Monday, July 26, 2010

Surgery Follow-up

Tuesday, July 13, Jessica and I took a marathon trip to New Orleans for my follow-up appointment.  We left the house at 4:45 a.m. and returned that evening at about 10:40.  Was I ever tired, but we had a fun day!!  We arrived in New Orleans a little after 10:00 and took a taxi to the French Quarter.  We strolled through the area for nearly two hours, then had lunch in an outdoor cafe', complete with pigeons begging for food.  After lunch we hailed a taxi to take us to the clinic (a first for me) for my 2:00 appointment.  We weren't sure what we were going to do after my appointment to kill time until our 7:00 p.m. flight, but it turned out we didn't need to concern ourselves with that minor detail...we didn't leave the clinic until after 4:30, so we went straight to the airport.  As we were walking into Subway for supper, we heard someone call Jessica's name.  I couldn't imagine who in the world have known her in New Orleans, but it turned out that four of her sorority sisters were headed to OKC from a convention in Orlando and they were on our flight home.  It's a small world!

One thing I really like about Dr. Boudreaux is that he doesn't get in a hurry when he sees his patients.  He takes his time and makes sure that all questions are answered.  I have to admit, though, that it's not much fun having to wait your turn.  I received a good report, though, so it was worth the wait.  My incision is healing very well, and the markers for tumor growth were all very low (which is a good thing).  Apparently the tumors were "treated" in the lab with a variety of substances, one of which was black raspberry.  The results indicated that black raspberry had a postive effect on my tumors, so Dr. Boudreaux suggested that I eat them to hopefully keep any tumors from growing.  They are not available locally, and to ship a five pound bag of frozen berries costs almost as much as the berries themselves.  I guess you can't put a price tag on health, though, so I will get them ordered today.  (This is my last "free" week, so I'm kicking into gear and trying to get a lot of things done.)

My next visit to New Orleans will be in October, but I won't get to see Dr. Boudreaux.  He's a surgeon and is basically finished with me, for now at least, so I will be seeing Dr. Woltering.  I have a list of scans and tests that have to be completed in September to check my progress, so not much fun there.  Of course, I was hoping to make the trip over fall break, but Dr. Woltering isn't in the office on Thursdays and Fridays, so I have to go earlier in the week.  I'm not crazy about having to miss school, but I really have no choice in the matter.

I have been in the process of acquiring a new oncologist since my surgery, and finally accomplished that this past week.  His name is Dr. Qubaiah, and he's at the OU Medical Center.  I will meet him on Monday, August 2.

Friday, July 16 was my seven-month milestone.

Thursday, July 8, 2010

It's About Time!!!

As I recover from my surgery (May 27), and watch my summer slip by, I find that procrastination has come to the forefront.  I don't feel overly bad about it however, because on August 2 I'm back on the clock and life will become fast and furious once again. 

Danny and I headed to New Orleans on Sunday, May 23, and the more we packed the more Daphne (the cat) became nervous.  She hid before we left, so we weren't able to tell her goodbye, and when Jess came to check on her throughout the week, I guess she was pretty pathetic.  She showed us, though...when we got back from New Orleans, she took one look at us, hid under the bed and wouldn't come out for quite some time.

On Sunday, we drove 3/4 of the way to New Orleans and on Monday took a scenic drive which took us closer to the gulf.  We went over some amazing bridges and saw some shrimp boats (Danny's goal) and saw several fields of sugar cane.  We came really close to taking a bayou tour (world famous) but decided against it.  We arrived at Hope Lodge late Monday afternoon and got settled in.  Hope Lodge was built by the American Cancer Society and is totally free for cancer patients and their families while the patient is in treatment.  As fate would have it, our room was available for the entire time we needed it.  It's a really nice facility and the staff was very accommodating.

