Sunday, October 9, 2011

doo whack a doo whack a doooo....

Connor's Battle:
 yeah...last week felt a lot like this!
Well, the plaque of locusts that descended upon our house last week seems finally to have started to lift, and with the sun shining outside, I am almost feeling back to normal.  Well, CLOSER to normal anyway. The week started off not so great, but by the time Thursday rolled around, I figured it was smooth sailing through the weekend and up to my 3rd chemo treatment on Monday.  Alas, I was sadly mistaken.

Thursday's appt with Dr. Booby went fairly well, the catch being that I started my period....(excuse me!??).....that morning. One week late for the first time in, um, probably 9 years.  I had assumed that last time was the, ahem, LAST time, at least for awhile, since side effects of chemo include loss of side effect I'm more than happy to have for the next several months! It may just be putting in a last hurrah, it certainly was acting strange and erratically, which is really not how you want your period to act, if you have to get it during chemo. Anyway, the only reason I bring this up is to explain, in part, the blubbering, crying, soggy mass of goo I turned into as soon as Dr. Booby's well meaning nurse bubbled into the room and asked me how things were going.

Honestly, I was dreading going to the appointment, but hubs and I wanted to make sure that everyone was on the same page as far as what to expect from that end of the whole process. Right now, I don't want anyone putting any more foreign bodies inside me, sticking me with needles, or doing anything that involves poking or prodding or expanding.  We resolved in the end to continue on this course, that is, doing nothing with the robo-boob at the moment, and meeting up again at the end of November to see if I felt like starting to get some 50cc fills to get robo-boob ready for the time when I can bid it "adieu".  As much as I DON'T want anyone touching me right now, I also do NOT want to live with robo-boob any longer than I have to, so with an expected 8 week prep time to get the tissue expanded enough for reconstruction, I could be rid of it maybe by March at the earliest.  Dr. Booby reminded me that THIS part was supposed to be the fun part to look forward to, a vibe I am definitely not feeling at the moment, but I feel much better after talking with him and listening to my various options.  Alas, what was to follow made the discomfort of robo-boob
so, so trivial......

2 versions of my Baldie beanies...
the pink one is STILL too big
and needing to be ripped back
Friday, I woke up feeling the UTI flaring a bit again, despite the daily D-Mannose doses, but my fever was gone, and my sore throat and swollen glands were subsiding.  I was looking forward to having a lovely weekend, and since my son was still at 5th grade camp until the afternoon, I decided to lay low and finish watching the 2nd season of Joss Whedon's "Dollhouse" on Netflix, and work on increasing my stash of baldie beanies.

I noticed my left eye was gumming up and would not stop tearing, but I attributed that to allergies, the unseasonably warm weather, and the fact that my house has not been thoroughly cleaned since May of this year. My major concern was that the constant wiping of the eye was going to rub out my rapidly thinning eyelashes, which was bumming me out. I went to bed Friday night with an oozy eye and a right ankle that was a little stiff.

Saturday morning, I woke up with both eyes crusted closed.  Additionally, as I tried to get out of bed, I noticed that the pain in my ankle was so bad, I couldn't bear any weight on it.  My son - who had sneaked into our bed at some point in the wee hours of the morning to snuggle - ended up having to assist me to hobble into the bathroom where I had to soak my eyes with a warm wet washcloth until I could get them open!  No denying at this point that the inevitable had occurred...the dreaded pink both eyes!  Also alarming was that my ankle and knees had ballooned overnight in what I could only assume was a Rheumatoid Arthritis flare....something I had hoped and prayed that I would not have to deal with since I was actively working to obliterate my immune system.
Darth Maul impersonation. 

Luckily, my primary care physician's office has Saturday hours, so I hobbled in and got meds for the UTI and the pink eyes, and was told to take some advil for the joint swelling.  2 days and counting until Chemo, and I certainly did NOT want to be feeling crappy even before I went for treatment, so I hoped the meds would kick in quickly and do their job.
Hubs joked that I looked like one of those people in the horror movies about Ebola, where their eyes melt and fall out of their head.  I have to admit that option sounded more appealing than the throbbing, crusty eyeballs that I was dealing with!

Monday, I hobbled off to my chemo appointment with my hubs, not at all looking forward to dealing with Chemo after-effects, UTI, pink-eye and swollen joints, but resigned to my fate.  Got my blood drawn, and then went in to see the Onc.  I told him I had been having some trouble, and when I looked up at him with my eyes of blood, he actually jumped a little and let out a startled "Whoa!".  Not an encouraging sign from a doctor who deals with sick and dying patients, I must say.  At this point, he told me that we shouldn't do chemo with my eyes looking like Darth Maul.  I asked him about my swollen joints and if I could go back on my Enbrel injections for the inflammation.  He told me that Enbrel was 'contraindicated with chemotherapy' and that we would have to manage the inflammation with steroids for the remainder of the chemo treatments.

UGH- Steroids!

