I have so many fucking questions swarming my brain and no idea when any of them will be answered or even if they can.
Does this mean that he has to get a stem cell transplant?  From my reading of clinical studies of lymphoblastic lymphoma and hyper-cvad regimen I know that the fact that he is not in remission after 5 cycles is not good at all.  It means his prognosis is worse.
Basically patients have something like a 90% chance of going into remission after 2 cycles.  His cancer is not responding to the hyper-cvad chemo, which is the newest and best treatment for this disease.
Fuck.  FUCK.
I’m tired of waiting.  I’m tired of hospitals and mostly I’m tired of my husband being so tired.  We haven’t had a real conversation in something like 5 days because he isn’t capable of having a conversation.  He’s asleep most of the time and disoriented when he is awake and most of the time I have no idea what he is talking about, the few times he does talk.
We were eating lunch when the Dr. came in and told us about the PET scan.  Actually unless I asked him about the PET scan I don’t think he was going to tell us about it, he seemed reluctant to tell us.  Chris started crying after the dr left while he was trying to finish eating his rainbow sherbet.  He said he wanted to be left alone so I went to the family waiting area and called his mom and told her the bad news.
I also told her that they may want a lumbar puncture test (spinal tap) because it’s possible the numbness on half his mouth indicates that he cancer has spread to his spinal column/brain.  BUT the dr. did say that he didn’t see any indication of it there on the PET scan.
I talked to my son briefly, he is so bubbly and bursting with life.  If I were him my face would hurt from smiling so much.  I love him so much.  I can’t even begin to imagine raising him without Chris.
Chris has slept most of the day, most of all the days here.  He’ll mumble in his sleep.
I napped briefly and then woke up needing to get out of his room.  This hospital is so huge so I walked all around and then stopped on the first floor to visit the library and checked out some books.
The shuttle’s last run will be around 8:30 so I’ll be leaving in about 2 hours to head back to the hotel.
I feel numb, I feel like I should cry in a reaction but I just feel numb.  Numb and full of unanswered questions.

Drive here was fast – listened to Radiolab podcast on the way.

If you haven’t listened to Radiolab then you must click here and pick any story – they are all fantastic beyond words.

Our hotel room is a queen suite with a kitchenette – there is sooooo much room to ourselves compared to the tiny room Chris and I share in Austin.  It’s worth the money to have a place with just us in it; since moving to Austin the only time we have alone are during the car trip to&from his parents house or the brief spans of time at the hospital when nurses/techs/dr’s aren’t in his room.
We’ve wanted to go on a date to a movie or dinner but he hasn’t felt well enough to attempt it in the last few weeks.  He’s so very tired most of the time.
Disinfected/sanitized all surfaces/light switches/remotes/door knobs/phones when we got into the hotel room.
Chris went to bed right after we got here.  He was running a low temperature in Austin; called his doctor who said to just go ahead and go to Houston, he really wants him to make his appointment at the leukemia clinic.
I’m scared.
There’s so much unknown right now.  We don’t know what we will find out tomorrow, we don’t know how long we will be here in Houston, we don’t know what will happen when we get back to Austin.
A lot will be decided within the next week.
I drove the route to MD Anderson so it would be an easy drive in the morning.  It’s a huge complex and it’s surrounded by about 5 other specialty hospitals.  Driving by the main entrance to MD Anderson and seeing patients waiting for their shuttles – I don’t even know how to describe the feeling it’s left me with.
Everyone at that hospital is there because they have cancer.  They come from all over the country and all over the world for the expertise there.  To walk in there tomorrow seeing so many people who are facing death, it’s daunting.
Chris and I still joke around about random things in life and about serious things in life.  It’s changed lately a bit, with the mass coming back and almost going back to square one in terms of not knowing the next step.
There is more I want to type but mostly I want to just shut off my brain for a bit, zone out and watch some tv and work on the scarf I’m making for Chris’ mom.  It’s a new pattern, a mock cable, and I like it so far.  I’m using a lime green color, probably not something she can wear too often but she’ll appreciate the symbolism.

Enjoying a few days with Magnus before Chris and I head to the cancer hospital in Houston. It’s supposed to be rainy and cold tomorrow so I’m going to bake up some Mandel bread. Yesterday morning Magnus awoke and started asking questions about his birthday and listing things he’ll have like a cake and candles and presents and balloons and party hats.

email I sent to a friend

We talked a few times with his mom and she said that what Brenda said was not true.  I think that Mary may sometimes be telling Brenda that she is tired and Brenda is blowing it out of proportion.  I also think that sometimes Mary uses Magnus as an excuse to not do things.

The email message from Brenda really pissed me off and hurt me.  When I talked with Chris about Magnus staying somewhere else he said that he really didn’t want Magnus staying further away from us and I understand that.

I’ve realized that because of all the other stress I’m dealing with I have a pretty low threshold for anything else and I tend to react to it pretty quickly.

Chris’s mom still wants to watch Magnus and Chris would like that too.  Until I talked some stuff out in my counseling session today I was pretty adamant to Chris that I did not want Magnus staying with his parents any longer.

I have a tendency to cut things out that aren’t working or that hurt me, like the fact that I don’t have any contact with my parents or sister.

Overall I like the job that Chris’ mom is doing watching Magnus.  Even tho my reaction is to just not deal with his parents anymore and send Magnus elsewhere it will probably do more damage than good to all of our relationships in the long term.  His mom will be really hurt if I move Magnus elsewhere.  My initial reaction to that is “who cares” but my counselor helped me realize that if I do want to have a long term relationship with his parents that I’ll have to help make it work.  If his mom isn’t able to ask for help or a break from Magnus sometimes then I can set up a weekly schedule where I have Magnus for a chunk of time and then she can spend that with Chris or whatever.

His sister being rude and self-centered is and has caused a lot of mis-understandings and drama.  I blocked her email address so I won’t be getting anymore shitty messages from her.

This is such a difficult stressful situation and I have said that I hope that it can bring us closer together as a family, but if I just give up trying with his parents then it won’t bring us closer.  If I do want a good relationship with his parents I’m going to have to try and figure out a way to work around/with their family dynamic instead of reacting and confronting.  It’s not easy but if I want it to work I will have to put forth the energy.

My parents will more than likely never be involved in his life, my mom doesn’t even know I have a son.  Even tho I am frustrated with some things about his parents I need to learn how to work thru it.

Right now where we stay is half of a duplex and the other side is going to be available at the end of the month.  We are friends with the landlord so he is going to forgo a deposit for us and we’ll be moving in at the beginning of February.  Having our own space again will help A LOT and allow Magnus to stay with us when Chris’ health allows it.

