Stream of (barely) Consciousness

February 21, 2012 By 1 Comment

House craziness aside (because, let’s face it, it IS crazy that we are trying to buy a house right now) I’m super behind. I came home tonight determined to do laundry…but I haven’t started yet. I DID put some things in the laundry basket – including some items that we brought home from the hospital over a month ago. Like I said…behind. I won’t tell you about the sheets on our bed…

It’s not completely my fault. I mean, there’s the cancer to blame. And also the fact that our washing machine isn’t working properly. I could call our landlord, probably, but who has time for THAT? Also, have you MET our landlord? He’s as hands off as they come. The roof on our shed out back caved in long ago and we’re too afraid to go out there because of the mold, anyway. Oh and let’s not forget the (poorly patched [sorry, honey!]) hole in the ceiling of our kitchen nook…that must have happened 2 years ago now.

But I can’t just wait around, avoiding laundry until we move into our new house (right?). That’s at least a month away (if we get the house – right now I’m tearing through loads of paperwork looking for David’s tax return from 3 years ago…). I’ve been through all of my back-up clothing and Jack’s moved on from pants to shorts. I need to get my ass in gear. I need to use that washing machine regardless of the fact that the spin cycle doesn’t work!

Instead I am sitting here drinking a glass of wine and writing…

Wanna hear something weird? (No? Oh well!) David had pretty much stopped looking for work to focus on Jack and school. And then a recruiter found him and he had his third interview today. AND then we heard that Joe has an interview this week – after a year of unemployment. So now we’re in a weird position. We were looking at dual unemployment as somewhat of a blessing because no one had to take family leave and miss out on half their income. And, really, this should have been a fine plan because the economy still sucks and there haven’t been job bites in ages. But then jobs just popped up out of nowhere!

When will this feeling of living in backward land go away? What alternate reality am I in that my son has cancer, we’re able to buy a HOUSE in the Bay Area on one income, and jobs fall out of the sky?

I’m pretty sure we’re going to see a zombie apocalypse soon.

If not, I’m just gonna put it out there – I could really use a new washing machine.

Filed Under: Cancer Mom, Domesticating, Parenting 101 Tagged With: , , , , , , , , ,

We May Have Found A House

February 20, 2012 By 4 Comments

Tomorrow we very well may be putting an offer in on a house. I am freaking out about it just a bit. It takes me so long to decide on how to spend a $25 gift card at Amazon…now I’m looking at something in the $300K range so…yeah. All the questions like, “What if something even more awesome comes on the market after we put in our offer?” are running through my head. I hate missing out!

The house is awesome. It’s located in the East Bay and cuts our hospital commute down by about 20 minutes each way. It’s a 3 bedroom 1 bath house with new EVERYTHING. And I mean everything – roof, electrical, carpet, appliances, heating system, furnace, grass…the house was completely redone under a program specifically for moderate income buyers. The backyard is gigantic. When Jack saw it yesterday he ran around outside – the first time I’ve seen him run in forever. The house is located on a street named after a constellation – how perfect for our Jackonaut.

Jack declared that he wanted the big room with the door to the backyard. We dashed his hopes and he quickly decided he didn’t like the house as much. :P We’ve since let him know that we would build a back door just for him and he’s perked up again.

We came home to San Francisco and starting gathering the rest of the paperwork needed to put an offer in. They want everything – including Jack’s birth certificate – to ensure that we are truly in the moderate income category. If David was working right now rather than enrolled in school full time and staying home to care for Jack, we’d be over the income limit. The timing on this is pretty incredible.

We may not get the house. There may be an offer better than ours or a family deemed more in need than us. In the mean time, we are trying to wrap our heads around the fact that we might be homeowners very soon. Holy crap!

Filed Under: Domesticating Tagged With: , , , , ,

That Day

February 13, 2012 By 6 Comments

‘Cause that day in my life…
That day in my life…
I dreamt tomorrow had a prettier face
I dreamt tomorrow would have better things to say
- Poe, “That Day”

Jack had been ill for a few days with odd and varied symptoms that would come and go. Many of the symptoms were flu-like; however, he did not have a cough or runny nose. He seemed less dexterous with his Legos and started getting really upset about it and other small things. Something seemed off with him. After keeping him home from school for a few days, I decided it was time to figure out what exactly was going on.

