Hi Blog World,
So here is today's appointment....

Labs- Liver, Kidney, Electrolytes all good.
A little anemia, but not horrible
Immune system - low but still safe
Platelettes - low, but still safe.  
CEA down about 50pts.  

The PET scan showed nothing much new since November's.  The only difference is from the COH CT scan, the largest lung cancer was 7X7mm in his lower right lung.  This radiologist spoke of one in the upper right lung which is now 8mm.  Again in the big picture of things, this is not our biggest concern.  The PET scan also showed the cancer tumors in liver have 5-6 more that are metabolically active.  They were there in the last PET scan, but they were not metabolically active, and now they are more prominent.  (The scans from COH were CT scans.  CT scans and PET scans show the same things except CT scans are more detailed and PET scans "you give up some detail but you can see the metabolic activity" In a CT scan they can see tumors in the liver, but they can not see if they are active (metabolically) or if they are dead.  Either way no matter what they use, it is best to compare two of the same tests to be able to see differences.)

What does this mean?  In a nice way the doctor says that the chemo is not ineffective, but not effective.  It is not completely not working, it is working to keep the chemo from getting out of control.  Keeping a lid on it.  However, it is not effective like he had hoped, it is not killing the cancer fast enough to say it is working.  This chemo is not a maintenance plan!  He can't just stay on it forever and ever.  It is a treatment and he has to have an end point with it.  Brent's end point with this chemo, which is poison/ toxic, will be in two months.  By July we have to have a plan B.  He is referring us to meet back up with COH and to meet with UCSD and see what each of them has to offer in terms of trials or experimental treatments.  Since we have time, meaning we don't have to stop the treatment and pivot right now, we have the two months to get all of that set up.  Then we bring our options to the table and he will help us pick the best option of those. 











I am leaving some space here for you to have your own thoughts, feelings, and opinions of what this means. 















The doctor was definitely disappointed to see the results. 
 
The doctor 4 weeks ago said to me, maria, when scheduling the next appointments, "are we working around any dates?".  AKA any vacations planned that we need to plan chemo around?  This time when talking about dates for next several appointments it came up that nationals week for dance (which is a week, not near home), based on his last scheduling conflict I causally said "oh that's our kids nationals week and we won't be here."  but then.... he asked when we were coming home and I said we wanted to stay after them to have some vacation time.  We have to be back for a performance we have tickets to, but if we came back earlier than that day, we literally get no R and R time after a week and a half of straight dance (rehearsals for recitals, then recitals 4 over two days, then travel that night or next morning to get to nationals that start that day after recitals, then 5 days of nationals).  We crash after three days of comp.... not sure how it will be for us, but I know we will need rest.   Essentially the doctor said, Brent has to get treatment that following week, and he can not go past a certain date, ie not past 3 weeks.  So, we will definitely be back for chemo that following week (4th of july week).  We scheduled July 5th, they are closed on the 4th.  It happens to be his (doctor's) birthday.   He joked with me "since you will have to be here on your birthday (maria) then I guess I have it coming to be here on mine!"  "whoo hoo, we will celebrate together, new friends!"  My interpretation of this is things have changed now, and we can not be missing exact treatment.  No wiggle room.  

