It has taken me almost a week to get back here to give an update.  In my last post, “Does It Ever End,”  and I would suggest giving it another read to get acquainted with the two types of radiation and know what makes them different,  I talked about the next step which was supposed to be Internal Radiation (brachytherapy).   So this has been  cancelled because the plastic thing called a “sleeve”, which was supposed to be implanted, was not working out.  On the first attempt at implantation, the surgeon could not find the tumor it needed to be put on or near, which is actually good news because it  had responded to radiation and must have shrunk.  My understanding was that the sleeve was to be implanted into my cervix, but the disappearance of the tumor threw the whole operation off and they aborted it to be retried three days later.  During that attempt, the sleeve was successfully implanted but then the CT scan showed that it moved, almost like something was pushing it out of place.

So it was decided to abandon this treatment and move on the next which is to go back to External Radiation but it being a “booster” radiation.  It’s stronger, but supposed to be more finely directed and not supposed to be 30 treatments but somewhere around half, 10-15 treatments.  Tomorrow I have the Setup Appointment that is sort of a dry run so they can see if it will be directed in the right places.  After that, we set up the schedule and we’re on our way (again). After the radiation is complete, I will need more chemo (SIGH).

I’ve had kind of a break from treatments and my diarrhea side effects seem to be easing, although still a threat if I don’t keep on top of it.  The encouraging thing is that I am now only using over the counter Imodium and not the prescription, which just happens to be a controlled substance that I could “possibly” get addicted to according to my pharmacist and I would hate to have that problem because of an anti-diarrheal medication.  So, this time I am told that they can avoid exposing my bowel to the radiation.  There is a section of the bowel that hangs over the top of the uterus and that section is what has been giving me all these problems.  I know that the tumors are more towards the bottom of my uterus and in the parametrium so that is encouraging, as well.  I really don’t know much about the chemo yet as my medical oncologist wants me to make an appointment after my radiation is done, and I will do that.  I will, however, ask the radiologist if I can wait that long because it would be great to have a break between both but I need to make sure waiting is okay.

So now I get to the part where I have to make a decision to tell more of this story.  Don’t look for me in a good light.  I feel that I must, though, because doctors have a way of not being totally honest with their patients and while I’m not sure if that would be a help even if they were, I do need them to be honest with me.  All I know is that I was told one thing and to have the reality of the experience to be a traumatic one, and this is something people (patients) need to be aware of.

So I told you that the High-dose rate (HDR) brachytherapy was a bust and they could not give me that.  This is done in steps, during each appointment and I was scheduled for five appointments.  There is a CT scan and set up appointment that needs to be done before they actually start with the treatments.  This Brachytherapy is done under anesthesia, in the hospital and the CT scan and set up need to be done before they deliver the radiation, on each and every appointment.  Part 1 happens in the OR and Part 2 happens in the radiology part of the hospital.  My radiologist brings his own nurses from, what I like to call, the “Radiation Place” that is still a part of the hospital but located across the street.  So the reason for the anesthesia is that there is a “Ovoid Kit” that needs to be attached to my body….inside my body.  Ugh hate to say it like this, but this whole thing is emotional.  Okay so here is a brief description:

How it works

With this form of brachytherapy, tiny, hollow catheters are temporarily inserted directly into a tumor. Before each treatment, we check the position of the catheters with millimeter precision.

Next, a series of radioactive pellets are inserted into each catheter. Computer guidance controls (1) how far the pellet goes into the catheter to precisely target the location of tumors, and (2) how long the pellet stays in the catheter to release its radiation dose.

With a few well-placed catheters, HDR brachytherapy can provide a precise treatment that takes only a few minutes. Brachytherapy offers a quicker, more effective type of radiation treatment for some patients. For many cancer types, the entire brachytherapy treatment takes one to two days, instead of five to seven weeks for external beam radiation therapy (EBRT). Depending on the type and stage of cancer, brachytherapy may be combined with other treatments, which can vary treatment times.

Well, I don’t want to get to the gory details… and those who know me, know I CAN describe them rather accurately in detail…. I’m just going to say that twice doctors have told me that I was going to experience a “little discomfort” and instead the experience was excruciatingly painful and I ended up crying like a baby.  These two times were only 3 days apart and I’m sure the first experience influenced the severity of the second.  A big factor, something both those doctors knew, is that the tissues being treated with radiation were “radiated.”  This is something THEY told ME beforehand in the context of a possible hysterectomy after chemo and radiation.

