I’m Thankful For

I decided that today I’d write about all of the things I’m thankful for.  At first, I was feeling pretty pessimistic and morose.  Why should I be thankful right now?  My body has betrayed me, I’m going through hell and being tortured, I’m missing out on life, social and work, as I’m going through treatment, I’m watching my family suffer as they watch me suffer…It all really sucks right now.  But if I look past all of these truths and really think about all of the things I still have and have gained in the process, I have a pretty hefty list of things to be thankful for.  I will do my best to list them all, but if I forget something big or someone who is so special to me, be patient.  It’s the chemo brain, I promise.  Does that excuse hold up in court?

1. I am thankful for myself, that I have the strength, power and knowledge to know my body and to do a self breast exam.  If I didn’t do this, and my cancer was caught months or years from now, I think we’d be looking at a very different prognosis.
2. I am thankful for myself again, for have the strength to face my fears of needles, blood, invasion of my body, surgery, sickness and the unknown in order to get myself the best treatment possible.
3. I am thankful that I am learning to give up control and depend on others.  This is a biggie for me.
4. I am thankful for my incredible medical team that cares for me and fights for me.  I don’t use the word team, lightly.  This is the staff at the NYU Cancer Center.  Dr. Guth, my breast surgeon, Dr. Jhevari, my oncologist, Heidi, Dr. Jhevari’s assistant, nurse practitioner and family friend who, I feel, treats me just a little more special because of our connection, Nina, who gives me my infusions for each chemo treatment and couldn’t be more warm, caring and wonderful while making sure to educate me on the process, no matter how many times it takes.  My medical team is growing, so I will thank my radiation oncologist, my genetic counselor and my plastic surgeon since they will all be a bigger part of my life very soon.
5. I am thankful that, so far, my side effects have not been too terrible.  I’m especially thankful that I have not been vomiting every day and that I can function as normal most days as a result.
6. I’m thankful for the anti-nausea medications that I’m given pre-chemo and all the pills I have in my arsenal that are protecting me should nausea start.  10 years ago, these did not exist and chemo meant spending your days over the toilet.
7. I’m thankful for the technology that confirmed that I did not in fact have cancer in both breasts, which saved me from a double mastectomy and other unnecessary tests.
8. I’m thankful for my Aunt Vickie who has been with me since the beginning of all of this and multiple appointments.  She has been my rock.  She made sure I got the best doctors, took notes at every appointment, asked great questions and advocated for me.  She calls me almost every day to make sure I am ok and helps me keep sane.
9. I’m thankful for my friends who support me with love, meals and occasional babysitting.  They are not overbearing and give me my space to deal in the ways that I need to but also check in when they can, making sure I’m not sinking into an abyss.
10. I’m thankful to my mom and dad who support me with love and information.  But mostly for being amazing grandparents and taking on a great deal of the rearing of Oliver.  I don’t know what we’d do without them here.  How would I get all of this done with a small child?  And for Oliver, it’s a treat to be with them all the time.  I think he gets extra cookies (don’t deny it Mom and Dad!!!!!)
11. I’m thankful for Oliver who reminds me what discovery is and pure joy.  Every day I get to see and experience things from his point of view and it is so pure and untainted.  And while raising a toddler at the most challenging part of my life is one of the craziest experiences I’ve had, we mostly laugh, cuddle, kiss and learn together.  I think without him, I’d fall into the pits of despair.
12. I’m thankful for my husband.  I don’t think he lets me know how hard this has all been on him.  He’s not good and sharing or showing that.  But I know he worries all the time.  He calls me like, 8 times a day.  But he cooks for me, gets me hydrating drinks, and has taken on most of the cleaning and laundry duties.  And he showers me with patience and love.  He’s the best husband ever.
13. I’m thankful for the rest of my family, in-laws and extended family who write and call with encouraging words all of the time.  Support is the key to survival when going through a terrible illness.
14. I’m thankful for the new friends I’ve made because we have cancer in common.  Jessica and Kimberly, thank you for showing me what bravery is.  I have learned so much by listening and learning from you.  I know that you also get angry, depressed and so much more but you have also taught me to embrace that.  I can’t wait until we can meet in person and when we can declare that we are cancer free.
15. I’m thankful for Suzanne and Hair We Share for so generously donating my wonderful wig.  You are doing such an incredible service for those suffering from hair loss.  I can’t wait to see your organization grow and support you along the way.
16. I’m thankful for The Livestrong Foundations and The Sher Institute for Fertility that helped me in the most loving and kind way harvest and freeze my eggs, especially at a time of fear, depression and confusion.  I could never have gotten through that portion of my treatment without you.  You are angels.
17. I’m thankful that I still get to do the work I love and work for organizations that have been patient with me as I learn to live with this disease.
18. I’m thankful for The West Wing on Netflix.
19. I’m thankful for butternut squash soup and coconut water.
20. I’m thankful for good under eye concealer.
21. I’m thankful that I get to write this blog and, hopefully have a positive impact on others.

