Going back - chemo chronicle 3.3

Chemo Chronicle 3.3

It was a hard day.

I admit it, I don’t do well with change….AT ALL!

I like to know what is going to happen, where I am going, what it looks like, etc.

Yes, Ian is just like me in regards to this. I felt a little like a lost 4 year old Friday when we walked into the office in Round Rock.

My doctor moved offices to a new location and today was the first day there. I am still not sure about it all as with most new things.

It is a lot smaller but it is oddly too small.  I know, weird.

The infusion room is a lot louder due to the smaller size and it doesn’t seem things here are as streamlined as they were at the old office. Eric keeps telling me that this is just as new to them as it is to me ,which is true. They had to hire a whole slew of people to come over to this office since they just made it bigger.

That was just the start of the hard day. With my new infusion of BSI (trial drug) it adds another hour onto the infusion. So now a normal Friday infusion will be at least 3.5 hours and when I have to get Zometa (bone stuff) it will be around 4.5 – 5 hrs.

We checked in at 8:15 to see my doctor and didn’t leave until 2:00 and it wasn’t even a Zometa day.

The whole time I was sitting in the infusion chair all I could think about was how in the world are we going to make this work with Ian’s school?

His school will be from 9:30 – 2:30. There is no way I can drop him off and pick him up on Fridays. Yes Eric can do one/both of them, but how long is his work going to be cool with him practically not coming in on Fridays?

How long can he run around ragged like this?

Yes these are the things that run loops through my head on a daily basis.

I am not worried about me.

I am worried about Eric and Ian.

 

_________________________________________________________

Please know this was written back in 2011.

I am still writing away for the book and getting it together. 

From a friend who is a social media monster, she suggested I start doing videos too and read some of my poetry writings that I think sound better being read verses you reading.

Please let me know what you think.

Looking Back

I have been looking back over my whole cancer journey for the book I am trying to write.

I must admit, it is rocking my world again.

I can’t help but wonder if I should go on with it?

I know I need to get this out of me,  but that doesn’t make it any easier to relive it all again.

But then I wonder, what in the hell am I even going to do with this said book? 

Will it really help others?

If I was fresh off the diagnosis train, I sure as hell wouldn’t want me to be the first person I ran into. I wouldn’t want to hear my story only to think, man that sounds horrible. I hope that isn’t me.

But then I have to remember to look at this not from that point of view, but from my heart’s point of view. The point of view that others say they see me in.

I am once again scared.

Scared of what will really happen if I get this book out there. 

What if nothing happens? 

Does that mean there really was/is no meaning to all the shit I have gone through and continue to go through?

30 hours later

I have been asleep for the past 30 hours.

I think all the stress of the scan, the appointments, the every think really took its toll on me. So much more than I would like to admit.

I couldn’t sleep Monday  or Tuesday nights, then it all hit me. 

I went to sleep yesterday at 9 a.m. after having another bad night of sleep. I sleep until 300 in the afternoon, went to get Ian, came back home and got Ian set up with snacks and TV (hey, I have to do what I have to do), laid back down telling him to wake me if he needs me, slept again to 530, Eric home and then I slept the whole night through and woke up at 830 this morning.

And the thing is, I am still tired.

Side note up there – at first I typed (yes, I get mother of the year award) BUT I changed it because I am really trying to not talk shit on myself. Yes this is my life.

I guess Dr. H was right when she told me to slow my roll the other day. 

I just want to do so much, I want to spent time with everybody, I want to work out again (even though I have been doing my spinner here for 20 a day, I want more).

I think I need to go back to taking naps during the day.  I seem to do better when I do that.

I almost didn’t write this.  I was going to take the easy way out and post something I had written months ago, but then I remind myself I promised to tell the whole truth…this is it.

Once bitten, twice shy

That is how I feel now in regards to scans and what now.

I had an head MRI on Friday, Dr. H and two chemos yesterday, and Dr. Groves to look at my MRI from Friday.

