Waiting for Savasana


3 Comments

Tamoxifen Blues

I am back to feeling pretty crummy most of the time.  I had stopped Tamoxifen before my last surgery and felt better almost immediately.  I started it back again at the end of May.  And now it is August and I have taken that white pill every night for two and a half months and I am back to feeling awful.

The first week I was ok.  Then things started to hurt.  Then I started gradually to wheeze again.  And then there was a bit of malaise which turned into fatigue which turned into exhaustion.

I feel not great all the time.  I feel like you feel when you are about to get the flu.  Kind of achey and run down.  Only the flu never comes and I just keep feeling lousy.

I am also wheezing again.  I have difficulty doing anything remotely strenuous.  It’s a challenge to just get off the couch without being short of breath.

I am also quite un-Tiggery most days.  I’m just back to being an Eeyore.

And I am supposed to do this for ten years.

I don’t think I’m going to be able to do that.

And I know there are people who will say that having a recurrence is much worse than Tamoxifen side effects and I agree.  To a point.

There are plenty of people who take Tamoxifen for the prescribed years who still end up with a recurrence.  It’s not like Tamoxifen is the magic answer.  All Tamoxifen does is lower my chances from like a 20% chance of a recurrence to a 15% chance.

It doesn’t work for a lot of people.

So I’m taking this drug that increases my chances of endometrial and ovarian cancer, it increases my risk of blood clots and it makes me feel like a mildly stinky pile of poo most of the time just to cut down my very likely chance of recurrence by a mere 5-8% points.

I don’t know if it’s worth it.

What would you do?  Would you spend whatever time you have left taking a drug that *might* prolong your life and/or might give you cancer in other places and at the same time has some really gnarly side effects like the ones mentioned above?

Or would you rather spend your respite feeling good?  Feeling human.

Because guess what they give you if your breast cancer recurs?

Anti-hormonals like…you guessed it Tamoxifen.

Right now.  I have no energy.  I have shortness of breath and I ache everywhere.  I don’t feel like I am really living any kind of life.

And I keep going back to the fact that all that time when I had cancer and didn’t know it?  I was running marathons and half marathons, I was working a job that required a lot of energy and I was actively raising my boys.  I felt great.

I felt great while I had cancer.  And now I am doomed to ten years of feeling like I have the flu?  What’s the freaking point?

If they were able to say to me, “If you take this drug for the prescribed time, your cancer will not come back. 100%”  I would be more apt to keep taking it.  But nobody can tell me that.  Nobody.

It’s all, well MAYBE it will work…it works for some people.

And I keep taking it because I am scared.  Because I am hoping that it will do it’s job and keep the cancer away.

But what is the point of being here if I am just a lump on the couch?

I am tired of feeling badly.  I am tired of this.  I did what I was told.  Surgery, chemo, radiation and anti-hormonals.  I have not felt good in a year and a half.  I am tired of being a patient.  I am tired of feeling horrible.  I would like to be able to breathe again.

But I don’t want to die.  And I really don’t want to die the horrible death that is death by breast cancer.

Although, I probably will anyway regardless of what I do.

And I can talk myself into circles of this for days.  And I keep taking the meds.  Even though they make me feel absolutely miserable.

The fear doesn’t end.

I don’t know what I’m going to do.

Advertisement


Leave a comment

Out In the Garden

I am not the world’s greatest gardener.  My thumb is brown.  Two summers ago, I gave up and planted nothing.  Last summer, my younger son planted the garden with his grandma and it flourished all summer.  They planted tomatoes.  Just tomatoes.  And it was glorious.

My son got kind of tired of it though.  There were just so many tomatoes to pick.

“I swear Mom, I am going to rip those plants out by the roots!” he said by the time September came and there were still tomatoes to pick.

 

This year, we planted again.  Tomatoes, jalapeno, cucumbers, lettuce, sweet peas.

It was looking pretty good early on:

IMG_1660

I was optimistic.  We got a few cucumbers…

IMG_1659

and tomatoes…

IMG_1661

And then the cucumbers fizzled.  I go four of them which is four more than I’ve ever gotten so I am still marking it as a success.

The lettuce was ok.  Younger son would just go out and eat it straight from the garden so it didn’t last long.

The sweetpeas I planted never grew.

We got a lot of tomatoes again.  But not as many as last year.  Oh well.

The jalapeno grew but never produced any peppers.  What’s the deal with that?  I fertilized and watered and composted and nothing.  It’s frustrating.

But we have lots of tomatoes.

