heart disease, suffered a major stroke in a grocery store in Easton, MD (Eastern Shore). He was transported from Easton Memorial to Baltimore over the weekend. I spoke with my sisters earlier. They have been with him the whole time. Christine says that the outlook looks bleak at this time. He spent his entire life in law enforcement and is our only brother.

Please keep both of our loved ones in your thoughts.
(Mike)

WAITING

2008-10-28T15:51:00.003-04:00

Well, Dad got word that Diana is in the last part of surgery, the chemotherapy. This was around 2:30. We are expecting to hear from Dr. Sardi within the next hour about what he found. After we find out how everything is going, we are probably going to visit my Uncle Jeff, who is less than a mile away at University of Maryland Medical Center.

We'll post again soon!

SO FAR, SO GOOD...

2008-10-28T09:39:00.002-04:00

Well, Diana went in early this morning! Keith and I got here at 6:15 a.m. and we thought she would be in her room, but she was already in the OR. We had to ask around and finally got in to see her before she went in for surgery. She's doing great! We met her urologist, her anesthesiologist, the head nurse, and another doctor who will be operating on her today, one of Dr. Sardi's fellows.

I don't think Mom had the most pleasant of nights as she had surgery prep, and had to drink lots of awful fluids. She was looking bright and chipper this morning though--just ready to get this over with. Dad stayed overnight here with Mom on a cot "chair."

So far, we've had two calls from the head nurse to say that everything is going well. Dr. Sardi has started the operation. I think we're going to hang around 'til lunchtime, then take Dad home to get cleaned up (a good hot shower never hurt anyone!). We'll plan on coming back later this evening. We'll stay in touch!

WE'RE HERE!

2008-10-27T13:04:00.003-04:00

Last night, Mike and Diana came to stay with Keith and I in Baltimore. We ate dinner and played Scrabble and went to bed early. Of course, Keith won the Scrabble game.

We made it to Mercy at about 8:30 a.m. this morning, Diana, Mike, Keith, and I. So far, we have met a lot of different people who are going to be a part of mom's surgery team. Mom is waiting for her lunch to come.

Of course we're all nervous but everyone has been friendly and nice and knowledgeable, answering our many questions. Mom is getting a better idea of what to expect in the coming days. Lots of tubes, but also lots of pain medication which should aid in her recovery and her mindset.

We have a lovely view of the Tremont and the Baltimore skyline. Dr. Sardi encourages family members to take a walk during the surgery, since he expects it to last between 6-14 hours and there's not much we can do in that time.

Diana goes in for surgery on Tuesday at 6:45 a.m. We will post here with any new updates.

From Diana

2008-10-26T03:46:00.006-04:00

I’m having trouble sleeping tonight so I thought this would be a good opportunity for me to make my first entry on the blog. First, I want to thank Carrie for taking the time to set this up. It will be a good way for people to keep track of my progress. I want to thank my entire family for their support and love. I know that I wouldn’t be able to do this without them. You’ve all been amazing. Every time I am blue, one of you is there making me feel better. It means a lot to me to spend time with you too, and this summer and fall I have cherished our times together. Mike, you support me every day—even when I’m grumpy. I hope I don’t drive you crazy before this is over. Justin and UnKyong, even though you are far away, you are close in spirit. Carrie and Keith, you’ve made me feel welcome and comfortable at your house and so important from all of your visits. I love you all.

