Live Life!

I don’t come here much anymore.

More so than in the past I am finding it very hard to find the words to express what it is I feel and think in a way that does not make me sound like a neanderthal.  “Me good.  Me happy.  Me eat pizza” …Though I am not sure if neanderthal’s actually had the capability of such language…or pizza for that matter.  Well, I definitely know they didn’t have pizza, but I digress.

My thoughts get lost along the way to the tips of my fingers that long to type them out and breathe them into some sort of physical existence.

Life is good.  Really good.

I am in remission.  Finally.

Well, let me go back.   I’ve been in remission since after my first round of Hyper CVAD, however, as of this past June, I am officially OFFICIALLY….In remission.  Meaning no more chemo in whatever form.  No maintenance, no nothing.

My last bone marrow biopsy came back clean.  My Oncology team was super happy.  I’ve done extremely well.  I only have to come see them now every three months.

I have spent this past summer really trying to “live life”.   This has been my new mantra.  I like to yell it and throw my hands up in the air like I’m on a roller coaster.  Very metaphorical.

I’ve gone on trips, attended events, spent time with loved ones and appreciated every…single…moment.

Because folks, it’s all about the NOW.  and GRATITUDE.

I jumped into Burlesque with a fire and determination to, well, not suck at it.  I’ve had quite a few ladies in my town really light the fire under my ass too really be creative, to really let go, and to really just own it.  I don’t want to be another faceless burlesquer in this city, (though I have a feeling that I still probably am.)  However, I know that when I leave the stage after performing, I have put on one hell of a number and the audience has really enjoyed it.  They may not remember my name per se, but they will remember that girl who threw out the tootsie rolls or had the giant googly eyes on her ass.


I’m letting go of hooping.  Meaning, that I don’t feel it has a purpose in my life anymore. I have such conflicting feelings about this, but at this time, the feeling of disappointment, frustration and exhaustion that I feel inside the hoop outweighs the feels of freedom, connection and spirituality.  (I mean, I had felt enough of that going through cancer.) I just feel like I can’t keep up with all that is happening in the hooping community.  My body feels like it will never be able to re-learn what it once knew yet alone learn all these flippity doo’s, escalators, and off body spastic spinny spins. It’s such a shift in mindset, because I never hooped to “impress”, yet it seems like there is such pressure for there to be.   It’s a new generation of Look at Me!

Where’s the flow?

Ehhh, whatever.  Maybe I’m just old.  Get off my lawn!

I’m sure at some point I’ll probably pick it up again.   Cause that’s what I do.  I hardly ever just quit something.  Entirely.

So that’s basically it.  For now.

Doing my thing.

Living life.




Move Your Feet


Not much has been going on since my last treatment of Hyper Cvad.  Well nothing medical.

I started maintenance and everything seems to be ok.  Though I do still feel tired at times, but not the extent of what it once was. ( Go Hemoglobin!)

Other than the fatigue and my liver enzymes being slightly elevated from the oral chemo, (which I was told to stop for a few days to see if they level out or if they need to adjust the dosage.) I’ve been doing pretty good.

Actually really pretty good.

As per previous bitch and whine fests, I am still “cleaning up” cancer’s shit fest, and expect I will be cleaning up for some time.

As fleeting as it is, time is all I have these days.

I’ve been trying to incorporate some work out activity, but I’ve noticed that my legs feel stiffer when I move.  I walk with the gait of a 80 year old who has just had a hip replacement.  The backs of my ankles just feel tight and strained and unwilling to bend to the fluidity that is needed to put one foot in front of the other and walk.  It’s as if all of a sudden I am living out my nightmares of not being able to move.  More specifically, to walk.  Those dreams of feeling like my feet are cemented to the ground and it takes every ounce of will to lift them.  However, in real life I push those damn legs to do what they were evolved to do.  Move.

Because of the intensity and severity of the chemo, lack of bone density and osteoporosis has began to show in my femurs.  A regiment of Vitamin D has been added to my cache of pills I have to take on the daily.

I have been trying to incorporate more physical activities to my day.  Working out specifically or walking, though the dedication and discipline of the work outs are not sticking.  Some days I’m on it….other days I’m just too tired and would much rather lay on the couch reading and eating a box of Milk Duds.

And Milk Duds aren’t doing anything for my ass and thighs.

I’ve been hooping here and there, but nothing of great extent.  My body still feels heavy when I try to perform certain moves.  My legs especially.

Even though I have grown quite distasteful towards my physical appearance, I have decided to join in my troupe’s upcoming burlesque show.  I won’t be doing a hooping number, as I am no where up to par with my hoop abilities, so I will be doing a traditional bumps and grinds number.  I’m actually quite excited about the idea of the number, so I hope I can execute it in a fun, silly and flirty way.

Now if I could just get excited about my stomach, butt & thigh ripples, that would be even awesomer.




The Goings On.

Today I embark on round five of the chemo.   Once again my initial date for admittance was pushed back due to my counts being low, so I got the weekend off so to speak.

I learned that the type of treatment of chemo they have me on is called Hyper CVAD. It switches between two chemo regimens. Since this regimen is the odd number treatment it will be the following drugs:

Hyper is short for hyperfractionated. It means you have more than one treatment of the same drug given in a day.

Schedule A (cycles 1, 3, 5 and 7)
On the first day your nurse gives you two separate drips of cyclophosphamide 12 hours apart. They repeat this again on days two and three of treatment, so you have six doses in total. You’ll be given fluids through a drip before and after the cyclophosphamide. You may also be given a drug called mesna to help prevent bladder irritation. You start a course of dexamethasone tablets on day one, which you take for four days.
On day four you have vincristine and doxorubicin as a drip. You can usually go home the day after it finishes.
On day eleven you have vincristine again, usually in the chemotherapy day unit. You also start another four-day course of dexamethasone tablets (days 11-14).
You then have no treatment for the next week. This completes a cycle of Hyper-CVAD. Your next cycle will be Schedule B.


