Waiting for Savasana


2 Comments

And Sometimes There is Weirdness

We all know that a major illness can bring out the best and the worst in people.  It can also bring out weirdness.

People say and do weird things and as long as it it not hurtful, it usually doesn’t bug me. I often laugh at it.

My friend who has been through this cancer stuff told me early on to expect people to abandon me.  She said they would say they were going to be there for me but then disappear about half-way through.

Have we had that happen?  I don’t know.  I kind of just want to be left alone at the moment.  I am glad people are not banging down my door.  My husband and kids and those friends in my *inner circle* have not abandoned me so I’m good.  Heck many in my outer and middle circles are still keeping in touch.  It doesn’t take much to keep me happy.

Like my husband has said, I am not always a big fan of *people* anyway.  Don’t get me wrong, I like people but I also like my privacy.

There is a woman who for YEARS stalked me.  She was relentless.  She made up stuff about me and my kids.  She was always parannoying about me and what I was doing.  She followed us around to the places we would go.  The worst was the rumors she would start about me.  The last rumor (but by far not the worst) being that when we had moved to our current home six years ago, we’d had a housewarming party and not invited people, when in fact we were to lazy/tired/antisocial to ever have a housewarming party.  This person called good friends of mine and told them I’d had a party and not invited them. Then they started calling me and I had some explaining to do.  Can you imagine having to deal with that crud on top of just moving?!  Those friends and I, we laughed and laughed…awkwardly.

Anyway, I always told my husband that my stalker had a definite misconception of me as a person.  I’m not very social nor do I care to be.  I spend most nights in my pajamas with a good book.  The joke is on her.

Don’t get me wrong, I like being invited to parties and whatnot, it’s just I often don’t go.

It IS nice to be invited though.

But to get back to the point, things are pretty quiet around here but I do not in any way feel abandoned.  I’m sick.  It’s summer.  People have things to do.  The world does not revolve around me.  I get it.  I’m cool.

I don’t even want to be a part of this.  I never did.

The stalker?  Oh yes.  She tried making contact.  And if I didn’t want to talk to her when I was healthy, why would I want to talk to her when I am sick?  Really?!

Facebook is a funny thing.  I have gotten some new friend requests.  Some I have accepted.  Some I have not.  One was a former friend of mine who dumped me several years ago.  This was a person I once cared deeply for and then suddenly, nothing.  She even stopped sending holiday cards.  It was hurtful.  We have mutual friends on Facebook and have never friended one another.  One day, after my diagnosis I get a friend request and a message.  Heard about my diagnosis and wants to follow along.  Hmm.  Huh?  All I can say is

Photo Courtesy of Grumpy Cat and JediGunship

Seriously?  I haven’t heard from you in years and NOW you want to follow along with my “cancer story”?  Why?  So you can watch me die and say you were my friend?  That is gross.

If you sincerely want to be my friend again, get off your tush and stick a card in the mail.  Offer to pick my kids up from school.  Come over and sit with me for a morning.  I’ll even make the tea. You could even pick up the phone and call me, texts are good too.  I like texts.  You want to “follow my story”?  Why?

Sister, I am not that kind of cancer patient.

And anybody who knows me even a little, should know that.

Creeped me right out.

I don’t know.  I like attention just not too much of it. And I am so, so very sick.  And honestly, my illness is really not about anybody but me.  I have no qualms being a grumpy cat when I need to.

Look, I know we are part of this voyeur nation but I don’t feel like being a part of some twisted reality tv show.  If you want to “follow my story” and not actually be my friend I guess you can read my blog.  Just remember, comments are moderated.

Advertisements


Leave a comment

And There is This

IMG_1486

My arm still hurts.  I actually think the Taxol has not helped anything.  My tissues are all inflamed and it makes my arm hurt worse than before.

I have a ton of lymphnodes removed from my armpit during surgery.  42 of them in fact.  You need your lymph nodes.  They channel fluid and help fight infection.  It is kind of a big deal.

Lymphatic massage helps but when every muscle in your body hurts and your fingertips are sensitive to touch, it is difficult to do the massage to yourself.

Compression sleeves are also recommended.  I can not believe how much it has helped.  I got this fancy one through the “seconds” page at Lymphedivas.  They have a large selection of sleeves and gauntlets but they are quite spendy and since I didn’t know if it would even work, I bought my first one for half price because it has flaws.  Obviously, there is fading on the sleeve. Hence the reason it is half price. It works perfectly fine though and has really helped my arm feel better. The sleeve goes all the way up to my shoulder and is surprisingly comfortable. It basically helps direct the fluid from my arm back to the trunk of my body.  I have noticed less pain when I wear it.  I am going to order another but am looking at different brands.  I have a prescription from my physical therapist and my surgeon so hopefully, insurance will cover some of the cost.

