Snow, so much snow fell this weekend. It was a big surprise in a way and with every passing hour it made me more nervous. How was I going to make it to the most important appointment to date of the past few months? Chemo started at 8am Monday morning, and I was determined to be there but I really hate snowy roads. Letting go of worry is so hard for me, but there comes a point where you have to. When you do God takes over, he has a plan which is so much more than I could have dreamed up. There was so much snow that by Sunday evening school had been cancelled for Clay's college and then Gabby's school as well. This meant that instead of driving me to chemo and staying for an hour or so before school started Clay got to spend the entire day with me, along with my parents who are always right by my side. Gabby and Elliot got the best day, Grandma R had made the drive up from sunny California before the snow happened and she took care of them all day Monday and again on Tuesday when school was cancelled again, and I had my port placement.
Chemo was so much better than I had expected, for the most part. The nurse I had was great, and it was a caring place that I felt was the right place to be and it was doing exactly what I need. Killing Cancer! Before starting any of the medicine I got an IV, and had to get a massive amount of benedryl, followed by anti nausea meds, tylenol and then a steroid (all IV fluids besides the Tylenol). The R of RCHOP was first, and my body responded great to it. Instead of having any of the possible side effects of fever, chills, shaking, etc. My blood pressure calmed down a bit, and I literally could feel the medicine working. I first felt it in what I said was my kidneys. NO pain, but there was just something happening, I sound crazy but I really could feel the drugs attacking the cancer cells and it moved around my abdomen. While dozing in my recliner from all the Bendadryl, with my mouth wide open, I jolted up bright eyed. I was breathing faster, but easier. I all of a sudden had a weight lifted from my chest, one that I knew was there but hadn't wanted to acknowledge. The medicine had just attacked the cancer that was in my chest… yes just an hour or so later my Oncologist happened to be walking thru the clinic with his newest coffee contraption and he came by to chat with us about the results of Friday's PET scan. Usually if you see your Dr on treatment days it isn't the greatest thing, it means something isn't going right or ?? We had all of my appointments happen in such a whirl wind and chemo started so quickly there wasn't ever a second talk with the Dr after our initial appointment (we were all determined not to wait any longer for Chemo, which I am so glad that Dr K was pushy with reception about getting things done when he wanted them done- NOW!)
SO, Dr K told us that I have a tumor in my chest which doesn't change that much.. treatment is still the same, maybe radiation after chemo is done. However it puts me more into a box that fits. Instead of me getting this "older mans lymphoma" type of cancer I have what is still diffuse large B cell lymphoma but it is primal mediastynal or something like that. The lymphoma most likely started in my sternum (how was it the thing that least bothered me until the past few months of this darn cough, and mind you I was running lots of miles too). This type of cancer is more common in young women, which I fit that box. I really haven't changed my mind on any of the things since hearing my diagnosis from my GI dr 20 days ago (yes it's only been that long!) The one and only thing on my mind, is doing whatever I need to do to get healthy and get cancer out of my body! I have so much positive feeling and light inside me, which has been surprising to myself but really thats what I have. HOPE, TRUST, FAITH, BELIEF, LIFE, LOVE, SUPPORT.
The rest of chemo day one was fairly good. The second drug was scary, and I'm so glad the nurse and I could talk and she was patient and listened when it wasn't feeling right. We ended up starting two other IV's, the 2nd vein wasn't happy and then the 3rd worked great. The medicine went in quickly after that and after a quick 8 hours we were on our way home!
Tuesday morning was another early morning, this was a trip to the hospital for my port placement. I've been more nervous about this than other things it seemed. It's the unknown, before January I've never ever had any sort of hospital procedure besides giving birth twice. Those are normal things, even tho they were unknown too at one point. It was nice to have the same drug pusher and radiologist doing the procedure that I had do my kidney biopsy that told us I had cancer. The port will be so good, no more IV pokes and safer for my veins. The port is tiny, just under my skin on the right side of my chest, with a catheter under the skin that goes into a vein just around my collar bone. Two incisions is all it took, but with a kink in the catheter it took almost double the time to get it done- and I think a bit work. I still have on the bandages so I can't see anything besides a little bruising and feeling the port and catheter lightly. I pray it works without complication. When it comes out I may get a tattoo there.
