5 months 5 days

Yesterday was a big day, a monumental one- and in a good way! I showered twice with the special soap before bed and again in the early morning. Clay dropped me off at the hospital and he headed for school (it's finals week for 2 of his 3 summer classes) my dad was already waiting for me.  I got checked in and brought back.  I've been there a few times before; kidney biopsy, port placement, blood transfusion and yesterday for my port removal! I was scheduled with the same Dr who has done all my other things (well not the transfusion) and even had two of the same nurses for the procedure as I did when I got the port put in.  The Dr asked when we placed the port- 5 months and 5 days earlier, I had checked.  Quick and easy.  I think I remember parts of it, and then somehow I don't remember any of it. Those sneaky drugs! After being prepped for the sterile procedure, the next thing I know it is almost done and the nurse is closing me back up!  I am not nearly as sore from having it taken out as I was when they put it in, so thats good. The only downfall to having it out is that I have a bandage on my chest that I can't get wet for a week and it is a gorgeous week of sunny skies and hot weather, perfect for swimming! I did manage to make two trips to the beach today, once with 2 kids while the other two were at camps and then an afternoon trip with all four.  

  I am 9 and a half weeks out of chemo, and mostly back to "normal." I am 7 weeks out of the hospital for what Dr K reassured me was drug damage to my lungs (that lung Dr just kept telling me all sorts of who knows, maybe this, or that- when he wasn't looking at the BIG picture or talking with my BFF.  lung Dr made me scared to fall asleep for fear of aspirating like he thought was the cause of my "pneumonia").  I'm not happy with that cause, but happy about an answer.  Nothing to be fearful of now, or anything I can do about it.  Dr K told me not to have anxiety, try and do all my normal stuff- and he gave me homework of getting out there to run!  I have, it took me 13:55 to run a mile the first time I set out (I went 1.5 miles total) and the next time it took me 13:05 for a mile (2 miles total).  I am trusting my lungs and heart, and working on getting my leg strength.  My legs get achey and sore and changing positions or getting up is not that pretty- or graceful.  It will come, eventually. My nails look no better, maybe a little worse since more of the tips of them have started to detach.  I have eyebrows and eyelashes again, those are crucial things to have for feeling "normal."  I have enough hair now that it looks like I shave my head, it is what I like to call looking like a bad ass (BA). I got a call from the cancer center about joining their survivorship program, so I meet with the nurse next week.  She will be able to get me referrals for physical therapy, dietitian if I want (yes!) and will also give me a binder of all my treatment stuff. I don't meet with Dr K till the end of September, and won't have a scan until December.  

  This survivorship program will hopefully also help/teach me to deal with the fear of reoccurrence.  I was worried the past few weeks, and it stinks to be scared.  Yesterday as I was going thru the hospital visit, laying in the bed I had this epiphany.  Why keep having all these fears, my body has been so amazing to me along this whole journey.  It responded quickly to the chemo, I felt it work and all the cancer was gone quickly. In addition to that, I stayed healthy and strong.  I am able to continue to have an amazing life.  Have faith, and live.  I know I was told this by others, and told it to  myself but I hope that now I can believe this as much as possible.  So with that, this summer has been amazing and we are soaking up every bit of it.

 Fresh out of the hospital, the beginning of recovery.

 Track meet stars

 My "Minnie Mouse" look with a big bow.

 Tire swing and popsicles, not the best safety combo but both great things this summer!

 Cousin LOVE

 Do you spy the grasshopper?

 So much "fashion" -from all of us.

 Dates

 Driving their motorhome made from patio chairs

 Dizzy!

 Snake man

 Ragnar cheer squad

 Ropes, Ropes and more ropes.

 Workers taking a break before getting a call to fix something.

 Kids squished in a cart, plus popcorn. it was a rainy day!

 HAIR! 

 my LIFEline- my port!

 Monsters and Lions oh my!

 Marco, Polo

 Mermaids, motorboat go so fast, WATER!