This time has been such a roller coaster and it’s hard to keep my bearings sometimes.

Thank you for talking with me when I was so upset and helping me see that we do have options if it doesn’t work out for Magnus to be at his parents house.

Maybe a weekend in the next month or so I can come visit with Magnus, and Chris if he is able.  Magnus would love to have someone to play with!

Found and noted on my calendar other support groups.

Signed up for help on a website that connects caregivers with other caregivers for people with same type of cancer and for a person that survived their cancer.

Did not stop at friends house for food, its the opposite direction of the hospital and I have no energy for socializing.
Sat at home and cried and drank half a cocktail while watching National Lampoon’s Christmas Vacation in my room.
Felt better and went to the hospital.  Ate Christmas dinner by myself in the cafeteria.  Still sad but feeling better.  Start my walk down the hallway to the elevator up to his room and down the hall I see two men in black suits wheeling a dead body in my direction.  Funeral directors/workers whatever who have collected the dead body of someone and they are taking him/she/it away.
It’s too much for me and I turn and walk the other direction until they are gone, then back the other way to find the bathroom and cry and wipe my face and then go up to his room.
Chris has been so very very disoriented these past few days.  His high fevers and meds have made it so hard for him to think and talk clearly.  I showed him some of the photos I took of Magnus opening gifts this morning and then 2 of our friends show up and I really just wanted to see Chris by myself for a little bit.  But they wanted to give us our gift, a GPS to replace the stolen one, so thoughtful of them.  They have been good friends.  So we all talk for awhile and sometimes it’s hard for me to be social and the hospital room can feel so small to me.  They offer, as they have before, to set up their extra room as a room for Magnus and he can stay with them and I have to say no thank you again that it’s kind of them to offer but he does not know them and they have not taken care of a child full time before and they smoke in their home and they have 2 dogs and I do not say half of these things, I just say thank you but no thank you as hard as it is, where he is right now with his grandma is the best place for him to be.  Having to explain this to various people more than once is hard, it’s a reminder to me that I can’t raise my son right now.  I don’t know what is worse, my son waking up from his nap and I am not there and him being upset or him shrugging it off because momma being there one moment and gone the next is now normal in his life.  They leave and I show him the rest of the photos and 2 videos I took.  We started to play a game of UNO then nurses and tech interrupted with drugs and info.
He is on 3 different kinds of pain meds, different chemo meds, he had blood transfused this morning, he’s on fluids and antibiotics and benedryl to help with the itching from a pain med and he’s had strong painful hiccups for hours so he got a new med to try and help with that.
I stopped the UNO game because his brain is so gone right now he couldn’t even play UNO.  Half of what he says to me makes no sense.  Seeing him like this is hard, so fucking hard.  I miss my husband; he is my best friend and without him I am so lonely.
I ask if his dad had called or texted him today, he said no.  When I was at his parents house (his dad left with Chris’ sister and her family to spend Christmas with them in El Paso on Monday) his dad was texting Chris’ mom’s sister who was visiting and wishing her a Merry Christmas and telling her how much Taylor liked her gift from them.  Taylor is Chris’ sister’s daughter.  Chris’ dad did not text me Merry Christmas nor did I text him.  Chris’ dad rarely to never responds to any text I send him so I’ve stopped trying.
I say goodnight and leave the hospital and cry the 5 minute drive home and wipe my face to go inside and try to talk like a normal person or whatever to roommate when I get here and end up starting to cry and I go to my room and close the door and cry and I see that Chris has called me so I call and he says he fell asleep and woke up and didn’t know what happened to me, he doesn’t remember me leaving and saying goodnight to me and he starts to talk to me and says that he forgets that it’s probably just as hard to do what I do and be with someone who is dying and when he says that, when he says “who is dying” and he is talking about himself it only makes me cry harder and I tell him please please let me get off the phone you don’t need to listen to me when I am so upset.

There’s a growing void in here, a gathering emptiness.

I don’t want to go back to the fucking hospital and I don’t want my son to wake up from his nap with me gone, not knowing when he will see me again.
I don’t want to have to practically force my husband’s fucking mother to go visit her son in the hospital on Christmas.
I don’t want this fucking life, I DON’T FUCKING WANT IT.  I can scream and cry and go numb and it won’t change a fucking thing because cancer doesn’t give a rotten shit.
I don’t want to sob quietly in my room because I don’t want people to hear me, because I AM ALWAYS AROUND PEOPLE.
I don’t want to return your phone call or text message or email or go by your house for food.  I want to crawl into a hole in my head until I can gather it all back together somehow, I don’t know how yet.
I don’t want to convince Mary to visit her son in the hospital on Christmas! The plan had been that she visits him and then when she got back I would then go to spend the rest of Christmas with him in the hospital so he wasn’t alone. She left and I thought she went to see him, but she went to church instead. When I asked when she was going to visit him she said their was something wrong with the car and she didn’t feel comfortable driving. I told her to take my truck and about an hour later she left. She stayed with him for about an hour and came back. Why do I have to convince these people to care about him? To show him support and love? He can’t do this with just me – he needs them.

I guess I go thru the motions, I guess I pack up my shit to return to the hospital and first stop off at a house to eat even tho I’m not hungry and would rather sit in a dark room drinking and crying.  I will sit instead in a dark hospital room.
It’s just getting harder, harder, harder.
I miss my husband who isn’t disoriented from drugs and fevers and cancer.  I miss spending time alone with my son, I miss myself.  I miss all of us together, oh fuck oh fuck I miss it being just us three.

I just arrived in Georgetown and Magnus and Mary are out grocery shopping so it’s just me and the dog for a bit.  It’s dark and pouring rain outside, the kind of weather I like.  I put on holiday music to try and get me in the holiday mood, it’s been hard this year.
Leaving Chris at the hospital was difficult today.  He puked 3 times, 3 times I put on gloves and flushed it down the toilet and rinsed out his puke bin.  He was shivering even tho he had a fever and disoriented and having trouble articulating himself. 
Talked with his nurse and the oncologist on call.  His white count today was something like 11.7, which is high.  It’s never ever been that high, which is a sign of something maybe going on with his bone marrow.  His platelets are only 50 today but they are doing chemo anyway and his hemoglobin is below 8 so he will probably have blood transfusions tomorrow.  This is probably going to be an extra rough round of chemo since he is in such shitty shape before it even starts.  The Dr. thinks the fever is due to his lymphoma.  She ordered a head CT to check things since he has been so disoriented.  She said they may have to do tests next week, like a bone marrow test, to see if the cancer has spread there. 
None of this is good news.  It seems like this is only going to get harder.  I’m glad I had an empty house to blog in and cry a bit before cheering up to greet my son and have some sort of holiday. 
Part of me didn’t want to leave Chris and the other part wanted to run the fuck away from the hospital, I’m so tired of seeing my husband in pain and sick and there being fucking nothing I can do about it.  Hearing him laying in a hospital bed whimpering because of the pain he is in was unbearable for me today. 
I just want my husband back, I want this cancer to fucking stop and I want my family back together in our own house eating meals together. 
Ok time to dry the tears, listen to some holiday music, and knit while listening to the rain and waiting to see my beautiful son’s face light up when he sees me here.