Happy Thanksgiving, everyone.  I know that as we sit down tonight, we are all experiencing something difficult; the loss of a loved one, financial difficulties, illnesses, defeats…it all counts.  But despite these things, we also have so many things to be thankful for.  Take time to really think of them.  It’s so meaningful.  Enjoy all of the treats today brings.

Summary Of Side Effects From My Third Chemo Treatment

*Fair warning to all.  This post could be considered TMI.  If you are a little squeamish or just don’t want to know me that well, I’d suggest you stop reading here  .Just because I am experiencing these side effects this week, does not mean that others undergoing the same chemo treatment will so, fear not.  The next post will be much more pleasant, I promise.*

When I started this blog, one of the things I promised myself was that no matter what was happening with me, I would be honest.  That meant sharing the good, the bad and the ugly of living with cancer.  Unfortunately, this post leans more toward the bad and the ugly.  I think that it is important to share this so those of us who are going through treatment or will go through it in the future do not feel like they are alone in the experience.  But knowledge is power so here it goes.

Continuing Side Effects

1. Hair Loss:  More hair is falling out on my head and over my body.  I posted earlier this week about the loss of nose hair which is annoying, more than you would think.  I’m noticing that my eyebrows and eyelashes are thinning, one of the things I was hoping to avoid but it looks like I am going to lose them.  Hopefully they won’t all go.
2. Fatigue:  I do not have much more to say on this subject except that I still get tired but this time the fatigue began a day earlier.  I was taken off one dosage of my steroid pills so I feel like I didn’t crash as hard and the fatigue was more manageable.
3. Loss of Appetite:  This usually coincides with the fatigue.  I still eat and get a bit hungry but I don’t eat as much and get turned off by a lot of foods.  I mostly want carbs with some protein.  I also find it hard to hydrate during this time.  I just don’t want to drink.
4. Bad Taste In Mouth:  Some people report getting a metallic taste in their mouth.  I don’t think that is how I would necessarily describe it.  For me the taste is more sour and acidic.  This has been lasting longer than usual
5. Spots on Hands:  Last time I reported getting brown spots on my left hand.  I have gotten more on that hand, some on my right hand, little ones on my face and a couple on the bottom of my feet.  I was nervous that this was a sign of a bigger problem but I’ve been told that it is a temporary result of the Adriamycin.
6. Chemo Brain:  Holy moly!  I wish I had been warned more about this side effect.  I think it is the one I am most self-conscious of.  I’m forgetful and have trouble remembering certain words.  You know when you have a word on the tip of your tongue?  Well, that happens a lot.  More on this in my next post.

