The hardest week of my life.

Where do I even start?  So much has happened in the past 11 days.  I guess I could start at the beginning, the main reason why I let my blog go silent for the past few months.  I just wasn't feeling great, I was sick.  September I ran a half marathon and was feeling great, and I continued running thru October.  November started out with a different story,  I was having some weird tummy aches and heartburn or food not agreeing with me.  Maybe my gallbladder was acting up?  The week before Thanksgiving I came down with the worst side pain I've ever felt.  It lasted days, on and off.  It was debilitating.  I did't eat and would have Clay take over the kids so I could take a nap.  Up in the middle of the night with pain and taking baths (I think I averaged about 2-3 baths a day for a few weeks, and I still take one almost daily.  It's just comforting and I love the heat.).   The pain eventually got so bad with no sign of letting up that I went to the walk in clinic.  The NP I saw was very kind but didn't have a clue what was wrong.  I took a round of antibiotics and some antacids.  She called to check on me 5 times during the next week or two.  She ordered blood tests, and after we got back from a relaxing Thanksgiving in Gig Harbor and I had started to feel better I went in for the test.  The next day I get a call saying come in so we can talk, your pancreatic enzyme level is very elevated.  We waited a week and did another test, checking to see if the level was still elevated.  It was, but had gone down.  Without any other tests they said they couldn't do much else for me but if I wanted they would give me a referral to a specialist.  I felt good, and I didn't have any insurance so I thought I would just get better.

Christmas I got the flu, and a cough.  Somewhere along this time I also started throwing up pretty frequently- a few times a week whenever something I ate didn't agree with me.  Beginning of January and I wasn't better, and I now had insurance.  Called for my referral and they asked why? but gave it to me anyway.  There was a cancelation and I was able to get in with Dr. Sch pretty quickly.  Clay and I went to that appointment, and told him all that had been going on. He pushed on my tummy and asked questions and thought maybe it was my gallbladder that causing all these problems, maybe it was what had caused me to have Pancreatitis (the awful side pain during Thanksgiving week).  He said let's get you in for a full abdomen MRI.  January 27th I think, and it was easy.  I didn't get to listen to music and  had an IV for contrast but it went really smoothly.  Two days later Dr. Sch called me, I had Evie asleep in the car and had just dropped the two others off at preschool.  I parked in a parking lot and scribbled some notes down on a sticky note that was close by, between tears as I am trying to grasp all that he is telling me.  It looks like my pancreas has a spot that is 3cm larger than it should be, the pancreatic duct is enlarged and both my kidneys have defects (abnormalities).   I drove the 2 blocks to my sissy's work, knocked on her window and had her come out.  They think I have autoimmune pancreatitis.  The Dr has talked to 3  other doctors and the radiologist and he is setting me up with another GI specialist in Seattle at Virginia Mason.  We cried, she came home from work early where Evie and I were now snuggled on the couch.  She picked up the 3 other kids from school and Clay and I went to tell my parents.  Nurse My called while we were at my parents, she was setting up all paperwork for more lab tests and the Dr  in Seattle.  We went straight up to see her, got the slips so I could get right in for lab work and a chest x-ray (to figure out why I still have this pesky cough).  The lab didn't even know what one of the tests ordered was- I guess it was one the Seattle Dr had ordered that they don't do up here.  I went ahead with all the others.
  Not sure what any of those test results ended up saying, I never got briefed on them till later. They had me scheduled for a kidney biopsy, just to see what the defects were- is it inflammation from the autoimmune disorder? It's got to be, but just to be safe we will check.  Wednesday February 5th I checked in at the hospital in Bellingham for a kidney biopsy.  I was nervous, but there was already so much going on it wasn't surprising my blood pressure was a bit high.  I think we were the only ones back in the outpatient surgery area when we got there at 7am.  Thanks to my Godmother "Aunt" Kathy who came to our house in the dark of the morning to be here with the kids while they slept and got them off to school. My nurse was the sweetest older lady, who was gentle and kind and prayed that everything turned out good for me.  My drug pusher Steve, took my hospital bed on a nice ride thru the halls to the CT room.  All of a sudden I go from sitting with Clay and talking, to being in a stark white room with Steve, Dr Dawg and the CT guy Paul who went to high school with my father in law.  They all chatted with me and everyone keeps making comments on how young I am.  They usually have lots of old people.  They gave me a little bit of medicine so I was "consciously sedated" and went to work.  I fell asleep for part of it, and the amnesia qualities of the drugs make it tough to remember much.  They took 4 little pieces out of my left kidney, from my back.  I didn't feel any pain even after the procedure. Two hours after recovery and I was on my way home to rest. A bandaid on my back and that was it.
  Thursday morning I had plans to head down to Seattle, my mom, dad and sister were already down there where my mom was having brain surgery.  Yeah, it was a big week.  Kathy and I got down there just after she was done, and after waiting a few hours Molly, my dad and I went to see her in recovery. Between visits to check on my mom, but giving her time to rest I checked my phone non stop for any chance the Dr would call with my pathology results.  Friday afternoon Molly and I headed home from Seattle to be with our families.  My dad was being incredibly strong and doing a great job of supporting my mom and all she really wanted and needed was pain and anti-nusea meds and sleep.  I called my Dr's office, he wasn't in today they said. Why was I trying to get results faxed to Virginia Mason, had they referred me? YES, and with two differing answers from Bham and Seattle I figured I would make sure I got it taken care of so the specialist I saw had all the important things he needed. I was frustrated. Molly is such an advocate, "it took asking three times to get mom an ice pack for her head, it might take calling twice to your Dr to get some results."  I called again asking if Nurse My could call me back, and telling them that the pathology was due in and both the biopsy Dr and hospital discharge papers said to make an appointment for that day to get them..... when I had tried to make an appointment they dismissed it without even asking my name and said I would get a phone call when they were in.  So now, it's Friday 4:15 and since my Dr isn't in the office today I have to wait all weekend to hear the news.