Younger son (I need to come up with a name for him on this blog) has discovered the culinary ambrosia that is clam chowder.  I decided to make him some in my crockpot as a special treat.

But here’s the thing, 3 out of 4 of us in this house are avoiding dairy.  My husband has developed a definite allergy, my older son and I have a definite intolerance.

Dairy free clam chowder?  Will that even work?

Well, yes, mostly.  I started with some frozen chicken broth I made about a month ago.  then I added celery, green onion and potatoes that arrived in our CSA box.

IMG_1623

 

Then I decided to go really crazy and added some tomatoes from the garden.

IMG_1625

I used two cans of whole clams from Trader Joes and let that all steep for a couple hours.

Then i added a can of coconut milk ad while digging through my pantry, I found a jar of Trader Joe’s green curry simmer sauce so I threw that in too and let it cook in the crock pot a few more hours.

I ended up not eating it the day I made it and reheated it the next night for dinner.

IMG_1629

It turned out pretty nicely.

IMG_1630

My older son said it was sweet and spicy.  My younger son was disappointed because it was not a traditional chowder. But they liked it.  My husband wouldn’t eat it because apparently, he doesn’t like clams.  Married for 14 years, never knew that.

It’s difficult when you have spent a lifetime consuming dairy, to suddenly be without.  Goat cheese (we only avoid cow milk) pizza is not the same as good old mozzarella.  We’ve tried cheeseless pizza but it can be a bit depressing.  Plus pizza with no cheese is messy.  The toppings won’t stay put without the cheese to glue them down!

Don’t even get me started on how much I miss real cheese!

I liked the soup.  It was not a true clam chowder but it was still good and very flavorful.  I think sometimes you just have to play pretend when you are cutting out foods from your diet.

It was better than a poke in the eye with a sharp stick, regardless.

I would like to know what it is about certain people and their ability of inability to garden.  I try but nothing grows well for me, but my child can grow anything!  I think from now on, I am putting him in charge of the garden.


1 Comment

I was told to post…

Hey!  Long time no talk!  Hope all is well.

Me?  Huh?  How am I doing?

Mostly ok.  Mostly.

What’s been going on?

Well, we’ve been enjoying the summer.  The boys have had a couple of camps.  We’ve been swimming a lot.  We’ve watched some movies.  The boys have played a great deal of Minecraft.  And I let them.  Although I have figured out a trick.  If I want them to be outside, i don’t give them a choice. For instance, if I want to go to the pool, I just pack up the swim bag and put it in the car and when I pick them up from wherever they are, i just drive them to the pool.  It’s good to have choices sometimes but when you’d rather sit in front of a computer for 48 hours with no sunlight, Mom has to step in.

Oh and this happened:

IMG_1484

Isn’t he a doll?

His name is Kevin.  Originally, his name was Slater but no one liked that name.  Then for about 5 minutes, we called him Shadow but that didn’t fit.  And then the boys said let’s call him Kevin.  And my husband said something about not wanting to name the cat after one of my ex boy friends.  And then we sent a picture to my sister who immediately responded with, “You should name him Kevin.” Which was weird because we hadn’t told her we were considering the name.  And the next thing we knew, we were all calling him Kevin.  Who cares about ex boyfriends from twenty years ago anyway?!  Am I right?  Ex boyfriends don’t get to monopolize a name!

KEVIN!!!!

We’re taking it back!

He was so itty bitty back then.  He was just 6 weeks old.  Now he is 4 months old and he is still as adorable and fun as ever.

IMG_1638

I missed owning a cat.

The dog was not happy about him at first but now she is somewhat fond of him and they play together.  Kevin kind of took over which was unexpected but really kind of funny.

What else?

We went to an awesome camp for children with limb differences called Camp Winning Hands.  I didn’t get to go last year because of being sick and bald and nauseated and everything.  The boys came back from it last summer without much to say so I went in this summer with no expectations but it was awesome!  There was good food, excellent entertainment, fun activities for both of my boys and lots of great people to meet.  The camp was staffed with professional people from the medical field (not the prosthetic field which is good) and the volunteers were all young adults and adults with limb differences themselves.

Why were we there?  Oh!  If you didn’t know, my youngest son was born with a limb difference.  He was born missing his left hand and part of his left forearm.  He also was born with open wounds on his face and on his leg.  It was a very scary time for our family.  We were told that it was unsure because of the leg wound, if he would ever walk.

But he walked and can do everything, every other kid does.  He even taught himself how to do monkey bars!

