Picture catch up

 Way back when Gabby turned 7 we had a very ROCKIN' birthday party, complete with microphone cupcakes.

 Elliot has since then turned 5, and he decorated his cake for the party we ha with his preschool friends.

 Then we had a family party with a very pretty cake and lots of fun, after all the septic problems!

 Backyard family pics

 These two, love them.

 Mother's day was a fun sunny day, with some boating.

 Started out Memorial weekend with lots of fun at the parade, a trip to Boulevard and then Pho for dinner. 

Did I mention that our dear friend RyRy came to visit us for the weekend.  The kids  were so excited they wouldn't fall asleep last night and then woke up at 5:30am.  

two more

So as I walked into the meeting with my doctor, a tray full of homemade cupcakes in hand and all ready to celebrate the last chemo we got some other news.  I am still in complete remission, but after talking with quite a few other doctors it was concluded that I should have 8 rounds of chemo just to make sure that every microscopic bit of cancer really is gone. To say I was bummed would be a big understatement.  I was told over and over that it would get worse, and well after the first couple of cycles it started to ring true.  So not only now do I have more chemo, but feeling worse from it all too.  Tuesday I had a meeting with Dr K, and I was able to get more info on why it was decided I need to do the extra cycles, even though the PET scan had shown I was clear after 4.  It mostly comes down to me being YOUNG, and healthy too.  Plus it turns out that the specific type of lymphoma I had was very rare, like only 2% of cases. That means there isn't as much research and information on it as other types.  There would be no good reason to have me do radiation, it could be damaging in the future for me and who knows if it would do any good at all.  Would they do the extra two rounds on a 70 year old, probably not.  I have so much life to live since I am young, it is worth it to do the extra cycles to make sure it is gone! Thursday I had cycle 7, and besides sleeping for the first few hours after getting hit with Benadryl it was fairly normal.  Now I just have to deal with the fairly constant fatigue and nausea.  Looking forward to one last cycle and then starting the road to being fully recovered!