But the sleeve is excellent and a good fit for me.  The customer service person I spoke with when ordering was very helpful and I am so glad I finally ordered it as I was going back and forth with whether I really needed it.  Indeed I do.

My research shows that each sleeve worn with regularity only lasts a few months or so because the elasticity and fit break down.

I am pretty sure the sleeve is just going to become part of my life.  I am really tired of the pain and swelling in my right arm.

I do not actually have a lymphedema diagnosis yet (and I hope I never have one).  It’s pretty serious stuff.  If I get a cut or burn or bug bite on my right arm, I don’t have a good defense system there to fight infection so I could end up on antibiotics or in the hospital.  I really have to take care of myself.

I go see the Oncologist in a few minutes.  I looked at my most recent blood test last night and while most everything is low, my white blood cells skyrocketed.  They were already high thanks to Neulasta but this week they tripled.  I am thinking this is once again because of the Neulasta shot and I will be clear for that last chemo.  I am also hoping that we skip that shot since this is the last round anyway.

My plans for today is to sew another hat for myself.  I will post pictures if i get it done.  We will see how I feel.


3 Comments

Port Woes

I have a port.  It is near my clavicle and sits on the right side.  It is under my skin.  It hurt a lot when it was first placed but I barely notice it now.  My understanding is that it is purple.

My port is great.  They use it to give me chemo.  They just pop the needle in and voila!  Instant access.  They also use it to take blood.  It is wonderful.

My veins have always been hiders.  Once, this nurse came to my house to take my blood for a life insurance policy.  She stuck me five times and never got a vein.  I kicked her out of my house.  I’m not kidding.  I can’t tell you how many times lab techs have beaten my arms trying to find a vein.This is why I requested a port.  And it has been lovely.

The one unfortunate thing about my port is that it was placed on my right side.  I am getting radiated soon on my right side and the port will have to go.

I am kind of bummed to get it out but there you go.

My last chemo is coming up and the port removal is scheduled for a week after.  When they put it in, it was done at the hospital in a surgical room but it seems the doctor will be taking it out in his office.  I am kind of freaked out about that.  In his office?  Really?  What is that going to be like?  It is under my skin!

After they put my port in, the hospital took me back to recovery and gave me a nice sandwich. I don’t think I will get a sandwich at the removal.

Today I had my blood drawn and for the first time, there was a problem.  She put the needle in my port and started to inject this fluid and it HURT.  A lot.

It turned out my port had moved sideways and she had kind of missed it?  I’m not sure what happened.  It was freaky though.  But this nurse came and helped find it and they got my blood and that was it.

Not the best story but we did go to a yummy bakery after and bought some monkey bread and quiche.

Still not that exciting but it was the highlight of my day.

The boys got Disney Infinity and it looks to me like the most boring time waster on earth.  I am not impressed.  I mean, the graphics look good but there doesn’t seem like much to do.  It’s no Harry Potter Lego, I’ll say that much.

My arms are hurting from typing so that is all I’ve got today.


4 Comments

Counting My Chickens

The slow climb out of the hole of pain has begun.  Wednesdays are usually the day.  I am feeling a bit better.  Not great.  Not functioning but better.  And every day I will get better until I get thrown back in the hole this Tuesday.

But that is the last one.  The last Taxol chemo!

It is still the pits (pardon my pun) and I will have to climb my way out of it again but then chemo is over.  It can’t come soon enough.

My boys started school last week and things are going well.  They are really, really happy.  I know that seems strange to say, all things considered but they are children and they are resilient and they are really, really happy.  It makes me feel so glad.

But I also feel left out.

I am sitting on the sidelines.  On Monday, I think I saw the boys for all of ten minutes.  On Monday I was in so much pain that they couldn’t hug me.  I also can’t walk much.  The bottoms of my feet hurt so much.  I feel like The Little Mermaid in the actual Hans Christian Andersen story.  When the mermaid got her legs, it was also a curse.  Every step felt like a thousand razor blades.  Yeah, that’s me. Every step hurts.  Every step.

So I am in bed a lot and I am grouchy.  I hate this.

I talked to the oncology social worker yesterday about the pain among other things.  She says it happens and I shouldn’t beat myself up about it.  Because I am.  Beating myself up about it.  I am really mad at myself for even having the pain.  But the pain is real and it is there.  There is a part of me that keeps telling me it’s all in my head and that I am just being lazy.  I know where that stupid self chatter comes from but it is difficult at times to turn it off.