I called the advice nurse at Kaiser and after describing everything Jack was going through, she couldn’t say there WASN’T something going on…she thought it was best if I spoke to a pediatrician. Unfortunately Jack’s pediatrician was out of the office and all others were booked up. We were given a telephone appointment the following morning. When the doctor called, it was basically a repeat of what happened with the nurse – could be nothing, but could be something – better come in to be sure. I got a clinic appointment set up for that afternoon.

Meanwhile, Jack seemed better than he had been in days. By early afternoon I thought about canceling the doctor visit, but David encouraged me to go ahead and go since we already had the appointment and Jack’s symptoms had been so unpredictable. So off we went! I felt silly taking Jack in when he seemed mostly fine. He was probably just fighting off a cold! I was totally going to be dubbed one of “those” moms who takes their kid in for nothing! They would know how paranoid I am!

The exam went fine and the doctor basically said, hey, it’s not the flu. He’s probably just low on iron. Go get some liquid stuff from the drug store. He turned to leave the room and then looked back at Jack, considering…”Does he look pale to you?” And I said yes, definitely, and he has circles under his eyes. The doc then asked, “Well, do you want to do a blood test just to confirm the anemia? It will only take about 5 minutes.” Sure, I said. I didn’t want to have to come back in a few days if Jack still had this weird bug. I also didn’t want to have to buy vitamins if Jack didn’t need them.

Much to my surprise, Jack didn’t get a finger prick like I did when they tested my hematocrit during pregnancy. Instead, several vials of blood were taken in the Lab. I thought it was strange, but didn’t really question it. I didn’t know how things were done with kids, after all. Jack’s always been fairly healthy. (Btw, Jack was so traumatized by the blood draw! Yikes!)

Home we went, and I tried not to worry any more that night. The doctor had even told me I could send Jack to school the next day. Alrighty then.

The next morning the lab results were available online before I got out of bed. What I saw was the following:

 

Component Your result Standard range Units
Band’s %, manual count 1 0 – 5 %
Neutrophils %. Manual count 7 16 – 60 %
Lymphocytes % manual count 26 20 – 70 %
Monos %, man cnt 1 0 – 7 %
RBC’s, morphology NORMAL
Platelets,bld,ql, man ct DECREASE
WBC other/100 WBC, blood 65 < 0 - %

 

Component Your result Standard range Units
WBC COUNT 13.4 5.0 – 15.5 K/uL
Red blood cells count 3.78 4.00 – 5.20 M/uL
Hgb 10.1 11.5 – 13.5 g/dL
Hematocrit 30.6 34.0 – 40.0 %
MCV 81 75 – 87 fL
RDW, RBC 13.1 12.0 – 16.5 %
Platelets count 110 140 – 400 K/uL

Okay, so, hm…uh low neutrophils? What are neutrophils?

Decreased platelets? What the heck does that mean? And what the heck is WBC Other?? Does he have alien blood after all? He’s been trying to tell me all this time!

Well, maybe that is just what happens when someone has low iron or is fighting something off? His white blood cells are at the higher end. And what do red blood cells do again? That’s probably not good that those are low… Okay, lemme go look at the iron test…

Component Your result Standard range Units
Iron 97 50 – 120 ug/dL
Iron binding capacity, unsaturated 192 100 – 315 ug/dL
Total iron binding capacity 289 236 – 404 ug/dL
Transferrin % saturation 34 15 – 60 %

Well, then…his iron looks great! Yay!

But…uh…what does that mean for that other stuff then? What does it meeeaaaannnn???

So, I started googling. And I’m sure you could guess what kind of results I got – Dr. Google said it could be anything from a staph infection to Lupus OR CANCER. I shut my laptop and headed to the phone – I needed to talk to a doctor ASAP.

The doctor wasn’t in yet! To be safe, I decided to keep Jack home from school after all. I couldn’t decide about going to work but while I was deliberating, the doctor called me back. He told me that Jack was anemic, but not due to low iron. He wasn’t quite sure what was going on, so he had to call a specialist. He said he’d call me back.

Okay, well! No way was I going to work! I decided to work from home. Something was weird here! I sent a message off to my boss and then asked David if he’d be able to drive us to the hospital if necessary. He looked at me with a bit of alarm and said, yes, of course. I promptly took an ativan and waited for the doctor to call back.

