Friday, October 31, 2008

THANKS!

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!

Thursday, October 30, 2008

Two Days Post Op (From Mike)

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!!

Wednesday, October 29, 2008

EVENING UPDATE

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

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.

Tuesday, October 28, 2008

MOM'S DONE!

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

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

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...

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!

Monday, October 27, 2008

WE'RE HERE!

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.

Sunday, October 26, 2008

From Diana


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.


Friday, October 24, 2008

The Big Day is Approaching (from Mike)

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


Tuesday, October 14, 2008

Mom's Story

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!

Saturday, October 11, 2008

Family Picture

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

From Mike

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.