Final Chemo-Girl Blog

The treatment process is OVER . . . WOOT-WOOT!

   All right, reminders remain. A large portion of my upper abdomen is splotchy with mottled skin, and my new hair-do is approximately an 1/8 of an inch of fuzz (but, I’m going with cute, so don’t burst my bubble on that), and my finger and toe nails still look bruised and alternately white-to-greyish,  but I HAVE PLANS baby! None of them involve an immediate mani/pedi (don’t ask), but I have FUTURE plans, LIFE time plans, WRITING plans. (Insert another woot-woot here.)
   The last few weeks have been, apparently, so anticlimactic that there hasn’t been a writer’s motivating moment to spark this final post. I’ve been busy though . . . in ways that show me I’m back (or still) in the Game Of Life. I’m navigating my daughter’s busy life at full throttle (her big annual Ice Show, Power of The Pen competition-she’s progressed to State level, her invitation to compete in the orchestra’s Music In The Park competition at Cedar Point, keeping up with her Bat-Mitzvah Club friends, running for a new office in Student Council, 5 skating tests in one day followed by a school awards ceremony, and Oy, her up-coming summer plans). Exhausting as it all is, I keep cheering “Rock IT OUT” because, as I have now been schooled, life is short . . . even without an early death.
   This journey has been amazing on so many levels. For one thing, I’ve managed to learn more than any pamphlet, article, or book has ever offered regarding life altering experiences. True, I was noticing my education as treatment plowed along, but here at the end of the initial journey, wow. There’s a lot more of the experience still being absorbed.
   For one thing, the more tasks you can take on, the richer your whole day is. We seem to want to have clear schedules and nothing to do, but what I REALLY want is longer lists and more urgency! I crave crucial duties and IMPORTANT activities and critical assignments. And I can make them up as I start my day. Ahh . . . my days. The list can begin with anything, but if your family needs groceries, that can be crucial!!!! Especially if you weren’t able to go get groceries 3 months ago. It’s true that I felt really important to my family when they were taking care of me, but now that I can do something to elevate their comfort I feel VITAL.
   Important and vital are two very different things for me these days. Personal health is one thing, community health is another, and national relations are a whole different kind of health.
    It becomes more clear to me everyday that my cancer coincided with a deeper cancer in the structure of our government, and, the general public’s civility.  Currently I’m panicking that our president might be experiencing an early death of another nature (or the same, hard to tell). Criticism might just kill our president, and we should all be aware that unwarranted criticism can be deadly to any of us.
   I have some thoughts on how we are treating each other . . . and on how we are being treated by our representatives, and I’m wondering if anyone else out there would like to see more open-mindedness, and more honesty from both parties, from the ground up. In the interest of discovery to this end, I’ve begun a different blog. If you’ve liked my writing, and if you have any curiosity about any possible commonality of interests between the various political parties here in the United States, please visit me at QuickTrumpTrends I encourage you to leave notes or questions regarding any thoughts that arise as you read!
   And now, for my farewell to ChemoGirl (and Radio-Active ChemoGirl), I thought I leave you with a few visual comparisons from the beginning of my journey until now.
The season at the beginning:
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The season now:
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Me at the beginning:
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Me now:

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I used to think that without coloring my hair I was “salt & pepper.” Umm, correction. But hey, the above shrub had a lot more color before too! 🙂

So anyhow . . . TA-DAA! I’m done!

Don’t forget to visit the other site if you’re interested – QuickTrumpTrends, and thanks for being part of this journey with me, it means more than I can possibly say.

Bye now.

5 Weeks Into Radioactivity . . . stand back!

 