I packed up a sick husband, a toddler, and myself to go stay at an empty friends house for a few days so we could have the first alone family time since early July.

Get here and get us unloaded around noon, set up Magnus’ crib mattress bed for him.  Daddy and Magnus nap.

Daddy and Magnus awake and Magnus is very hot and vomits all over me.  New clothes for Magnus and momma, a couch set up covered in blankets/towels to prevent stains on friends furniture.  Temperature taken and it reads 102 under his armpit.  Get urgent care info from a friend, go back to Gary’s and get the wallet and phone I forgot, take Magnus to urgent care.

Temp reads 102.2, strep throat test taken and comes back negative.  Dr. comes in and tells us it might be the beginning of the flu.  If he can’t keep fluids down bring him back in, if his fever continues for 3 days bring him back in.  

Bring Magnus back home where he throws up all over Daddy and the bed.  New clothes for Daddy and Magnus, I start a load of laundry.  

Now I am off to the store for some supplies including tampons for the freaking period that I just started.  

Oh and our friends house that we are staying at – he has a roommate who we were told was out of town.  But when Magnus and I returned he was here.

So no empty house and a sick husband and child.  Technically the sick child and daddy should be seperated but Chris does not want to leave and I have no energy to convince him.  

If Chris gets a fever in the next 2 nights I can’t take him to the ER so I will call people here and see if they can be available to take Chris to the ER if he develops a fever.

Spent nearly $200 at the Dr.’s office.  I applied for state CHIPS insurance for Magnus but the application has not been approved yet.  

Perhaps if I wasn’t used to every fever resulting in an ER trip and a week long stay in the hospital or if I didn’t want to be extra cautious of any sort of infection that Chris may be exposed to I wouldn’t have taken Magnus to the Dr.’s office.  

So far this month we’ve had nearly $400 in unexpected bills (medical and replacement of car window after it was broken into).

The session I had with a counselor at the Livestrong Cancer Navigation Center helped a lot.  I’ve been stressing myself out trying to fix a lot of problems (Chris’ family dynamics) that aren’t mine to fix, nor can I even fix them.
It’s second nature to me to try and fix things around me but that doesn’t do me any favors, especially right now.  No matter what I say or don’t say it won’t change anyone’s behavior around me.  I can have a “serious discussion” with Chris’ mom about her passive-aggressive manipulative behavior over the holidays or I can do my best to let it go because I don’t have the time or the energy to deal with it.  Odds are nothing I say will change much of anything because this is the way their family dynamic has existed for many, many years.  I can focus on what his mom does that pisses me off or I can focus instead on how much I appreciate her watching/raising our son.  She loves him and takes wonderful care of him and has taught him many things.
Why spend my energy trying to fix things that I can’t possibly fix.  Instead I should be figuring out how to take time for myself so that I don’t become so overwhelmed by this life with cancer and chemo.  I can’t fix family dynamics or Chris’ chemo or the fact that we can’t raise our own son right now.  I can learn how to take better care of myself and stop fixating on all the negative aspects – doing that is going to drown me.
So I plan to enjoy Christmas with my husband and my son and my mother-in-law and try to not fix everyone else.

We went to pick up Magnus today from g-parents and of fucking course his sister and family were already there.  We couldn’t have been clearer that we did not want to see or deal with them, they arrived at 5 this morning and no one told us, thinking they’d manipulate us into interacting with them.  There are two fucking kids there!!  What the fuck!!!!!!!!!
Chris was so upset and rather than him go in and spend the little energy he has fighting with his family, he dropped me off, had words with his mother, packed up Magnus’ stuff and brought him back here.  What the fuck is wrong with people!!!!!!

Why the fuck don’t these people understand that what Chris sister wants should not be the priority!!!!!!

Happy fucking holidays to you assholes too.

I HAVE HAD ENOUGH.

I’m going to kick this shit out of my head and focus on spending the next few days with my family and getting some alone time starting Saturday, for the first time since fucking early JULY.

Chris can feel the mass growing back in his neck, scan scheduled for Tuesday, hopefully results before Christmas.

Chris can feel a mass in his throat area – the same type and place where the original one is.

He’s scared that it means that the chemo isn’t working and he’s going to die.  I don’t know how to make him feel better because I can’t let my emotions go down that path.  All I can do is leave a voicemail for the nurse about it and remind him that he is having a PET scan done next Tuesday that will tell his Dr. what is or is not going on.

We pick up Magnus tomorrow.  We will stay 2 nights here at Gary’s.  Chris will sleep on the couch or at a friends house those 2 nights since our room/bed is not big enough for the 3 of us.  That way I can get up with Magnus at 6 AM and Chris can sleep in the bedroom during the day if he needs rest.  This house is sooooo fucking small and not child friendly.
The next two nights we will go stay at a friends house who will be out of town so we will get a place all to ourselves for a brief period of time.

I wish I was alone in the house right now because I need to clean this whole place since Magnus is coming and I hate cleaning with other people in the house.  Apparently Chris and others decided a bit ago to have people over tonight and grill.  I’d rather have an empty house and a calm night before we get up super early to go get Magnus but that’s the hermit in me.
So I’ll go pick up Chris’ mental meds (that it took 4 phone calls back and forth from the nurse and the pharmacist to get figured out), fill up Chris’ 2 week pill dispenser, clean the house, make a list of shit that we need to make sure we get from Chris’ parents house for Magnus, and shower and hang out by myself in the room and knit and watch netflix.  The last part sounds relaxing and hopefully I can get people to understand that I’m not upset I just want some time by myself.
I really really hope Chris’ mom was honest and told us the correct day that his sister is arriving and isn’t planning some sneaky shit where we show up in the morning and they are there.

He is only half way thru his chemo rounds and then there is still radiation after that.  It has already been 5 months since he started chemo, at this rate the whole thing may take a year before we get to maintenance chemo.

ad;fakdfadl;gjakldhglahgkjaneinwionvweoi

I’m going to turn my brain off as best I can and just focus on one step at a time, just one little step.