Chemo 4 & 5 plus some GOOD NEWS

Let's just start out by saying the news I got is more than good.  It's the best thing ever.  COMPLETE REMISSION!   For some reason I wasn't as nervous as I expected to be.  I was anxious thinking about going in for the PET scan, but that wasn't even as nerve wracking as I thought it would be.  I knew it was going to be okay. I think the biggest thing I have learned or changed about myself is that I can't worry about everything.  It does no good, and it doesn't change anything.  Thinking about this whole journey I would have guessed it would have made me more of a worrier and scaredy cat, but it has been opposite.  Yes, I am still a bit of a helicopter parent and over thinker of things but I can't spend my days, months, and years worrying about all the bad things that could happen.  So my PET scan was great, I had the same tech who had done my first scan and he chatted with me again and when he gave me the option of music I told him something upbeat- no sad country like I picked last time.  The first song I heard that morning was "today's the best day of my life." The scan ended with me hearing "Happy!" That was Friday the 18th, and I met with the Dr on the 23rd.  Such a good and emotional feeling to be reassured that the medicine did its job and as Clay says- "no glowing on the inside, just on the outside!"  NO sign of cancer.  The next day I did have Chemo #5 and we are still waiting to hear what the radiation side of the Cancer center has to say about my case and if I will need it (Dr didn't even want to get into any of that, we will wait and see what they say before we talk about side effects, etc).  I keep learning, everything is so new still so I try to have it explained to me and hopefully have the facts straight in my head and when I tell others.  All my tumors are gone- the very large chest tumor did leave scar tissue which I didn't even know was a thing.  My cells all went to work there and healed where the tumor was so it left scar tissue just like if I were to have an external injury.  I will be monitored yearly forever I think, but the next three years are what we are looking at now. The hardest news was to hear that it is more likely to reoccur in me than for someone who has never had it to get it. Is there anything I can do, no.  Be Happy, love lots and live a great life!
  To recap Chemo 4, well I don't really remember too much about the details of that cycle.  Each one has gotten a little worse, but I am still amazed by how well all of it has gone.  Nausea picked up a bit, runny nose and eyes and raw tongue.  My nails are the newest side effect, at first I thought the long nails that grew and then all broke made my fingertips feel different.  It hasn't really gone away, it's a strange sensation.  Now most of my nails are sensitive and a little achey, plus both thumbs and one pointer have a little darker moon.  Our very first meeting with Dr K he told us all these horrible side effects of the drugs- one was "your nails could turn black and fall off, it's really gross I've seen it!"  Awesome..  hoping it doesn't get much worse than this since I have only one treatment to go.  Tying balloons is hard and untying shoelace knots, and back scratching all ache to do- it's almost a tingle.  I did have about 3 days of being really tired, the most of any cycle.
 After the good news appointment I had chemo 5.  I knew the whole time that what we were aiming for and wanted was a clean scan plus two treatments to make sure.  Knowing that the cancer is gone made it so much harder to keep up with the attitude of loving chemo (seriously, I have felt like I love it.  For what it does, it is so good in so many ways!) Thursday started off with me being tired, and throwing up which hasn't happened in months.  I was tired most of chemo, even taking a snooze.  I had a different nurse than my normal ones I feel like I know.  She was fine, but I sat around waiting for medicine more that one day than all of my other days combined.  It was a hard day I think too because I have a little bit of almost guilt for having done so well on chemo and being in remission.  My friend who I have met along this journey (our kids go to school together, different diagnosis but still going through this together) had a hard day (our first day there together since we have different schedules and regiments).  She didn't get to do her infusion, instead ended up needing a transfusion for low levels.  It's a hard place to be emotionally, me feeling great and healthy and knowing others don't have that same level of comfort. Dr K and I even had a little chat about the "guilt" I was feeling.  After my 6 and a half hour infusion we were home where I once again napped- instead of being full of foggy headed energy.  I fell asleep on the floor, and then proceeded to sleep almost a normal nights sleep that night too.  More nausea for the weekend, and Saturday which also happened to be opening day of fishing (Pretty much a holiday around this house, well for some) and packed with birthday party running around.  My eyes were puffy and tired the entire day, my head was dreary feeling and I had no energy.  I couldn't even wear the wig because it just seemed too constricting on top of all the other blah feelings going on.  I fell asleep on the couch at 8:30p, and besides a few wake ups during the night I was in bed or on the couch 11 hours.  All that sleep helped because Sunday was a much better day, and Monday even better than that.  The sun is shining this week and we are taking advantage of it!  A play date yesterday spent outside in a friends yard and once we came home Elliot and I spent the entire day outside.  I pushed the boat out of the yard where it was temporarily living between opening day and today.  Mowed most of the front yard (until the mower ran out of gas and I wasn't sure which gas can was the right one to use, so we waited for Clay to get home and then he did the rest!)  I weeded the front of the yard and even ran to chase down the bus (it was early!) but that sure made me out of breath and confirms how much my body isn't used to doing these seemingly normal activities.  I feel it today, it's almost a good feel too.  I miss being active but am so thankful for how good my body has been to me.  I think today's soreness is a combination of the work I did yesterday and my shot that makes my bones sore from doing all the work to amp up it's blood production.

 Two of my hearts, love these kids!

 Our hike with Grandpa, we didn't make it that far but this boy sure loved climbing off trail and using his rope.

 Ringing the church bell.  What you don't see, the little one going up and down with the rope!

 The start of Chemo 4

 My turn in the human hamster ball

 Elliot dressed up with his new favorite swim trunks, shark or bear necklace (he calls it both, but who knows what it is!) and some face paint.

 Goofy kids before bedtime

 Easter on the beach, they really loved Auntie T showing them all the squirters!

 My first time Stand Up Paddle boarding, I love it!  Got a private lesson from T, I didn't even fall in!

 Tball has officially taken over most of the week, or so it seems.  E had an awesome hit last game!

 Chemo 5

 Yesterday's art work.  Elliot said "mom, I echoed!"  so now he knows how to spell Butt.

This pretty girl and I had an early morning breakfast date.  While the boys were out fishing, we went and had a fun breakfast out (when do we ever go out to breakfast ??? ) and then went down the street to her school.  