New Side Effects

1. Light Headedness:  I have noticed that when I stand up from a seated position that I’m getting really light headed, like when you get up too fast.  I’ve been trying to slow down but mostly forget.  So far I haven’t passed out.
2. Getting Winded/Weakness:  This probably ties into fatigue.  This side effect has subsided but there were days this week where I would be pushing Oliver in the stroller and the activity had me winded and feeling very weak and tuckered out.
3. Constipation:  I’m sure this has a lot to do with not hydrating enough and loss of appetite as well as being a common side effect.  The constipation hasn’t been that bad, I’ve been going every day but my bowel movements were not typical for several days.
4. Hemorrhoids:  Probably because of the constipation and I’ve been reading that having low blood cell counts could contribute to this side effect.  I’ve never had hemorrhoids before (I managed to avoid them during pregnancy) but, holy moly…at the risk of being too cliche, they really are a pain in the ass!!!!!!  I hope it resolves itself very, very soon.
5. Diarrhea:  I’ve been taking Colace to help me with the constipation and hemorrhoids and now I have pretty bad diarrhea.  This could also be caused the the chemo.  I’m drinking a ton of water so I don’t think hydration is an issue right now.
6. Boil?:  I thought this might just be a clogged pore or strange pimple on my side but it grew and grew and was very uncomfortable.  I have no idea what it is but it’s grossing me out.
7. Painful Dry Skin On My Feet:  I woke up one morning and the bottoms of my feet were really sore, like when you have been standing all day in uncomfortable shoes.  It was mostly on my heels and the balls of my feet.  The next day I noticed that those areas got very dry.  Foot cream helped a lot.
8. Stiffness On The Inside Flesh of My Cheeks:   This is mostly by my jaw but is not my jaw.  It is the flesh of my cheek by my jaw.  I don’t know why this happens.
9. Discoloration of My Tongue:  I’ve noticed that my tongue looks whiter.  Dehydration?  Chemo?
10. Insomnia:  Even on my worst days I have been a pretty good sleeper.  This week I have either had trouble sleeping or have been sleeping uncomfortably.  I could be because of some of my physical discomfort but I also think it’s the stress of all of these side effects.  Insomnia does not help with the fatigue side effect.
11. Dark Circles Underneath My Eyes:  I noticed that the circles under my eyes are getting darker.  I got a really good concealer.  Bobbi Brown.  No cheap drugstore concealer for me.

This is all I can think of right now.  I’ve been a little cocky, I think, since so far, by chemo standards I’ve had it pretty easy.  I knew it couldn’t last.  It’s starting to get harder.  I only have one more treatment of AC left before I switch to the Taxol.  I’m nervous about what the next two weeks will bring.  I just have to remember that this all is temporary and I can make it through.  Here’s hoping!

I’m Losing My….

I bet you think I’m going to say, “mind,” right?  Well, believe it or not, I’m somehow maintaining my sanity.  But I’m losing something else.  My nose hair.

Now, why is that a big deal, you ask?  Why do we need nose hair?  According to Keratin.com, nose hair, “protects the epidermal layer of your skin from small abrasions and sunlight. Nasal hair also has a more specialized function, creating a shield between your body’s internal organs and the pollutants of the outside world. When you inhale, you can potentially take in small particles along with oxygen, but nose hairs filter away most debris.”  I’m more susceptible to those little but tough winter buggies that are going around.  Not a great thing when you are immuno-suppressed.

About five to six weeks ago I had a cold but my nose has never really stopped running.  And now with this arctic NYC weather, my nose is like a faucet.  I can barely walk fifty feet without having to stop and blow my nose.  Apparently, nose hairs also prevent your boogies from pouring out like a beer from a tap.  But, I’m losing them, so……

And now, here’s the kicker.  I’m losing most of my nose hairs EXCEPT……the little ones that can stick out in the front.  For.  Real.

So fuck you again, cancer.  FUCK! YOU!

Mommy Mondays (On Tuesday): When Your Patience Runs Thin

Hi everyone!  I’m back from the depths of chemo #3 and I’ve made it out without too much damage.  No nausea!!  No mouth sores.  Just major fatigue, some appetite loss and weakness.

My oncologist took me off one more steroid pill this time around since I haven’t been experiencing any nausea with the hopes that my fatigue wouldn’t come with as much of a crash as in the past.  I’m glad to say it worked but my fatigue started earlier than before and I was unprepared.

The last two treatments I started getting tired on the Saturday, usually after naps in the late afternoon.  This time I got really lethargic on Friday night.  I was completely unprepared for this and even took Oliver out for his favorite activity, riding the MTA.  Of course we got stuck in awful rush hour traffic and what was supposed to be a quick 45 minute ride turned into a harrowing hour and a half.  By the time we were done, I was wiped and Oliver was moody.  Really moody.  I still had to get dinner on the table, bathe him and put him to bed.

Getting Oliver home was a nightmare.  It was cold, I was exhausted and he refused to walk in the direction of home.  He just wanted to be outside and play, cold and darkness be damned!  The five minute walk home turned into a twenty minute ordeal of coaxing, begging, chastising, threatening…you name it.  But Oliver was resolute in his objective to jump, run, pick up leaves and sit on the ground in protest.