Chris and I got some time apart for a few hours last night and that was good.  He went out with Paul and I went over to Rhiannon’s house (Paul and Rhiannon live together and date and Chris has known Rhiannon for 10 years or so).
Rhiannon and I drank and I taught her how to knit and we watched movies – it was the relaxing time away from Chris I needed!
He is getting back on the mental meds he was on before he was diagnosed – hopefully it helps.

It looks like we may be moving into the other half of the duplex we currently live in with Gary and his girlfriend.  A friend here of Chris’ owns it and asked if he wanted to move into the other side since their lease is up end of January.  It will be a tight budget but we can make it work – especially to have our own friggin’ space again!
There is very little shared walls between the two units.  We’ll have a (small) fenced in yard and we are removed back from the street.

Up front is a carport split between the two units with storage.  Our place would be the back one, to get to the front door you have to go into the fenced area.
I’m not going to count on it happening until we start moving in because things have a way of changing quickly since we moved here.
But it sure is fun to fantasize about fixing up Magnus’ room!  It’s a 2 bedroom one bath unit.

Spent Friday until late this afternoon in Sun City @ the in-laws.

There is a bit of time for meeeeee now but instead of writing out all the vomit I am going to drink wine and listen to music!

The older middle-eastern gentleman who rang up my wine said I looked 18 and gave me a piece of chocolate.  After I left the store I wished I had asked him what country he is from.  I have never left the USA and foreigners make me curious.  I fantasize about doing my post-doctoral work at one of the Max Planck Institutes in Germany.

This life is still mostly wretched and overwhelming but I am still here and I will still be here and it will change.

I need to make sure I run away to the woods more often than I have been, it makes me way less prone to want to hurt people.

I feel like a jerk for not calling Kierstin last week when her beautiful baby girl turned 1.  I know she  probably doesn’t hold it against me but motherfuck I wish I had privacy to talk on the phone without having to drive around in my truck.

Magnus woke me up the other morning by giving me kisses on the face and eskimo nose kisses.  Today he brought over his dirty laundry basket to the bed and told me about his dirty laundry basket and how the clothes smell inside it and how they will be washed later.

Chris’ sister and her husband and daughter are staying at their parents house next week so we are going to have Magnus with us.
The duplex we share with 2 other people is very small so having Magnus here isn’t ideal.  Chris’ friend Melinda whom he has know for 25 or so years (I finally got to meet her last month) offered to let us use her apartment for Magnus’ visit and she’ll go stay with friends.
I decided to take her up on her offer and that means we will get to have Magnus alllllll to ourselves from the 16th – 20th!!!!!!
This will be the first time since early July that it will be just me, Chris, and Magnus sharing space together! I can’t wait!!!

I realized that best case scenario Chris will only need 6 rounds total of chemo, he could be done early January and done with radiation by early mid-February and start maintenance chemo!  We could get our own place with tax return $ and have Magnus back with us by the end of February!!!!!!  I know that it might not happen that soon but now I can start to see through the fog some semblance of our former lives!!!!!!!!!!!!!!

Ok I am going to try my best to summarize what we learned from the Dr. today.

Chris has a high chance of going into initial complete remission (75% – 95%).

He will probably get a PET scan next Thursday.  This scan will let the Dr. determine if he is already in remission.  Depending upon the results of this scan he may only need to complete 6 cycles instead of 8.  He will need to complete radiation treatments after he completes the chemo cycles.
Chris will be getting lab work done at the cancer center early Thursday morning, pending these results he will start round 5 that same day.

There is about a 40%-50% chance of Chris staying in remission.  The length of maintenance chemo is not set in stone, it could be a year or 2 years.  During maintenance he will meet with the Dr. once a month and have weekly lab draws, oral & IV doses of the some of the same drugs he is on now (altho at much lower dosages).  He will be tested every 2-4 months for re-occurrence of the cancer.
If he does relapse then the Dr. would look into the possibility of an un-matched donor for a bone marrow transplant and he would need to complete another type of chemo regimen, he would not repeat the hyper-cvad regimen.

I feel much better after talking with his oncologist.  I believe Chris does too, he is still mostly very very worn out from this trip to the hospital.  He did not express any interest in quitting treatment when we spoke with his doctor.  I did talk to his doctor about the fact that Chris has been treating for bipolar disorder in the past.  Chris is currently prescribed an anti-anxiety medication and the dosage has been doubled since Saturday.

I am going to take care of some errands/housework and then take a nap.  Chris is sleeping in bed.
Our plan is to wake up tomorrow and head your way depending upon Chris’ health.  Since his platelets are still very low he must be very careful.  If he falls or starts bleeding he will have to go to the hospital.
I will give you guys a call in the morning and let you know how he feels and when/if we are headed your way.
Even tho Chris will probably sleep all day and might not respond to a text message I know it would mean a lot if you guys send him a supportive text message.

Love,
Amanda


(I sent this email to both his parents about 6 hours ago.  They read it and neither sent Chris any supportive texts.  They did not visit Chris while he was in the hospital or call him.)

I spent all day at Chris’ parents.

It’s both heart-mending and heart breaking to spend time with my son.  He calls me Grandma because I have become a visitor in his life these past 4.5 months instead of a constant.  He’s starting to get randomly quiet and sad when I see him.  He’ll stop playing and come over and press his body against mine, burying his head into me.
I ask him what’s wrong and he says “nothing”.

chris talks about quitting chemo, thinks things can go back to normal

normal is a ghost that will haunt me forever

I told him to talk to an oncologist about it, he talked to the oncologist that was making rounds on weekends.
We’ve never talked about prognosis with an oncologist before, I don’t know why.  Maybe I do.  I’ve read up a lot about his regimen.
He talked to the oncologist on call, she told him general prognosis info based on her knowledge and patients she’s had.  She said the maintenance chemo that will last a year or more will still be difficult, he’ll have to take oral pills and go for weekly injections and he’ll have similar side effects like he does now.
She said that most patients don’t stay in remission.
She told him if he quits chemo his growth will come back and the cancer will progress rapidly.

I want to talk to his oncologists, I have so many questions.  The earliest that will happen is Monday.

I’m so tired.

I was supposed to see my son days ago.  I just want to spend time with him and not have to make chit chat with his parents.  I want to pick him up and have somewhere to take him but there is no place.  There is nothing for him to do at our house but watch tv and he watches far too much of that already.

It seems there is still nothing to do but put up with everyone with no real relief in sight.

I really wanted to buy booze earlier today and drink but I didn’t because I have way way too much shit to take care of to say fuck it all, even for a night.
There’s a house to clean and bed linens to wash in case he comes home.