When we first hung up, I knew my immediate feelings were not super low, but not up at all.  Small concerning thoughts as I pieced other parts of information together.  1 being we just have no idea how this all plays out for us.  2 this is real!  Denial is still very available, we are just so so so busy right now, we have just pieced cancer responsibilities into day to day life and we do what we need to do.  3.  I had JUST been talking to grandma, beeora's mom, and my therapist about travel.  One of Brent's friends has twice approached me about starting a go fund me for Brent's bucket list.  I have declined both times.  Tooooooo scary, toooooo real, and toooooo much ego.  I started working at 16 years old (more than legally supposed to. insert thinking emoji here).  At 17 my mom needed help financially to make it in an unforeseen situation she and I were in, where she had to pay rent she was not expecting to for us.  So I gave my paychecks to her.  By 18 I was paying my own rent and in charge of myself.  Brent's family helped us financially in school with some rent, and they paid for Brent to go to school.  We went to Jr. College, Brent did not know what he wanted to do for a job and I needed time to save for "real college".  I worked at a before and after care program all through Jr College and saved, even cleaning a house for money to put towards school.  When we moved, his parents paid part of our monthly rent.  Brent and I split the rest.  A big pride for me was that I made my money stretch and worked on campus at the daycare while studying and getting good grades, and I did not have to take out loans.  I made it all the way to my second year of grad school with no loans.  So the loan I had to get (because I could work for money less and had to work for therapy hours more) was only for the last 1.5 yrs of grad school.  And I proudly paid it off quickly.  Until marriage I pulled my own weight financially, Brent and I did everything 50/50.  I have always believed I can have any of the things we want, if we save for it.  And we had.  So, you see..... not being able to provide his bucket list to him on my own, is a VERY scary and uncomfortable feeling.  My mom and step dad have both passed away, but we went thru bankruptcy and lost the home I had known with them for most of my childhood years.  It was very traumatic for me.  So not having a home we own for my kids has been very hard.  Not being able to know our income in the future is scary.  So many things I could say about the money piece of how this all affects things.  until I know for sure I am holding off speculation of the changes coming our way.  So, the idea of asking for money from people is just uncomfortable on SO MANY levels.  I am used to contributing to fund raisers or hosting them.  Definitely not being the recipient of them.  When talking to grandma she made a valuable point, which is that I am trying to cram ALL family vacations for.... ever..... into a small amount of time and I just won't be able to do it on my own.  I had also just talked to Beeoras "other mom" and she will be graduating next year at this time.  We had said when she moved, we'd go visit her.  And here we are end of year three and not been there yet.  We have one year left.  But in talking to her... it's like "how do I know how he will be a year from now??" He could be amazing , he could not be?  So maybe it should be sooner.  Wait is it supposed to be right now?  now, after today .....did we just bypass our freedom to work around chemo time??  This is such a rollercoaster!  And on top of that I am having to think abut Fall already.  We finish school May 31st, so we are in the thick of getting all end of year work done, last classes before finals, had our last meeting Tuesday with their teacher, signing paperwork and yes planning next year for all three kids.  Including summer school for the first official time.  Learning to register for Jr. college classes for #1.  And prepping for my first mom taught high school class, all on my own, not online.  high school feels like the real deal and I have fears of messing her up, far more than her elementary and jr high.  Now it is like permanent and we have to check all the right boxes for her best chance at college.  All of these things take time, energy and time and energy.  And all along I am just thinking ..... it all just feels like so much commitment, concrete planning, and I just have NO IDEA what life looks like for us, two months from now, let alone 3 or 4 or 12.  It is just all a lot. 

Our interpretation of today's appointment is overall not too good.  I posed it to the kids very matter of fact this afternoon.  He had given us a visual of Brent's CEA # dipping and jumping around, so it goes up, but the chemo brings it back down etc.  And that we have two months left to safely give daddy this medicine and in the mean time we will consult with UCSD & COH again and have a plan B.  They won't be in dance or school in July so the idea of going back up to COH doesn't impact them too too much.  #3 reflected on how fun it is to stay in a hotel.  In some st way I think they feel like they didn't get closure at COH, so going back, though it is not welcoming to kids, is maybe something they crave, like they would have liked to know when we left last time that we were not going to be coming back so they could kind of say bye to that experience.  (10pm not having a bed to sleep in, eating burritos in the car as the restaurant is closing.  and night #2 unexpected, but everyone had that extra pair of chonies (underwear) with them!!!! #Beeswithcleanchonieeees)  About an hour after I talked w them, a kitty arrived at the door that they are going to be cat sitting for the weekend, so all was good.  I can see #3 trying to make sense of things.  He's struggling with the magical visitors that come throughout the year and if they are all in a plan to help him and his daddy out of this.  It was a real struggle and a lot of conversation back in Dec.  bringing peace, love and Joy does not mean having the power to cure disease.  He has also talked a lot abut spirits and how even when someone dies their spirit is still here, he references my grandma and hummingbirds.  All ways his brain is processing and trying to make sense of things.  The kids have changed out in public.  He told me tonight he doesn't like to talk about it with people and so when we see people he knows will ask about it, "we" don't like to hear the conversation because it "alerts (them) in a way that wakes (them) up and then (they) can't not be alert". Speaking for the group.  I assume this came up because I have been talking to them about how quiet they have been around people other than their kid friends.  I wasn't sure why that has been happening, but it has been noticeable for sure.  I get it now.  

Sorry I know that was all over the place, one thing leads to another leads to another.  Also I have not been right / sick I guess since the comp.  So my filters are down.  I am tired, not feeling good, and in my old life I would just be in bed recovering for a couple days.  I was completely out Monday and half of Tuesday, but pulled myself up for a meeting with their teacher. It's not even a bad sickness, it's just I am so tired. 

I used to think you have cancer you do chemo, immunotherapy "everyone can get that", radiation, surgery, and trials "trials are everywhere and pletiful" I would have thought!  Yes you can do chemo, but not forever.  Radiation requires you to be well enough to go off chemo.  Immunotherapy is only a thing if you have the gene.  surgery, you aren't guaranteed this, if it is not safe or you can't go off chemo.  and trials do exist, but they are a scientific study.  You have to fit very specific requirements and .... at the end of the day.... your an experiment. And in the end you beat it or you don't.  But in my world, you beat it!  This experience is kind of crushing all these myths I had.  

ok, it's late!  I better stop myself from rambling more.  nite nite.