   Ten minutes later I walk in the house to kids and a husband happy to see me.  Then Dr Sch calls.  I get out my notebook and start writing what he says.  LYMPHOMA.  Diffuse Large B Cell Lymphoma. We will get you in earlier for your pancreas biopsy, we won't wait for mid March.  He will talk to Dr. R in Seattle.  We will get into an oncologist.  Tears, I don't even know what he really said. Such a blur, and in that moment my life changed.   I point to the word on my notebook while the Dr is talking, showing Clay.  The kids are still running around, and now wondering why I am crying.  The evening and night were long.  Mindi came, dressed the kids in pjs while Clay made them dinner.  I was in a fog. My dad called during all of this, to update me on how much my mom had improved since we left and to see if I had heard anything.  Nope, I wasn't going to tell him.  Not with everything else going on.. yet I couldn't keep it from him either.  More tears.  Mindi took me to pick up the pain pills Dr Sch gave me, I told him enough toughing it out- this cough hurts.  We stopped by Andrea's house where Jama was picking her up.  There the 4 of us sat huddled in Mindi's car, crying and then holding hands while each of them prayed.  It was exactly what I needed.  Gabby kept asking me "mom, can we talk? so what's wrong??"
  I don't think I slept Friday night, but just lay there with my mind all blank.  Saturday morning was Gabby's last basketball game of the season.  Once we got home we told the kids just that I was sicker than we had thought.  They knew something was going on, and with so many phone calls and tears they would be hearing some more.  Gabby overheard Clay say "blood cancer" though she doesn't know just what that means.
  We all got the tummy bug. Elliot Saturday night, Gabby home sick from school Monday.  We all thought it was just her being worried and wanting to check on me.. 11 throw ups later it was more than the real deal.  Clay got it Monday night too.  I got it Tuesday, no lunch or dinner for me.  Kids slept at Molly and Danny's, we had to leave early for an 8:30a appointment with Dr R at Virginia Mason, just a consult to figure out what was going on with my pancreas.  How his head Nurse Annie remembered me from talking on the phone with me two weeks earlier to stopping by their office the week before (she didn't have to look me up, knew what Dr R wanted to schedule and that they had just gotten some of my papers!).  We met with  a Fellow, he asked lots of questions about my pain and what made me sick.. Oh he didn't know I had just gotten diagnosed with Lymphoma.  Dr R then came in, we talked and he felt that it would just be way to rare for me to have two different diagnosis, lymphoma and autoimmune pancreatitis.  Let's get me in sooner to biopsy the pancreas, could I stick around that day and do it? YES!  He got it all lined up, and we were due back to check in at 3p, clear liquids till noon.  Oh I still haven't eaten since the flu yesterday.  Clay and I shopped around Seattle, he picked out a Seahawk champions sweatshirt and Nike town for his birthday.  he ate lunch, I had sprite (no where we could find had clear broth ).  I got new sweat pants, and slipper/shoes.  I'm all about comfort these days.   With no real energy to walk around downtown, we waited at the hospital. I worried about not having bought Gabby Valentine's for her class party the next day, and we may have to spend the night at the hospital.  Molly took care of it all, I didn't have to worry about the kids- she would keep them and get cards.  I got called back late, and eventually the nurse got an IV started.  The anesthesiologist Steve was kind and caring and kept saying "your young and healthy!"  Yes I am, except this cancer I have.  "Yes, but you are going to be young and healthy still!" The procedure room for this was so different than my 3 guys in Bham.  There were more nurses than I remember, and a cytologist would be in the room too so they could try and determine right then what the cells were. Micky the nurse anesthesiologist helped get my IV working, she and all the ladies told me they hadn't shaved their legs either when I apologized for it laying there in my gown.  I hadn't known I would be doing this today, but thanks everyone for squeezing me in.  Nurse Patrick would have me bite something to hold the tube in place once they started the meds.  HUH? they haven't yet? I'm a light weight, he said they barely were started but since I felt I could have it now.  That's all I remember.  They woke me up and I was back in my recovery room, with Clay, sis T and hubby J there to greet me.  I had a cough, which well I've had it for months and you just stuck a camera down my throat and did a biopsy on my pancreas (endoscopic ultrasound with biopsy).  I didn't have to have a breathing tube, I did great and just had deep sedation.  Dr R gave us a report with pictures and a half hour later they wheeled me down to the parking garage.. last ones to leave for the day. A few bites of dinner at U village and then Clay and I were home by 11pm.
   Dr R called me Friday to check on me, and talk with me a little more about the biopsy.  He was right in his prediction, it wasn't a second diagnosis- rather my pancreas is bigger because it has a lymphoma tumor or mass.  That will just melt away with chemo. So why have I been throwing up for months, losing 30 pounds, what's the deal? I'm sure the cancer played a roll in all the weight loss, no appetite and general getting sick.  But, the tumor is making my pancreas "pissed off" and it's probably blocking the duct making it hard on my body to do its job.
   Nurse My called me 3 times Friday, and so did oncology.  They are getting me in earlier and we are  going to get started kicking this cancer out of me.  I go Tuesday to the oncologist, and hopefully we will have a treatment plan worked out and I can start it ASAP so I can get on the road to being healthy and cancer free.  I have had so many wonderful people on the medical side working for me already, working together and with me and making me feel like they care and they will help me to get better.  In addition to the medical side of things, I truly do have the very best family and friends around.  prayers, texts, phone calls, messages, flowers, my favorite salad, meals, treats, and offers for so much more.  Thank you for being on this journey with me, I have so much trust, hope and faith for the future.  xo