Carrie posted some information about how this PMP progressed for me. It’s been a very strange journey, indeed. Apparently, this disease has been progressing for some time—maybe as long as eight or ten years. I’ve been complaining about abdominal problems for at least that long. There have been a few incidents in the past where I felt really bad for a day or so and then it would pass. Strangely, I didn’t think it boded well. But even though I visited doctors and tried to get a handle on what was going on, nothing really seemed to fix it. I had my gallbladder removed in 2004. Then I was diagnosed with colitis in 2005. The lovely medication Asacol, helped with the symptoms, but I still didn’t feel right. In 2007, my GYN sent me for a CT scan and discovered what she thought was a tiny ovarian cyst. She recommended getting a tumor marker check. When the markers came back normal, she gave me the choice of surgery or watching and waiting. Three months later we did the CT scan and tumor markers again with no change, so we decided to wait until my next check up and check it out again (obviously we didn't make it that far). Also there was the problem of “the increasing abdomen.” I REALLY did try to eat healthy foods. I started cooking with olive oil and moved away from animal products. I even tried to go vegetarian. Still, I would feel bloated and uncomfortable. There didn’t seem to be a pattern with the foods either. What upset me one day wouldn’t upset me the next, so I couldn’t eliminate any particular food to stop the problem. This past spring (2008), my abdomen grew even more. From one day to the next I couldn’t get in a pair of my dress pants, and my stomach was hard. I was eating less because I felt nauseated all the time , and I was gaining weight. Then one day I looked in the mirror and I thought, “wow, my face looks a lot thinner.” When I checked out some old photos, my face WAS thinner, but the tummy wasn’t and this set me to wondering if I could have ovarian cancer. I remembered the cyst and the symptoms I was having sounded like it could be.

It was time for my appointment with my gastro-intestinal doctor and he suggested another colonoscopy. The colonoscopy was performed and nothing unusual was found… not even a polyp. I went to work the day after the colonoscopy, even though I didn’t feel well. I actually had abdominal pain. I called the doctor to tell him this and he recommended some Tylenol saying it’s not unusual to have some discomfort afterward. That night I went home feeling a little better and suggested to Mike that we take a walk. We didn’t even get half way around our little neighborhood circle when I started having severe pain in my lower right side. Now I consider myself pretty tough, but I had to stop every few steps because the pain was so bad and Mike could see that I wasn’t going to make it home, so he went and got the car. I could barely get in the car the pain was so bad. I went in the house and laid on the bed and the pain began to subside. I was feeling a lot better and said I should probably get another doctor’s appointment because that was a weird episode. Mike wouldn’t let me off the hook. He insisted I go to the ER. I’m stubborn and didn’t want to go. There was a lot of medical issues going on in the family (parents and daughter-in-law) and I didn’t want to burden anyone. Mike convinced me that if I keeled over dead, everyone would be very appreciative of my not wanting to burden them. That finally convinced me to go to the ER at Waynesboro Hospital.

Going to Waynesboro Hospital is like going back in time. We’ve lived in the area for five years and I’ve had two surgeries there. There is a sign on the hospital that says “BEST PLACE TO WORK IN PA.” Well, it is definitely the best place to go if you are sick! I’ve been totally impressed every time I’ve been there and would recommend it to anybody. Before the night was over, the proverbial “crap” hit the fan. Things have been going crazy ever since. A CT scan that night revealed that my little ovarian cyst had grown to the size of a football. That’s what the ER doc said. No wonder I felt so miserable. The CT scans were actually read in Australia. The ER doc said that when little hospitals like Waynesboro don’t have a radiologist on call, they send their films to be read by English speaking doctors in Australia who are wide-awake. This was interesting, but Mike and I were scared. We knew I had a football in my stomach and no one seemed to know what to make of it. One doc said, it’s probably ovarian cancer and sent us home to make an appointment with the GYN the next day.

Long story short, GYN sent me for ultrasound and thought it was a hemorrhagic cyst, which is common in women in their 50s. They are usually large and removed and no problem. She recommended that I go to Hershey Medical Center to have this thing removed—just in case in turns out to be cancer. She said, then you can have an oncologist there who will know what to do.

The surgeon at Hershey was a great surgeon. But he didn’t know what to do. For a month we waited for pathology reports. No one knew what this 8 pound (now basketball size) tumor was or what to do about it. Based on the surgeons description, “appendix spewing mucous, gelatinous material, “ Justin began sleuthing and diagnosed what he thought I had. Pseudomyxoma Peritonei. As we know now, a rare form of appendix cancer. (When the path reports did arrive--they agreed.) Fortunately for me there were two experts in our neck of the woods. I made appointments with both (Dr. Sardi at Mercy and Dr. Esquivel at St. Agnes).