I didn’t have to wait long, thankfully. The doctor told me that the specialist wanted to admit Jack for monitoring – probably overnight – so he needed to go to Oakland Pediatrics. That’s where the specialists were located. “And I’ll be watching Jack’s case and here’s my direct extension in case you have any more questions…good luck.”

Oh shit. Oh shit. This doesn’t happen! Doctors from big HMOs don’t give you their direct extensions! SHIT SHIT SHIT! Something is very wrong!

I hung up and buried my head in David’s chest to cry for a few minutes. What is wrong with my baby??

I then steeled myself to get Jack dressed and out the door without alarming him. I packed snacks and we headed out the door. We dropped our dog at doggie daycare along the way just to be safe – we had no idea how long we’d be over in Oakland – before heading out of San Francisco.

Upon our arrival at Kaiser in Oakland, two strange things happened. First, the admitting nurse commented, “Oh good! You have really GREAT coverage!” Uhhhh, okay. I’d never had anyone say anything like that before. Wasn’t it all the same? (Apparently not.)

The second thing was that the nurse printed out a special bright RED card with Jack’s medical information on it. I still have no idea what it means to get this red card (I never thought to ask) but I immediately thought that card was BAD NEWS.

Things are kind of a blur from there – stats, vitals, etc. were taken. A million doctors and nurses and interns I think everyone except us knew what was going on with Jack – they just didn’t want to tell us until it was 100% confirmed. They did say the his blood test had caused some alarm because it appeared he had some odd cells and that could mean either they screwed up the test or he might have leukemia. They wanted to redo the blood test.

At the end of that day, I was really hoping for Lyme Disease or Lupus (as Dr. House repeated in my head over and over, “It’s never Lupus.”). My friend Becky said she was on Team Mono (she’s always on Dr. House’s side!). Hell, that would be okay, too, though! Just please, not cancer. Please, something easier than that.

The next day, cancer (Acute Lymphoblastic Leukemia) was confirmed.

Filed Under: Cancer, Cancer Mom, Illness

Cancer Sucks

February 10, 2012 By 7 Comments

We are waiting for blood test results to see whether or not Jack will start Phase 2 of his treatment on Monday. I got a notice in my email that his lab results were in but they haven’t posted his white blood cell counts yet, so I can’t see whether he is neutropenic or not. The waiting is hard!

We met with the oncologist yesterday (update on CaringBridge) to go over what Phase 2 of Jack’s Leukemia treatment entails. It was a LOT of information – 26 pages or so. To be handed a page FULL of side effects for each of 8 different medications…I wanted to throw up. One medication requires us to wear a mask and gloves while giving it to him. Another can cause heart damage and result in a lifelong restriction to lift no more than 50 lbs. Many of these disrupt learning ability (some temporarily, some long-term) and it sounded likely that special services at school will be needed for Jack later on…

And that’s when it hit me – why this is different from managing a chronic illness like diabetes. The medications Jack is getting to treat his disease are hurting him, as well. To treat the disease, we have to wreck  parts of his body and then give him more treatment to help with those things. It’s a fucked up cycle and every time I think about giving my child toxic chemicals, I feel like I’ve been punched in the gut. It’s all wrong.

So today it’s hitting  me anew how much I HATE CANCER!

I think part of what got me through Phase 1 was knowing it was short and that Jack wouldn’t be losing a bunch of weight and hair. His hair has started to go a bit, but Phases 2 will likely take it all. His chubby cheeks will go, too.

I dread it. I can’t stop thinking about my dad and watching the weight melt off of him when he was sick. I imagine Joe is going through something similar, as his father (Jack’s namesake) died of Melanoma. It’s hard not to feel like it’s especially unfair that we have to watch our son go through a disease that attacks his immune system after what we went through with our fathers. It feels like we are cursed or something.

(Jack’s blood test results were just updated – if my calculations are right, his ANC Is 770 and he is all set for starting treatment Monday. Yay…)

We will get through this. We will, we will, we will. But it’s so hard to walk around and participate in daily life when my heart hurts so much.

***

Today I donated to the Leukemia & Lymphoma Society to help my friend Beth reach her Team in Training Goal. Please help  me spread the word about this fundraiser. I’d love to see Leukemia wiped out.