Now it is the point of this journey where all is back to being new and figuring out what now. I have been taking my steroids, figuring out that the first day I need something good before hand to eat and not just a healthy smoothie otherwise I end up fighting nausea all day. No pain meds or nausea meds since Tuesday, that's pretty good. I have to listen to my body, let it rest, recover, keep it healthy but also go on with our lives. I am beyond paranoid about germs. Walking into preschool with a face mask because really is there any other place with more germs? A trip to the store? well I have to find balance, of getting out and not going crazy at home but being safe to protect me. Lots of hand washing and sanitizer for sure. A wound check (to take off the dressing of the port) and blood count coming up Monday, and then it's two weeks between chemo treatments. xoxo
Friday, February 28, 2014
Sunday, February 23, 2014
It starts tomorrow!
So much has happened just since my last blog. Today was the most drastic in terms of seeing it. After washing my hair today, I split it into 4 little ponytails and braided each one. Elliot did the first cut, the scissors getting a bit tangled in my hair. Charlotte did the next, followed by Clayton and the last braid snipped by Gabby. It didn't look too bad, Elliot's side was super short, and Gabby's had more of the front in it with a little longer length. All my natural wave helped it have a little style. A few hours later my friend Jama, who happens to be my go to hairdresser came over. She worked her scissor magic and pretty soon I had a sweet little pixie. My first look in the mirror and I saw my mom in junior high. Cousin Joe saw a picture and said I looked like Grandma Eck. It's cute, and will be easy for the next few weeks before it is all the way gone. That's a good thing since I don't see putting too much into energy into appearances for a bit. Feeling good and comfort are much higher on my list.
Tuesday Feb 18 I met with my oncologist for the first time. I looked him up online ahead of time. He looked young and had longish hair. Good background and schooling it seemed, so we were set. Clay, my parents and I all went together for the appointment. We may have looked like quite the crew, my mom with her half shaved head, and us all walking into the Cancer center and it was me we were there for! Dr K walked in with a big ol' pair of cowboy boots on, shoulder length wavy hair, some sort of reddish pants on and a white linen Western style button up. He still looks young, but I have been assured he is older than I think (and his credentials support that). Blood pressure still high, but that has been a given the past few weeks. Lots of talk on what we are going to do to get started on treatment, what exactly Diffuse Large B Cell Lymphoma is, all the tests we need to get done, what the treatment is (RCHOP) all the side effects and and success rates. Scary, Scary and Scary. He took us out to reception to talk with them about what they needed to schedule for me, ASAP and how what was already scheduled was unacceptable and I was not going to wait that long to have it all done. A man who wants what he says done, and my goodness it happened (even with the hoops of waiting for pre authorization from insurance!).
Thursday I woke up after a little bit of a nightmare, the first since starting this journey. It put me in a really emotional mood, along with having PMS, oh and having CANCER. That day, I had a bone marrow biopsy. To date it is the worst procedure I have had. No prep, and only needing to be numbed up with lots of lidocaine (at least I didn't have to drink it like for my Endoscopic Ultrasound- that was the very worst taste). Clay was at school so my parents came with me, my dad being too queazy and waiting in the waiting room. My mom watched, interested at first and now saying she wouldn't do that again! A tiny small slit in the back of my right hip, a needle pushed into the bone and then the soft part where the marrow is. He suctioned out what he showed us looked just like blood with little white pieces in it- the marrow! I have to keep a plastic bandaid cover thing on it for like 5 days. The problem with it is, it HURTS. My hip is achey and hurts all over the right hip, making it hurtful to lay on and walk at times. All Thursday I could only eat a high protein, low carb diet due to the next day's test even tho everything Thursday had no restrictions. What I want to eat when sick and nauseous is not meat, or eggs. Later in the day we headed up to the hospital where I went in for a MUGA, which is a nuclear heart scan. They took some of my own blood out, then made it radioactive and put it back in me. Then I lay on a machine where they hooked me up to a mini EKG and took pictures of how my left heart ventricle works. They need to know how my heart functions before chemo. Thursday night I was miserable, throwing up, sore and emotional. Plus I still couldn't eat anything good.