I once had a blog when he was little that talked about our life together.  It was actually kind of popular for a bit.  But blogging is weird.  People can over-step boundaries and think they know you when they don’t.  And people who know you can get weird about blogging.  It got weird.  Eventually, I got tired of feeling strange blogging about my kids so I shut it down.  But I missed it.

And there are times when having a blog is good.  Because I have stories to tell about the jerks sweet little darlings that harass my kid sometimes.  Like at the end of the school-year.  My son’s soccer team came in second place in a tournament and on Monday morning after, some kid on another team who goes to my son’s school came up to him and said, “You only won because you got lucky…you no-armed kid!!!”

What?!

Really?!

Yes.  The kid said that to my kid.

I pointed out that the kid was inaccurate considering the fact that my son actually does indeed have two arms.

“Yeah Mom, I know!” my son replied, “I told the same thing to my teacher and she said to ignore the kid because he was just a sore loser.  At least I think she said sore loser.  All I heard her say was ‘loser” but I don’t think teachers are allowed to say stuff like that about other kids.”

I think this particular story is a perfect blogging opportunity.  Nine years.  Nine years we’ve had a kid who happens to have a limb difference and he is still getting stuff like this said to him.  It boggles my mind, the stupid stuff people have said to my kid just because of a silly thing like missing a hand.  And once you get to know him, you can see pretty quickly that there is so much more to my kid than the hand he never had.  And I love how the teacher didn’t make a big deal out of it.  Just chalked it up to another kid being a sore loser.

Good stuff.

Anyway, Camp Winning Hands is a great place for my kid because he gets to be around other kids just like him and he gets to see older kids with the exact same limb difference doing well and sharing their life.

And the food is good.

And did I mention, it was free?

Here is a video about the place:

So we did that.

There have been swimming lessons and play dates and barbeques.  It’s been a nice summer.

Things are pretty ok in Cancerland too.  My breathing has improved though it is still not perfect.  I am slowly losing weight by watching my food intake (cupcakes make you fat, yo!) and exercise on the My Fitness Pal app.

It’s really helpful to track what you eat.

Food.  It’s such a cunning thing.  It it meant to nourish you and keep you healthy but that warm fuzzy feeling food gives you can well…make you fat.  I’ve been complaining about my weight gain during chemo but the truth is, if I eat smart, which means avoiding dairy and carbs (including cupcakes) and eat lots of fruits and veg  and lean protein, the weight slowly goes away.  Duh!  But it’s hard when you are stressed about…life.  It’s hard to always make good choices.

I’ve been walking a lot.  Unfortunately, I fell on my face 2 weeks ago while walking the dog.  I had her leash in one hand and I had my phone in the other because I was listening to an Audiobook. I tripped and tried to catch myself but the dog just kept pulling me forward and eventually, I hit my head really hard on the sidewalk.  I ended up with a bump on my head, a black eye, two skinned knees and a scraped elbow.

It was an epic fall.  Epic.  I wish someone had gotten it on video.  *SMACK*  I just laid there on the sidewalk moaning at first while the dog licked me.  Then this guy got out of his car to check to see if I was alright.  Bless him!  By then I had found my phone and was calling my husband.  My head was bleeding a little and my eyelid was swollen shut.  It was an amazing experience.  One I would not like to repeat.

Here is my eye about 4 days after the fall:

IMG_1636

What else?  Oh, I got a baseline ultrasound of my lady parts because Tamoxifen has been known to increase the risk of ovarian and uterine cancer.  I got the results yesterday and they weren’t horrible.  But I have a cyst on one ovary that they want to recheck.  And it’s a little scary.  But we won’t really know anything until I get the recheck in 6-10 weeks and we will go from there.

I kind of wanted to cry when I got the result of the weird cyst but really, there is nothing for me to do about it other than wait for the recheck.  Worry is a wasted emotion.  Having cancer taught me that.  Worry isn’t going to change anything and it might make everything worse.

We’ve had some bumps along the way this summer but we are together and we are happy and life is good.

I promise to write more tomorrow.


2 Comments

Grateful Acceptance

I am going to begin this post by telling you once again how grateful I am for my husband.  This is a man who took the whole “in sickness and in health” vow seriously.

One of my biggest fears during treatment was making sure I had care for our children.  I tried in earnest to get my ducks in a row before my surgery even happened but, unfortunately, we were let down by several people we trusted.  Thank goodness for my community of friends and neighbors and most importantly, thank goodness for my dear, dear husband.

