28 March 2013

Baby T

When I was a child I didn't really have any security items, at least not that I can recall. Not a baby doll, stuffed animal, or even a baby blanket. I am sure I went through phases and was attached to random things for short periods of time, but nothing really stands out in my memory. I've never really understood those attachments until now. For the first time I have that thing that I am completely attached to, panicked when I am not near, and almost completely dependent on for comfort.... my baby girl T.

T was born just under two weeks after the MRI found the lesions on my husband's spine, and exactly one week before we got the diagnosis. At four months old, her age is a constant reminder of just how long we have been on this journey. Though four months is such a short period of time, it feels like so much longer. Hours blur into days, days into weeks, weeks into months. I occasionally look at my email and see messages I thought I had responded to or had planned on responding to, dating over a month ago when I could swear that it has only been a week. Hopefully I will catch up soon.

During the day everything has the appearance of being normal, but at night when sleep eludes my husband and often times myself, thoughts begin to circle and my brain becomes overwhelmed by the good, bad, and the ugly. I often wake up to the realization that C is no longer in bed with baby T and I, I then hold my breathe and listen to see if I can figure out where he is in the house. Sometimes I will hear the creak of the sofa and know that he has taken some pain medicine and is probably catching up on various news articles he saves for just those times while he waits for it to kick in. Other times I will hear him snoring and know he is likely lying on the hardwood floor or, more recently, sitting slumped on the couch having finally found a position that allows him to finally fall asleep. Occasionally he will be lurking over me to see if I am awake, to inquire about the ownership of the cupcakes in the kitchen left over from a playdate...... Or I hear the toilet seat, and well, I won't elaborate there. After I've located him, my eyes tend to drift back to his side of the bed, and I feel alone. The only thing that stops the tears from starting is then looking down to baby T, sleeping so peacefully in my arms. Sometimes with a sleep smile or giggle, or occasionally a hug. Okay, so I know it isn't a real hug, but she shifts and tilts her body into mine for a few moments and then relaxes back to her former position... like she has some sense that that is what I need in that moment.

Then there are those rare occasions where I can't locate where C is, so I get up and go looking for him. Early one morning I found him sitting on the floor in front of the fireplace, the one place that doesn't have a discernible noise, scrolling Facebook. With all three munchkins sleeping, I took the opportunity to sit with him for awhile. Rik Emmett had posted a Youtube video from one of his recent concerts, and we sat snuggled together in his blanket and watched it for awhile. It felt so good sitting there for just those few minutes, because for that short time it felt like we were a normal couple again.... no worries, no fears, no conversation about tests and scans, it was just us. I hope we find our way back to that, it is yet another thing I miss so much.

23 March 2013

Daddy's Sick

The weeks that followed the diagnosis were such a blur, so many tests were scheduled for my husband that the three weeks that he had taken for paternity leave disappeared before we knew it. It was very surreal, everything seemed so normal except for the diagnosis. We were adjusting to life with an infant, helping her sisters learn how to be the helpers they were so desperate to be, grocery shopping, enjoying the short stints of company of wonderful friends who brought us food.... but Daddy was sick, and we could barely speak about it.

I remember getting my mind locked in the worst case scenario, and beating myself up royally for it. I couldn't control the tears, they seemed to come constantly. Every time daddy went outside to play with the girls I would stand at the door and watch and wonder how many more opportunities they would have to create these memories together. When he'd hold the baby, I would fall apart wondering if he would be around to see her crawl. Would he be there to walk K down the aisle at her wedding? Writing this feels so melodramatic and so far from the reality we were facing, but I was terrified. Terrified to loose my husband, terrified that there was not a thing I could do about it. I couldn't control it and I couldn't fix it. I hate to admit that I still feel this way.