Friday morning I went in for a PET scan, it was a much better experience than the heart scan the day before. Even tho it was much of the same thing- being injected with radiation (then laying around in the dark relaxing for a half hour) and laying on a scan bed while a tube goes around me and takes mind blowing pictures of all thats going on inside my body, it was much more comfortable. The Southern boy who did the scan helped me to feel peace, giving me blankets, putting on some good country music and making small talk, plus he wasn't allowed to tell me what the scan said (how bad the cancer is, my big worry). Leaving there I went straight to the frozen yogurt place for breakfast (well technically the first thing to eat in 24 hrs) but they weren't open yet. I ran into the store and got a few things we needed (like a birthday present for Gabby's friend, the one she was having her very first non family sleep over with that night) and then back for fro-yo which had just turned on their light. The owner was there helping set up for the day, and he is a parent from Gabby's preschool days so we sort of know each other. I got a small bowl, chatted with him for a bit and walked out with a free bowl of delicious fro-yo that hit the spot and knowing that another family is thinking good thoughts for my family and I. Later on it was back to another appointment. Even tho less than 3 weeks ago I had met with radiology about my renal biopsy, they had to do another consultation (so the books say, the nurse didn't think it was necessary) about my IV port placement. The nurse gave us look at what is actually going to be placed under the skin of my right chest, letting us feel it and learning about how they do the placement. That will happen early Tuesday morning after having Chemo all day tomorrow.
Today we got a little bit of a surprise when we awoke to snow. Yesterday there was a bit more than a dusting, but it rained and went away. The evening brought snow that stuck around, and piled up. There were about 4-6 inches when the kids and Clay were out building a snowman and playing. It has quickly doubled, then you factor in the wind that is making huge snow drifts around and some spots have well over a foot. I am not a fan of driving in the snow, or even other people doing it. Clay did venture out to pick up my parents and bring them here for the hair cutting party, the roads were fine then. With so much snow adding up all day I kept getting more nervous about making it to the Cancer center by 8am. God knows what he is doing, trust him! School is cancelled already, for Gabby and Clayton. That means that Clay now gets to stay with me the entire time I am at chemo instead of having to drop me off and going to school. Grandma R made it in last night before the snow came and she is more than lifting the stress I could have about finding childcare for the kids. She will be here bright and early to take care of them each and every time we need her. What a relief to know I don't have to shuffle them around to see who can help (even tho I have so many willing friends and family). Pictures to follow, Danny has all the pics of the kids cutting my hair and i haven't upload any from my phone yet.
On to the fight we go, tomorrow the Chemo will enter my body- working its science and magic to rid my body of this ugly Cancer. xoxo
Tuesday Feb 18 I met with my oncologist for the first time. I looked him up online ahead of time. He looked young and had longish hair. Good background and schooling it seemed, so we were set. Clay, my parents and I all went together for the appointment. We may have looked like quite the crew, my mom with her half shaved head, and us all walking into the Cancer center and it was me we were there for! Dr K walked in with a big ol' pair of cowboy boots on, shoulder length wavy hair, some sort of reddish pants on and a white linen Western style button up. He still looks young, but I have been assured he is older than I think (and his credentials support that). Blood pressure still high, but that has been a given the past few weeks. Lots of talk on what we are going to do to get started on treatment, what exactly Diffuse Large B Cell Lymphoma is, all the tests we need to get done, what the treatment is (RCHOP) all the side effects and and success rates. Scary, Scary and Scary. He took us out to reception to talk with them about what they needed to schedule for me, ASAP and how what was already scheduled was unacceptable and I was not going to wait that long to have it all done. A man who wants what he says done, and my goodness it happened (even with the hoops of waiting for pre authorization from insurance!).