He figured out a way to work from home during the most intense parts of my treatment.  The boys often were at summer camps or eventually in school but I still needed him to take care of me.  I was in a world of pain.  I read somewhere that the point of chemo is to take a person almost to the point of death in order to wipe out any cancer.  I questioned that statement but my husband agreed with it.  “You don’t remember, but you were very, very sick.” he said.

He is correct that I don’t remember most of treatment.  I can’t remember celebrating my son’s 12th birthday.  Although I do remember insisting on him having a cake.  I can’t remember most of last summer.  It’s strange but also a blessing.

Anyway, I have said before, my husband stepped up to the plate in a big way.  He took care of me and our two boys.  He went to Back to School Night alone.  He went to Music Booster meetings.  He transported the boys to and from, he cared for me when I was at my lowest and he worked a full-time, high pressure job.

And I am so grateful for more reasons than one.

See, my biggest fear about this disease is that it will force me to leave my children…by dying.

And if anything, last summer taught me that my boys will be ok.  They have a great dad who will never let them down.  Who will always put them first.  It is a comfort.

So that is my preface.

Now I want to talk about the differences.  I guess, first, I have to tell you a little about myself.

I myself am not known for my housekeeping skills.  I don’t enjoy housekeeping.  At all.  I like to shop for groceries.  I like running errands.  I like getting things done but laundry and dishes and cleaning are a pain in my tush.  I feel like Sisyphus, pushing the rock up the hill, but the rock keeps rolling right back down.  There’s always more laundry, more dishes, more poop to clean.

Unfortunately, or fortunately, my husband feels the same way about housecleaning.

It still is after 14 years, the only thing we really disagree over.  Housekeeping.

There is another part.  We decided at the beginning of our marriage that we were not going to be spending our weekends in paradise cleaning the damn house.  Instead, we do things like “commercial cleanings” where we get up during commercial breaks on t.v. We tried in the past to make it fun. Sometimes it is.

But here’s the thing, I am the only woman in a house with three men.  There are some differences.

One thing is, a lot of my stuff gets broken.  It’s not usually on purpose.  But it happens a lot.

I had this doll from my childhood.  talkup

You pull her head and she says sassy things.  My dad hated her and tried to throw her away.  I fished her out of the garbage.  The first time my husband heard her, he said, “She talks like you!”

She was sitting on a high shelf and somehow, my son, age 2, got her and drew on her face with a permanent marker.

I’m not going to lie, I cried.

I had this orgami box that a student had made for me.  It was beautiful.  My other son had his eye on it for years.  One day, he found a step stool, got it down and tore it apart.  He’d just waited for his chance.  I tried to look on the bright side, at least I know he can be patient.

My favorite lawn chair was taken out of the storage shed and left in the rain to mold on the side of the house because someone thought I didn’t use it anymore.

Silverware is lost, dishes broken, furniture gets written on, knick-knacks are chipped.  No one can explain it, it just happens.  Usually, I just accept it.  I’ve started to think the universe is trying to teach me a lesson in letting go.

The other day, I noticed we were out of drinking glasses.  Drinking glasses made of GLASS.  I used to have a full set.  And now they have all disappeared.  My assumption is they broke while I was in treatment.  No one is fessing up.

So yesterday, I said I was going to buy some new drinking glasses.  A logical solution in my mind.

But my husband told me not to because he was ordering these.

images

Yes…camping cups.  He decided that our every day drinking glasses should be camping cups.

And I immediately said  NO WAY.

He asked why and I promptly told him that I do not like the metal taste of camping cups…and they are ugly.

He told me that there is no metal taste.  Kleen Kanteen says so right in their advertising!

And I told him that I don’t care what Kleen Kanteen says, I don’t like the way water or iced tea or lemonade tastes in a metal cup and that I was going to go buy some glassware that day.  I told him he was free to buy himself a camping cup to drink from and that I would happily write his name on it with a paint pen but that I was not going to be participating in in-home use of camping gear.

He tried to tell me that I wasn’t being GREEN and that this is going to be a new trend and I was limiting myself.

There was some shouting involved (on my part) and there may have been a little swearing (also on my part).

And my husband just shook his head, like I am such an idiot for wanting to drink out of nice glassware.

Whatever.

So I headed down to the Crate and Barrel and this loud talker sales person helped me pick out the strongest sturdiest glassware I could find.  I got twelve glasses for under thirty bucks.  They were not my top choice but they look sturdy and strong.

images-4

And now that I did research.  These guys are also apparently good for storage if you get some lids.