Then, when we got home and I got dinner on the table, he refused to eat it.  He has a thing with “slurping” right now.  He loves to slurp and thinks it’s the funniest thing ever.  What he doesn’t understand is that you can really only slurp a soup or liquid and not things like potatoes or peas.  So he would try to slurp his potatoes or peas and almost choke.  So I took away his food to get him to stop.  He bit me.  And so started our Friday evening battle which ended in five time outs and me yelling at him.

I yelled at him.  Sometimes children need to be yelled at, but Oliver is 23 months old and yelling is not the best tactic with a child that age.  But I was tired.  So, so tired and my patience had worn thin and I wasn’t being rational.  So I yelled and gave punishments until Ken came home and I gave up and passed Oliver on for him to deal with…which he did.

When you are as tired as you are when your experiencing the side effects from chemo, a little grumpiness is not unreasonable.  But sometimes I’m alone with Oliver and feel like shit but he doesn’t know or care.  And he shouldn’t.  But I’m still grumpy and I still want to be taken care of and that’s not the way this is going to work.  I need to find a way to not let the grump monster take over when I’m feeling off.  I know I need to forgive myself and be patient and understanding of my own experience but first, and most importantly, I need to be a great mom.

Chemo Perks!

When we hear the word “chemotherapy” most of us think of terrible nausea, vomiting, hair loss. weight loss, looking and feeling like hell and being hooked up to machines that dispense poison into your body.  Some or all of these are true.  With all of the terrible side effects, I have found some perks.  They don’t necessarily make up of the the tough stuff but we have to take the positive where we can get it.

1)  When it’s foggy, misty, humid or rainy like it was today, I don’t have a bad hair day!!!!

2) I don’t have shave my underarms or legs which saves time in the shower which is good for the environment!

3) I normally have oily skin but lately it’s dryer.  This is good because my makeup stays put rather than melting off by the middle of the day!

photo from Bobbi Brown

4) I also normally have oily eyelids and by the middle of the day, even with eye primer my eye makeup is globbed up in the crease of my eye.  Now my eye makeup stays put.

Photo taken from Loreal

These are just superficial things.  I’d rather be cancer free than have any of the above but I’ll take my superficial perks.  I’ll take what I can get.  If you are going through treatment or have gone through treatment, what perks did you experience?

Summary of Side Effects From My Second Chemo Treatment

This post is coming a bit late.  Sorry about that.  Life seems to have gotten in the way a little bit (so have West Wing reruns on Netflix).  In ways this week was better and worse than the first.

Here is how my second chemo treatment went.  Since I crashed really hard after the first treatment and got really tired, my oncologist took me off some of my steroids to ease the crash into fatigue.  I’m not sure that helped too much.  I didn’t experience any nausea again, which is fantastic.  I really hope that keeps up and I’m one of the lucky ones.  I also had more of an appetite this time around and was able to eat even on my worst day.  I found hydrating to be harder though.  I just don’t want to drink and water is not as appetizing due to the bad taste in my mouth.  I need to be better about this no matter what.  Hydrating is probably one the most important things I can do and I have not been diligent enough this time around.

My last infusion was two Wednesdays ago and I felt good the next day and Friday (Halloween) although I tuckered out really easily after trick or treating.  By Saturday I was getting tired but I was still functional and was able to push through some of the fatigue.  I even went out to dinner with my family.  This was very exciting for me because the next day Ken was running the marathon and I thought I would be able to go and cheer him on.  I even had passes to the bleacher seats by the finish line.

My body had other plans.  On Sunday I woke up weak, extremely fatigued and feeling overall awful.  I tried to shower and get dressed but found even standing was difficult to do.  Hell, laying down was difficult.  I can’t even begin to describe the type of tired I felt.  It’s indescribable and all consuming.  Needless to say, I never made it to the marathon and just stayed on the couch all day.

By Monday, I was feeling a bit better.  I was still very tired but well enough to go with Ken and Oliver to the zoo.  We kept the pace slow which was perfect.  Then by Tuesday I started feeling more like myself again.  However, I have felt tired all week.  That could be due to daylight savings but I’m not sure.

One strange thing I have noticed is that I’m starting to get brown spots on the palm of my left hand.  Strange, right?  I don’t know what that is about and hope it is not indicative of a bigger problem.  We shall see.