I’m sick of all of this fucking life.

I don’t have a job, I’m not in school, I don’t have my son, and my husband is losing his will.

Salutations sure looks like a strange word typed out today.

I think I’m a bit slap happy from the recent hustle and bustle to the ER.

Timeline:
-went to ER @ about 10:45 p.m. on Tuesday November 30th.
-went home at about 2:30 a.m. and couldn’t fall asleep until about 4
-Chris called at 7:15 a.m. for some company at the hospital
-went home at about 9:15 a.m. and fell sleep around 10, woke up at about 1 p.m.
-back at the hospital at about 2 p.m. and here I now sit.

I miss my son.  If it wasn’t for this stupid pancytopenia we would have been at his parents house by now playing with him.
I miss a life without cancer.  I miss math and physics and school so fucking much.
I need to start studying my calculus book so that when I eventually go back I can remember it all.  That book is in storage somewhere and I don’t have any real place to study, yes I know I need to make a place, if I want to study bad enough it can be done.
The days seem to stretch and twist and churn until so little and so much time has passed.  It seems like much longer than 4.5 months since his diagnosis.  It seems like just yesterday I’ve been meaning to review my physics and math.

I should be knitting, we don’t have $ for gifts so I’m attempting to knit a large quantity of dishcloths to send people.

I still get easily frustrated by people’s inability to grasp the all encompassing life with cancer, even more so during times like these.
I’ve become even more of an introvert the past few years I’ve noticed but now I’m more comfortable with the fact that even tho I love and care about my friends and family most of the time I don’t want to be around too many of them at once or too frequently.  Constantly interacting with people, regardless of who they are, makes me tired and cranky.

I need to go walking at the Barton Creek Preserve tomorrow, that will help.
I need my in-laws to be better communicators so simple things aren’t so fucking complicated.

I realized the other day the reason why I’m constantly so hyper aware of other people’s needs/actions/behavior.  Growing up I never knew if my mom was going to be pissed off or happy from one moment to the next so to make it easier on myself I tried my best to anticipate her needs/next step.  And I still do it to anyone I spend time with, it’s an ingrained habit.  It’s strange and at times I have little patience for other people who don’t share this same awareness of people around them.
Not that I’m some fucking superstar, I’m sure there are a plethora of things I overlook.

Everyone says I’m coping so well and doing so great and so much but I’m tired.  I have my moments of wanting to drive to his parents house and picking up Magnus and driving away and telling his mom to take care of Chris and I’ll be back sometime.  I won’t do that of course, such irresponsibility is not in my nature.  But I sure fucking want to a lot of the time.

I don’t like not having a job that brings an income in.  I know that my job taking care of Chris is important and crucial and yadda yadda but I feel vulnerable not having an income.  We aren’t paying rent  and Chris’ disability $ covers bills and we should be able to start saving so that hopefully in 4 or 5 months we can rent a home and have our son back with us.  Well we will have to choose between saving to afford rent in the future or paying off medical bills.  I hate money.  It serves little purpose to me and I don’t care about many of the things it can buy except freedom from the trappings of poverty.  Details, details.
The list of things I need to take care of, places to call, things to organize, and figure out seems to grow and grow and grow with each passing day.
I’m tired and today it’s hard not to wish for the simple pleasure of sharing a home with only my husband and son and the only thing to figure out for the rest of the day would be what to eat for dinner.

So Chris emailed his mom instead of arguing with her over text. He explained that he was upset because Mary wasn’t listening to him when he was asking her to not share information with Brenda. That he didn’t want his personal information shared with his sister when she was acting so selfishly at a time when he needed her support, not her drama.

Some examples he gave:

• When I was diagnosed Amanda posted something on her facebook wall about it, Brenda posted a rude response.  When Amanda sent her a message apologizing Brenda completely ignored her.  Instead of showing sympathy, she chose to make it about her, how she felt, and give Amanda the silent treatment.
• When Amanda chose facebook as a means to share information about me, Brenda didn’t like that she wasn’t the first to know, again making it about her.
• Brenda rarely texts Amanda; when we started the donation page, Brenda immediately began texting Amanda daily asking about how much money we had received and from whom. Brenda hasn’t donated any money; so why does this concern her? Who has donated money to us, or how much, is none of her business.
• When Brenda found out that we were moving to Austin and were having a garage sale to help offset the high cost of moving; she texted Amanda again asking ” why are you having a garage sale? what are you selling?  are you selling my Grandmother’s table?  are my parents still watching Magnus when you move?”  When Amanda replied that I was in the hospital and she was at work and didn’t have time to text out everything she was selling, Brenda got offended and has never texted Amanda again. Brenda had no desire to purchase anything, she lives 14+ hours away for crying out loud, she just wanted to be in control and dictate terms to us.
• Ever since Brenda knew that Magnus was going to be staying with you and dad she has made it an issue.  She has wanted to know how long are you watching him, does that mean you can’t watch Taylor, and made comments to other family members stating that she doesn’t think you should be watching him, or aren’t capable of watching him.  Instead of being sympathetic to the situation and understanding, she has added more stress to it.  It has been extremely difficult for Amanda and I not to be with Magnus, and having my own sister showing no sympathy for us has made it far more difficult, not better.
  
• Amanda has gone above and beyond to share information with friends and family about me. Instead of being appreciative, Brenda deletes BOTH OF US from facebook, this proves that she doesn’t care about updates to my condition and treatment, as this was the only way at the time we were letting FAMILY and FRIENDS know.
  – When I told Brenda that Mark had set up a camera at your house for us to Skype, her response was to complain that she “had asked you to do it for years, but now because (I am) sick they (you) do it for me”.  She completely missed the point that Mark was the one that set it up and that I told her about it because it meant that her and I both could Skype with you!  I’ve asked Brenda repeatedly about Skyping with us, and she never has. She doesn’t care to.
• Brenda has asked you if we have given you money to help out with Magnus, this is none of her business.
• Brenda posted a mean messages directed at you on facebook.  It upsets me that she would treat you that way when you have done so much for her.
  

He said he didn’t want to get into an argument with his mother about Brenda or have her try to justify her behavior, like she has in the past. She says Brenda acts this way because she has diabetes and we just don’t understand. He said it hurt him that neither of his parents had spoken up and told Brenda that her behavior is unacceptable. He said he didn’t expect his mom to agree with him, but he did expect her to respect his wishes about not talking to her about our son, or his medical treatment, or just the details of our lives when she made it clear she doesn’t care.

She emailed him back with no understanding and lots of her own drama. She said Chris was making her blood pressure increase and was giving her heart palpitations. She told Chris that their “feud” is tearing her apart and that it’s killing her and will put her in the ground. “Guaranteed fact” was her wording.

