Waiting for Savasana


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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.

 

 


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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.

 

 


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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!”

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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?


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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.


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Cooking Tips From My Son’s Pediatrician

My son had a check up recently.  He’s fine.  Better than he’s ever been in fact.

SHe asked about his eating and we told her that he’s basically a vegetarian that eats hotdogs and chicken nuggets.  Other than that, he sticks to fruits and veg.

So she told us her recipe for home made chicken nuggets and he really wanted me to make them.

It was quite simple.  Scramble up one egg in a bowl.  In a separate bowl mix bread crumbs, salt and pepper to taste.  She suggested adding parmesan cheese however we have some dairy adverse family members so we left that out.

I bought raw boneless, skinless chicken tenders in the meat section.  They were quite affordable.  I dipped them in the egg and then rolled them in the bread crumb mixture.

Then I fried the tenders in olive oil.  Once they were cooked on the outside, I stuck the whole pan in the oven for about 15 minutes.  I was also roasting broccoli simultaneously.  I know there are fancy recipes for roasted broccoli on Pinterest but honestly, I just toss the broc with olive oil, salt and pepper and roast is at 400 degrees for 10 minutes on each side.

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Anyway, you know the dinner was good when your husband brings home more chicken the next day and asks you to make it again.

I’m planning to make this for dinner again tonight.  Simple and tasty.

We have a really good pediatrician.


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Maybe I Don’t Want To Talk About It

I did something stupid.

See, last May after my surgery found 35 positive lymph nodes for the big C, my doctors ordered bone scans and CT scans to see if the cancer had ventured out to other parts.  Thank goodness, it hadn’t.

But my CT scan picked up a couple of small nodules on my right lung.  The radiologist said it was probably “post infection” and to retest in 6-12 months.

So I made the appointment a little over a week ago.  And I got a little freaked out.  I asked my Facebook friends to send me good thoughts.

That was stupid.

The scan itself was easy.  But about a day later, I got a message on my cell from my surgeon saying that the nodules were “more prominent”.

Wait.  What?  Really?!  What?!

Who leaves a message like that?!  Seriously.

So I called but she was in with a patient.  I called my oncologist but she was out for the week.  I called my nurse navigator and left her a message.

It was stressful.

Prominent?  What the heck does that mean?

So I finally got  call back from the Nurse Navigator who said that the pre-existing nodules were actually unchanged (which is good) but that there was some new stuff.  It was tiny and fuzzy.

She didn’t know much else.  My surgeon was talking to my oncologist.  They were going to refer me to a pulmonologist.  Blah, blah, blah.

I got the scan on a Wednesday, by Friday, I was freaked out.  I was able to read the CT scan report.  But I am not a doctor.  Who knew what this was?!!!

It was scary, nerve-wracking and depressing.

My husband and I spent Friday morning eating pancakes… and crying a little.  I was fully prepared to be told I was now Stage IV.

I forced myself to go to my Living Strong, Living Well class.  But I was pretty grumpy.  I returned home Friday afternoon to find another message from my surgeon telling me that my oncologist had looked at my films and it did not look like metastatic cancer to her.

So that’s good.

But we don’t really know what it is that is going on.

I had a bunch of appointments last week.  The first being with my oncologist who is not sure what is in my lung.  The next was with the pulmonologist who suggested many hypotheses.  It could be post-infection, it could be TB (?!), it could be pneumonia, it could be mold.  She asked if I grew up in a smoker’s household (I did).  She said that looking at my family history and listening to me, I am probably a touch asthmatic.  She listened and decided to get a sputum sample.  Ewww!  She needed three in fact.

I could not hock up a loogie on demand so I had to breathe in saline through a nebulizer.  It sounds worse than it is.

Finally I saw my radiation oncologist for my scheduled check up.  He was pretty straight with me.  He said that my lung stuff is one of three things:

1. An infection of some kind (which is what it looks like).

2. A side effect of radiation (which he says, it doesn’t look like)

3. Metastatic breast cancer (which he says it also doesn’t look like- but he said that with over 30 positive lymph nodes, we can never rule it out)

He told me to be happy that I feel good.  Keep taking tamoxifen and re-scan in two months to see if anything is going on.

He said that my cancer was serious and that it was ok because they were going to follow me closely.