Yes. Really.  I am that crazy.

I think part of it is that my brain is working overtime.  See on the previous chemo, I was so out of it and sick with nausea that I didn’t do much of anything.  I slept and was foggy and sick.  But I’m not sick now, just in tremendous pain.  My mind is sharp and clear and I am bored.

But there is an end in sight.  My only problem with the end is that I get thrown in the pit of pain again.  This is truly mental and physical torture.

Monday night, i was mad at my oncologist.  I was mad at her nurses.  I was mad.  How could they keep doing this to me over and over again?  Are they inhuman.

Thing is, I know they are trying to save my life.  I know this.

The first radiation oncologist I met said he was impressed with the doses I am receiving.  He says it is my best chance.

But I am still angry and annoyed that I am having to go through this.

I was told that Taxol would be easy.  I would rather have more surgery than get more Taxol.

But I do recover every time.  I do crawl out of the pit every time no matter how far down they throw me.  And despite the being poisoned every other week this summer, I am holding up quite well.

I have not been hospitalized.

I have not had any infections.

I have not been sick outside of the side effects.  Not so much as a cold. I have had one fever but it only lasted a couple of hours.

Knock on wood.

I just have one more to go.

One more.

And my future?  I see myself walking on trails.  Walking for miles.  Then running.  It is the vision I have in my mind.  But to start, I just want to go for walks again.  I just want to be able to hug my family.  I just want to cook dinner and bake and walk my kids to school.  I just want my life back.  Really, that’s all I want.

I have marks on my fingernails.  Lines that run across the base of each one.  I now have three.  Three on each fingernail.  My husband says I am a tree.  I don’t feel like a tree.

Just one more to go.


2 Comments

As Summer Fades Away

The summer is fading and normally, that is very sad for me.  I love everything about summer, even the heat.

Not this summer.

This has been a summer of endurance and change.  This has been a summer of solitude.

I have watched the world through my computer and I have been mostly content to recede into the dark.

No one wants to see this.  It’s too ugly for summer.

This summer of endurance has not been my friend but I know I will reap the rewards of what I have endured.

This summer was a surprise in many ways.  Illness.  Illness has a way of separating the men from the boys if you will.

There are some people who have wanted to face this with me and others who have cheered me on from afar.  That’s good.  I am grateful.

There were also let downs that I do not have the energy to deal with in this moment but have not forgotten and am not sure I can forgive…but that is for another day.  Not today.

And as fall approaches and a fuzz of white down graces my bare head, I know I can handle whatever is next.

I know I can not classify this as the worst summer of my life.  It has not been.  It has been painful and traumatic but it has also made me learn and grow.  And isn’t that what we are here for?  And while I will be glad to see this summer gone, I can still see the long road stretching out ahead, the road that leads to my recovery.

Good bye summer.

 

 


1 Comment

I Forgot The Most Important Part of My Team

My friends and my family of course!

I have the most amazing team of friends.  You know you don’t realize how difficult and complicated it can be the job of being a mom, until you can’t do it anymore.  I’m not talking about the hugs and love and whatnot.  I’m talking about the day to day.

And let’s face it, mothering school-aged children is all about the driving.  Being on the drugs I am, driving is something I can not often do.  My girlfriends stepped up (husband too).

These people watch my kids when I have a treatment or an appointment.  We cancer patients have lots of appointments.  More importantly, they LOVE my children.  And I so appreciate that.

Cooking is another thing I can only do sporadically.  I am so weak and those first few weeks on chemo, so nauseated.  My friends stepped up.  Old friends, new friends, people I hadn’t seen in years came out and brought us meals.

One friend arranged for cleaners to come every other week.  I am, oh my gosh, so grateful.  i don’t like to clean in the first place!  This is awesome.

People bring gifts and popsicles and cookies, and boxes of candy.  People send cards full of love.  People send pajamas and socks and shawls and quilts and stuffed animals and flowers and plants that I often kill.  I’ve bot the world’s blackest thumb.

People pray for us and ask their friends to pray for us.

They come and visit me and go for walks with me.  They love me.  I never expected that.

And the texts and the Facebook messages and the phone calls.  Cancer can be a lonely disease but I don’t feel it.  It’s amazing.

Friends and family take care of us and I am so grateful and humbled and awe- inspired.

Thank you, thank you, thank you.

I am so blessed and lucky to have these people in my life.  They are the foundation of my team and I love them all.