Smuggling golf balls in my ankles
What I don't understand is how my immune system has any OOMPH left in it to attack my joints when I'm actively killing my immune system every three weeks with chemo?  Am I getting punk'd from the universe?  Is this my body playing punchies with me? "You attack me, and I WILL retaliate!"  What the Cabbage, man?  I have been feeling crappy enough just dealing with the side effects of the chemo, but I have still managed to go to two consecutive weeks of yoga class.  Throwing in a relapse of RA is just NOT cool.

I'm not sure which was worse: bracing myself for chemo when I felt really bad or going there and getting turned away from chemo.  Now my schedule is off a week, at least, which means that I will not get my last chemo treatment the day after Christmas, but will go into January --- IF--- I don't have any more delays.  It also means that I'm still only 2 treatments down, that is, only halfway through the first cycle, versus, 3/4 of the way done.  It's a small thing, one quarter; but the greater effect on the psyche is enormous when you count every day how many more days and how many more treatments you have to get through.  Overall, and with the benefit of hindsight, it was a relief to get a brief reprieve and have an extra week to recover, recoup and fortify myself for the next round.

(you are saying to yourself right! poor girl, all this crap she had to deal with really sucks rocks...but wait, it's NOT done yet!)

Pretty much immobilized for the remainder of Monday and Tuesday, I continued to work through our Netflix instant queue and checked off the entire first season of "Stormchasers" while working on my knitting. Tuesday evening, trying to get a load of laundry in the wash, I noticed that I had a 'hitch' in my left hip that twinged every time I bent over to put another handful of clothes in the machine.  I did some yoga stretches before bed to try to work it out a bit, including Viparita Khorani (legs up the wall) to try and help the swelling in my joints.

Wednesday morning, though, the shit really hit the fan.  I woke up and tried to get out of bed.  There was searing, blinding pain shooting down my left hip and leg. I couldn't sit up, I couldn't roll over, I couldn't do anything. Just laying there doing nothing my hip throbbed.  I was sobbing from the pain when my hubby heard me from his third floor home office and came down to check on me. He finally managed to get me out of bed and into the bathroom where another trial of pain awaited me. Any action of squatting, sitting, bending, or moving any part of my lower half resulted in excruciating pain. I think B literally had to pull me off the toilet because my body was rebelling against any movement at all.  So...skipping over the next few hours of sobbing, liberal dosing of percoset and unconsciousness, I made another trip BACK to my Primary Care physician office.  She pronounced sciatic nerve flare up and gave me a shot of steroid in my backside then gave me a pamphlet of exercises (aka yoga poses I already know and do) to stretch out the piriformis muscle and hip flexors.  Oh, more importantly, refilled my bottle of Percoset, since I had managed to finish off the remnants from my mastectomy. (just to prove I am NOT a drug addict - I had like10 percoset left over from my mastectomy in July, and just broke them out now for relief).

Hobbled back home and spent the rest of the week in semi-unconscious drug induced stupor whenever possible.  By Friday, the steroid injection seemed to have started to work on the sciatic issue and I was moving in and out of bed with a little less pain, the blood eyes had faded away and my UTI seemed to have cleared up.  Unfortunately, the steroids seem to be doing nothing for the joint inflammation.

My niece, Miss Ellie getting
ready to climb over the pew
 I was mobile enough (i.e. drugged up) to go to my SIL's wedding Saturday night and to see my new 4 day old niece as well!  I even got to hold her a little bit (of course not as long as I like!)  The wedding was beautiful, the weather was amazing, and most importantly, I was able to GET OUT OF THE HOUSE!  I got to see all my in-laws, my 7 nieces and nephews and feel like I was a part of the land of the living for a while.

Niece # 5- Sara Elizabeth-born Tuesday!

 I realized on the way home from the wedding reception that probably the worst part of this past week was the feeling of isolation that came upon me. It's the dark nights of the soul, when I am laying in bed alone that I feel at my weakest,  when I feel like I can't bear to continue the fight, not like this, so beaten down physically and emotionally.  This journey seems so long and one-sided, there must be something on the other side that will make it all worthwhile, but I haven't been able to discern it yet.  I was watching the end of LoTR, part 3 with my son Friday night, and Frodo was giving a little speech that really spoke to me. (and also to prove, that yes, I truly AM a geek for quoting Frodo in my blog!)

"Thirteen months to the day since Gandalf sent us on our long journey... we found ourselves looking upon a familiar sight. We were home. How do you pick up the threads of an old life? How do you go on... when in your heart you begin to understand... there is no going back? There are some things that time cannot mend... some hurts that go too deep... that have taken hold."

I'm trying to figure out how I will ever pick up the threads of my old life when I am done. Even if I wanted to pick up my old life where I left back in May, before 'the lump', I cannot.

I am changed forever. The part that has yet to be revealed to me is what I have changed into.

Om shanti...shanti...shanti.

No comments:

Post a Comment

I LOVE visitors! Please leave a comment...