Filed Under: Cancer, Cancer Mom Tagged With: , , , , , , , , ,

Combing The Bay (Area)

February 7, 2012 By Leave a Comment

We are looking for a house. I know how that sounds, considering David is unemployed and Jack was just diagnosed with Leukemia but, well, we’ve been diligently saving for it and had the purchase/move in our plan for this summer. The social worker at the hospital told me right off the bat that we shouldn’t set aside all of our life plans. We should carry on with life and keep it as normal as possible. We don’t want Jack to feel like his health is messing up our life or something. Okay…yeah.

So, we’re looking at houses. Our current place is too small for us and has some maintenance issues besides (we have a lackadaisical landlord on one hand…but really cheap rent on the other). We’d like to be in a place that is more accessible to the hospital since we’ll be spending a lot of time there over the next three years. Gas and tolls for crossing t he Bay Bridge are expensive!

We’ve gotten pre-qualified and are pretty much ready to go with a Cal FHA first time homebuyer’s loan (which allows us to get a house with only a 3.5% down payment). We’re lucky enough to be able to qualify for stuff on my income alone, which bodes well for our future once the job market recovers for realsies.

In the mean time, we are looking at houses online every day and setting up showings and attending open houses on the weekends. I know some people find this fun but I am not one of those people. Also, I’m impatient – I just want to find something that works and buy it. Not to mention I’m a sucker for a good deal…it’s a good thing my husband is more level-headed about these things.

Part of what makes this difficult is that we don’t have a particular city in this area that we love. We have friends all over the place here, I work in the city, Jack’s dad lives an hour south of the city, and the hospital is 40 minutes east of us and over a bridge in Oakland. We are central to friends, Jack’s dad, and the hospital right now…but it’s the city – we can’t afford a decent house here (with a yard for our dog) AND guarantee Jack will go to a decent school (enrollment is a lottery system, transferring is a crapshoot, and there is no way I’m driving across the city to take Jack to the school he currently attends).

So, anyway…wish us luck. We hope to find something that we love for a more-than-affordable price that is convenient and takes an adequately lengthy time to complete the buying process (this is where short sales come in handy – we want to find something now but buy months from now so that we don’t have to ask family members for “cash gifts”).

In the mean time I’ll be over here freaking out about growing up…

***

By the way, go check out Band Back Together today – Jack and the Monkey In My Chair program are featured.

Filed Under: Domesticating Tagged With: , , , , , , , , ,

Trying To Look On The Bright Side

February 3, 2012 By 3 Comments

After all, we now get to enjoy:

  • Handicapped parking spots
  • Eaaasssy bedtime
  • More grown up time thanks to an early bedtime
  • An abundance of love and support from all of our friends & family
  • Seeing just what a sweet, kind, and strong person Jack is
  • Less worry about whether Jack’s getting enough to eat
  • Teeth brushing 3x a day without argument (just to avoid mint mouthwash)
  • Jack learning confidence early – if he can beat cancer, he can do anything!
  • Candy and sweets – Jack prefers pickles and turkey, so more sugar for us!
  • Awesome wish granting from Make a Wish program (if we can get Jack to think bigger than a toy)
  • The knowledge that we’re getting the full benefits of the health insurance coverage we’re paying for
  • Easy access to specialist doctors
  • A justifiable excuse to get delivery food and Starbucks
  • Legitimate reasons for sleeping in
  • Fewer disappointments with mail – most of it is fun mail!
  • Newly acquired nursing skills
  • Free books (even if they are about Cancer)

This list is a little tongue-and-cheek but, really, we do recognize all that we have to be grateful for and feel very lucky to be in the position we are in (under the circumstances). Cancer or not, we still have it pretty good in life.

Filed Under: Cancer, Cancer Mom Tagged With: , , , , ,

Scattered

February 2, 2012 By 9 Comments

I’m burned out. I’m making stupid mistakes, like leaving food out on the counter overnight to spoil (at least three times now). I didn’t realize until the night before my dentist appointment that David had school at the same time and we had no one to watch Jack. I frantically texted everyone I knew within a reasonable distance to babysit (thankfully our upstairs neighbor came to the rescue!). Then on the way home from said dentist appointment, I ordered delivery food before being reminded that the same neighbor had signed up to cook dinner for us that night! Luckily, I was able to cancel the delivery. Not to mention I was decidedly upset when I ran out of Starbucks gift card funds this week. David pointed out that I can use my debit card, and he is right. But for some reason it was just another THING that set me off.