I have lost more hair.  Actually, it has been falling out really slowly and I have been very pissed off about that.  I thought that maybe I was a rare exception and that maybe it wouldn’t all fall out.  But this morning, a huge patch at the front of my head came out in the shower.  So now the front of my head is bald but the back is still thick with a few patches.  I look like a sick dog.  I just wish it would all fall out already.  If it’s going to go, I want it all to go.  It’s itchy and irritating this way.

Finally, I kind of got my period.  Sorta, maybe.  Before chemo I was just finally getting my period back after weaning from breastfeeding but chemo suppresses a female’s period.  Yesterday I started staining and today there’s barely anything.  For many women this would be a perk.  But I’m a freak who likes getting her period because it tells me that everything is working as it should.  Losing my period is a huge loss for me and something that is hard to deal with.  Nothing I can do about that.

My third infusion is tomorrow.  I’m really dreading it because the fatigue is cumulative and it’s been really tough already.  I can’t imagine it any worse.  But after tomorrow’s treatment, I only have one more to go of this combination before I move on to the Taxol.  Send me positive energy filled with caffeine.  I’m going to need it.

Welcome My New Wig!

I mentioned a few weeks ago, during my whole wig exploration drama that I was fortunate enough to be chosen to receive a wig from the organization, Hair We Share.  Hair We Share is a brand new not-for-profit whose mission is “Making a difference in the lives of those suffering from hair loss due to medical conditions and treatment.  Relying solely on donations, in the form of real-hair ponytails and monetary contributions.  Providing quality hair solutions.  Committed to uplifting lives.”  Last week my wig arrived and earlier this week I took it to get it styled.

My mom’s hair stylist, Clyde from The Drawing Room very generously offered to cut my wig for free.  He has done it before for previous clients and is experienced at doing it for women suffering with hair loss, Orthodox Jewish women and for photo shoots.  Before I go on, I’d like to thank Clyde and the staff at The Drawing Room for the kindness and generosity during this time and would highly recommend them to anyone looking for a great experience and super hip cut.

My wig was made specifically for me from real donated hair.  Suzanne Chimera of Hair We Share had me take measurements of my head and looked at several photos of my on facebook to gauge color and shape.  My wig is hand made, wefted.  While it didn’t come styled, it was long enough that I could take it to a salon and have it custom cut so that it would suit my face and my style.

I’m not going to lie.  When I first got the wig I was a little nervous.  There was a lot of hair and it was pretty wild.  I wasn’t sure what could be done with it.  But put it in the hands of a professional, you have magic.

After putting it on, Clyde looked at the shape and then began to blow dry it and flatten it a bit with a flattening iron.  This is what it looked like flattened but uncut.

Flattened but uncut.

We had a long talk about the styling possibilities for the wig.  I let him know that I usually wear an angled bob at about chin length.  He dissuaded me from that choice for several reasons: 1) the texture of the hair, 2) how the hair was falling, 3) the fact that at that length we might be able to see the construction of the wig and, 4) the “no going back” factor.

He recommended, while different than my normal cuts, we keep some of the length.  This will allow for natural movement of the wig and the opportunity to make changes down the line if I so desired.  I trusted his expertise and let him do his thing.  Here is the process.

Cut with a little style

First he cut off some of the length and began to take some of the thickness out.  He started with scissors and then began using a buzzer as well.

Buzz in some layers and add a side-swept bang

He continued to use the buzzer to create a shape around the face and to make the ends a bit edgy.  He also started to cut some side-swept bangs.

Let’s make that full on bangs.

As he added more style, we noticed that the bangs kept falling into my face.  While I wanted to have the bangs off to the side, we realized that this might not be the best choice.  For the purposes of comfort and ease, we chose a full bang.  He added in more layering and style.

The final result

The final result is this gorgeous cut.  I love the cut so much, I’d even consider getting it when my hair goes back.

The wig I got is wonderful.  Clyde, the hairstylist said that he has seen many wigs and that the quality and workmanship are superb.  I’m so lucky to have received it.

What I like about this wig is that the color is very similar to my own and no grays!!!!!  The hair is great quality and soft.  And while I was nervous at first about all the hair on it, it actually made for a great custom cut, even if it’s slightly different than I normally wear.