2b4904257b9cfb09a49b134a8c40118b

But we also lose lids so blah.  Probably not doing that.

Look.  I don’t have a problem with my husband and boys using camping cups if that what they prefer.  I realized that what made me angry was being told that I was imagining the metallic taste and that somehow Kleen Kanteen advertising supersedes my personal preference.

And how is glass not “GREEN” anyway?

And also, I can just imagine serving guests their drinks in camping cups.  It’s just not my style.  Maybe it’s yours and that’s ok.  But it’s not my thing.

My husband swears that metal cups are the latest thing and I am just old-fashioned or something.

I am ok being old-fashioned as long as my water doesn’t taste like a tin cup.

“IT’S STAINLESS STEEL!”, he says.

Whatever!

And yes, I totally told him, “I am sooooo blogging about this!”

So my point is that my husband is a wonderful person, a patient person, a kind person.  He is my very best friend and I love him more than life.  I have so much gratitude for his loving tender care of me and our boys and I know.  Gosh do I know how lucky I am to have him.

But we can still disagree about things and hopefully, there will be compromise.  And when there isn’t, maybe the camping cups can live side by side with the working glass.  Maybe?

Also, I am wondering if for the rest of my life, whenever I am upset with him, I will have to preface everything with my gratitude for doing what he vowed to do fourteen years ago.  There are worse things, I guess.

 

 


Leave a comment

After the Exchange

It has been three weeks since my exchange surgery.  I am feeling pretty good.

It was done as outpatient surgery.  The PS made new incisions under the breast and  took out the god-awful tissue expanders .  He then spent some time revising the capsules of scar tissue that held the expanders.  Finally, he put in Natrelle 410 implants otherwise known as “Gummy Bears”.

Gummy-Bears-300x235

They have taken some getting used to.  Apparently, they need time to “settle”.

I didn’t have a choice in what kind of implant I received, I was actually hoping for the round implants but mine are tear drop shaped.  They are supposed to be more “natural”.  I don’t know about that.  When I first awoke from surgery, they looked pretty flat to me.  I was like, Really?!  I went through hell and I’ve come out with less than I started with?!!  How is this fair?

But the thing is, the implants were placed under the muscle because I have no breast tissue to hold them in place and the muscle was pretty traumatized and was contracting, hence the squished, flat look.

Things have relaxed a bit and are looking better.

Recovery has been so much easier than the first surgery.  Thank goodness for no tubes and drains this time.  I’ve had some problems with healing.  I have a weird hole in my incision on the radiated side which has finally scabbed over.  Gross, I know but I was concerned for a bit that I was going to have a hole in my breast.  I have been taking things very easy because of the hole.  Who knew that could even happen?

In other news, I saw my oncologist last week.  She said, “It’s been a year and there is no sign of cancer!”  I told her not to jinx me.

I am lucky.  So very lucky.  All those lymphnodes.  All that cancer…and I didn’t even feel sick!  It gives a person a new perspective.  I feel like my eyes are open to the world.  I walk to get my son from school and I am just amazed at how beautiful the world is!  Every flower, every tree.  It makes me giddy.  I take pictures.

On the walk.

On the walk.

IMG_1413

IMG_1416

I don’t take life for granted.  Not even the flowers.

These are the things that matter.

 


2 Comments

Hey, Guess What?!

I’m feeling pretty good! Only one asthma attack in the last two weeks.
Now for the bad news, my plastic surgeon had me go off Tamoxifen a couple of weeks ago and since then my breathing has improved…a lot.
I am actually hoping it is a coincidence because I’m supposed to take that stuff for ten years.
If tamoxifen is what is causing or influencing my breathing issues, then that’s just not a good thing.
I want to take the tamoxifen but I also like to breathe, you know?
Well, we won’t know anything until I restart the tamoxifen a couple of weeks after my surgery.
I’m having surgery in a week. My awful, horridly uncomfortable tissue expanders that I have endured for over a year are coming out and nice squishy “gummi bear” implants are going in. I hope it’s a good thing.
People are all ooh la la you’re getting new boobs, and I’m all meh. Whatevs. I’m still fat and my hair is crazy ridiculous. What are new boobs going to really do for me.
With that said, I am cutting down on the food I am stuffing in my cakehole. It was getting ridiculous. And now that I can breathe, I can exercise more so hopefully I can get it all under control soon.
My hair though. Well that’s another story. It’s crazy bad curly. Like I got a really bad poodley perm. And I have a mullet. Thank goodness for hats.
In other news, I finally did the sorting test on Pottermore. Can you guess which house I was sorted into?


