Mom's The Word - A Blog by Jen Maier Founder of urbanmoms.ca

2009, already I dislike you.

This year there was no celebrating for me at the dawn of 2009. I am not interested in what this year has to offer. I want time to stop. I want to stay right where I was over the last month. Safe with my family together. Happy. Healthy. But, as every Trekky knows, resistance is futile. So 2009 pulled me in kicking and screaming.

Every year I have seen the birth of a new year as a beginning - a clean slate. I look forward to the journey ahead and the changes and challenges this new year has to offer. Not so 2009. I don't want to look too closely at you. I don't want to peer too far ahead. I am suspicious of you from the onset. I am afraid that what you have in store for me and those I love is frightening and sad and lonely. As the minutes ticked away and the countdown began I started to panic. You were coming too soon. I longed to hold on and slow things down. To go back to a time when, naively, all I saw was hope and opportunity on the eve of a new year.

They took my mom off the chemotherapy. It wasn't working. Her cancer has continued to grow. So now we face this reality. We cling to each other. We love and we go on living. Because, as hard as it is and as much as we hate it, this is part of our journey. So, 2009, even though you scare me, I am determined to face you head on not missing a single, solitary second you offer us.

As my sister, Allyson, a Palliative Care Nurse, wrote so eloquently a few years ago in her post In The Process of Dying, There is Living:

...in all the sadness that it represents it holds the most beautiful and precious times you may ever experience with another person.   People want to hide from the fact that people die but they forget that in the process of dying, those individuals are living.  Those moments are filled with reflections of their happiest memories and funniest stories, their hopes for their loved ones’ futures.  Those moments are holding that person’s hand and feeling that you couldn’t be closer with them.  They are moments of honesty about life that we usually brush aside.  They are dignity and fear, they are laughter and trials.

Love. Always.

This Is What I See

This Holiday Season is full of emotion. I can't seem to express all of this in words so I decided to try capturing it with my camera. This is pre-Christmas 2008 through my eyes:

Gramma's knitting class. What a patient woman!

So much excitement means sleepy, sleepy "girls".

Sunrise after snow.

The snow. Oh! The snow!

Crazy English Men jumping off high places.

Crazy English Man throwing snow at his pregnant wife (note to self: never, ever throw snowball at Crazy English Man).

Smiling faces.

Smiling toothless faces.

Smiling sunny faces.

Tobagganing fun!

Wrapping surprises.

Love. Always.

Peace.

Happy Holidays.

Where You Least Expect It

Things have been tough recently. Most of you know this. Yet in the middle of all of this there are some beautiful things. Like my friend Karen dropping over dinner and wine or Katie sitting with me while I cried or my kids' teachers and school principal offering support or a fellow hockey mom, Daphne - who I barely know - dropping over a bag full of food. These gestures are perfect little gifts that I hold on to. They prevent me from completely getting lost in all of this.

Recently I found support where I least expected it - on Facebook. I have a lot of friends on Facebook who I "know" through networking. I have met some amazing women who run their own businesses but I don't really know them personally. But online communities make some of your personal life public. So as my Facebook updates and blog posts provide a window into my life I found support from a fellow Facebooker, Anne. I met Anne because she runs the website www.mississaugakids.com. The first message I got from Anne went like this:

I've been lurking on you website and been unable to comment. It is all just too close to home for me. I risk too much bubbling up to the surface...

Just try to be like Dory in Finding Nemo...Just keep swimming! Just keep swimming! Cherish each wonderful terrible moment.

Hoping all turns out well.

Anne

You gotta love a woman who quotes Dory! This was perfect. Exactly what I needed. Then today I got this in response to my "Jennifer is tired. So tired." update on Facebook:

I know your tired...

I remember this so vividly.

Every part of my body and mind ached.  I especially remember my jaw.  It was constantly clenched.  I would try to yawn and wiggle it to stretch it to try to loosen the muscles in my face but it would just be all locked up again in minutes.

I could not even attend a yoga class since I just could not begin to think about making my mind still.  The more I tried to the more it would race.  I just had to keep busy with "stuff" to keep going.