Most of the changes aren’t hard. I mean, catheter maintenance and blood draws are pretty easy. Meds take like 5 minutes to administer. Dressing changes suck, but are only once a week (and the hard part is done by David – I just focus on trying to keep Jack distracted with conversation as much as possible). We are taking turns with cancer clinic visits. Hell, Jack is even going to bed early most nights!

This should all be manageable but for some reason, it’s not; I’m scattered. I teared up last night when Jack told me he’s full of bravery and could share some with me for my own doctor appointments – he said it wouldn’t take from his level of bravery at all. The sweetness kills me.

His little face has ballooned with all of the eating he’s been doing thanks to the steroids. It’s really hard to see him changing so drastically and so quickly. The extra weight only serves to highlight the dark circles around his eyes and make them look more sunken. Combined with the lack of energy, the bouts of crying over things like having to drink water (it was seriously upsetting him – “my life is miserable!”), and the fact that his eyelids flutter the moment his head hits his pillow as early as 6pm…god, it hurts.

Meanwhile I am trying to get back into the swing of things at work and I have a ton of well-meaning (yet distracting) people stopping by my desk throughout the day. They all ask how Jack is doing or how I’m doing. They ask questions about treatment and about what’s next. Over and over. It’s hard enough to get work done in my current state without the interruptions. It feels like the life is being sucked out of me with every interaction.

I know with this post I’m kind of throwing myself a pity party. I don’t write it out to get sympathy or attention, though – I really just want to get it all out somewhere and see if anyone has suggestions on how to handle all of this better…I haven’t yet located a support group in San Francisco…

***

And for something a little lighter – check out my new site design! Princess Jenn took pity on me and cleaned the space up so it’s much calmer and runs a lot faster. She is fucking amazing and seriously saved me from having a breakdown. You guys should hire her.

Filed Under: Cancer, Cancer Mom, Illness Tagged With: , , , , , ,

Coping With Challenges

January 19, 2012 By 3 Comments

The coffee isn’t waking me up today. I’m unsure what to do about it.

This morning started off okay and then Jack got grumpy – he didn’t want to change his clothes. He cried while I changed him into a fresh set of pajamas (they still seem most comfortable right now with the soreness of the recent lumbar puncture). I held and hugged Jack and then he took his medicines and was happy again. I think when I left the house I took his bad mood with me, though.

Most of the time now I walk around feeling like I’m just on the verge of panic – like there is a tide rising and threatening to wash over me at any moment. I feel raw, as if my heart is on the outside of me and I’m waiting for it to be crushed. I guess I’m waiting for the other shoe to drop. I can’t get over the feeling that there isn’t more bad news coming.

I want to believe that Jack will not relapse. That we’ll be able to keep infections and colds at bay. That his treatment will continue to be like it is now with very few side effects. But the more I read on the subject, the more unlikely that all seems. What if his chromosomes come back abnormal at the end of the month? What if the chemo causes neurological problems or physical issues? What if that constant ache in his abdomen is more than just a symptom of the disease he is fighting?

I want to hide from it all. I probably won’t pick that book back up. This seems to be one of those unusual instances where I think I’d rather be ignorant. My ignorant thoughts were, for once, brighter than my informed ones, which doesn’t make much sense in our situation. This is the best cancer, right? The most treatable and curable? But where the FUCK did it come from?

I seem to also be stuck on the thought that I must have been a gigantic asshole in a past life. Holy hell, my life has been hard and it just doesn’t seem to stop! I felt like it was finally getting better – that things were on a more level path and I was letting go of so much angst. And really, I can see the progress I’ve made from therapy in how I’m handling all of this. I can see how much stronger I am and I can even appreciate that about myself. But life is dealing us a low blow now that it is smacking my kid around – the very person I’ve been desperate to protect these past 5+ years.

“I hate challenges,” Jack told me this morning. You and me both, kid! I’m tired of them. So very tired.

We’ll come out of this stronger; I know this. But I don’t want more strength – not if it means the shit is going to keep coming. I’ve had my share of shit and I’d like to pass on more.