Thursday I woke up after a little bit of a nightmare, the first since starting this journey. It put me in a really emotional mood, along with having PMS, oh and having CANCER. That day, I had a bone marrow biopsy. To date it is the worst procedure I have had. No prep, and only needing to be numbed up with lots of lidocaine (at least I didn't have to drink it like for my Endoscopic Ultrasound- that was the very worst taste). Clay was at school so my parents came with me, my dad being too queazy and waiting in the waiting room. My mom watched, interested at first and now saying she wouldn't do that again! A tiny small slit in the back of my right hip, a needle pushed into the bone and then the soft part where the marrow is. He suctioned out what he showed us looked just like blood with little white pieces in it- the marrow! I have to keep a plastic bandaid cover thing on it for like 5 days. The problem with it is, it HURTS. My hip is achey and hurts all over the right hip, making it hurtful to lay on and walk at times. All Thursday I could only eat a high protein, low carb diet due to the next day's test even tho everything Thursday had no restrictions. What I want to eat when sick and nauseous is not meat, or eggs. Later in the day we headed up to the hospital where I went in for a MUGA, which is a nuclear heart scan. They took some of my own blood out, then made it radioactive and put it back in me. Then I lay on a machine where they hooked me up to a mini EKG and took pictures of how my left heart ventricle works. They need to know how my heart functions before chemo. Thursday night I was miserable, throwing up, sore and emotional. Plus I still couldn't eat anything good.
Friday morning I went in for a PET scan, it was a much better experience than the heart scan the day before. Even tho it was much of the same thing- being injected with radiation (then laying around in the dark relaxing for a half hour) and laying on a scan bed while a tube goes around me and takes mind blowing pictures of all thats going on inside my body, it was much more comfortable. The Southern boy who did the scan helped me to feel peace, giving me blankets, putting on some good country music and making small talk, plus he wasn't allowed to tell me what the scan said (how bad the cancer is, my big worry). Leaving there I went straight to the frozen yogurt place for breakfast (well technically the first thing to eat in 24 hrs) but they weren't open yet. I ran into the store and got a few things we needed (like a birthday present for Gabby's friend, the one she was having her very first non family sleep over with that night) and then back for fro-yo which had just turned on their light. The owner was there helping set up for the day, and he is a parent from Gabby's preschool days so we sort of know each other. I got a small bowl, chatted with him for a bit and walked out with a free bowl of delicious fro-yo that hit the spot and knowing that another family is thinking good thoughts for my family and I. Later on it was back to another appointment. Even tho less than 3 weeks ago I had met with radiology about my renal biopsy, they had to do another consultation (so the books say, the nurse didn't think it was necessary) about my IV port placement. The nurse gave us look at what is actually going to be placed under the skin of my right chest, letting us feel it and learning about how they do the placement. That will happen early Tuesday morning after having Chemo all day tomorrow.
Today we got a little bit of a surprise when we awoke to snow. Yesterday there was a bit more than a dusting, but it rained and went away. The evening brought snow that stuck around, and piled up. There were about 4-6 inches when the kids and Clay were out building a snowman and playing. It has quickly doubled, then you factor in the wind that is making huge snow drifts around and some spots have well over a foot. I am not a fan of driving in the snow, or even other people doing it. Clay did venture out to pick up my parents and bring them here for the hair cutting party, the roads were fine then. With so much snow adding up all day I kept getting more nervous about making it to the Cancer center by 8am. God knows what he is doing, trust him! School is cancelled already, for Gabby and Clayton. That means that Clay now gets to stay with me the entire time I am at chemo instead of having to drop me off and going to school. Grandma R made it in last night before the snow came and she is more than lifting the stress I could have about finding childcare for the kids. She will be here bright and early to take care of them each and every time we need her. What a relief to know I don't have to shuffle them around to see who can help (even tho I have so many willing friends and family). Pictures to follow, Danny has all the pics of the kids cutting my hair and i haven't upload any from my phone yet.
On to the fight we go, tomorrow the Chemo will enter my body- working its science and magic to rid my body of this ugly Cancer. xoxo
Sunday, February 16, 2014
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
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
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