Tuesday, January 29, 2013

Stage 1A Grade 1 Mucinous Adenocarcinoma

So it's official that I do indeed have ovarian cancer. Stage 1A grade 1 mucinous adenocarcinoma. If you are going to have ovarian cancer, this is a pretty ok diagnosis. It was isolated to the mass of the left ovary which is now gone. There's no traces of it in the right ovary, the fallopian tube or the appendix, which is really good. Survivability at this stage and grade is above 90% so that is good. The gynecologist-oncologist told me that I needed to hurry up with having the kids I want to have, then to call him for a complete hysterectomy, ideally in about 2-6 years. Meanwhile, I'm to follow up with my local doctor every 4 months until I'm ready to call up the specialist. It's good that he's not concerned enough to want me to follow up with him, and it's good that he's not concerned enough to want to do the complete hysterectomy now. I'm having a bit of a time adjusting to the idea of loosing that much of my body to a hysterectomy, not to mention the hormonal trauma of immediate menopause and the rocky road of hormone replacement and long list of side effects and direct negative effects on many other body systems. A friend counseled me to take it one day at a time though. That surgery is several years off, and there's lots of possible changes in treatments in several years. She also reminded me that tons of people walk around with stage 1 cancers and many never learn about it until they are quite old, if at all, so this isn't necessarily something to get too worked up over. I was rather lucky that my tumor was a fast growing type as that made it easily noticeable, saving me from a later staged cancer that would be much more serious. I've chosen to tell this to lots of people I'd normally call via this blog because I think it is much easier to understand this way, so don't feel slighted if I didn't call you!

Sunday, January 27, 2013

oophorectomy, ovarian cystectomy, appendectomy, and omentectomy

Were here I am, post surgery, so you all can surmise that things went more or less ok. I think they went very well indeed, but we are still awaiting results on the post-surgery pathology report. They went in through a vertical incision below my belly button about 4 inches long. They found the tumor to be roughly volleyball sized, and drained three liters of fluid out, (that is slightly more than a gallon) reducing it enough to get the remaining mass out through the incision. They did a initial analysis of the mass during the surgery and decided it was likely a mucinous epithelial tumor.
They removed the tumor, the left ovary it was engaged with, the appendix, (as it can be a source of this type of tumor) and a smaller cyst on the right ovary, as well as samples of tissues all around to send off to pathology to help them get the big picture on what is going on. I came to in recovery and began the process of getting well again. I had wonderful hospital support from the nurses on staff and benefited greatly from the constant presence of my friend Erin, a nurse practitioner herself, who helped care for me and helped me to understand all that was going on. We won't know for sure until the pathology report comes back, but this sort of tumor could be nothing much to worry about, and if that is the case, there's no reason for me to put of trying to conceive beyond letting my incision heal for a few months. We should hear back in anywhere from a few days to a few weeks, depending on how many opinions are necessary to interpret the results.  I stayed in the hospital two nights, before heading home Thursday afternoon. I've been recovering more and more daily. At first, I spent most of the day in bed napping and popping narcotics, and watching netflix, but I had to get up to go to the bathroom, and I began adding a trip downstairs to each trip to the bathroom, and soon I was able to sit at the table for a few minutes and eat a few bites of something, and soon I was able to bend over and squat slowly, and go outside for a few minutes, and all the while reducing my pain meds. Julia has been wonderful to me. I remind her every time I see her to be gentle with my tummy and she is! She is fascinated with the incision, and especially impressed with the staples holding it together. I've had great help with her. Dave has upped his game, balancing work and Julia's needs and first my dad was here,  here now is my mother-in-law, and next comes my mom, to be followed by one sister, then another. I'm lucky to have so many supporting me!
Julia and her Grandpoppa
painting pictures!
visiting mommy in the hospital 
baking and decorating a cake with Grandma Gini

We turned it into a No More Nunnies party! 
I was so happy to sit outside for a few minutes (yesterday) and today I walked around one block. I'm feeling loads better, but still get wiped out after I've been up and about for 30 or so minutes and have to go lay down for a good while. 

Saturday, January 19, 2013

The last nunnie


Tonight was Julia's last "nunnie" or nursing session. A few months ago we weaned down to just naptime and bedtime, and for a long time that worked really well. I got fed up with it when she wanted to nurse all the time, but it served a huge function at those times, calming her down and helping sleep come easily. Facing surgery, I realized that things will be forced to change. I will be apart from her for the days I'm in the hospital and after that, I will be in too much pain to let her near to my stomach, such that nursing requires. I won't be able to take a accidental kick or nudge, not to mention all the drugs that will be circulating my body and transmitting through the milk. I decided that I'd give her two day's notice, since she can understand the idea of tomorrow, telling her yesterday that tomorrow would be the last day for nunnies. I explained why too, that mommy had an owie deep in her tummy and that I'd be going to stay with doctors for a few days while they helped it get better. I told her that Daddy and Grandpoppa Jack would be with her while I was gone, then after awhile Grandma Gini would come, and after that, Grandmomma Dawn. She observed that I'd need some bandaids to help me feel better. I reminded her often that tomorrow's nunnie would be the last one, and reminded her again today. I decided on today as the last day because I want her to have sunday and monday to adjust before I leave on tuesday. I didn't want to just leave for awhile and then tell her "sorry, no nunnies" when I came back because I think it will be hard enough for her to understand that I won't be able to help her with things for a long time. We talked a bit about if she'd be sad not to have them anymore ("yes") and what we could do instead, like rocking in the chair, singing songs, reading books, giving hugs. She seemed ok with that. I asked her what nunnies tasted like, ("Purple. And pink.") and when we were done, we said byebye and thank you to the nunnies and she got in bed and went to sleep like she always does.
rocking out with Olaf, making Grandpoppa's birthday cake
watching some saturday morning West Wing with Daddy
going for a "buffalo ride"
We got another chicken! someone around here was looking to re-home this little silkie hen since her rooster companion died. She's been living in a cage, so it's a bold new world out there for her in the coop with the others. She seemed to be adjusting ok today, and the others don't seem to be bullying her. I had to lift her from the corner of the pen where she was curled up against the chicken wire once night fell and place her up in the coop with the others. Hopefully she'll catch on quickly! Silkies have black skin and black meat, and their only feathers are the downy kind, so they can't fly. She seems friendly and let me pet her in the coop today. She's not laying yet, but she'll probably start soon. I'm super curious to see what color eggs she'll give us. 
and just in case you were curious about what a grapefruit sized tumor looks like from the outside, here I am laying down sucking my stomach in! I can't button my pants anymore and am considering digging out the maternity jeans. 

