Desmoid a no show!

I had an appointment with my oncologist, Dr. Bucur, this morning to go over the results from my cat scan --- everything looks great.. "stable post surgical changes involving the retroperitoneum (the who?). No recurrent or residual mass is demonstrated." WOOHOO! "Stable subcentimeter hepatic lesion (too small to characterize but likely a cyst)"-- this lesion/cyst on my liver has been on the other CT scans, but apparently that's not a big deal. People have them, never know about them, I don't think it does anything. So. After a year of quarterly cat scans, my abdominal desmoid tumor has failed to return! No chemo for me (although, I was fully prepared to pull a Brittney & shave my head).

I will have another cat scan in 3 months (end of May). If everything looks great, I just might be ready for another baby. If I get pregnant then I won't worry about this whole cat scan-tumor stuff until after the baby is born (since you can't/shouldn't do cat scans during pregnancy). If I'm not pregnant then I'll have one more CT scan & appointment with Dr. Bucur 6 months from now (August 27th actually) and if all is still going great, I'll move to having 6-month follow ups.

The other night before my cat scan, I thought about this past year and how great I've felt and how quickly it's past. I thought about what-if it had come back & what-if I was going to have to do chemo and more surgery.. and I decided that it would be okay, I'd just take it easy and relax and get through it. And get back to my energy level and feeling well again and everything would be okay. I wondered if I'd wasted the past year. Did I do enough? Did I grow enough? Have I been a better wife & mom?


BORING TUMOR HISTORY
(for documentation purposes)
See.. a year ago, Jack was 6 months old & I was annoyed my my poochy stomach (with Charlie, 6 months postpartum I was actually thinner than my pre-pregnancy weight) maybe it was a second-kid side affect-- the perpetual poochy tummy (a depressing thought! But come on, even then I was only 135 pounds which for being 5 ft 8 in is excellent anyway). Then every once in awhile I'd feel a strange little flutter in my stomach - almost like a baby moving, but I knew I wasn't pregnant.. so I started poking at my stomach to see is I could feel what was moving around in there! Under my left ribcage I could feel something long and skinny and solid, maybe about 2 1/2 inches long. So I asked Greg, who still remembers tons from his anatomy TA days & he said "uhhhh... I have no idea - go to the doctor!"

I made an appointment with Dr. Crump for just a regular old physical & told him that I felt something funny when i pushed on that part of my stomach & wondered what it was, but other than that I felt excellent, had tons of energy, had a great appetite. He did the physical and when he got pushed on my stomach he said "hummm.. I don't know what that is.. might be your pancreas.. but I'm not sure! I like to call these fasci-nomas.. meaning.. I have no idea, but it's very fascinating!" He scheduled and ultrasound for me so that we could go in and look - just to make sure there wasn't anything worth worrying about. He was very positive and reassuring and told me not to worry that we'd just do some tests to make sure everything was fine. But sure enough I went home that night, researched pancreas and tumors and cancer on the Internet and convinced myself that i probably had pancreatic cancer and only a few more weeks to live.

The ultrasound just showed that there was, indeed, a mass. But the technician wouldn't tell me ANYTHING! They couldn't determine what the mass stemmed from, but a vaginal ultrasound showed that it definitely wasn't coming from one of my ovaries. So, then my first cat scan was scheduled & that technician wouldn't say a word either (now I realized the techs can't say anything). All of these tests took days to get an appointment.. then days to get the results. But. When my doctor received the results from my cat scan, the nurse called me and said "we have the ct results, can you come in uhhhh.. right now?" I was definitely worried. Dr. Crump referred me to a surgeon, Dr. Garry for a consultation - the next day. I took Greg & the boys with me (Charlie was just 2 1/2 & Jack only 6 months) I just wanted the surgeon to see who he was dealing with here.. I didn't have time for anything crazy like cancer.

Dr. Garry was great. Well, at the time I was a little annoyed because he talked about needing to go in and remove this tumor but really wouldn't know anything about the tumor or if it was cancerous until days after the surgery... oh, and he might have to take out some intestine.. and maybe some pancreas.. and maybe whatever else it was attached too. Uhhhh.. can I live without my intestines and pancreas? I guess that's how surgeons are.. they're used to doing all these kinds of surgeries and it's not really a big deal. Of course my body would adjust & they wouldn't take anything out that I couldn't live without. Whew.. i think. I would probably be in the recovery for 3-5 days. Not too bad, I thought. When did he want to schedule the surgery? Ummm.. how about Thursday? WHAT?!! March 16th was a day away! (I realized while scheduling this surgery that was supposed to be Dr. Garry's day off, but this was a pretty big deal).