Argh Matey

Then came 7

So it's been awhile, and quite a lot has happened.  I did cycle #7 and it was just harder than the others.  I knew that each time it could be worse since it is cumulitive and your body is weaker each time from all the previous cycles.  After 7 I was exhausted and didn't feel that great for almost the whole two weeks.  Gabby had gotten sick the Friday leading into Memorial weekend, just a cold we thought.  Our good friend Ryan flew in from San Diego to visit us and celebrate my remission before he moved to Virginia.  Gabby still wasn't feeling good and still had a low grade temperature.  I had called the Nurse line and asked if I should bring her in, and they decided that since it had been so many days with a fever and her throat had been a touch sore that it would be better to bring her in.  I knew it was not the best idea, but I brought her myself to the Dr appointment (Clay was at school, my mom had Char at swim lessons, my dad had Elliot hiking, and our appt was 30 min after I called) It just so happened to be when I was neutropenic (low blood count, most at risk for infection) so I wore a mask.  Gabby talked to the large male nurse and asked him a million questions and tried getting out of him doing the strep test on her.  He even stuck the swab down his throat to show her what a gag was.  She eventually, but reluctantly allowed him to do the test.  Came back positive, strep it was.
     I went for my normal blood draw the next day, my counts were low but thats normal.  I had been a little short of breath, but the nurse attributed that to my low hemoglobin levels.  She said if it got worse or I felt bad than to come back in.  I rested for days.  The weekend I was tried half the day but after sleeping (and Elliot making mischief ) I was able to function and we got out.  Sunday night I woke up twice and was out of breath as I went potty. I could barely catch my breath and it wasn't a very good feeling. I went back in Monday to have them re-check my levels.  They had gone down even more, plus my shortness of breath made me qualify for a blood transfusion.  Tuesday I spent the day at the hospital (what a dump compared to my fancy cancer center it seemed) getting two units of blood.  Clay and I napped snuggled up together in the hospital bed for a few hours, both wiped out from all that has been going on.  It took 7 hours, and I thought it was going to be the miracle to feeling better. For dinner I walked the one house down to my sisters house.  I sat on her couch trying to catch my breath for a few minutes.  When I headed home alone to go to sleep, still tired even though all I had done was sleep and lay around, Molly insisted on walking me home.  I was that much a mess.  Wednesday morning I worried about how I would get Gabby down to the end of our street to catch the bus since Clay would be gone to school.  Luckily my dear Mom showed up, she got Gabby down to the bus and then she was off to swim lessons with Charlotte.  Elliot and I just hung out, me laying around mostly.  My mom came back after swim lessons and had Elliot and I go back home with her so I didn't have to worry about falling asleep and taking care of Elliot.
     My regular doctor appointment was scheduled for late that afternoon, Clay picked up Gabby and brought her to my parents and then we were off to talk with Dr K.  "You don't look so good" is what he said to me, my reply "you've never seen me without eyebrows!" So yes, my eyebrows and eyelashes mostly all fell out last month.  Elliot said he could count them if the hairs were further apart.  Gabby did count my eyelashes this week, left eye 12 lashes- right eye 8 (down to 4 today).  We talked about all my symptoms, and how miserable I had been feeling. The fear- heart damage.  I cried, he rubbed my back (even though he apologized for "not being one of those doctors who will hold your hand and cry with you").  We could wait around and get tests ordered, but that would take days.  He sent us to the ER.  I walk in looking all bald and sick, why am I there? My Dr sent me for being short of breath. So that's a great way to avoid sitting around and waiting.  I was whisked back to a room and hooked up to some monitoring machines- yet no oxygen for an hour or so.   They did an EKG, chest X-ray, chest CT scan with contrast, urine test, two blood tests. The diagnosis: pneumonia.  It was amazing news to hear- considering what else they could have said. Started on antibiotics, admitted and moved to my own room- all in 5.5 hours.
     The first night was awful, out of breath. horribly dry mouth from the oxygen. unable to sleep.  scared. cold. chapstick across the room.  Talking with a handful of different doctors, all with a little bit of different things to say.  Dr K pushed for me to get an Echo to check on my heart more.  Results of that came back with my heart is great. Day 3 in the hospital and still on oxygen, not getting any better.  Another chest x-ray and another EKG.  The pulmonary specialist came in to talk, lets just say he isn't the greatest with people skills. He scared me, telling me a million things that could be wrong and questioning me about "why my stomach is high in my diaphragm.'' He did change my antibiotics since the others were not doing much of anything. We scheduled a bronchoscopy for Monday since it requires a specialized team that wouldn't be there Sunday.  No food or water from breakfast till after the 3pm procedure- considering I had been guzzling water by the gallon this was going to be no fun. To date I will say the bronchoscopy is the worst thing I have had done (second is a tie between the bone marrow biopsy which hurt and the port placement which I was knocked out for but recovery was uncomfortable for days).  I swear they didn't give me the IV drugs till after they shoved and had me sniff the scope up my nose and down my throat.  I got out of recovery feeling so much better, they must have suctioned tons of fluid out of my lungs. Nope, apparently there was nothing to suction out- how was it pneumonia then, I never even had a cough.  I was off oxygen after that and got to finally go home after 6 nights.  I kept getting asked if I was anxious to go home days earlier, and they were going to send me on Saturday until my oxygen saturation level dropped too low (yet again, even on oxygen it was low.  Walking with a respiratory therapist it would plummet when my pulse would sky rocket) I was in no hurry to get home- at least not when I was afraid to be unable to breathe.
  So, what was the cause of all this? I have no true answers.  Dr K thinks there was some drug toxicity in my lungs from chemo.  The pulmonary specialist called me this weekend to check in, he still didn't have answers but thought I could have aspirated or it was heart damage (but all my heart tests came back good?!!).  The lung biopsy he did showed nothing, hurray- meaning him scaring me saying it "could be the lymphoma" was totally false. The culture they did from squirting water in my lungs and suctioning it back out showed nothing.  I did my 10 days of antibiotics and have felt good since leaving the hospital. What now?  Dr K and I agreed that doing cycle 8 was not going to happen.  It could just cause more damage, and I have already done 3 cycles after having a clear PET scan.  I am good with that decision, yet it feels so anti-climatic to be done. My night sweats are caused by chemo induced menopause, could be temporary we will see I guess.  The thumb nail that has been ugly for months is now half falling off, pretty sweet.  I had nothing on my schedule from the cancer center after my scheduled 8th chemo that I wasn't there for so I had to call to make some sort of follow up appointment.   Dr K is pretty popular so I can't get in to see him till middle of July.  At that point we will talk about any further scans or tests I need to have done and schedule getting my port taken out.  If I have any problems between now and then, call.  So strange to just be done.  Now, try and get stronger every day but also know that my body has so much to recover from.  I am more tired some days than I would like, but I have to allow my body the time to heal.  It could take a year.  My head is starting to get a little fuzzy, but it will take ages for me to have a head covered in hair.

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!