She flat out refused to respect his wishes and said that asking her to not talk about our son with Brenda was “kindred to asking me to put a plastic bag over my head.” She said Chris was threatening to take her grandson away and “I think you are going to kill me.”

Just lovely. I’m sorry – I thought Chris was the one in the hospital with an acute aggressive cancer? What kind of twilight zone are we trapped in. We moved here because we thought it would be better to be closer to family and we would have their support. I thought he would at the least have consistent hospital visits from them, since they live just a 40 minute drive from the hospital.

This is such a mess.

I’m so happy to be here and playing with Magnus! He cracks me up. Before bed last night he was telling me he was going to go drive in Daddy’s truck. When I asked him who taught him how to drive he replied “zebras”. And when he woke up very early this morning he said “guess what momma?” and when I asked “what?” he replied “I love you!”. It’s hard not to eat him right up.

After Chris exchanged messages with Brenda asking her what her problem is she told him he was full of shit and didn’t know what he was talking about and that he needed to grow up. Then she deleted me and him from her facebook. Then she called up Mary on the phone and screamed at her. 
Chris said he didn’t want anymore of his medical information shared with her.

Magnus is here for 7 wonderful days! He woke up at 5 a.m. this morning and when I went into his room he said “hi momma! la la la!” I laid in bed with him and after almost 2 cyles of They Might Be Giants album “Here Comes Science” he fell asleep again and we slept until 8.

I don’t understand why this is so frigging difficult – we want to see our son.
—————————————————————————————————————–

From: Amanda
To: Mary
Sent: Wed, August 11, 2010 10:52:09 PM
Subject: hey there!
So I was thinking that since I have the next two days off of work and Chris doesn’t have any treatment scheduled we can find a time when Magnus is napping or asleep for the night and we can all talk on the phone.  Chris is anxious about when he’ll get to see Magnus next.

So much of this is dependent upon how Chris deals with treatment which makes planning difficult.  We were tentatively thinking of you and Magnus maybe being able to come up around the 27th or so of this month.  As of now his last chemo of that cycle is the 23rd of this month.

Here’s a rough schedule of this month:
Monday August 16th – Wednesday August 18th – in the hospital for his first round of Cycle B (methotrexate)
Monday August 23rd – outpatient chemo in his spine

He may need daily WBC booster shots too but that all depends on his blood work.

His 2nd cycle of treatment A starts Monday September 6th – Wednesday September 8th.

So many dates and things to keep track of – I don’t even know if that public google calendar I made and linked on facebook is working for everyone.

At any rate text or email and let us know what time works well for you!

Love,
Amanda

 

—————————————————————————————————————–

From: MARY 

Date: August 12, 2010 3:38:33 PM 

To: Amanda 

Subject: Re: hey there!

 

 

Well, this isn’t the “conference call” with an immediate exchange of ideas and information, but I have to tell you that the date is too early for me. I really have to be here on payday.

1. I have to get the oil changed before driving the 4Runner back up there. It is past the date and past the mileage of the recommended change, plus it would help me feel safer using the vehicle. I can’t do this before payday.
2. I have not even gone to order my glasses yet. It was all we could do to get to the doctor; trying to get the glasses ordered during the same outing would not have been wise. Of course, I can’t go anywhere until I have new glasses. The superglue is not expected to be a permanent enough fix to last through another trip. The glasses are “Progressives” (sometimes referred to as no-line bifocals, but they’re really trifocals), so filling the prescription is not a “same day” order. I have to find the right frames, not easy with this narrow bridge I have. Anyway, we will most likely try to do that tomorrow. We will see what time Gary comes; if not tomorrow, then next Monday.Everywhere you go there are parents trying to get their kids ready to go back to school (parochial school in Gtwn begins on Monday, public schools in Gtwn a week later), so weekdays are the only sane shopping times.
3. There are still things I am trying to wrap up from here that would be best taken care of from here (some of Mom’s stuff, for instance). Some of these people expect a person to be calling from a certain phone (house phone), and that is what I need to do. Until I get Mom’s missing credit card replaced and activated for her, I don’t think leaving here is advisable. Also her investment person who never returned the call when I was in EP must be contacted; easier to do when I have the paperwork here, and I really don’t care to drag it up with me.
4. I want to be sure Chris is physically prepared to handle being in the same room with Magnus and not being able to rough-house with him. I want to be sure Magnus is emotionally okay with returning home and then coming back to TX with me. I need to know that this trip won’t hurt him.
5. I must be here for an as-yet-unmade doctor’s appt. I can’t make the appt. with Dr. Chavez until after Labor Day. My meds have no more refills, so this is imperative.

I know that you both want to see Magnus and hold him and cuddle with him and tousle his hair. He wants to see you two, as well. But I really think our time here has been too short (at this point) for him to get used to the idea of a (fairly) long separation followed by a reunion and then another separation.

He is such a wonderful little guy. We are so lucky to have such a darling, sweet, cute, funny, intelligent grandson. He “helps” me with so many things, even turning on and off some lights (you’d think all the light switches would be the same height), pushing buttons on the washer, dryer, and dishwasher, putting plastic items in the sink, carrying laundry (or pushing his basket) to the laundry room. He is helping me get exercise by requiring me to dance with him to the music.

1. I have not kidnapped your son.
2. I will bring him back.
3. I can’t do it just yet.
4. I want what is best for everyone, but Magnus holds the trump cards; whatever is best for him is what we have to do.

Love you guys tremendously.

Mary/Mom/Grandma

————————————————————————————————————

From: Amanda

Date: August 12, 2010 4:27:48 PM

To: MARY

Subject: Re: hey there!

That all makes sense.  While my heart longs to see Magnus my head understands that won’t happen as soon as I’d like.  I get paid the 20th and then both Chris and I get paid the 3rd of September, so I was thinking I would send a check to help out with the oil change on the 3rd.  

Chris’ next chemo free time period would be around the 17th to the 26th of September.  The next time period would be the 6th to the 17th of October.

Should we see if sometime during those dates may work?  I read your email to Chris and he’s also been with me as I type this response and understands it will be awhile before a trip happens.

 

Love,

Amanda

————————————————————————————————————

On Aug 14, 2010, at 8:50 AM, MARY wrote:

Hi!

Our little man is having so much fun. So you can see what all he has to work with, here are the pages to view the Cordon Bleu necessities.