Both doctors were impressive. Dr. Sardi recommended the MOAS (Mother of All Surgeries) or Cytoreductive surgery with heated chemo. Dr. Esquivel wanted to try an experimental laparoscopic surgery that would remove visible tumor and also deliver heated chemo. After much debate, the family and I decided to go with the more aggressive surgery—even though the laparoscopic surgery sure sounds a lot easier.

Well, the big day is almost here. I would be lying if I said I was anything but scared. I am petrified. Mike, Justin, Carrie, and their wonderful spouses have kept me sane at home. My wonderful friends at Smithsburg High School have given me those little “kicks in the butt” when I needed some tough love. Lots and lots of wonderful friends and family have sent cards, flowers, prayers, and good wishes. Know that every single thing you have done is much appreciated. I just have to scratch my head because I didn’t know so many people cared. I know that this kind of “power” will help me get through this.

Last week I had to tell my high school history classes that I’d be leaving. Wouldn’t you know I have the BEST classes I’ve ever had since I’ve been teaching? It truly pained me to leave them. They are in the capable hands of a long-term sub, but I will really miss them. Thanks for the nice cards and good wishes! I miss you all.

Now I have to give a shout-out to the once-in-a-lifetime class that every teacher dreams of. Yes, this was the hardest class to leave. When I started teaching, some of the pros told me that it was possible to get a class like this—but I didn’t believe it. The 4th mod honors world history class is unbelievable. To a student, they are hard-workers, they bring a good attitude to class every day, and they are always respectful to me and to each other. I was TOTALLY BLOWN away when, on my last day, they presented to me a quilt, on which each of them had decorated a square. It was lovingly sewn together by the “mastermind” and her mom. I will post a picture of it here, because it is so beautiful and I will treasure it forever. Only the most amazing people would have done this! THANK YOU!

Tomorrow we go to Carrie’s and then Monday I’m admitted to Mercy to begin the process of preparation for the surgery. I’ve been following Doug’s blog (see another PMPer’s journey) so I think I know what to expect and I’m not looking forward to it. I had another CT scan today. I’m not sure if it was the medium I drank for the scan, or nerves, or the PMP, but I’m not feeling too hot today so I am actually anxious to get this over with. If getting this junk out of my stomach will make me feel better I am ready.

Mike, Carrie, and Justin will keep you posted and let everybody know when I can get visitors. Keep us in your thoughts and prayers please—and also Mike’s brother Jeff, who we found out yesterday had a stroke and isn’t doing too well.

I hope to thank everybody in person when this is over.

Much love.

The Big Day is Approaching (from Mike)

2008-10-24T08:55:00.005-04:00

Diana and I are attempting to carry on with life as usual...cheering for our beloved WVU football team, rooting for our Democratic candidate Barack Obama, and otherwise remaining engaged with the day-to-day things that enrich our lives. To some extent, it's kept our problem at bay. But the proverbial gorilla is still in the room and cannot be ignored any longer. We have just a few days left now before the operation. To say we are anxious and concerned is an understatement. We are all very apprehensive but cautiously optimistic. We know that the procedure has been tried and tested. It's not exactly new, this MOAS surgery. In fact, Diana has a colleague at Smithsburg High School who has had this surgery five or six years ago and is back teaching. But the sheer magnitude of what Dr. Sardi and his team will be doing is daunting.

One thing we have learned through all this is that the compassion and love our friends and family have shown gives us strength to face each new day (I cannot say enough about the staff at Smithsburg High. They have been so supportive.) We love you all! We are confident that, with your continued support, we will get through this.

As far as how Diana is doing. At the moment, she is fighting off a cold. She is feeling better this morning. We hope that she will be healthy for Tuesday so that Dr. Sardi will not have to reschedule.

I will be in the hospital with Diana as much as I can next week. I don't know about access to a PC to update this blog. Between Carrie, Justin, and me, we will do our best to keep you informed and up-to-date via this site as frequently as we can. Please continue to keep Diana in your thoughts.