I remember trying to sleep but tossing and turning instead.  When I finally drifted off the sleep provided very little rest.  I must have been struggling even then with it all.  I would wake up and feel like I had been crying for hours.  My jaw and fists would be clenched.  My body ached like it had been in a fight.

Then, with no real rest, we continue to press on through our day.  Life goes on around us.  How is that possible that our world is turned upside down but the garbage still needs to be taken to the curb and the parent council is still meeting Tuesday night?

You are so wonderfully blessed to be able to be with your mom.  My parents do not live near, so it was especially tough.  Cherish these moments.

I'm attaching a photo of my mom and I on the beach.  This was the last day we were able to go to the beach together.

I've never actually told anybody this before but I'm crying in this photo despite the smile.  Dark glasses hide the real emotion.  Sometimes burying it is what you do to get through each terrible wonderful moment.

Anne

Anne and her mom, Karen.

Thanks to Anne and to all my friends, both virtual and real-life.

I Got Nothin'

I have sat here staring at a blank screen for the last 30 minutes. I decided I wanted to write about something else today. Something other than my mom's cancer. But nothing came to me. Nada. It's not like nothing else has been going on in my life. I mean, come on. I have two busy kids and I run my own business. You'd think there would be tons of fodder for a good post. But I got nothin'.

So then I started thinking about why I have absolutely nothing to say. It boils down to this - right now nothing else matters. My life is consumed by my mom. Everything else seems small and unimportant.

I want to clarify something though, my life is consumed by my mom not by her cancer. For a while there it was the logistics, the treatment, the side effects but now, now that the cancer is back, it is about her. I want to leech on to every moment and hold on tight. I want to soak it all in and make every single second count.

The other night we all went out for dinner, my family of four and my parents. We had received some pretty somber news that day but once we were together it was all OK. We laughed and talked and ate and drank wine. We were living in that moment.

My sisters will be flying in soon for the holidays and the whole family will be together. This is what matters. Regardless of the future we will be together now and I will consciously live every minute. We are so fortunate to have each other - a built in support system. It is during these trying times that you realize the value of family. I am the luckiest person on earth.

And We Wait

We have come so far in the last 200 years when it comes to modern medicine. But what I have learned this week is that we still have a really long way to go. There is no cure for cancer. There is no totally effective treatment for melanoma. What works for some doesn't always work for others and the doctors don't really know why.

This week my mom had some large lumps appear on her back near the scar from her surgery to remove the initial melanoma. The lumps appeared very quickly and grew rapidly. We were convinced it was merely some fluid build up or something to do with the healing. And we may be right. Or we may be wrong.

My parents went to see Dr. #1, the oncologist, who said it was a recurrence of the melanoma {insert sick feeling, tears and profanities here}. They discussed alternate treatments, surgery and chemotherapy. This was not the news we wanted to hear. Then my parents went to see Dr. #2, the surgeon, who said it may or may not be melanoma. It may be something from the surgery - old blood or fluid - he wasn't sure. He had never seen anything like it. He took a needle biopsy. The results will be back on Tuesday.

So we wait. For Tuesday. For the MRI and the CT Scan. For the pathology and the expert's recommendations. While we wait we tell each other "I love you" because really that's all that matters.

P.S. - Thanks to my wonderful friends. Especially Karen who brought over a beautiful dinner complete with a bottle of wine on my mom's last day of treatment. "I get by with a little help from my friends".

Lumpy

My Mom: Jen. Come here. Does my scar look lumpy? It has been feeling a bit lumpy.

Me: Let me see. (Lifts shirt to see scar on shoulder)

My Dad: How long has it felt lumpy?! Why didn't you say it was lumpy?! You need to tell someone if the scar feels lumpy! Jen, does it look lumpy?!

Me: Oh my. Well. Yeah. It looks lumpy.

I'll keep you posted.

The Final Stretch or The First Step

This is the final week of the intensive Interferon treatment for my mom. It has been a wild ride and I know we will all be happy when it is over. But, this is by no means "it". She has 11 more months of Interferon self injected 3 times per week and we are waiting to hear whether she will have a 4th surgery and/or Radiation. So, yes, this is the Final Stretch in one sense but in another it is merely the First Step in her treatment.