It was a really emotional day for Greg and I. And it was so funny because right when we were leaving Dr. Garry's office we got a call letting us know that the offer we'd put in on a town home was accepted.. I have a tumor! I'm getting a house! It was so hard not knowing what the tumor was! What was going to happen? Was I going to be okay? Was the surgery going to go well? I'd had c-sections with the boys - no sweat. Easy in fact. Recover was great. But I was terrified of going into this real surgery. I totally kept thinking - what if I don't come through it? I was really scared. And also really angry that I had to deal with this. I was going to be really mad if I was going to die. I'm not ready to die yet! My life with Greg is just starting.. my kids are too little! They won't remember me & I'll miss everything!

My mom was amazing. She just dropped everything and hopped on a plane from Cleveland to come help with the boys. I did the best I could to get everything ready that last day before my surgery.. the house, the shopping & errands, packing for the hospital, getting up to the hospital to pre-register and do blood tests.. but I was an emotional wreck the whole day. I remember giving the boys their baths before bed & being so upset when I put Charlie to bed because that was the last time I was going to see him until after my surgery. We actually toted Jack with us to the hospital so I could nurse him one last time & Greg would take care of him during my surgery. His dad came down to help and be with Greg too.

Greg had given me a blessing the night before that reminded me that I'd been promised that I would see healings occur in my life. But I still had moments where my faith seemed to waiver and even right before my surgery, I kept having emotional waves of fear, that would then be followed by calm moments of quiet reassurance. Dr. Garry came to see me right before went into to surgery & he told me that he just wanted to let me know that he'd gone to the temple the day before and prayed for me. That gave me an incredible feeling of comfort and reassurance. I knew that we were on the same wave length & it was okay to go ahead into surgery. I kissed Greg & my little baby and they wheeled me down the hall.

The next thing I knew Greg & a nurse, named Barbara, were calling my name. Wow. Is it over already? Already? It had been 5 and a half hours!!! They'd removed the tumor which turned out to be about the size of a CANTALOUPE & 4 pounds. (how did I not know something that big was inside my body?) They had to take out 2 1/2 feet of my small intestines and a piece of my pancreas. It had also attached itself to my superior mesenteric artery, which they scraped, but definitely couldn't remove.

My recovery didn't go quite so hot. I quickly developed pneumonia that put me into the ICU for 3 days (which meant I couldn't see Charlie or Jack). And Jack was being so stubborn. That little stinker refused to take a bottle, wouldn't drink out of a cup. The were only able to spoon feed him very watery rice cereal. And I will forever be grateful to Melené her nursed him a couple of times (her baby was just 3 months old). After the ICU Greg would bring Jack to the hospital 3 times a day so that I could 'nurse' him but not being aloud to eat for those 11 days (a little longer than the initial 3-5 day estimation), my milk was more like water. I lost a lot of weight. I dropped to 117 pounds (today I finally weighed in at 125.. the most near-normal weight I've been at in months.. most likely thanks to the cruise!). My vocal cords had also suffered some inflammation due to the tube down my throat during surgery and I had absolutely no voice for 6 weeks. I think it took 2 solid months before I started getting some of my strength and energy back. And by then we'd been busy with a trip to San Diego, moving into our new home, and getting ready for our trip to San Francisco & Lake Tahoe.

My tumor was diagnosed as an abdominal desmoid tumor. It wasn't malignant but not exactly benign due to the fact that they are extremely aggressive and have a tendency to have up to a 90% recurrence rate. But. If it's going to come back, it's going to be in that exact spot, it'll be easy to keep an eye on. And if it's going to reoccur, chances are that it'll be sooner than later. And it's been a year! An excellent sign and a huge blessing.

I definitely didn't waste the last year. Yes, there are things that I should have worked on but didn't, things I just never seemed to get too. But I did do a lot. And I have a lot to show for this past year. I'll just keep plugging along and hopefully next year when I look back I'll be pleased with what I've accomplished.