Chemo #3

We are hopefully at the half way mark for this chemo journey.  Tuesday I had my appointment with Dr K.  Scheduling just so happened to work out so that sister T got to come and spend some of her spring break with us and "relax" at the cancer center with me. Dr K kept asking questions to see what or if was having side effect wise.  Nope, not much of anything besides the raw tongue and being bald.  He said they weren't used to seeing "people like me."  I have been doing great, and the treatments are going really well. We talked about the plan for what else is to come.  After chemo number 4 we will have a PET scan done, with prayers for me not to glow (cancer shows up glowing on the PET).  The hope is to have a clear PET and then finish up with two additional treatments.   The next day, Wednesday I had the real third treatment. 

 I love that I don't dread going to the cancer center or having chemo.  It is the right place for me to be and everyone is amazing. While sitting at chemo we got to Skype with Kay, eat snacks, chat with the nurses and work on getting me healthy. We sit for about 6 hours, but it  goes quickly. I didn't feel like I got near as foggy brained this time, although the nurse did stop infusion quickly when she noticed me getting splotchy.  She knows this about me, but usually its due to me scratching my chest or being nervous.  Well I guess we were in too heated of a talk because I got splotchy, so she wanted to make sure it wasn't any sort of reaction to the medicine. Another nurse came over to check, I felt fine and I was back to normal so they started the medicine back dripping. I have learned that for the weekly blood draw I would just rather have them draw it from my arm and not my port. The port is more involved with needing all sterile gloves and there is more chance of infection, plus I also learned I want lidocane if they use the port but don't need it for an arm draw.  All the bags of medicine I get at chemo, in addition to the liters of water I try to drink have made me pretty capable and confident at unplugging the IV pole and wheeling it around the halls to the bathroom. I know many of the nurses by now, and feel like I get along with all of them.  I think we may be one of the louder groups that are there for treatment (my various support personal, Clay, T, my parents) Everyone else seems to be quiet and so much older.  I did see three older men all congregating together in one of the men's infusion cubicles, all with their IV poles and  talking like they must be old friends. Since chemo 3 I have been feeling okay, not quite as good as I did after the first two but still much better than we all had anticipated this journey would feel like. I have had more nausea since the first night- it's not a feeling I know really since I wasn't nauseous during pregnancy ever and before I started chemo it was more of just throwing up and not feeling good but not nauseous.  I travel with potato chips, those help when I eat them and even a little bit after.  Ginger candy in my purse. Lots of water, some candy.  This round also brought even more of a runny nose than before, if I am up moving around it drips like a water faucet- but at night it's dry. I have a sore throat as of yesterday too, I haven't had as much of the neck gland hurting yet. I'm waiting to see if the shortness of breath and fatigue will kick in tomorrow. Will the nausea subside soon? I hope so, but I can handle it.  So now it is Spring break, well for the kids.  Clay starts at WWU this week after no real break due to the colleges terms not coinciding, so it's a good thing he had a few days off with nice weather that he and E got out fishing. 

 Book worm, the girl has an appetite for reading that just can't be filled.  Today she bought a chapter book in Burlington around 3pm, and finished it by the time we got to the park after dinner at 6p.

 This boy loves to take pictures, the goofier the better.

 The new hobby, special thanks to Grandma R.

 New trick, standing on the seat of his bike.  

 The start of Chemo 3

 Some of the drugs that are kicking cancer's butt.  The big red syringe is the scary one, my vein is still sore from the first time I had it.  I am learning so much it seems like- but really in the grand scheme of things it's barely anything. 

 More bike riding, it's all he wants to do!  If there is a puddle- he finds it and goes through it!

 My running ladies are the best, this is the shirt they made for our team. 

 Chef Gabby made these summer rolls, and her waiter Elliot delivers them and also tries to collect the "check pay" with talk of a tip too! Quite delicious!

 Blue bells taped to their heads, why not?!

 Baldy, it's really pretty chilly without hair- but the sun does shine brightly on it. I am stocked up on SPF and put it on every morning.

This girl!