To say the least, I am beat down tired today with a headache from the chemo and just being so tired.
But I will take it because I am still NED in my head and in my body.

Oh it is that little things NED that make my heart happy!
Yes, I realize it isn't little!

I got a little lecture from Dr. H yesterday when I told her what all I had been doing.  She told me to slow my roll. We just laugh together.

Infusion was easy, then I came home a half slept, half listening for my alarm to go off to tell me it was time to got to Groves.

Eric went with me downtown because I still don't feel comfortable driving downtown and man I am glad he was with me.

After a long wait (which I don't mind with Groves - you can't rush a genius in my opinion), we talked to Dr. Groves; he said my MRI looks better and better every time and we will just keep this train rolling.  I got my next MRI pushed out for 10 weeks which is great! 

He said of course call if need be earlier, but honestly he doesn't want to see me earlier.  And I him!

I am tired today after yesterday having 2 treatments and all the appointments, so I am going to sit it on the couch today and do nothing.  See, I am learning to listen to my body.  Maybe I should send this to Dr. H?!?!

Therapy

At one point in my life, I would never write this.

I used to be embarrassed that I needed therapy of any kind.  I used to think I should be able to handle all this on my.

I used to think a lot things that I look back on and think, wow.  That is it stupid.

Honestly, I never knew one person could see so many different therapists at the same time. When people ask me what I do all day, I am so temped to say, “therapy. That is the long and short of it”

Seriously though here is a list of what I do:

Chemo therapy well.

You know, for that cancer bit and stuff.

I go for infusion once every 3^rd week, and I take 6 chemo pills at home for 2 weeks on and one week off. So really I am on chemo about 70% of the time.

Head therapy.

Dr. H told me a few weeks ago that it was that time once again. To pick up my pieces and start moving forward.

I feel like a pack mule hauling all of my issues around.

She asked me if I ever went back to the therapist who she told me to go.  I told her I went 4 times and she looked at me with that mom look of really?!

She said that isn’t good enough.  I need to KEEP going.

She likes to remind me I have been dealing with cancer in some form for the past 6 years and 4 times at therapy isn’t going to work it all out.

I was prone to depression before all the started 6 years ago.

I guess chemo didn’t take that away for me.

So now I do talk therapy once a week.

Physical therapy.

Again, Dr. H was all up in my business about this too and told me it was time to go back.

I fought her on that for a long time too.

I didn’t want to go back.

It is hard.

It makes me tired.

It makes me sad.

Sad to see what I am not able to do anymore.

It pisses me off.

Going there and having to learn how to walk again for the 3^rd  time now. It isn’t something that I want to admit I need help with.

Relearning how to walk, balance, gain strength back, avoid falls and so much more is so hard.

It is hard physically and emotionally. 

I mean, I used to be able to do so much and then one day I couldn’t – repeat times three.

Hypnotherapy

She didn’t tell me to do this, I just do it on my own.  I quit smoking about 10 years ago with hypnosis and I have never smoked again.  So to say the least, I am a be believer in it.  Eric thinks it is BS, but I think it depends on the person.

I tell him he just thinks he is too smart for it and roll my eyes at him.

I started back with hypnosis a few months for my anxiety, depression, confidence and any other lingering issues that seem to like to hang around.

I love it.

I know this doesn’t replace my talk therapy and my meds that I am on for depression and anxiety, but I like it.  If nothing else to help me relax for an hour.

Family and Friend Therapy

I am getting out again to be social again. 

I am learning to lean on others and not just Eric all the time.

I am learning to trust my words that I tell so many others. People want to help and like to be needed.

Creative Therapy

I am writing more than ever.  I can officially say I have started my book of this journey I have been on these past 6 years.

I am painting again.

I am learning to live again.  Live my life as I am now. Not how I used to be, but expect me now and got with it.

It hurts so bad

Well, all my "oh, this chemo is a breeze" is coming back to bit me or burn me I should say.

