Eight Weeks

May 16, 2012 By 3 Comments

Tomorrow is the day. Jack starts the Delayed Intensification part of his treatment. It will last eight weeks and add at least eight medications (seven of those are chemotherapy) to the two he is taking now. He’ll take four medications at home – the rest he’ll receive through his Broviac catheter or by spinal injection. He’ll visit the clinic three times within the next ten days alone.

I’m terrified.

So far all of this has been relatively easy, all things considered. We’ve actually managed to forget sometimes that Jack is sick at all. This won’t be the case during this phase. He’ll almost certainly lose all of his hair and experience nausea and vomiting – at least five of the meds list those as likely side effects, not to mention weight loss. He’ll ache and he’ll be moody and he likely won’t sleep well. I can only hope he doesn’t experience the side effects that would result in long-term damage to his body.

I’m filled with dread. Jack’s tired already – we all are – and the hardest part hasn’t even started yet.

Please let these next eight weeks fly by.

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

Getting Lost With Ghosts

April 26, 2012 By 6 Comments

I wish I had better things to say. I wish I could say I’m doing a great job of handling everything that is going on right now. I do have good days and bad days – the bad days are taken over by anxiety attacks and depression, while my good days are still filled with weariness and worry. I’ve been burying myself in television and books to escape err, cope.

I haven’t been sleeping well. I look at the calendar several times each day to remind myself what day of the week it is. I forget to drink my coffee. Most nights I skip dinner. Last night I ate peanut butter cups.

My house is a disaster. And it smells. My cats ran out of food last night but I got home too late to get to the pet store for more. They are surely pissed off today. I need to fix the flat tire on my car, too. Oh, and go grocery shopping…

I took a day off last week sometime. I stayed in bed all day. I knew I had to move my car or risk getting a ticket. I went back to sleep instead. When I woke up, I peeked out the window and saw a ticket on my car, but I still couldn’t find it in myself to care. The idea of getting a second ticket didn’t even push me out the door…not until I realized David would be upset about it (we’d JUST talked about our expired parking permits a few days prior).

Things are a little better when Jack is with me. It gets me out of my head, I suppose. When he’s not here, I think about his treatment. It’s a few weeks until he starts the phase with eight different meds…it’s been a while since he’s spent time with kids his age…he needs to go to the dentist…we need to draw blood on XYZ days…I need to take a day off for his next treatment…when will he lose his hair…how will he handle it…is he doing too much activity…when will he end up back in the hospital…

It’s only been three months since his diagnosis – how long can I do this? I’ve been trying to think of ways to destress. Obviously this all has lit a fire under my PTSD. Usually when I’m stressed I take a trip, get away…but now I’m terrified to be away from Jack. Every time I try to make plans I just think about all the uncertainty ahead and how I’d rather just sit on the couch watching movies with him and snuggling under a blanket. I need to be here in case something happens.

I’m mad at myself for feeling this way. Jack’s been doing great. There have been no set-backs. Side-effects are few. In so many ways he is a normal kid. There will be an end to all of this. The end is three years away, though, and there will likely never be an end to my worry…

I need to keep going. There is so much that needs doing. I just need to stop getting lost in all of it and leave my ghosts behind.

Filed Under: Cancer Mom, Illness 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: , , , , , , , , ,

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: , , , , ,

Thank Goodness For Paranoia

January 7, 2012 By 12 Comments

Jack didn’t seem that sick. Something was off, though, of that I was sure (see last post). I tried to tell myself I was being paranoid but still…there was a tap-tap-tapping in my brain that wouldn’t go away. I thought to myself, “Maybe this is my mother’s intuition. SOMETHING has set off the alarm bells.”

Would we have caught this if Jack hadn’t hit his head while at his dad’s? I was worried he had a concussion because he was tired and complained of being dizzy. I watched him like a hawk for days…

It was weird – usually Jack woke us up in the morning right around 7:30. When that didn’t happen and I let him sleep in to see how long he’d go, he slept until 8. I went into wake him up but he was dragging. I sent him to school anyway, figuring he’d perk up when he got around the other kids. A couple hours later the school nurse called to let me know Jack felt like he was going to throw up and he looked really pale.

Home he went (with David) where he promptly ate lunch and went to work on Legos…seemed like he was fine! Until he spiked a fever.

Our batteries were dying on our temporal thermometer but Jack felt warm to me. I decided to take my own temperature to see what the difference was between his body temp and mine on the flakey thermometer – a two degree difference. He was curled on the couch with knee pain and a bad headache. I decided it was time to call the advice nurse.

The advice nurse couldn’t tell from my description over the phone whether Jack’s condition was a concern or not, but we figured it’d be best if we booked an appointment. Unfortunately, Jack’s pediatrician was out of town and there were no openings with the back up docs. I opted for a telephone appointment.

The telephone appointment with the doc went much the same as the one with the nurses. Doctor thought it could be mono or anemia. “Do you want to bring him in?” I said yes and we booked an appointment at the clinic.

Jack seemed almost back to normal that day. Except…what if the doctor hadn’t hesitated before leaving the room to glance back at Jack’s face? “He looks pale to me. Does he look pale to you?” he asked. Jack was definitely pale with circles under his eyes, even after 12 hours of sleep the previous night. The doctor gave me the option of having his blood tested; otherwise we could just get some liquid iron. For some reason, I opted for the blood test. I think I was being lazy – I didn’t want to give him vitamins if he didn’t actually need them. I thought confirmation was best.

I thought it was strange when the phlebotomist took several vials of blood. Why would they need all that blood if the doctor was just worried about anemia? Well…

Turns out Jack has cancer.

 

Filed Under: Cancer, Illness, Parenting 101 Tagged With: , , ,
« Older Posts