Friday, January 18, 2013

Good News and Surgery

Some good news: the oncology Doctor thinks that this tumor wrapped in and around my ovary is not cancerous. The only way to tell for sure is to look at it, and since it is so huge (bigger than a grapefruit) it needs to come out anyway. Thus on Tuesday, I'm going in for abdominal surgery. They will make an incision below my belly button (3 inches or so long if they can get it out through that, but they will go bigger if they have to) and remove the tumor and the ovary. The surgery won't cut into the uterus or the other ovary (unless they find the unexpected) so my future fertility will probably be ok. I'll be in the hospital for recovery for 2-4 days, then on heavy painkillers for awhile. No driving for 3 weeks. No lifting more than 10 lbs for 4-6 weeks. (That's a bummer when your almost 3 yr old is 40 lbs!) I've put a call out to some family to see if they can come out after surgery to help, and it's an option to send Julia home with my parents for as long as necessary, so we are starting to graft together a plan for the post-surgery recovery. So praise be for the good news, and prayers for the surgery!

Saturday, January 12, 2013

some bad news

About a week ago, I noticed that my uterus felt large, similar to being a couple months pregnant. I have an IUD, so this was a bit of a shock. The pregnancy test came back negative. Dave and I had just decided that the next few months seemed like a good time to begin trying for another baby, so I made an appointment with my doctor to remove the IUD and to check out why my uterus was so large. She sent me off for a diagnostic ultrasound to confirm her thoughts that it was a large uterine fibroid, a benign mass that is quite common in women. Unfortunately, the ultrasound revealed that the mass was in my ovary, not the uterus and it didn't look good. It looks like ovarian cancer. She's referred me to a gynecology oncology specialist in Portland, who will take a biopsy and do other tests to confirm that it is what it is and decide what can be done. I see the specialist next Friday, so until then, I'm left to hope for the best and try not to think about the worst. There is one amazing component of the story and it is that on Jan 1st, I switched insurances, from a $10,000 deductible to a $2,500 deductible plan, thinking we'd want the lower plan to cover a baby's birth. I felt the mass on about Jan 6th. Talk about a crazy coincidence or divine intervention. I'd appreciate your prayers and good thoughts. Ending with some devastatingly normal pictures of our daily happenings.

Wednesday, January 2, 2013

Post Christmas

We are unwinding from the holiday gathering to end all gatherings! We hosted Trevor, Angie, Aubrey, Bekah, Sarah, Andrew, Thomas, Joan, Art, Melissa, and Ted in various combinations from the 26th to the 30st. (and Caroline and Joe one night, and Chris, Erin and Anna for lunch one day too!) It was a riotous good time with incredible amounts of foods prepared and consumed. Here's the evidence:
On a walk with Aubrey! She's a full year older than Julia, but they were the same height! Julia loved having a full time friend and they did a pretty great job of getting along! 
checking out the Columbia
lots of dress up clothes
the bumblebee outfit was a clear favorite and all she wanted to wear for days, but oddly enough, she hasn't worn it since Aubrey left. 
We ended one meal only to get ready to begin another!
a grocery run! 
kind of random, but I saw the cutest little train made out of wine corks. I'm gonna make one!
Julia just basked in the attention of so many people. She'd check in occasionally with Dave and I, but then she'd disappear for hours, playing with various people.
more feasts!
Aubrey and Julia spent lots of time sitting at her little table playing with playdough. She made lots of hearts,  stating  "I made s'prise for Gamma Gini" ect. 
lots of stories, lots of memories, we even sang Vespers '86, a service we know very well from our time at Holden (where this group all met) and got all choked up. 
Julia loved on her Godmother, Bekah. 
Saint Lucia came...
Joan was up to her usual hilarity.  Our guests stayed on two air mattresses, a couch, a cot, and sleeping bags all over the floor. 
Gustafson family photo! 
sharing the umbrella on a walk.
a group photo with many of us. 
Julia making an attempt to trounce Ted at Diplomacy
and playing "church!" The girls are the pastors, the rocking chair of animals is the congregation and I got scolded "no cameras in church"
We were so pleased to have so many friends come and stay. When they all departed, the house felt achingly empty! We all wandered around that day, and were still at a loss come new year's day. Julia was constantly asked where the friends were and I was cranky and short with Julia and felt guilty for starting out the year by being pissy. Today felt more normal, as Julia and I could go do our normal storyhour thing. We took down all the Christmas decorations and hauled out the tree and re-arranged the furniture and changed up the space inside. That was sad, as our tree was so lovely, but also felt cleansing. I'm now looking at all the corners, with deep cleaning on my mind.