Tuesday, I had my appointment with Dr. Boudreaux, and it was like meeting a celebrity.  Danny and I had watched a presentation he gave at a seminar sponsored by the Carcinoid Foundation, and that presentation cinched the deal for us...there was nowhere better for me to have surgery than New Orleans with Dr. Boudreaux.  He spent a lot of time with us explaining the surgery and after looking at the CT scans I took with me, spotted a primary tumor on my small intestine (since December 16, I had been told that the primary tumor was in my mesentery, which doesn't happen).  After asking permission to freeze tumors for further study, etc., Dr. Boudreaux asked, "Wanna?" and without skipping a beat I replied "I wanna".

So the process began.  My insurance had to be called for permission (which they granted in a very short amount of time), then I was sent to the lab for 13 (no joke) vials of blood to be drawn and an EKG.  Finally around 2:00 or so, starved to death, we were able to go about our business.  I was to be at the hospital at 5:30 a.m. on Thursday morning for 7:30 surgery, which gave us half a day Wednesday to sight see (pre-op prep was to begin at noon).

Wednesday morning, we set off toward Mississippi and the gulf coast on a very pretty highway.  The sand was beautiful, people were fishing, and Danny was able to see more shrimp boats.  We then circled around so we could go over the 34-mile bridge over Lake Ponchetrain, which was a true adventure.  Due to the curvature of the earth, it's not possible to see the shoreline across the lake until you're about halfway across, and that was a little unsettling.  We made it across in good shape and enjoyed the view.

Thursday morning, 5:30 a.m., we arrived at the hospital and within a short amount of time, I was being prepared for surgery.  My biggest dread is always the IV, and I can always tell if it's going to be a good or bad experience just by the temperament of the vampire.  The nurses decided I needed something to calm me down, but they didn't give it to me until the IV was in place (a lot of help THAT was!).  (The first attempt failed, and even though Danny and I told them I don't want any details, the nurse felt compelled to let me know what happened.)  So that's pretty much all I remember until I woke up in ICU...

As for the surgery, Dr. Boudreaux has performed over 300 similar ones, so I was in very good hands.  He and his team did several things, and it took about 5 or 6 hours.  They removed both ovaries, scraped my uterus (but I don't know what they scraped), removed my gall bladder, found 2 primary tumors on my small intestine and removed a portion of my intestine, removed a small portion of my liver, and put my small intestine back where it belonged...it was twisted and fused to my liver.  I didn't get any pathology results due to Memorial weekend, so I don't know the state of my health at this point.  I'm trying to focus on recovering (the surgery was equal to 3 major surgeries) and I'll find out where I stand when I go to my follow-up appointment on Tuesday, July 13.  Needless to say, I have a list of questions to ask while I'm there!

June 1, I was released from the hospital, and in spite of the doctor's advice to make the 12-hour drive in 2 days instead of 1, we made the drive in 1.  Danny made a pallet for me in the back of the Suburban, and I was quite comfortable there, so I saw no reason to stop and spend the night anywhere.  Danny wasn't tired, we left New Orleans at 8:30 a.m., so we made it home by 9:00 p.m.  Was it ever good to be home!! 

I had a visitor while I was in the hospital...my cousin George and his wife from Houston.  Their son lives about 90 miles from New Orleans, so they made the drive to see us.  How thoughtful of them, especially since my crazy physical therapist chose that time to come in an work with me.  I really appreciated the visit, though, however short!

Wednesday, May 19, 2010

Who Dat?

It has been a while since I've updated my blog, but I've been waiting for insurance to approve my trip to New Orleans to meet with a carcinoid specialist and potentially have surgery.  I received the news today that insurance has approved the consultation, and when I got home from school I had a message from the Oschner Clinic in New Orleans to schedule my appointment.  I'm scheduled for 10:00 this Tuesday, the 25th, and I will meet with Dr. Boudreaux, who delivered an incredible presentation at a symposium hosted by the Carcinoid Foundation.  Danny found the video online and we watched it several times and learned that the primary tumor probably isn't in my mezentery, as the doctors here are telling me.  In the process of scheduling the appointment and answering a variety of questions, the nurse confirmed that suspicion...the primary is usually not in the mezentery.  Needless to say, I'm really excited for the opportunity to meet with Dr. Boudreaux.