Mike and Diana on 10/22/2008

2008-10-24T08:50:00.002-04:00

Mom's Story

2008-10-14T21:13:00.004-04:00

Mom said she didn't mind if I posted a few things about how we got here, to this diagnosis. What a strange trip it's been--can I say that? But maybe her story can help somebody else or a family member or caregiver dealing with similar things.

Mom had been saying for some time that she felt uncomfortable. She was buying bigger clothes even though she was eating well and exercising. Her doctors ran different tests and came up with different ideas . . . IBS? Celiac Disease? Ulcers? But no matter what the diagnosis or treatment, Mom still felt the same.

Earlier this summer, she was taking a walk with my Dad and felt a bad pain in her side. Dad convinced her to go to the ER because he thought it might be her appendix. Mom was there overnight while they performed a CT scan and some other tests. The doctors found a large tumor which they thought was on the ovary.

Within weeks, Mom had surgery at Hershey Medical Center to remove the tumor. During the surgery, the surgeon noticed that her abdomen was filled with a sort of fluid, which he could not explain. He didn't know what the fluid was, but he said he got out as much as he could. Because her appendix had been involved with the tumor growth, he had removed that as well. A pathology report would follow. Mom made a great recovery and was up and about and out of the hospital in just a few days!

When the pathology report came back, it didn't say much. The doctor could only say that the fluid appeared to be a low-grade malignancy. He didn't know what else to do, so he referred Mom to another doctor.

Thankfully for my brother's awesome Google search skills, he stumbled upon a disease with similar characteristics that were mentioned on the report: appendix involvement, fluid filling the abdomen, and general discomfort and bloating. "Pseudomyxoma peritonei" is apparently also a general term meaning "fluid in the abdomen." Once we found some specialists through http://www.pmpawareness.org/, we encouraged Mom to set up an appointment with them right away, so we could get to the bottom of this instead of waiting around for more opinions.

Two of the specialists were right here in Baltimore, where I live. Mom set up the appointments and in July, I went with my parents to see Dr. Sardi at Mercy and Dr. Esquivel at St. Agnes. Both doctors were incredible people. They were extremely helpful, answered all our questions, spent time with us, and provided much support for what they knew must be a stressful day. I think Mom had a hard time choosing between the two doctors but she eventually decided to be treated by Dr. Sardi. On October 28, she'll have what Dad called MOAS in his earlier post. MOAS stands for Mother Of All Surgeries, as other patients have termed it, but it is cytoreduction with heated intraperitoneal chemotherapy in technical terms. What makes it different from other surgeries is that it's very long, maybe 8-12 hours.

So here we are, and Mom is being unimaginably awesome and strong! I hope we are all being strong for her too. With Mom's positive attitude and her friends' and family's support, I think we're all ready to put this behind us and get moving on the recovery!

Family Picture

2008-10-11T19:02:00.003-04:00

Left to right: Our favorite son-in-law Keith, Daughter Carrie, Our favorite daughter -in-law Unkyong, Son Justin, Diana, and Mike

2008-10-11T11:07:00.000-04:00

From Mike

2008-10-11T10:55:00.002-04:00

I will be writing on this blog frequently to keep you updated on Diana's progress. Diana and I are trying to get psyched for the upcoming MOAS surgery on October 28. We both know that it is going to be rough, but we will get through it. From what I see on other blogs, Dr. Sardi at Mercy Hospital in Baltimore is one of the best in the business. Having met him and some of his staff, I have a good feeling about this upcoming ordeal. The surgery is 2 weeks away and we are growing increasingly anxious but we know that with the support and love of family and friends, Diana will be ok. A big thanks to our children Carrie and Justin who are simply just awesome and the best gift that any parent could ever expect. Thanks to Carrie for creating this blog. It is a very creative and efficient way to keep everyone informed.

Welcome to Our Blog!

2008-09-07T23:16:00.007-04:00

PMP stands for pseudomyxoma peritonei. It is a rare form of appendix cancer that affects one in one million Americans.

We'll be posting updates here to keep everyone in the loop about Diana. Her surgery is scheduled with Dr. Sardi on October 28.

Thanks for checking in!