Filed Under: Cancer, Cancer Mom, Illness Tagged With: , , , , , , , , , ,

Delayed Reactions

January 17, 2012 By 6 Comments

Jack’s out of the hospital. Thank goodness. Today he is at his first Cancer Clinic appointment getting an infusion of chemo. I’m looking forward to him coming home, and hope he isn’t too sick afterward.

I keep trying to tell myself the worst has past – that the prognosis is good, that so many cancer cells have already been zapped by the chemo, that the disease won’t progress. I know these things in my head. Still, my heart aches. I struggle to get out of bed in the morning, to eat, to do anything to take care of myself. When Jack isn’t here I don’t know what to do. What was life like before this diagnosis? What did I think about when cancer didn’t fill my every waking moment? What if Jack isn’t one of the 90% of kids cured?

I keep thinking about how all of this almost went undetected. I almost didn’t take Jack to the doctor. We almost didn’t opt for a blood test to “confirm” anemia. It would have been so easy to dismiss all of his symptoms as a combination of fighting off a cold and returning to school after a long break. It serves no purpose to think about these things but they are invading my mind nonetheless.

I am very much shell shocked. I got through the crisis period without completely freaking out, but I didn’t escape the freak-out – it’s just happening after the fact. My brain and body are not cooperating. I can’t think straight and I feel tired and/or sick to my stomach all the time. I started getting angry at the piles of boxes in our house – not that I don’t appreciate everyone’s thoughts and generosity but I just want to go BACK. I want to NOT need any of this stuff. I’d much rather have someone take this nightmare away. So when I look at the boxes and think about what they are for, I have this irrational anger…and then I get angry at myself. :P

I can keep myself busy some of the time. My friend Kurstan ventured out to Target with me this weekend and I bought storage for medical supplies and cleaning products. I came home and organized a bunch of the house, put away the laundry my friend Katie graciously washed while we were away, and started washing items we brought home from the hospital. I’m back to work this week, as well, but I’m having trouble focusing on the simplest of tasks. Maybe I need more coffee.

All of our friends and family (and even strangers!) are being so awesome and loving and kind to us. I really do appreciate it, despite this cloud over my head. I haven’t once felt alone since this all started – I feel a community of support behind our family. I just wish the occasion hadn’t arrived where we need this support…

Filed Under: Cancer, Illness Tagged With: , , , , , , , , , , , , ,

Hospital Missive

January 12, 2012 By 9 Comments

I’ve been sitting here in the hospital room listening to the DING DING DING DING of Jack’s vitals monitor. Apparently the kid has a low heart rate while sleeping – it’s been hanging out in the 50s tonight and the machine is not happy at all.

Today was hard. Jack’s energy has been completely zapped and he has seemed to be in a daze. He wouldn’t even answer yes or no questions. When he passed out from the Benadryl administered prior to a blood transfusion, tears broke through. This is all very sad – my little boy of 5 years has a terrible illness and is getting pumped full of toxic chemicals – A SHITTON of them. How did this happen?? It’s all very horrifying.

Part of the way through this blog entry, the machine started freaking out and flashing EXTREME BRADY while making a higher pitched DING. The Pediatrics resident came to check Jack out – his heart rate was dropping down to the 40s – and apparently it’s fine because his O2 level is good. Every three minutes for the past hour or so, I’ve been hitting “pause alarms” so that the machine shuts up about the damned EXTREME BRADY. When I get super worried I sniff in his ear to irritate him and wake him up – his heart rate goes up a bit then.

It doesn’t look like I’ll be getting much sleep tonight. I tend to be hypervigilant due to my PTSD and these alarms are not helping at all.

As much as I want him to get out of this hospital room, I’m also nervous about taking Jack home. Having medical staff right out the door is pretty convenient (at least when you need them). I can already imagine the number of times I’m sitting at home debating whether to take him to the ER or not.

Thank goodness for friends and family. Thank goodness for an amicable relationship with my ex. Thank goodness I have a strong marriage with David. I know these things are going to get us through the next three years, even if right now things are rough.

Thank goodness most of all for Jack’s strength and bright spirit. I’m going to help him kick Leukemia’s ass.

Filed Under: Cancer, Illness, Parenting 101 Tagged With: , , , , ,
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