If I am a candidate for surgery, Dr. Woltering (the surgeon) has an opening on Thursday, the 27th, so perhaps I can have the consultation and surgery all in one trip.  I'm feeling really good about the situation, although I hate missing the last week of school.  The flip side is that I will have all summer to get back on my feet.

This past Sunday, May 16, marked my 5-month milestone.

Sunday, April 25, 2010

The Plot Thickens

Danny found a video of a panel of doctors who attended a symposium held by the Carcinoid Foundation.  We watched the videos of two doctors who specialize in carcinoid, and the actual panel discussion, and were really enlightened.  It seems that the primary carcinoid tumor could be as small as a pin point or as large as a grain of rice.  With that being said, the tumor located in my mezentery is apparently NOT my primary tumor as my oncologist has been telling me.  (This leads us to wonder exactly how much my oncologist really knows about carcinoid, especially since she asked me if I wanted a general surgeon to operate on my mezentery.)

We were extremely impressed with the two doctors, one of whom practices in New Orleans, and has had much success in locating and removing primary tumors, thus extending the lifespan of the patients.  I had an appointment with Dr. Chohan this past Thursday, and I asked her if she had/has other carcinoid patients whose tumor is located in the mezentery.  She assured me she does/has, and I asked her where she sends those patients.  She told me New Orleans (to the clinic where the video doctor practices).  She was quite ready to get the ball rolling to refer me to the New Orleans clinic and get me scheduled for mid-June.  I put her off because I have to check with my insurance about coverage, and because I have an appointment with an oncologist from the Integrist Cancer Institute this Friday afternoon.  However, after having watched the videos, Danny and I are convinced that New Orleans is the way to go.  It will take a lot to convince me otherwise.

I am feeling really good these days, except for tummy and back issues, but I am able to work all day and have enough energy to do things around the house.  I am so very thankful for that!  A month ago, I didn't know if I'd ever have the energy to function normally again.

I am very grateful for all the prayers, thoughts and cards throughout this journey.  They lift me up more than I could have ever imagined!

Sunday, April 18, 2010

April Showers Bring May Flowers

I'm probably the only person on earth who is loving all the gentle rain we've had since Friday!  It's refreshing and relaxing and cleansing. 

Friday, April 16 was my four-month milestone.  It also marked one week back at school, half-days.  That went well, and I have gained strength everyday, so I'm shooting for all day this week.  I am hopeful that I can make it.  It's just as tiring to work half-days and have to get things ready for the last two classes as it is to stay all day, I think.

Today I'm doing a 24-hour urine collection to check for carcinoid markers.  Hopefully, the count has gone down since the two chemo emobilization treatments.  My next step is to have my tumor debulked (reduced) and I'm still in search of a surgeon.  I contacted the Integris Cancer Institute this past week and if the person I spoke with communicated with her co-workers correctly, I am a candidate for their organization.  Of course, the person who schedules appointments was not available, so I'll call back Monday morning.  I'm not going to get my hopes up, but if in fact they do treat carcinoid patients, perhaps they have a surgeon who has operated on a mezentery before.  Danny read online that a debulking surgery can take as long as 12 hours and it's followed by chemo (yuck!).  Needless to say, I want someone who knows what he/she is doing if I'm going to be in surgery for up to 12 hours!

On a side note, I've battled with trying to grow a clematis for the past four or five years.  Danny sprayed my first plant (which didn't do too well its first year) with Round-up, and the replacement was slow to take off.  Last year it had one blossom before the sun took its toll.  This past week I strolled through my backyard, and lo and behold -- the clematis had grown to the top of its trellis and was loaded with buds!!  I checked it today and it has five or six blossoms!!  I'm taking it as a sign from God, and am very thankful.

Tuesday, April 6, 2010

Spring is in the Air

I feel I have missed so much this year during my recovery process, but I count my blessings that I had so many sick days accumulated.  I have had the luxury of recovering without having to worry about my job, but it has still been frustrating.  Neither my doctor nor the radiologist gave me any indication that I would feel like I had run into a brick wall, yet after the fact, all symptoms and ailments were "just part of it" and to be expected.