The last time I had the Schedule A I puked for two days? (Time becomes so relative when you are dry heaving.) Something I hadn’t experienced during the first go around of this.

However I have been feeling pretty good up to a point and hope that I will make it through Schedule  A, Round 5 with flying colors.

There is a second part to this chemo regiment as well.  Schedule B, or as I like to call them, The evens, which is what I just finished up about two and a half weeks ago.

Schedule B (cycles 2, 4, 6 and 8)

On the first day your nurse gives you methotrexate as a drip. The next day you usually start having a drug called folinic acid (Leucovorin) as a drip to reduce the side effects of methotrexate. You have it regularly with fluids until the methotrexate is out of your system.
On the second day and on the third day you have cytarabine as a drip given twice – 12 hours apart. You can usually go home after this if you are well enough and your methotrexate levels are okay. You then have no treatment for the next 18 days. This completes another cycle of Hyper-CVAD. Your next cycle will be schedule A again.
If you are having cytarabine and methotrexate by injection into the spinal fluid, your doctor or nurse will explain more about this. You usually have these on different days from the rest of your chemotherapy treatment.

My last cycle of chemo was an even (and halfway point…Hooray!)

I didn’t experience much of the side effects in the hospital during my last even round.  I had a headache before the chemo started and that was about it.

It’s when they start pulling the Methotrexate out of my body that makes me a bit nutty.  They like to see that you have gotten rid of most the Methotrexate before they send you home, and then have you continue to take the Leucovorin at home to pull out any remainder or residuals if you will.  This is when I feel like I am out my mind, cause I am on my own and don’t have the luxuries of fluids and sweet drugs dripping into my I.V.

At home I have to take 4 doses of the Leucovorin every six hours.  For some reason I get incredibly anxious and my mind starts racing about all the things I “think” I should be doing.  For instance, cleaning out the freezer.  Or reorganizing my underwear drawer.  The thoughts are almost imperative and gnawing, yet I lack the energy to really do anything.  So I sit and agonize over how I am not a productive person.

I’m not so much sure it’s the Leucovorin, as much as it’s the Methotrexlate.  Methotrexate is some serious stuff.  Once I finish up the Leucovorin, I tend to feel a lot better.  Mentally and emotionally.  Methotrexlate has the tendency to take me to some dark places.  Though for Round Four, I handled it way better than I did in Round two.

Round two I felt like I was dying.  I was so fatigued.  I also wasn’t taking the Leucovorin like I was suppose to that first day of being home.

In fact I was quite surprised how well I did with my last Even round, because those are the rounds that are the most taxing and difficult and I find myself feeling depressed and bitter over the quality of life and time that cancer has robbed from me deeply.

But this  time around I was more hip to the do’s and don’ts and was chugging along quite nicely until a few days ago when the lymph node right on the left side of the back of my head started to act up.  It wasn’t swollen, just very sore…and throbbing.  Made sleeping very difficult and because I am a side sleeper it made no difference to which side I laid on, it would just throb.  Sleep of course was interrupted, it hurt to sit up or lay down, and once again, it baffled my Dr, who could not give a good clear explanation, other than this is probably just a side effect of chemo, and you can never say with certainty why shit happens the way it does and oh hey, didn’t this happen before in a different area but once you started the chemo that round hadn’t it gone away cause of the steroids?  So maybe that will also be the case this time.

In the meantime he prescribed some lidocaine gel to help with the pain, but once applied…I felt nothing.  And I don”t mean nothing as in the lidocaine doing its job numbing up the joint….er or in this case, the lymph node.  I mean I didn’t feel the lidocaine work at all.  No tinglies…  No coolness… No numbness….Nothing.  Upon further inspection of the the drug information I read where it states this medication is ineffective on intact skin.  So a lot of good that did me.  Thanks Doc.

Luckily I had some steroids left over from a previous round, took a small dose of that and that seemed to do the trick.  You ask me I think the node was just inflamed for some dumb reason.  Maybe it sucks or is slow going at draining all the yuck from my body.  Maybe its just super sensitive to the chemo.

It’s amazing how in tune you become with your body during something like this.

Anyways where am I going with this?  I don’t know.  But there is all that jazz.

On the plus, it was figured out why I have been so fatigued and winded when I move about.  I am still anemic, so the Dr. upped my need for blood products.  Anytime I fall under my newly fixed level, I gets the blood, and let me tell you… It has made a world of difference. I feel like a vampire feeding for the first time in ages.   I have been able to get out a little bit more.  I’ve been able to do a little bit more around the house (like clean out the freezer and organize my underwear drawer.) and I even picked up my hoop here and there.  (which i must add how weak my leg muscles have become.  I can hardly shimmy up from my knees…if I can get the hoop around my knees to begin with.)

I also had another bone marrow biopsy ( not fun) but the results came back showing no cancer cells.  So it seems the chemo is doing it’s thing, and technically I am cancer “free” for now.  Of course the Dr’s won’t come out and say that I am in full remission until the treatments are done.  So kicking cancer in its dick is being accomplished.

I’m hoping, now knowing how to combat these chemo side effects a little more efficiently, that the rest of the treatments and recovery time will go by a bit smoother.  And after this treatment, there will only be 3 more left….and then two…and then none!

I know I am redundant in saying this, but I am quite antsy  in returning to a “normal” life.

And that’s not even the Metotrexlate talking.