For me this has been all encompassing. This time has taught me a lot about myself and about others. As I am the daughter in close physical proximity to my parents, they have been living with us and I have been accompanying my mom to her treatments and appointments. I always thought I couldn't handle it. That I wasn't strong like my sisters and would not be much help to my parents if anything were to happen. I wish I didn't have to test the theory but I guess the good news is, I am stronger than I thought.

I have also had the pleasure and disappointment of learning about others. This has been a time where I have had little time for anything else, including myself, my friends, and my kids. I have likely missed returning calls, forgot commitments, and otherwise dropped the ball. I have also had to let others take the lead on projects and depend on people for help. For the most part, I have been amazed. Most people are very generous and so many of my friends have offered their time and assistance and support whenever I need it.

However, there have been a few who have seriously let me down. Like two "friends" who shall remain nameless who I had confided in about a very bad day and some concerning news from my mom's doctor and they thought only about themselves and how this inconvenienced them because I was not going to be available when they wanted me to be. I have found that I just do not have the energy anymore to put into these relationships. I wonder if once my mom is feeling better whether this will change again and I will find myself able to see some benefit in these friendships. Or whether I will have had enough and will find my perspective forever changed because of this experience.

As I said, it is not over but this phase is and I am glad. It has been tough on my mom physically and on my dad emotionally. It is hard to watch someone you love suffer. But, hopefully, the worst is over. We'll continue to navigate our way through this disease and its treatments and continue to look at every step as just another step closer to recovery.

The Latest

It's funny, right now my life is completely focused on one thing - my mom. I am honestly having trouble focusing or even caring that much about anything else. It is amazing how things that seemed so important a few weeks ago suddenly just don't.

I think one person only has the emotional capacity to take on so much. There is limited space for this stuff or else you would go crazy or crawl under a rock or something. It would be overwhelming. That is how I feel. I am at maximum capacity so the rest just gets a more practical, less emotional response and a lot less of my time.

Take Halloween for example. Normally I am right into it. Maybe not as organized as some but this year it was a bit of an afterthought. We bought our candy the day of. My son's costume was thrown together the day before. We didn't even remember to light the jack-o-lantern or fire up the scary music. And you know what? It didn't make a bit of difference. The kids had a great time and I was not worried about any of it. The details just all seemed insignificant.

Here are a few pics (that I remembered to take just before the costumes came off!):

My daughter. What a unique kid. All of her pals are princesses and she was a meat-eating dinosaur. Gotta love that girl!

Yup. My sweet boy was a dead business man with a bullet hole in his head. There was a big trend in scary with his group this year.

So, lesson of the day? The details are far less important than you think. Thanks to my friends who fed me beer and made me feel welcome on Halloween night. Good friends make everything better.

Suffering is Suffering

Wow, this is hard. I know my mom is sick because of the Interferon treatment but, as a wise mom at hockey said to me, "suffering is suffering". It's true. No matter the reason, when someone you love is in pain it hurts.

My mom has been experiencing extreme side effects from her treatment the last few days. The worst are the severe headaches, like migraines, which cause nausea, vomiting, and pain beyond belief. The pain is so bad that even a slight movement causes her head and stomach to lurch. Lying flat offers no relief and sleep is impossible. How does she face another 2 weeks of this? Hopefully the side effects will lessen and we plan on talking to the doctor about getting some migraine meds prescribed to see if that helps.

The good news is she is half way there. Her 20 days of intensive Interferon treatment are now down to 10. And in true form she has a list of suggestions and ideas to help the hospital, the staff, and other patients improve access to information, processes, and support for the future. My mom was a nurse for 40 years and spent the latter part of her career helping hospitals improve just this sort of thing. Now, as a patient she has an inside view and wants to help.

Thanks again to everyone for your support! Please continue to send your positive vibes.

Cancer Treatment - Week 2

First of all, I just want to thank those of you who have sent well wishes for me and my family. I really, really appreciate it. I don't have a lot of news. Things are going well, I guess. As well as something that makes you feel continuously yucky and flu like and tired can go.