I’m not going to lie, knowing that it is a wig and that the texture of the hair is slightly different than my own and it’s a bit thicker than my normal hair, I am getting used to the way it looks on me.  Part of me hoped that it could look exactly like my own hair but part of the whole experience of cancer is embracing change.  And this change is one of the positive ones.  I get to rock a cool new do and I get thicker hair!  Most women would kill for that!!!

And one cool thing about this wig is that the left side does a little flip while the right side stays flatter.  My regular hair does that so that is kind of serendipitous.

Thank you again to Suzanne Chimera and Hair We Share for donating this wonderful wig.  If you are interested in donating hair or money, please click on the link at the top of this post to learn more.  Or if you are interested in receiving a wig, click on the same link and follow the instructions for the application.

Remembering Brittany Maynard

A few weeks ago I wrote a blog post titled, Putting Things In Perspective about a young woman dying from an aggressive form of brain cancer.  After being given only six months to live with news of an agonizing death, she and her family moved to Oregon because of their Death With Dignity laws.  She decided that rather than die the certain painful death that is characteristic of her type of brain cancer, that she would end her life on her own terms and die peacefully with her family nearby.

On November 1st, Brittany Maynard did indeed end her life, after experiencing headaches and seizures that were progressively getting worse.  No matter how you feel about euthanasia, I think we can all agree that we are relieved that Brittany is no longer suffering.

I want to remember Brittany and thank her and her family for being an advocate for Dying With Dignity and being a public face at a time of extreme stress and pain.  You can read more about Brittany and he choice to end her life in this NY Times article.  

To Brittany’s family and friends, I am deeply sorry for your loss and wish you healing and peace in this very difficult time.  You are all in my thoughts.

Photo taken from nytimes.com

Mommy Mondays (on Wednesday): Talking About Hair Loss With A Toddler

Image taken from Amazon.com

In the last few months, Oliver has witnessed and experienced a lot of changes in our family.  He has witnessed my emotional ups and downs when dealing with diagnosis, he’s seen my body changed by a mastectomy and now we have been dealing with my hair loss.  Oliver is an intuitive and curious child and very sensitive to changes, especially when it comes to his Mommy.  I have been very concerned and scared about what would happen when I had to shave my head and how he would react to this drastic change.

Every day, Oliver talks about “Mommy’s big boo-boo.”  It’s a part of his consciousness and his concerns.  He worries about it and how I feel.  To make him feel better, we have a ritual that lets him know that he is and has been a part of my healing.  Every time he points to my breast and says, “Mommy (or Amma) big boo-boo?” we say:

Me: Yes, mommy has a big boo-boo but it feels better because Oliver gave mommy a…

Oliver: Kiss!

Me:  Because Oliver made…

Oliver:  Nice!

Me:  And because Oliver was…

Oliver:  Gentle!

It’s important to me that Oliver knows that because of his empathy and compassion, I have been able to heal.  It might be one of the few silver linings of this whole situation.  He knows that if he’s loving and kind he can make people feel better.  It’s why he goes up to new children he meets and immediately begins making nice to them or giving them a hug.  He is rarely aggressive and is a gentle soul.

My biggest fear with my hair loss was what Oliver’s reaction was going to be.  In my mind, in my worst nightmares, he would see my bald head and scream and run away from me, afraid of the strange woman in front of him that used to look like his mother.  I was afraid it would break our bond, break our trust.  With so many changes, could he trust me?  Some say it’s a blessing that this is happening when he is so young because he can’t possibly understand the seriousness of what is happening.  Yes, but, I’m afraid of the damage being done because he is so young and can’t possibly comprehend what is happening but can feel the implications.

I thought long and hard about how to handle the hair loss and after weeks and weeks of thinking, finally came to a decision.  I decided to be open and honest with him about what was happening but in a very basic and simple way.

In our family, we are always honest.  When leaving for work or going out on a (rare) date, we never sneak out of the door.  We always say goodbye even if it upsets Oliver at first.  We think it’s important for him to know that sometimes we have to leave but that we always come back.  We think it builds mutual trust and respect whereas sneaking out would create confusion and lack of security.  I decided to take this same approach with discussing my hair loss; a chance to build mutual trust and respect.