This is the “big” item:

http://search.step2.com/search?w=gourmet+cafe+kitchen&asug=gour

This is the item Gary had to get:

http://www.littletikes.com/toys/toys-detail.aspx?Product_ID=8409

Along with: http://www.littletikes.com/toys/backyard-barbeque-grillin-goodies.aspx

And, of course: http://www.littletikes.com/toys/backyard-barbeque-chefs-accessory-set-white.aspx

Gary promised to come back earlier in the day next time so he could spend more time with Magnus. You would be so very proud of your son. He has been very taken up in the cooking but keeps telling us that Mommy (or Daddy) is on the phone and needs to talk to one or the other of us. You two continue to hold highest places in his heart and his thoughts.

Love you both!

 Mary/Mom 

 

 

 ———————————————————————————————–

From: Amanda
To: MARY
Sent: Sat, August 14, 2010 10:56:46 AM
Subject: Re: Magnus: World Reknowned Chef
Thank you for the links to all his fun new toys – I love his hat and apron!  I hope that Gary visits often enough so that Magnus becomes more familiar with him.  

Did you get the email I sent a few days ago asking about dates in September or October for a return visit?  At least the weather will be cooler then.

Chris’ hair is falling out more – he has bald patches on his head and his shirts are covered with tiny hairs.  He’s still tired most of the time which is to be expected.

We’re checking into the hospital on Monday around 8 a.m. 

 

Love, 

 

Amanda 

 

———————————————————————————————————-

On Aug 14, 2010, at 11:42 AM, MARY wrote:

Yes, I did get the email with the dates. Let’s pin it down a bit later. I am still up in the air over a few things. And giving Magnus more settling in time should make returning to TX less traumatic when we come back here from KS. Today we are going for a ride in the 4Runner (needs gas). When I told him we would go put gas in Daddy’s truck, he asked, “Where Daddy truck?” … funny after the number of times we’ve been reminded “Daddy truck driveway” … when I said it was in the driveway, he said, “Oh yeah.” We’ll be leaving here after lunch. Short drive to a gas station, maybe on to Target for a couple of things and back home for nap. We need to try the Skype thing today as well.

Later.

 

 

At the cancer center again with all the other cancer patients and the chit-chat and the tv noise and the waiting. Waiting for over an hour now; this place always seems to busy and behind schedule. All the other times we haven’t waited next to chatty cathy’s but today we next to one who wants to talk about her cancer and how the lord is teaching us lessons. Thankfully someone sat down closer to her so she can ramble to them about her cancer and her hospital stays and how the lord took away her cancer the first time and blah blah blah.
Being confined to a waiting room for long periods surrounded by people in various stages of cancer is so very tedious. The majority of those here are over 50 years of age.
He’s getting chemo via IV at the cancer center today, whenever they finally call him back. We got here at about 11:30 and the earliest we’ll probably get out of here is 3 p.m.
This is the first time he’s getting this kind of chemo so we’ll have to see how he feels when we get back home.

Here a rough view of his chemo cycles:
Days 1-3: chemo in the hospital via picc line and chemo via spinal tap Day 2.
Day 8: outpatient spinal tap chemo at the hospital
Day 11: chemo at the cancer center

The cycle starts all over on day 21, he’ll do this for the next 5-6 months. On days he doesn’t have chemo he’s getting various shots or blood taken or visits with the dr or nurse practitioner at the cancer center. Since this first round started we’ve had 2 days off – last weekend. We should have this weekend off too. Hopefully next week he’ll feel better than he has since he started since he wont have any chemo treatments until he goes back in the hospital.

Now we’re waiting to see the nurse practitioner in an exam room. We’ve been here nearly 2 hours without anything being done yet. After seeing the nurse practitioner we’ll be waiting again back in the waiting room for him to get called back for his chemo treatment which will probably last about 2 hours.

Chris and I didn’t get to spend lots of time together before since I was either at work or in class or studying most of the time. Now we have lots of time together but it’s in an all together different context then we could have imagined.

I miss the overwhelming logic of physics and math. I miss tests and quizzes and learning new things. I’ll get back to it I know. Once this cycle is over and I’ll know more about how to predict my time and Chris’ needs I can set aside some time to study math and physics so that it will be fresh when I do go back to school.

I now realize with glaring clarity that unless someone was the caregiver for their relative during intense chemo then it’s hard to grasp what this total fucking change in life is.
It’s boring and overwhelming and extremely isolating and it’s become the center of my life that everything now seems to revolve around. 
I hope he feels good enough so that I can work enough so that we can pay our bills – fucking forget about the medical bills we’re going to have to file bankruptcy. 
I miss my son – I really really miss my son. I’m mad that this shit is robbing me of time with him and robbing him of the full attention he deserves from us. 
Seeing my husband so weak and sick and puking his guts up makes me feel so fucking helpless. 
I’m going to join the Y soon and start finding time to go work out when he feels good enough for me to leave him alone. 
I miss my husband. Our time is now spent talking about pills and medical appointments and do you need more pills and how much does it hurt and here is ice water and a cold rag for your forehead and here is a wet rag to wipe your mouth after you puked up everything and more in the toilet and do you want to eat anything? 
He hasn’t even started all the chemo drugs he’ll be on. Thursdays drug will start to cause mouth sores.
On that note I need to get ready to take him to the dr for another belly shot that makes him feel like he has the flu.

I’m really going to miss Magnus. He’s leaving tomorrow to go with Grandma to Texas for 3-4 weeks while Chris and I get used what this new life with cancer will be like; he should be coming home tomorrow or Saturday. I’m so glad we have someone to watch him that I trust and so fucking sad that my beautiful little boy will be away for so long. Cancer sucks.

Went to bed last night not feeling very stressed. Had restless dreams and was wide awake when Magnus called to me from his door at 5:30 a.m.
At the library now compiling a list of questions to ask the Dr. and attempting to tackle the 14 page Medicaid application for Chris and patient financial assistance application for the Cancer Center of Kansas.
It’s a bit sobering and extremely tedious to start filing out things like medical power of attorney/living will, durable power of attorney, and last will and testament paperwork.

I’m hoping we get the answers to many of our questions today and don’t leave having to wait for more test results. I’m expecting that he’ll enter the hospital soon for his initial month long chemo called “induction of remission”. I’m hoping they don’t admit him today and we at least have the weekend together.

As tired as he is right now this is probably the best he is going to feel for awhile.

Ok time to stop indulging in emotions and focus on the paperwork at hand.