Also, I think he tried to sell me prescription sunscreen…that was a little weird.

And I walked away feeling somewhat worried (although worrying is pointless) and forcing myself to breathe deep, deep breaths.  Being zen is the only thing that helps, really.

My sons knew what was going on.  We can’t keep anything from them anyway.  My little one directly asked me what was going on and I told him that we have to wait and see.

“But today, I feel ok and that is a gift.  Being with you is a gift every single day,” I told him.

I wish I could tell him that everything will be 100% ok forever.  I so truly wish I could tell him that.  But it’s like my radio oncologist said, what happened to me is serious and we can never completely rule out metastasis.

And to tell my children that the cancer will never ever come back would be a horrible, terrible lie.  And I won’t lie to my boys but I also don’t need to scare the crap out of them either.  I try to be honestly optimistic with them.

And we’re just taking it day by day.

But the stupid thing I did was posting that thing on Facebook because after we got not so great and kind of incomplete news, I didn’t want to say anything on Facebook anymore.  I mean, I really didn’t think anyone would have wanted a blow by blow report of our week-long ordeal.

But then people were coming up to me, asking how the scan went and I didn’t know what to say.  Because like my new nodules, it’s kind of fuzzy.

There’s just this big question mark over this.  I’m being “watched closely” but I don’t know what will happen in two months.

I am glad that the fuzzies don’t look like cancer.  That’s good.

This is all kind of part of the new normal.

But I decided at the beginning, that I would try very hard not to live my life in fear of metastasis.  Fear and worry are wasted emotions.  So I meditate.  I go to my happy place and when that’s done I try to fake it ’til I make it.

I’m drawing and painting and playing the flute (no kidding).  I bake.  The other day, I was home alone and bored so I baked a chocolate cake from scratch.  It was delicious.  I work out.  I take my dog for walks. I spend time with my kids and husband. I send cards and gifts to people. I see friends. I plant flowers.  I read. I meditate.  I sleep.  I watch movies.  I play Harry Potter Lego.  I sew.  I keep to myself a little more.  I don’t waste thoughts on things that aren’t worth it.  I try not to worry.  I focus on the positive.

I’m just living.

Like I said, every day is a gift.  That is true for everyone, cancer or no.

I try not to forget that.


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She Entered With a Dour Expression

She entered with a dour expression.

Her eyes serious and grim.

“I’m so sorry this is happening to you.”

So sorry.

The last we had met was when she cared for my pregnancy.

Well, that’s not true, now that I think about it.  The last time we met she yanked out the bc solution that in fact made me crazy for ten months and may…MAY have contributed to my current predicament.  But that’s another story.

Back to the  sorry.  “I’m so sorry.”

She was.  I saw deep concern in her eyes.  And I told her that if we had met months ago, I would share her expression but now all I can do is be glad I am here.

I am so glad I am here.

We wore the same necklace.

We picked up right where we had left off all those years ago.

I said, “I trust you.  I want you on my team.”

And she said yes.

And we talked about the pros and cons of another surgery.

Oophrectomy.  Look it up.

I don’t want it but I might need it.  I might.

And we talked about Tamoxifen and recurrences and side effects.

And she said, “I can’t tell you how many forty-year-old women I’ve seen on tamoxifen recently.”

And that was serious.

And it’s scary because we are the same age.

And I told her to get a mammogram.

I told her.

I told her.

And it was like old friends coming together, talking and laughing and wearing the same necklace.  Hers from Mother’s day and mine from two Christmases ago.

She said she would be on my team no matter what and then she did the exam.  She told me to go get that CT scan that was ordered for my lung nodule that is hopefully just a post infection thing.

She ordered an ultrasound for my ladybits.  Another check for cancer.  Tamoxifen precaution.

Strange that the drug that may save my life may also cause a separate cancer elsewhere.  But that’s what it is. It is what it is what it is.

This will never be over.

“You look great.”

So do you.

I feel better now that she is on my team.

We both left happy and laughing.

Because there is hope.  There is light.  There is friendship?  Maybe not…maybe just professional camaraderie or a strong mutual bond.

And there was hugging.

I am not out of the woods but I have people to hold my hand along the way.

That’s what matters.

Sometimes, that is all that matters.

 

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