The good news is my mom's body is responding. The Interferon is having an effect and stimulating her immune system to fight those nasty cells. This means that she was taken off the treatment for two days (no, it didn't really help with the symptoms) and this means that she will now be getting a lower dose. It's all a bit of a balancing act really. You want to stimulate the immune system but not so much that you cause major problems. Too much and your liver starts to fail or other bad things happen, not enough and your not fighting the cancer. Add on the fact that each person reacts differently and you've got a bit of a crapshoot.

It's weird because before the treatment she seemed so healthy. Energetic, vibrant and full of life. Now, fighting the cancer and supposedly getting better she seems sick. Strange thing that your body has to get sick in order to get well.

Oh, by the way, did I happen to mention lately that I really, really hate cancer?

Put Radiation on The List of Things To Do

I have loved having my sister here for the last week but to be honest everything is overwhelmed by my mom's cancer and the treatment. I feel bad for my sister. Her life is in such a wonderful place! A baby on the way. A wedding to plan. In her mid-30's I'm sure she sometimes thought this might never happen. And now that it has she can't joyfully plan everything all carefree. She has to worry about cancer.

Today my mom went for her treatment again. She is feeling better thanks to some pre-meds which means the side effects are better. Thank god. Unfortunately the good news didn't last. My mom got her results from her last surgery and they found some stray little buggers still floating around in there. I guess the only way to look at it is that it definitely could be worse. Off to the Radiation Oncologist and add radiation to the list of things to do. 

I don't really swear on my blog. I make a conscious effort not to because I think it is usually unnecessary and way too often gratuitous. However, in this case I think it is absolutely appropriate. I fucking hate cancer.

F*#@ing Cancer Treatment Day 2

Yesterday was rough. Really, really rough. I think we were fooling ourselves a bit to think that my mom might escape any real side effects. Although I do believe that a positive attitude helps, it can not fend off the full-on body aches, shivers and fever brought on by the Interferon.

Even worse than all of that was the severe chest pain that forced my sister to rush my mom to the emergency room to get checked out. After a day of treatment the last thing my mom needed - not to mention my preggo sister - is to sit until 1:30am in a hospital waiting room. The good news is her heart is strong. It was just another side effect of these powerful drugs.

I am not good at this stuff. I wear my heart on my sleeve and have trouble keeping it together. I know this and I am trying to be strong. I am trying to support my mom but yesterday was really scary. It was scary because she was scared. It was scary because she was weak when usually nothing phases her.

You know what I know? That no matter how old I am and no matter that I am a mother myself, I will always be my mother's little girl.

Wish my mom strength.

Cancer Treatment Day 1

The past few days have been crazy busy. My "little" sister is here from the UK (yes, I know the woman is well into her 30's but she will always be "little" to me) and we had a big party for her and her growing belly on Saturday. There was tons of food and tons of fun but I have decided that I much prefer to attend parties than host them. I barely got a chance to have a full conversation with anyone.

Then, on Sunday, my mom arrived to settle in at our house for her month of treatment for melanoma. On Monday she, my dad, and my sister were up bright and early for her 8:30am appointment. Based on what we had read I expected them home by about noon. They didn't arrive here until 5pm! The day was full of confusion and disorganization so an already tense day turned even more stressful.

The funny thing is my mom and my sister were totally calm about it (my dad was another story). Both of them are nurses and both of them have spent a better part of their careers helping hospitals develop procedures and processes to prevent this type of thing from happening. So, instead of complaining, my mom was already planning her recommendation for helping the hospital improve its processes! That's my mom for you. What's the point of complaining if you can actually do something about it.

So far, although tired, she seems well. She amazes me with her positive attitude and outlook on things. This, I believe, will play a huge role in her recovery. As she says, "it is what it is so what's the point of dwelling on it".

Be Brave

Wow. This was sent to me yesterday by some folks at Pfizer. They wanted my opinion. Well, my hysterical tears and warm and fuzzy feeling was difficult to describe to them but, in simple terms, it really touched me. I mentioned to you earlier this week that my mom was diagnosed with Melanoma and I have been reading a lot about how outlook and attitude play a huge role in treatment and recovery so this fit right in. It is part of Pfizer's www.morethanmedication.ca message. Grab your hanky and check it out: