Aching

ache  (eɪk)
— vb
1.	to feel, suffer, or be the source of a continuous dull pain
2.	to suffer mental anguish
— n
3.	a continuous dull pain Most days I wake up before the sun rises. I'm like sludge in the morning; groggily preparing a cup of coffee, shuffling around in slipper peds and whatever random clothes I threw on over my jammies in the dark. I used to sleep well and late. At least later. But my morning disposition has always been the same. I'm a vision to behold; disheveled clothing, yesterday's makeup smudged across my face, bride-of-Frankenstein's hair (ok - so maybe that's different now-a-days). If you'd asked me last November when I looked my worst, I'd have told you it was in the mornings. But even then, when I was feeling silly or needed to perk myself up, or laugh, I'd look in the mirror, bat my eyelashes, pout my lips and pretend to be sexy. That doesn't happen anymore. Ever. If you are on Facebook with me, you know that my mom, Bob and Doug surprised me at the infusion center with cake, flowers, a banner, gifts, and a "last chemo" sign on the morning of my last treatment. I was so impressed because it really is hard to surprise me and I had NO CLUE. Best nursing team ever!! My last chemo was less eventful than I'd expected and I am SO grateful for that! Most of the "normal" side effects happened, but the bone pain wasn't as severe and didn't last as long. The joint pains are still hanging around, but even they aren't happening as often (though the severity is still there  - and it sucks! Nothing like a severe jolting pain in your hip joint to stop you in your tracks). I did spend a full day and a half in bed trying to remain perfectly still with no light and no sound, desperately trying to avoid vomiting again and again. I was only somewhat successful. The coating in my mouth was particularly awful this time and I struggled a lot in the first few days after treatment, trying to figure out what to drink and eat. I'm showing signs of lymphedema in my left arm and hand (treatment for that will start June 3rd). Nearly two weeks post-final-infusion and I'm feeling pretty good, physically. Really just the normal aches and pains I've grown accustomed to. It's been 6 months and 3 days since my diagnosis. In that time, I've had 3 surgical procedures, all of which have left scars. I've endured the chemo and ALL of the side effects. I've had painful physical therapy (which was well worth it). I've had shingles and pneumonia. I have lost the hair on my head, most of my body, and now on my face (most of my eyelashes are gone now and my eyebrows are cloaked in invisibility mode). Cancer has affected me physically in these ways. It's also affected my cognitive abilities. Chemo brain is real. I'm so forgetful now, easily distracted, can't think of the words I want to say when having a conversation. It took a lot of work and time to try and clear the fog so I could finish up my end of the semester tasks. I know. Really, I know. I am blessed in countless ways. I thank God for those blessings daily, usually starting each morning with a "Thank you for another day." It's just hard, friends. It's hard to look in the mirror and see this strange face looking back at me. It's hard to stare at these scars, to feel them even when they aren't visible. It's hard to get dressed every day in clothes that don't fit right because I've gained 30 pounds in 6 months and there is a 4-inch gap where my cleavage used to be (ya know, because my boobs-on-the-way have made their way into my armpits instead of behaving and facing forward). It's hard to go out in public and feel everyone's eyes on me, wondering what's wrong with me, wondering why I look so far from "normal."  A few weeks ago, at Costco, the man in line in front of me stared at me so long that I nearly confronted him (and I'm NOT the confrontational type). At lunch last weekend, every diner in the restaurant stopped and watched me as I walked to the table, and then again as I walked out after we ate. Just this evening, one of my daughter's friends from preschool told me "You look different. You look like somebody's grandma." The emotional anguish of losing any and all of the things that once made me feel beautiful may be among the hardest of cancer's punches. I'm resilient. I get that. My hair will come back. I have no idea what it will look like, but it will come back and I will be happy with whatever I get. I will work hard to lose the weight I've gained. It will be a long fought battle because of the physical limitations I face, but I will get back to a comfortable weight. And, by January of 2015, my foobs (fake boobs) will look normal, at least under clothing. In the meantime, I ache for normal. Right about now, I'd give anything to feel attractive, to look in the mirror, pout my lips, bat my... oh-wait-I-don't-have-those-anymore.

Last Chemo Today!!

I can't sleep. I woke up to take the last antiviral (Famciclovir) for my shingles (which is not gone, but well on its way toward healing). That was around 4am. Since then, I've been on Pinterest trying to quiet the anxiety in my head with recipes and other inspiration. It's not working.

My mind is racing. The anticipation of this last dose of chemo feels a lot like the anticipation of the first. There is so much more of the unknown ahead. Will the exhaustion be worse, or can I manage? I feel so much stronger going in for this round because of the extra 12 days I had to heal. My blood counts are good, only my red blood cell count is a hair lower than the normal range. My appetite is great (probably too great if you ask my scale). The pain is mostly gone, just that annoying bruised feeling that remains in my lower back, and occasional twinges from the shingles which really don't even rate as painful in comparison to what I've experienced these past few months. Anxious anticipation leads to the playlist-on-repeat set of questions in my head...

Will the side effects be worse this time? Really worse or just a little? I have less steroids in my system to protect me from the Taxotere, which has been the bane of my chemo existence; it's been the cause of MANY of my side effects. Will the little bit of hair regrowth find its way down the drain? Will the shingles get worse, or come back again as I'm healing? Will/what will I be able to eat this time? Drink this time? Is there really enough left to watch on Netflix to keep me busy these next 10 days? Oh, the nagging questions.... 

I guess we'll know soon enough. My appointment is at 9am. 3 hours to go....

The Final (Chemo) Countdown

https://www.youtube.com/watch?v=9jK-NcRmVcw   C'mon, click the link. You know you want to listen to Europe's The Final Countdown while you read this.


After much discussion (he spent just short of an hour talking with us this morning) with Dr. Kotz, we've decided that I will indeed have the 6th infusion of chemo, but it will be on Monday instead of today. We're going to give the shingles a bit more time to heal. 5 days, to be exact.


The shingles got a bit worse after I wrote my last blog entry. They started to sting quite a bit more, and itch like crazy (and there were more of them, but I was told to expect it to get worse before it got better). Thanks to my wonderful husband, I had relief in the form of Calamine lotion first thing Tuesday morning. Look at this grossness:

Again, little sleep was to be had. Normally I sleep in a position somewhere between belly and side. I can't sleep on my belly because of the expanders (they feel like rocks). My sides are tender because of the expanders as well (they poke). Now, with the edition of shingles on my head and ear, sleeping on my back (which was already difficult for me) is out too. Doug suggested I get an inverter, hang upside down by my toe nails. I half think he's serious. My sleep disruption = his sleep disruption.


Anyway, this too shall pass. At least the shingles aren't in a place where they rub against clothing or cause any other issues.


So, the countdown has begun. The final 5 days until my final chemo. And then, GOOD RIDDANCE CHEMO! My last chemo will end up being 12 days late, but better late than never (really, how many clichés can I pack into one blog post? Maybe a challenge I ought to try sometime.). Also, it's going to be icky. I can only take 1/2 the usual dosage of steroids before and after and he's cutting the steroids they give me during the infusion. The steroids help protect me against some of the side effects from the Taxotere, and the Taxotere has been the likely cause of most of my troubles. Whatever. I'll go through it one more time. ONE MORE TIME. And then I'll move on to other treatments. Speaking of which, Dr. Kotz wants me to go ahead and get the hysterectomy this summer, instead of waiting until the fall. He recalled a patient whose ultrasounds all came back negative but when she finally got around to getting her ovaries removed, there was cancer. A lot of cancer. He doesn't want me to wait unnecessarily. I found that convincing.


Since it is the end of the semester, and I do have mounds of student papers to grade, I'll take the extra 5 days with gratitude.


I'll leave you with this picture of my meds. These are almost all of the meds I've taken since surgery. The top row is almost entirely narcotics. Yuck! I'm so ready to be done with all of these!!!

To treat, or not to treat?

Friends, I'm feeling good. No, really. I have a little pain still near my sacrum. At this point, it just feels like I've bruised my tailbone, which, when compared with the pain I've grown accustomed to, really isn't all that bad.


My hair is just barely starting to grow back. I have small, blonde hairs on one leg and I feel like the fuzz on the back of my head is fuzzier. If I get treatment #6, it's likely I'll lose more hair, or at least the regrowth. Doug and I joked about the hair growing on my legs. I was so excited to see it. He's convinced I'll never shave my legs again. He may be right. =)


Over the weekend, I developed a rash on my head, which spread to my face. By Sunday night, I was convinced it was a staph infection. I went to the doctor this morning and was informed it's shingles. Dr. Kotz said if it was any higher up on my face, I would've had to go to the eye doctor for a shot in my eye. Thank GOD for little victories. Anyway, if you are pregnant, or if you haven't had chicken pox or the chicken pox vaccine, then you need to stay away from me. The shingles don't hurt much, yet. My hope is that I've started the meds for it early enough that they won't become too painful. Right now it just feels like little tiny stabs in and around my ear.


For now, all the scans I was scheduled for (CT of Abdomen & Bone Scan) are cancelled until further notice. I will see Dr. Kotz on Wednesday, but still no decision yet on whether or not I will get treatment #6. I can't take the steroids I usually take before and after chemo b/c of the shingles. Dr. Kotz said we still have options:

1. No 6th treatment, which means I would start radiation next week.
2. Treat without the Taxotere.
3. Regular treatment, worse side effects b/c I wouldn't have had the steroids.

We'll see....