3 Comments

More Pulmonary Fun!

You know, I wish I could stop blogging about my health.  I wish I could go back to writing about bone broth and running and yoga and fun recipes.

But sadly, I don’t think that is going to happen for awhile.

I had my follow up CT scan a little while back.  I had it while enduring that horrible case of bronchitis and the results were not great.

The newest reading is leaning towards something called sarcoidosis: a mysterious disease that is basically an inflammation of the lungs or other organs.  It can also affect the eyes.  Now we don’t know for sure that I actually have this disease.  It could be the bronchitis.  It could be the MAC.  It could be an irritation.

I am seeing an ophthalmologist tomorrow.  Good thing I was due for a check up anyway.  My doctor told me to ask for the “full work up”.  If you get sarcoidosis in your eyes, it can affect your vision.  Doesn’t that sound awesome?!

So tomorrow is a busy day.  I am going to the chiropractor at 9 am, then I have an eye appointment t 11:15 and then I am meeting my plastic surgeon at 2:45.  I am exhausted just thinking about those appointments.  I am so tired of being a sick person.  It’s not fun anymore.  Ok, really, it has never been fun.  All those cliches about appreciating your health are true.  I got tired walking through Target today.  I am tired of being tired.

What’s that?  Why am I meeting with my plastic surgeon?  Because we are planning out my upcoming exchange surgery.  Yea!  I have been dealing with these uncomfortable tissue expanders in my chest for almost a year and it has become really annoying.  These things on my chest are as hard as rocks and twice as painful.  They dig into my chest.  When I sleep on my side, I wake up in the night with stabbing pains.  Tissue expanders are horrible and thank goodness, they are coming out in May.  I know I’m supposed to be looking forward to having soft squishy foobs after the exchange but I am so over it.  I don’t even care.  I just want to not be in pain anymore.

Back to the sarcoidosis conundrum, my doctor is curious to see what is going on.  She is inclined to to some procedure where they put me under, stick a tube down my throat and take tissue samples.  But here’s the thing, if it’s sarcoidosis, she will not immediately treat me (only treatment is steroids)  and if it’s MAC, she won’t treat me either.  We’re kind of hoping that my body takes care of this on it’s own.  So what’s the point of going under general anesthesia if she’s not going to treat me anyway?

The only way I think we could do it is if she came in during my exchange surgery in May and did the procedure then but that would mean rescheduling my surgery and I don’t really want to do that.

Are you confused?  Try living it.

I’m just fed up with it all.  I just want to feel normal again.  I know at this point I’m just along for the ride.  Please keep me in your thoughts and prayers.  I still need them.

 

 


2 Comments

Stuff in My Lungs That Isn’t Cancer

I just had the 2nd follow up CT scan of my lung.  I meet with my pulmonologist next week.  From what the reports says, it looks like some stuff cleared up and some stuff stayed the same and some stuff got worse.  Great.  I’m sure it doesn’t help that I currently have a raging case of bronchitis anyway.  It hasn’t been fun.  BUT IT’S NOT CANCER!

I did receive my very own inhaler a couple of weeks ago.  Just for me!  I’ve had upper respiratory issues for most of my life; chronic bronchitis from childhood up until just a couple of years ago.  Acupuncture changed my health drastically.  I went from three or four serious upper respiratory illnesses a year to zero.

Zero.

I did get fifth’s disease a couple of years ago but since I started getting regular acupuncture, I’ve been very healthy…except for the whole cancer thing.

I had missed several weeks of acupuncture and I caught a cold that quickly went to my chest and then knocked me on my tush.

And it’s very frustrating.

But I digress, both my kids have had inhalers since infancy.  When I have had problems breathing in the past, I just sneak one of theirs.

When I met with the pulmonologist she asked me a bunch of questions like, did I grow up with adults smoking in the house? Yes…three of them.

Do I have a family history of asthma?  You bet.  But I didn’t know about it until my 30’s when I reunited with my birth family.  The adoption agency didn’t feel it was important to mention that my grandmother, mother and several uncles were asthmatic, even though it was in my file.  Stupid.  Stupid and dangerous because when my infant had what we thought was croup, the doctors didn’t suspect asthma because neither my husband nor I believed there was any family history of it.  It was frustrating then.

My birth mom was all, “Why did the agency make me sit for hours answering medical history questions if they weren’t going to share them with your parents?”