These treatments change the tissue.  It gets burned or “fried,” there is a lot of scarring, and the tissue gets VERY sensitive, painful even.  Circulation in those tissues is not like that of healthy tissue, which means that after a surgery, it would be difficult for my body to heal itself with compromised blood flow to those tissues.  See?  I can understand that.  Additionally, I am diabetic and healing, in general, is slower than in a healthier person.  To my body’s credit, though, thus far, diabetically speaking, I heal just fine.

This was a difficult time for more reasons.  With all this came the realization that I’m not done yet.  I was hoping that the end of this year would signal the start of healing my body and getting my life back.  Basically, I really need to assume some responsibility in this household and DO something.  Don’t get me wrong, though.  I am well aware that this takes time and that I need to give myself all the time I need to beat this cancer and that getting my body back to being healthy could take months longer.  I know that.  I was hoping to visit family during this holiday season, but I’ll be restarting the radiation and then chemo.  While I take chemo, I’ll be at a high risk for getting sick and/or an infection  which would be literally a life-threatening situation.  During my first chemo, I totally isolated myself from everyone and every thing.  I had to be extra careful and I was, and I feel that I got through all that by the skin of my pants, to be quite honest.

This brings me down, though I am doing better and just being here talking to all of you is helping and will help me get back the mindset I need to undertake all this again.  Writing does me good.  I missed a LOT this year, from my Great Niece’s milestones, her Christening and 1st birthday party, to BBQ’s, to family and friends reunions.  I gave up volunteering at our church and serving at mass, and now the end of year holidays, including my plans to volunteer at our Church Bazaar might not come to pass.  Our family has been through a lot this past year or so and had many ups and downs, but mainly downs.  A good thing coming tomorrow, though, is a Halloween party I will take my son to.  It will be a chance to see people we’ve not seen in over a year and that’s good.  I am guessing, however, that immediately after I will be again having the radiation and praying the diarrhea side effects stay away.  If not, Thanksgiving is definitely a bust.  Then December will probably bring the chemo.  Last time it was a treatment every 21 days, and I had 3 treatments.  This next time, I don’t know.  I can’t predict if it will be the same routine or different.

I am hoping that I’ve done a good job explaining all this because as time goes by, my lack of focus gets easier and easier to just let happen.  Before it was all so unknown and I was eager to start treatment, and when it did start, I was happy about it and looking forward to it.  Crazy, huh?  Now, I’m afraid not knowing if my body will hold it’s own, but also to take on the committment to get myself into the car and over there every single day.  They keep telling me that my body tolerated treatment “very” well, but my thoughts are, “How long is that going to last?”  I can’t help thinking like that; but I will start reminding myself that with God, anything is possible.  I don’t know how, but we’ll get through this.  I know this post sounds like a lot of complaining and yeah, it is, but all of this plays a part in pulling myself together and up again to face what is coming next.  Better than talking to the wall, ya know? LOL….

I have been a bad patient and I have been an excellent patient… and more the good patient.  I’ve had to realize that I am NOT a perfect patient.  I can’t be.  I’ve spent more than half my life shutting up and holding things inside of me just to be polite and be the good girl.  Well, when I found my voice in my later thirties or so, nobody, and I mean NOBODY can or will shut me up.

“The Fuse”
Jackson Browne
1976, The Pretender Album
It’s coming from so far away
It’s hard to say for sure
Whether what I hear is music or the wind
Through an open door
There’s a fire high in the empty sky
Where the sound meets the shore
There’s a long distance loneliness
Rolling out over the desert floorAnd the years that I spent lost in the mystery
Fall away leaving only the sound of the drum
Like a part of me
It speaks to the heart of me
Forget what life used to be
You are what you choose to be
It’s whatever it is you see
That life will become

Whatever it is you might think you have
You have nothing to lose
Through every dead and living thing
Time runs like a fuse
And the fuse is burning
And the earth is turning

Though the years give way to uncertainty
And the fear of living for nothing strangles the will
There’s a part of me
That speaks to the heart of me
Though sometimes it’s hard to see
It’s never far from me
Alive in eternity
That nothing can kill

Oh Lord
Are there really people starving still?
Look out beyond the walls of Babylon
How long will their needs go unfilled
I want to say right now I’m going to be around
I’m going to be around
When the walls and towers are crumbling
When the towers are tumbling down
And I will tune my spirit to the gentle sound
I want to hear the sound
Of the waters lapping on a higher ground
Of the children laughing