Chemo 2

I had Chemo treatment # 2 on Wednesday.  The morning first started out with a Dr appointment with the man who is just a character and I can't seem to quite figure out.  We all really like him, even if he hasn't been wearing his cowboy boots lately.  He still has the long hair, and the surprising sense of humor.   The BEST news he gave us was that the bone marrow biopsy I had a few days after our initial appointment, and a few days before my first chemo came back NEGATIVE!  I do not have cancer in my bone marrow!  What a gift that was to hear, it was something I have been fearing and after you keep getting more bad news about additional tumors it was so nice to have this be good news. Dr K also said that we are only aiming to do 6 treatments, of the recommended 6-8 they advise.  Not sure yet when we will have a PET scan done to check progress, but for sure after #6 but possibly after #4.  Once the results are back from that we will see weather or not I need to have radiation on my chest. I asked him if we could pull out the gnarly stitches that have been poking me and looking gross for since the bandage came off a week earlier.  He got the scissor and tweezer kit and offered to let Clay to the dirty work.  I declined his offer.  Not sure where the mix up was, but when I had the port put in they told me the stitches would dissolve or fall out (but this is what I remember, from being consciously sedated so who knows what they really told me.) Dr K said we may have waited a little long, that these were not going to fall out or dissolve. After a little cutting and tugging the sutures- (what my nurse later called me, not sure what the difference is or if there is one) were out, and Dr K let us keep the scissors because they just throw them away! 

 Chemo 2

 The port in use.  I was so nervous about this, mostly due to the fact I had trouble with the "red devil" drug and it scared me pretty badly when they did it through the IV in my arm the first time. I was nervous how bad it could be if it was going straight into a big vein by my heart.  Also, when the port was put in, there was the issue with it being kinked so I wasn't sure how it would work. Luckily I had amazing nurses who were able to talk me through my worries and assure me that the port was much safer and better all around. My main nurse for the day is a cancer survivor, she showed me her port scar even! It worked so much better than I had expected, such a blessing and an answer to my prayers.  I must say it was not the easiest thing to adjust to having the port in my chest- but now I realized I don't even notice it really!  By the end of Chemo I had major brain fog, and thanks to the steroids was able to  sleep only about 4 hours that night.  

 The day after Chemo I headed back to the cancer center with Mindi, I had to get my neulasta shot to bump up my blood count… and also we were on a mission to pick out a wig. This is the winner, it looks more natural in the picture than in person I think. It was the one that was the most ME… even though it has lots of highlights which I have never had.  

 I actually brought home two wigs to try out and get opinions on.  I have on the winner, and Elliot has on well the one that looks orange when I put it on and just isn't quite right- although he looks adorable in it.  

 Just for those who are curious, this is the port. those three little bumps under my skin are where they guide the needle to hook me up, it goes in the middle I think.  Right above it is the incision which they just glued closed and you can see more towards my neck the catheter that then feeds into my vein.  The sutures were up on my neck, and are barely visible here!

 Monday my hair started shedding, just a little bit more than normal.  It was easier to grab out.  Each day it got a little worse (seriously, one chemo treatment makes you loose your hair!) By Friday (now having had 2 chemo treatments) the hair was coming out practically in clumps.  I would roll over at night and get hair in my face from my pillow case. Washing it meant my hands getting furry.  Saturday I woke up disgusted by it all, the hair was not even putting up resistance when you tugged on it.  I showered and tried as much as I could to avoid touching it, but it was useless.  It looked like I had an animal on the shower floor and that's when I yelled to Clay that we needed to shave my head.

We headed over to my sisters house, Danny got out the clippers and I sat in the backyard while Elliot excitedly took the first turn and buzzed me right down the middle of my head.  I had talked to Gabby about it after my shower, and she said she didn't want to help but she did like pulling it out.  Clay, Molly, Charlotte, Danny and then Gabby even had a turn all shaving off the pixie cut I have grown a little fond of.  I had anticipated this part being harder, seeing myself bald.  I thought it would hit me more than I expected and yet it was the opposite.  It felt so FREEING.  I don't have this hair dropping off me all over and thinning.  Now I just have lots of tiny little hairs that rub off!  It feels good, and I am more secure with what I see than I thought I would be. Now if the eyebrows and eyelashes will stick around it will be really nice.  The leg hair, well I wouldn't mind not having to shave this Spring! I wore the wig to the farmers market today with the kids, and it didn't budge even with the wind.  However I feel like I look like I am wearing a wig (yes I know I am!) Later I went to the grocery store alone, bald headed and felt confident, a stranger even told me I was beautiful as he walked by me in the aisle.  Now I am bracing myself for the week to come.  The drugs leave my body within the first 24 hours or so, but they are so powerful and harmful that it's their side effects that are hard.  I have still been feeling energetic for the most part, but a little nauseas a few times so far (a zofran cures it pretty well).  We will see what the week brings, but no matter what I am going to take it!