Good question.

But don’t get me started on open records and adoptees rights to their medical histories and original birth certificates (of which I now have both!!!) because we will be here all day.

So the doctor thinks I’ve always had low level asthma but that it really got triggered by recent events.

“Stop using your kids’ inhalers.  I’m giving you one of your own.”

You know, this breathing crap started this summer during chemo.  I would be sitting there reading a book and hear this wheezing sound and think, “What’s that noise?” and then “Oh!  It’s me!”

I told my oncologist and she just blew me off.

So I just used my kids’ inhalers when I struggled because obviously this all must be in my head and I was just being a baby as my ONC implied.

But it turns out, I most likely have asthma that has been brought on by the chemo as well as a nasty bacteria in my lung.

Whose laughing now, oncologist?!!

Well…not me because being able to breathe is a big deal.  We take it for granted until we have problems, and then it’s a real problem, you know?

The inhaler helps sometimes but the other day, I spent 3 hours on the couch with what felt like an elephant sitting on my chest.  And the inhaler didn’t help at all and it was kind of scary.  I didn’t really know what to do but I knew I wasn’t being a baby because I’ve seen my kids go through the same thing.

Should I have gone to urgent care?  I don’t know.  This is all new to me.

Eventually, the tightness passed but it was exhausting.

So all I can really do is keep trying to boost my immunity.

I’ve been juicing and making green smoothies.  I even went to Jamba Juice and tried my first and second shots of wheat grass.  It really wasn’t bad.  Kind of sweet and they give you and orange slice to chase it with.  Tastes better than tequila.

I went to the birthday party for a friend and midway through dinner, I was so exhausted, I put my head down on the table.  I was home and in bed by 8:30.  Lame.

I seem to finally be coming out of it but like I said, it’s frustrating.

Yesterday, I got out of bed for about 20 minutes, took a shower and was so exhausted, I crawled back in bed and stayed there the rest of the day.  Not cool.

I’ve been reading.  I’ve read three books by Liane Moriarty.  I am currently on a fourth one.  So far, “What Alice Forgot” is my favorite.  It’s about a woman who bumps her head at the gym and forgets the last ten years of her life including the birth of her children and the breakdown of her marriage.  I really enjoyed it.

I finished Harry Potter Lego (it was highly anticlimactic) and now I am playing Pokemon Y on my very own 2ds.  My kids think I am the coolest mom ever.  My little one and I have Pokemon battles.  He keeps winning.  Hey, at least we’re interacting, right?

And now I am trying to justify a trip to McDonald’s drive thru in my pajamas because I am craving an Egg McMuffin.  Who’s going to see me?  I’ll stay in the car.  God?  I think she’ll understand.  Can I do it if I put on my robe?

Also, I’ve decided it’s ok to have a McMuffin as long as I have some fresh squeezed beet carrot apple spinach juice with it.  My juicer has been getting a workout but golly I hate cleaning that thing!

Maybe I’ll just stick a sign on my back that says, I give up and be done with it.

 

 


2 Comments

The Lessons of Cancer

Last night, my younger son said to me, “Mom, why don’t the doctors just shoot you full of some kind of chemicals to make sure the cancer doesn’t come back?”

We all stared at him for a minute, mouths agape.

“You know…you could go to the doctor and he would have a big needle and shoot you full of stuff to clean out that cancer!”

IMG_1239

My older son looked incredulous.  “That’s what she did!”.

Younger son looked confused.

I explained, “You know the chemo I did?  That’s exactly what the doctors did.  We did that.”

Older son said, “What do you think Mom did all summer?!”

My first chemo.

My first chemo.

My younger son then said, “But if you did that, then why can’t we be sure that it’s gone forever?”

Awwww, son.

So I explained that I did everything I could to cure my breast cancer.  First surgery, then chemo, then radiation, then Tamoxifen.  I explained that the protocol is promising and that it works for a lot of people and that we really hope it works for me.  My older son piped in and said, “Mom’s cancer is Stage 3.”

And I said, “It’s not just Stage 3 it’s Stage 3C.  The closest you can get to stage 4.”

Younger son asked, “What’s after Stage 4?”

And I gently explained that Stage 4 is it.  But that these days, there are many people who live for years at Stage 4.  My dad lived at Stage 4 for ten years.  And that’s a really long time, especially for kidney cancer.  I also explained that he was Stage 1 or 2 for ten years before that.