The day after I shaved my head, Oliver came home from a stay with Grandma and Grandpa.  We sat him down on the couch but he was too wiggly.  I said, “Mommy wants to talk to you,” but he just wanted to play with his toys.  I tried again later, this time bringing him to our rocking chair where we snuggle and read books.  I got him a little calmer and asked, “Where is Oliver’s hair?”  He pointed to his head.  “Where is Grandma’s hair?”  He pointed to Grandma’s hair.  (Ken was at work this day, by the way)  “Mommy had to say bye-bye hair.  Mommy has no more hair.”  At this point he got wiggly and agitated and slipped off my lap.  I didn’t try again that day.

The next day Ken was home and in the morning, when Oliver is a little more calm, we pulled him into bed with us and we tried again.  “Where is Oliver’s hair?”  He pointed to his head.  “Where is Daddy’s hair?”  He pointed to Ken’s hair.  “Mommy had to say bye-bye hair.  Mommy has no more hair.  Do you want to see?”  He grunted, which means yes.  I lifted just a small part of my hat away to reveal my buzzed hair just above my ear.  This definitely upset him a bit because he yelled at me the same way he yells when he’s angry or frustrated.  He sticks his tongue out a little bit and does a short, high pitched scream.  We stayed calm and said, “It’s ok.  It doesn’t hurt.  It’s not a boo-boo.  But Mommy had to say bye-bye hair.  Do you want to feel it?”  He grunted yes, touched it and then scooted to leave the bed.  He was done.  That was the last time we discussed it that day.

The next day we did the same thing over again, snuggled him and went through the same routine.  This time, after we asked Oliver to show us his hair and Ken’s hair, he looked at me and said, “Mommy no more hair.”  He had heard and understood.  This time we showed him my whole head.  He looked me over for a few seconds, was obviously curious and confused but touched it.  Then he asked me to put my hat back on.  I did as requested.

Since then, each day Oliver seems to be getting less and less upset with the change.  He sees me with my hat off and is asking me less and less to put it back on.  It’s becoming normal, at least a bit.

I don’t know if the way I handled this situation is the right way to do it.  There is literally NOTHING, no information out there on how to deal with toddlers and the effects of cancer.  There is this short informational page on the subject but there is far more information on talking to older children.  There are even books.  I get that, toddlers really are too young to truly understand cancer.  But toddlers are also little sponges and very observant.  They see and hear everything and I believe take in more than is being acknowledged.  But there are no resources, no help.  I feel like I am inventing the wheel.

I found one book on Amazon called Nowhere Hair.  From the little sample, it seemed simple and a really great way to talk to Oliver more about hair loss.  I just got the book in the mail and feel that it is probably too mature for him but it would be great for a child in pre-school.  I still might try it.

I’m curious if anyone out there knows more about the subject of dealing with disease and toddler development.  Does anyone have any connections to child psychologists or anyone in the cognitive sciences?  Please share any of your experiences or resources here for others.

Refusing To Miss Out

When I was given my schedule for chemotherapy treatment, I noticed that side effects would coincide with two major events this week: Halloween and the NYC Marathon, which my husband is running.  I am not someone who likes to miss out on things so when I found out about this I was pretty devastated.  After my last treatment, I was really tired as a result of my chemo and could barely move on Saturday and Sunday.  So my oncologist slightly adjusted my drugs since I didn’t experience any nausea.  To prevent nausea right away, I take steroids for 2 days after my infusion.  She has lowered the dosage so that my crash on Saturday and Sunday would not be as intense.

I’m am glad to say that I was able to go trick or treating last night with my son, husband and some local friends.  It took a lot of effort to get Oliver’s costume on but once we got outside and he realized that everyone was giving him candy, Oliver really got into the Halloween spirit.  Every house we passed he would say, “more treat? more treat?”  I think he’s hooked.  We stayed out for about an hour and a half.  I think Oliver could have kept going but I started to feel a little tired and we decided not to push it.  I came home, laid on the couch to rest and had a bowl of yummy soup for dinner.

Today, I woke up feeling refreshed but at 10am am already starting to feel a bit tired.  I’m going to take it easy today because I’m really hoping I can support my husband tomorrow as he runs his second marathon.  I know how much it will mean to him for me to show up, even if I can’t make it to 4 stops like last year.  I want to do something but am definitely nervous of doing too much and pushing myself too far.

So we shall see.  Step by step.  Day by day.

*Ignore my typos.  I have chemo brain.*