Post treatment 1

Well the last post left me sounding miserable, and I was for about 2 days.  The beautiful thing is that every day is a new day and it can be totally different than the day before.  Thursday last week I walked all over the neighborhood with Elliot on his bike, filming him trying to do jumps on the uneven cracks in the sidewalk.  Friday we met a friend at the playground just around the corner… and I was able to jog home about a block- feeling really good with only a twinge of soreness where my port is.  This weekend we avoided the rain with family time inside and a visit with friends to the Children's museum in Burlington.
   I have felt so good and had so much energy that I am staying up too late at night.  Watching movies with Clayton, or reading a whole book in one night (into the early morning), avoiding folding laundry, eating snacks.  I do know that I need more rest than I have been getting, so I try and nap.  My normal nap schedule happens the three days a week Elliot goes to preschool, after I get home from dropping him off I curl up on the couch and sleep for about an hour.  Today I was busy so I fell asleep later, when Clay got home from school I didn't even open my eyes but just answered "yes pick up all the kids" and back to sleep it was.
   Yesterday the shedding started.  Well it's more like me grabbing a little hair and it coming out in my hands.  I showed Elliot he said "that's cool"  I showed Gabby she said "that's cool"  I show Clay and he is like gross, just let it be.  First thing Elliot did this morning was try to pull out a little hair, and then it was the last thing he did tonight too.  He can't wait to see me bald he says.  I have been okay with cutting it all off but I think it may be harder than I expect to have no hair.  One of my books talks about it, and it makes the point of when you loose your hair your illness enters the room before you do.  People know you are sick.  I haven't felt like I look like a sick person, besides the bandages I had on my neck which now are gone and gnarly stitches are in plain sight instead.  Elliot also has started saying "I hate that you have cancer."  Me too buddy, me too.  Gabby has thankfully been less dramatic than she was being.  Did I mention in tears of frustration and being upset she said "you don't know what it's like to have a Mom that has cancer and always worry."  I continue to talk to them daily about what is going on and how good I feel and show them how my port incisions are healing (good but can the super glue come off soon and the stitches out!!)
  Tomorrow is the beginning of treatment #2.  Here's to hoping this trend of feeling healthy and the medicine working continues.  xoxo

Way too many pictures of me!

If you have looked on this blog much at all, you will know that there really aren't ever that many pictures of me.  I take them, and not of myself.  Well I have joined the "selfie" nation, I think it's this new haircut!

 Ignorance was bliss- this was before the Kidney biopsy that told us the news.

 Super Bowl Champion Seahawk haircuts!

 Dummy poker and Cleopatra before school.  You never know what we will be doing here!

 A busy day of appointments.  This was day one of being radioactive.

 Me

 The snow hill they built, with help from Clay and two neighbor boys.  Our neighborhood has no hills!

 First Chemo, I even brought my Japanese banana case with me.

 The start of 1, I am going to try to do this picture each treatment to see the change.

 The first day of my new haircut..

 Gabby went to a Spa birthday party, and so she was really into doing pedicures with massages for E and the cousins.

 My box of scarves.

 I wore a mask to Char's bday even if it was just family, I was most at risk for germs this day.

 These two crack me up.

After weeks, tears and screams about not wanting to wiggle the snaggle tooth out, she finally got it out last night. 

 Love celebrating this amazing 7 year old.  I still need to upload her rock star party pictures.

 A rainbow over our house.  Everything will be alright. 

 The 4 cousins, for Charlotte turning 4.

The big 35 for my guy.