We had many discussions on how we would talk to K (the feisty 5 year old) and H (the quiet 3 year old). We finally landed on keeping with what we had told them when this started, that daddy was sick. Not the kind of sick that you catch from germs, but sick enough that it will take a long time for daddy to not feel so bad. We didn't use the word cancer, but I know K has heard it as it gets used often, if she asked I would tell that that is the name of daddy's sickness. They haven't asked too many questions though, but they became familiar with some of our new, regularly used vocabulary: prescription, pharmacy.... oncologist. We had to work to get them to understand daddy wasn't able to rough house with them as much as he used to, he was in too much pain. We developed a red light/ green light system so they would know when they could run to daddy without either of us yelling at them to be careful or slow down.

K is so much like me, I could see it in her eyes when she would watch daddy stretch on the floor in front of the fireplace trying to relieve his pain, she wanted to fix it too. She would constantly ask which light it was so she could give him as big a hug as she could, or try to massage his back..... it was her way of helping. For a long time I thought H was oblivious to it all, she knew he was sick, but never asked any questions. But as daddy stayed home more due to the pain, H wants to constantly be by his side, choosing to stay home with him instead of tagging along to some of K's activities. Her typical reserved manner has all but disappeared and she is full of hugs, kisses and the random "I love you".

Oddly, the hardest time for me with them is the various children's birthday parties we go to. Something about this age group, that both parents often come and stay and socialize while the children have fun. It hits me how alone I feel, how it isn't work or travel stopping him from coming, but that the cancer treatments, even early on, took enough of a toll on him that he couldn't handle the two hours of munchkin chaos. Maybe it makes me realize just how much I rely on him and just how hard it will be if..........

21 March 2013


I should have handled it better, I've heard this word all my life.  My parents both worked in cancer research, in fact, that's how they met.  When I was a teenager my mother was diagnosed with Stage 4B lymphoma, I think I cried.... I know my parents didn't.  It was a fact of life, their approach was what treatment do we persue and when do we start?  We didn't talk about it all that much, it was what it was.  She went into remission before I finished high school and that was the end of that, if it returned we'd address it then.... but no sense worrying what could be, just deal with what is.  I have had relatives who lost their fight with cancer, those who won, and those who are still in treatment.  The word never held fear for me, just a fact of life...... until it was my husband who brought home the diagnosis.

I remember so vividly the meeting in the doctor's office.   My husband had some back pain and had been seeing a chiropractor to try to relieve it.  After little success, he was sent for an MRI to look for a herniated disc, instead they found a series of lesions on his spine.  They threw around possible diagnoses, all of which had "oma" in their names.  I was nine months pregnant, just weeks from meeting our third daughter.  I couldn't stop myself from falling apart, I called my parents who in their calm, expected way told me to hold it together until we knew for sure what we were dealing with.  No sense in worrying what could be, let's find out what is.  I wish I had been stronger, I wish I wouldn't have cried so much, I wish I could have been a better comfort to my husband, but in those first few days when we were getting tests scheduled and appointments made I couldn't help myself.  The what ifs were too big and I couldn't get my brain to slow down enough to work my way back from the worst case scenario.

Being that far along in my pregnancy had its advantages, the tests and appointments were expedited.  A CT scan was performed ahead of our appointment with an oncologist which uncovered an enlarged prostate... a biopsy was scheduled that same week.  None of the doctors seemed to think a cancer diagnosis was in our future, and with that shred of comfort we went and met our sweet little blessing just before Thanksgiving.  While in the hospital with her, the doctor called to let us know the results were back from the biopsy and an appointment was made for the following Monday.

Some moments in life really feel ripped from a movie, like there is a camera watching and capturing every reaction.  Monday, November 26, 2012 was that way.  I remember that I was sitting in bed nursing my baby girl, her older sisters were off playing together outside when my husband returned from his biopsy appointment.  His eyes watery and red, I asked him if he was okay... knowing the answer was no, but not having any other way to prompt the conversation.  Just looking at him, my heart was in my stomach and it felt like my blood turned to ice, something about the anticipation of bad news stopped everything and I was even scared to breathe.  The words stage 4 prostate cancer hit me so hard I am still reeling from them......