“So here’s the thing, guys.  I had all the treatment and now I am trying to keep my body healthy because I believe that a good immune system is part of all this fighting cancer stuff.  In all the years I knew my dad, he was rarely if ever sick.  The rest of us would be down with some illness and he wouldn’t even catch it.  He’d be the one taking care of all of us!”

“And the kind of cancer my dad had, it isn’t very treatable with chemo and radiation.  After my dad’s first surgery, the doctors sent him home and wished him luck…and that cancer stayed away for ten years!  That’s something!”

Doctors have written papers about my dad’s strength.

And then my younger son asked the question he always asks, “Which DAD?”

And I explained it was his Pupa.  The only Dad of mine we knew.  My adoptive dad.  And as always, this led to the questions about my birthdad, R.  He died of brain cancer three years before I found my birth family.

“That’s a lot of cancer, Mom.” my eldest said.  And that’s not even the half of it.  My birthmom had breast cancer a year before me and her mom died from lymphoma in the ’70’s.

“Yes.  We have a lot of cancer in our family. We have to do what we can to fight it.”

So then we talked about all the things we are doing to try to stay healthy.

We all exercise, we go on a lot of walks (the complaining about the walks are endless!).  We eat better.  We eat lots of vegetables.  We don’t eat as much meat.  We limit dairy.  I’ve been making our bread in the bread machine almost every day…honey whole wheat.  I juice vegetables several times a week.  We eat green smoothies.  I offer it to the boys.  They don’t always take it.  The other day I did my first shot of wheat grass.

We’re getting crunchy in here people!

We eat a lot of brussels sprouts and cauliflower and broccoli (roasted in the oven and 350 with some olive oil, salt and pepper, mmmmm).

We eat a lot less sugar than we used to…well, I do anyway.

I drink a lot of green and white tea.  I take a lot of supplements.

We all try to get good sleep.  Both boys have an early bedtime because sleep is important.  They complain but when they get to stay up, they are miserable the next day so what’s the point?

The reality is, that genetically it seems my boys and I have some predispositions to cancer.  I know I do.  The jury is out for them.  But I feel like now it’s my job to model prevention for them and to do it in a way that doesn’t scare them.

We don’t cram it down their throats and believe me, we still have cookies in the house and chips.  But we model better eating and better sleeping and better exercising most every day.

I know my little boy wants a guarantee for me.  He wants me to be 100% cured.  I hope I am.  I hope I can be that for him.  But I also know that with my diagnosis, it would be cruel to tell my boys that I am “Cured” forever.  I am cured for now and we have lots of HOPE.  And hey!  There’s things I can do to stay healthy.  Look at me eat my beets!  Look at me down this nasty wheat grass!  Look at me going for a 5 mile walk!  Look at me do my qigong video! (You’re doing great, Mama!) I am not doomed.  We have hope!  That is important.  And most importantly, I have my boys to live for, to fight for.

What would I do without those boys?


2 Comments

Can You See My White Knuckles?

People are still telling me how brave and strong I am. And I have to disagree.

I’m not doing anything brave.  Not at all.

I feel like I am hanging onto the edge of a cliff for dear life.  If I think about it too much, it scares the crap out of me.

I’m scared every day.

I laugh because there are studies that say it will help me live longer.  I drink green tea for the same reason.  I exercise for that reason too.  And I take stupid supplements too.  I actually think I have a problem with supplements.  I keep buying them.

Last week, I almost bought a kit to grow Turkey Tail mushrooms because there’s some study that says they fight cancer.

The Husband noticed my obsession with supplements and asked me where I am going to draw the line as supplements can get expensive.  And the answer is, I don’t know.

I’m scared.

There is nothing brave about any of this.  What choice do I have here?

No choice, just living.

It’s funny, there are several people who treat me like I am already dead.  No kidding.  When I see them, they look right through me, like I’m not there.  Like I’m already a ghost.  It’s a bit disturbing.  At first it hurt my feelings a bit, but what can you do?  Maybe I’ll get a t-shirt that says “I’m not dead…yet.”

It is strange to think that my very existence frightens people but it seems to be the case at times.

But I’m not dead yet.

And I’m not always scared.  Just when I think about it too much.

So my life is about distractions.  And that’s not brave.

I’ve also found I have to curb my swearing.  If I am even slightly agitated, I seem to let the swear words fly.  What can I say?  I’m stressed out.

So don’t think I’m here fighting dragons or slaying vampires.  Really, I’m just kind of hanging out, hoping to stay fairly healthy.  I think that’s what any sane person would do.

Nothing brave or strong about it.