Tomorrow will be my first day with no work, school, hospital visits, or Dr.’s office visits in the last 10 days. I finally get to spend some decent time with my son instead of telling him “sorry mommy has to go to school/work/dr with daddy and no you can’t go”. We are going to take a trip to the Exploration place, then I’ll make myself tackle some gross paperwork, then perhaps I’ll attempt to grill in place of Chris. I’ll probably end up running inside every 5 minutes asking him if I’m doing it right.
For those of you that don’t know I don’t cook at all – I’ve made probably 10 meals in the last 2 years. If I cook I have to follow a recipe exactly and consult it about 100 times while I’m making something. Whereas Chris absorbs recipes and blends them into his own creations which always taste delicious.
I talked with my Calc III teacher today and I’ll be taking an incomplete or just withdraw from the class depending upon what Chris’ treatment plan will be. I’ve done 80% of the class work but since it will probably be a year or so until I go back to school I’m leaning towards withdrawing and re-taking it since I’ll need to know the material really well to move on to my future coursework.

I’m sick of the fucking world still turning like nothing has changed.
I still have to work.
I still have to finish this calculus class because my future GPA doesn’t give a shit if my husband has cancer.
I still have to deal with the fucking mundane day to day tasks of life.
Bills need to be paid, money needs to be budgeted, endless fucking paperwork needs to be filled out, Magnus needs to be potty trained and I DO NOT HAVE THE FUCKING TIME.
I find myself driving home from work at night and circling the block listening to music postponing the inevitable of going inside.
This life feels so fucking small now. I hate that when Magnus is having fun and playing and being loud I’m worried about it waking up Chris when he needs to rest. This is so fucking unfair to Magnus and I hate that this fucking cancer is robbing me of time with my son and I can’t even imagine how frustrated Chris is that he can’t play with his son anymore.
I remember the last time we grilled food and watched Magnus play in his pool and played some croquet and will that memory be the last like that?
I miss my husband. He’s my best friend and now I have to separate part of myself from him because I can’t show him all this shit or tell him it – his main focus is resting from all the fucking tests and for the upcoming battle and he’s exhausted because the cancer inside him is fucking killing him.
My time with him is trying not to wake him up when I crawl in bed at night after work or when I get up in the morning so he can rest as much as possible. When he does get up I have to remind him to please please let me get him what he needs because he needs to be laying down. Our only other time spent together is driving to/from the Dr. or the hospital and going thru admissions and waiting for procedures and waiting for the procedures to be done and waiting for him to get released and driving him home and making him go back to bed and rest when he wants to sit and watch tv in the living room but he needs to rest and nothing is the fucking same.
Schedule:
Sunday – work
Monday – on campus by 7 a.m. to study, then class, then meet with teacher to discuss the class I’ve missed, then head home to pick up Chris and take him to the dr. for his full body CT scan and MUGA heart scan, then take him home and go to work then come home from work 6 hours later and go to bed.
Tuesday – miss class and get Chris to the hospital by 7 a.m. for surgery to get his triple lumen catheter put in, maybe a 6 hours process, try to take care of some crucial paperwork/phone calls while he’s in surgery. Then take him home and make sure he’s situated and go to work.
Wedneday – Get to campus early work on homework, class, more homework, home, work, bed.
Thursday – Campus early for homework, class, meet with teacher, finish homework due for the week and no work.
Friday – class, homework, home in time to get us to the oncologist at 1 p.m. to find out how far the cancer has spread, his diagnosis, his treatment schedule and an idea of what our immediate future will be like.

We’ve been at the hospital for about 3 hours for his lumbar puncture aka spinal tap procedure. He’s in radiology right now either getting it done or waiting on the dr to finish another procedure and get to him. After the procedure he’ll have to lie flat in his bed here for about 4 hours to make sure he’s ok to go home. Laying flat helps make sure the insertion area closes so that spinal fluid doesn’t leak out.
The potential side effects from a spinal tap are similar to those from an epidural: headache and back pain. He may develop a mild to severe headache that may last for several hours to several days. That side effect is a lovely kick in the pants since he already has near constant headaches from his TBI.
As of yet he has no roommate in the room we’ll go back to upstairs and hopefully it stays that way. Thankfully this wireless access lets me ramble on facebook and later I’ll attempt to learn the calc I’m missing today and get some online homework done.
It feels like so much is just reporting the serious but mundane events of our new lives. My brain is still adjusting to all this. I still can’t connect the words “cancer” and “leukemia” as something in my husbands body and dominating our lives.
I’ll allow myself moments of sorrow when I’m alone in my truck on my way to/from school & work. Thankfully my job consists of sitting in a giant room of about 2,000 computer cubicles where we little minions key mail for the post office. So I can crank my i-pod, wear a hooded jacket and cry if need be and not be disturbed. I can take my 12 weeks of unpaid FMLA leave per calendar year in hour increments to stretch it out and if I need a chunk off they’ll set up a leave of absence for me instead of using up the FMLA.
I’ve said the stupid word “lymphoblastic” so many damn times I’m sick of it. I’m tempted to come up with some other word besides “cancer” because that words seems so intangible to me. Maybe “my husband has body robots”. I constantly feel like I’m babbling/rambling when I do talk about this.
I withdrew from the fall semester and told my Physics advisor I will not be back in the fall. She told me she’s a bone marrow donor and that she’ll come up with some good physics books to distract me in the upcoming months. I don’t know when I’ll get back to school to finish up my Physics and Electrical Engineering degrees but that’s pretty far from my mind.
My brain is trying to process that something that I very recently had no knowledge of is now going to be a constant in my life. Leukemia does not have stages. It’s classified as untreated, in remission, or recurrent. For the rest of his life he will always be at risk for a relapse once they get him in remission. There is no cure.
I should have brought tissues. Crying in public makes me feel like a gross spectacle. Sympathy and looks of pity make me want to crawl inside myself. I don’t want cancer to be the center of my life and all that I talk about. I will not let myself see my husband only in terms of the cancer in his body. I will do my absolute best to not let him see me upset by this. I will not let my son see me upset about something he can’t even understand. Hearing Magnus say “daddy’s sick?” is at times unbearable.
This is the end of this broadcast of the new series called “I don’t even know what to fucking call this”.

Staring at this screen refreshing to see who has commented on Chris’ status telling he has cancer. Thinking should I comment on it? I don’t have anything public to say since he’s with me but why does it feel strange if I’m silent? Why am I fixating on something so insignificant?
Past my bedtime and I should have showered. So many fucking things to do, people to call, paperwork to fill out.
I keep listening to the National’s “anyone’s ghost” and that line “you said it should tear a kid apart, it does” breaks me in half. I think about Magnus growing up without his father and it stops me and I don’t know how to see past it and where it goes – it’s a blank spot.
What will I do if he dies? I don’t know.

All we know right now is that Chris has lymphoma cancer. We don’t know what type or what stage or anything else. I’ll be going with Chris to the doctor today to get more information.