For so many weeks I had trouble making it through a quick shower.  I would nearly pass out and have to lie down as soon as I got out.  Make-up and hair were not done unless I had to go to an appointment, and then I had to push myself to get through those two tasks.  Friday night date night (Alfredo's) has been a big effort, but it always made me feel good to go through the grooming process and go out in public. 

Easter is "my" holiday to cook, but since I have trouble preparing a batch of biscuits without having to sit down twice during the process, I decided to forego hosting this year, so Rick and Tracey did the honors.  I had been doing pretty well, gaining strength and feeling good, then had a setback on Friday night.  After our date night, I went home feeling queasy.  Before bed, I threw up, but it wasn't a food poisoning reaction...I threw up once and felt better.  Saturday, however, I couldn't get out of bed.  Sunday, it took every fiber in my being to get ready and make it to Easter dinner.  Feeling hot and clammy, I made it through dinner and after a nap, was ready for dinner number two at Mom and Dad's. 

My plan was to go back to school on Monday, but I decided to wait until Thursday.  Two weeks ago, I acquired a pain in my right shoulder, which prompted a CT scan.  The scan showed nothing out of the ordinary...I have a dying tumor near my diaphragm (I'm feeling it)...but the pain in my abdomen and shoulder are uncomfortable when I cough, sneeze, or breathe deeply.  I have to take pain pills or Tylenol to keep the pain in check, and even so, there's only one comfortable sleeping position...on my back...and that gets old pretty quickly.  The enzymes in my liver are elevated due to the dying tumors, so I have bile rubin which is not being processed (no adverse side effects).

My challenge now is to find a surgeon to do the debulking procedure on my mezentery.  I am at a total loss on how to do this.  I prefer a surgeon who has performed such a surgery before, but have no idea how to locate one.  Dr. Chohan asked if I was OK with the surgeon whom I met on December 16 when this all came about, but I just don't feel she is the person for the task.  My next doctor's appointment is April 21, at which time debulking will be discussed.

Wednesday, March 17, 2010

Procedure Update

The second chemo embolization procedure seems to have been a success, so much so that I won't have to go through the third procedure as suggested by the radiologist.  For that I'm very grateful, because the procedures aren't too much fun.  The second one went a lot better than the first...I was SO much more alert immediately after and during my hospital stay.  I DID have a lot of stomach pains immediately after and it took a while for the pain meds to kick in and make me comfortable.  Dr. Lee suggested that the naproxin I took after the first procedure could have possibly thickened the wall of my stomach and caused the pain. I also had several instances of throwing up, which I didn't have the first time, and was certainly glad when that finally came to an end.

I came home from the hospital on Saturday (February 27), and the recovery has been very slow.  In spite of the fact that I was so much more alert after the procedure, recovery has not been any more rapid.  Taking a shower still wears me out as do putting on make-up and doing my hair.  I plan to go back to school the Monday after spring break, and am saying my prayers that I'll be able to handle it.  Danny and I had our Friday night date night at Alfredo's this past Friday, and it was a major accomplishment.  The next night we went to Hunan Garden, which was also a major accomplishment and didn't have the same effect as the last time we ate there.

I went to see Dr. Chohan last week, and she said she's going to give me six weeks to mend and then we'll talk about debulking the tumor in my mesentery and removing my left ovary.  Danny and I are lost now...we would really like to have the tumor removed (we understand it's in a tricky location, but shouldn't there be some kind of radiation to zap it??) because if it stays, it will just continue to grow and metastisize.

That's about all that's new for now.  Jessica turned 21 on March 13 and is in Dallas this week with a group from UCO doing things at Ronald McDonald House and the Gilda house.  The first day they were there, Jess had to drive the van because their adviser was sick and couldn't go.  It fell on Jess because she works for the university and is 21.  Who'da thought?