I am experiencing a very common side effect of this chemo called hand-foot syndrome 

Let me tell you,  this crap hurts.

Me feet hurt the worse, especially when I am on them...so my grand plan to start walking to lose weight is once again put on hold.

Can't I just live my life

 Sorry the pictures are gross, buy my feet are gross and in pain.

The bottoms feel sunburnt and swollen. And my hands are so tender bending them hurt.

Cream helped a bit when it first started, but not now.

I guess another day in Cancerland 

Beach time

And a good time was had by all!

We made an impromptu beach trip this weekend and I think it was just what the doctor ordered

Stress does magically meltaway in the salty air while the soothing sounds of the waves put you in a happiness trance

A fish out of water

I feel like a fish out of what.

Well, I think that is how I feel. I am not real sure how a fish out of water really feels.

But if the feeling is difficulty breathing and only focusing on getting back to the water, then yes, that is how I feel.

All I want right now is for us to go back to our drama free lives. We were so happy sans drama.  Just a few days ago.

Just a few days ago, none of this was going on.

I am writing this while sitting on a hard examination bed, in a small bleak room at my breast specialist.  

Half naked with a flimsy paper gown on, that has to be open to the front, the ac turned down to freezing and an IV stuck in my hand with a syringe taped down to my hand.

This is all after the nurse missing the first stick of the IV in my arm and having to do it again in my hand.

Really, really??

How do you f-ing miss my vein?

This is what you do all damn day, I wanted to yell.

But I didn’t.  I didn’t say anything out loud.  I just prayed quietly in my heart hoping this somehow wasn’t real.

Before this hurrah at this office began, Eric and I already had a very rough morning.

We went to the fertility specialist to talk with her nurse about our situation.

As I said before, this is the hardest part for me from all this is the thought of not being able to have another baby.

Again, we received so much information in such a little time frame, a time frame in which tears were shed and laughs occurred.

I am not sure how to put into words how I feel about the possibility of me not being able to have another child.

It isn’t that I don’t feel 100% complete with our family of 3 because I do. And I know if Ian has to grow up without a brother or sister, he has a ton of little friends down in Austin, cousins in Fort Worth and Michigan.

It is just one of the hardest things to hear that I might not be able to give him a brother or sister. I can’t imagine my life without my sister and I look at my nieces and nephews and can’t imagine them without the other.

So there we sat, with this chart of expenses in front of us and all I can think is, how can we put a price on this decision?

Price aside, I have to figure out what my odds are going to be for me to carry a baby?

After lengthy discussion with Eric, we are both in agreement that we don’t want a sergeant to carry our child. So, all this is going to ride on what type of cancer I have. If it is estrogen driven, I am fairly certain, I will not be able to even carry a child. But then if it is DNA type, I THINK I would possibly be able to carry. And of course, no matter what type it is, a lot will depend on the chemo treatment I receive and if it throws me into early menopause.

Really? REALLY??

I might go through menopause before my mom? Nice, I guess I will be able to give her helpful!

No matter what we look at here, how we make this decision, I am certain this will be one of the most difficult decisions we will ever have to make.

I just keep thinking, what if she tells me, you won’t be able to carry a child and then by some huge miracle, I would be able to but we didn’t freeze any embryos? Or what if we freeze 10 embryos, and then I can’t carry a child?

All I can think about is what if I am leaving 10 kids frozen in time?

What are my beliefs here and how do I figure them out in 24 hours.

And I just don’t think there is anyone who can help me decide this.

Only my heart and my heart is so torn right now I don’t know what to think.

All I know is that we have to decide soon.  Like in two days soon. I either start the medicine now or I don’t.

There are so many balls in the air right now for me, Eric and us to try to catch, exam and throw back up and keep the juggling act going.

This has been a hard day.

 

 

This post was one from the very beginning of this whole cancer journey. So much as changed with me going back and reading this again.