   I believe I have reached the stage that I can now read in bed without a nightlight.
   Alright, this is hard to confirm as the days are getting longer and who stays up past 8:30? Okay, everyone in my house except me. Remind me to ask my husband if he reads without a nightlight just laying next to me. Anyhow . . .
   Seriously — and conversely. My skin is not glowing, but rather darkening. Not a sun enriched heightening of color, like a “tell-tale rose” that speaks of unintended exposure, or even “really red due to carelessly neglectful over-exposure,” but some spots are dark purple, more like the “help! I just used the oil in my sauté pan for a moisturizer! Call 911!” kind of dark.
   Amusing side note: The staff at the Radiation Center are not allowed to refer to the affected area as Radiation Burn. It is “Skin that is reacting to the treatment.” There are no burns reported, simply skin that has reacted moderately or severely. Tell that to my clavicle.
   On the whole, I believe I am actually fortunate that my worst spots are not in fact open sores. I understand that this happens on occasion and I seem to have escaped that fate. I am not, however, going to ask sisters for an “Amen” for another week. Why jinx it? While I do have another week, the technicians assure me that my current “worst” spots are no longer in the line of fire, for which my worst spots thank them and the doctor endlessly.
   One of the hazards of this phase that is unavoidable, no matter the severity of your “affected skin,” is the discomfort, which can skew into out-right-pain, caused by shoulder straps. Your radiation Doctor, Nurse, or Assistant should be able to provide a soft skin covering that will protect any area being “rubbed” or agitated, which can be very helpful, but it involves an adhesive, which comes with its own problems. Keep in mind one may consider going braless instead, but even if one does so, don’t forget about seat-belts and the shoulder straps on those.
   This week I discovered a very satisfactory solution for most strap related discomfort. By first putting on my softest T-shirt and wearing my bra over that, I’ve been able to relieve not only the shoulder strap issue, but the also the bra’s uncomfortable elastic band that encompasses the circumference of the torso underneath the breasts. The T-shirt provides a great deal of relief.
   As I approach the finish line I find myself more mentally and emotionally exhausted than physically so. I’m tired of my own fragility and lack of muscle confidence, but this fatigue ironically comes with the engagement of returning strength which brings a fresh spark and an uplifting energy that can honestly be called joy. Sweet . . . in a subdued sort of way.
   For example, Sunday I rode a borrowed lease horse for a 2 hour ride. This was not my regular gelding whom I trust with no boundaries. My guy Brody has a bruised hoof. On the other hand, my borrowed mount had the capacity to elevate my anxiety to abnormal levels. However, two really good friends allowed for my “limited ability to over-ride” the bad behavior of my borrowed mount, and his tendency to kick and fuss if he was challenged for the lead at a trot or canter, and they ended up needing to test their own skills to master their mounts as we traversed 6 miles on horseback together. The up-side of the “bad boy” is that he has really nice gaits at the trot and canter, when he isn’t bucking because he’s not allowed to gallop past the front-runner.
   Allowed to rule in front of the pack, he was a wonderful ride. Although I regretted terribly what it cost my fellow riders, who did not complain about what had to be their diminished enjoyment of the ride.
   The kindness of my friends, of their willingness to hold their mounts in check despite the fact that one of their mounts is much faster at the trot, and the other easily out canters the bad boy, thereby forcing protests from each of those horses at a physical battle level, was an overwhelmingly, viscerally acute experience. Still, the whole episode gave me both deep gratitude that I could cautiously ride a spirited horse, and grave humility over my friends display that my fear of the unexpected in my current state was more important to them than their own safety-comfort levels.
   How wonderful are they? How wonderful that I can ride again? How wonderful is life?
Now, for the reveal of my moderately reacting skin, or what I prefer to refer to as my obligatory chest shots:
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End of Week 3
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End of Week 4
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End of Week 5
Only 1 week left! Hallelujah. Hey! Note the return of the eyebrow! 🙂

Three Weeks of Radiation

Almost 3 weeks in to my new RadioActive life and this is very different from the 3 days of my previous post. First of all, I can now see and feel the burn. Currently, it is more like a localized sunburn, which is certainly manageable. More on that later. For anyone who will need to embark on this journey, and for anyone who may support that person, I really have to back wing a bit to the Chemo effects.

    I know, you don’t need to tell me that you didn’t want to hear that, because as I’m living it, I didn’t want to have to either do that or tell you. BUT, it’s not really horrible, it’s just sort of that Chemo is still shaking the mud off its feet on my threshold. I want to emphasize that there’s this general perception with Chemo Treatments being over, the cancer patient is “all done” with Chemo, and, as you have already guessed, I’m here to tell you that’s simply something we all want to believe.
    When last I wrote, I’d stated that I was on “the utter brink of loosing 6 nails,” referring to both toe and finger nails. I now revise that. I just lost 2/3’s of my right thumb nail, and for the 5 others, I’m moving their eventual departure from “utter brink” to “very likely near future” (at this time I’m giving it a month).  Currently I’m experiencing a slight increase in the rate of new growth (I’m taking biotin and zinc to help this), and I believe the worst 3 nails left will crack off between 3/4 and 1/2 of the way down. Oddly, this seems very okay to me. I mean honestly, how much better does that come off in your own imagination? No nail vs partial nail. Note to self: tell doctor you’ve added biotin and zinc to your protocol, and remember to let readers know if that was okay, or some kind of blunder.
    Now other than that, 2 weeks ago I tried to start up my old workout and was exhausted after 2 minutes of stretching and 90 crunches. Remember this was 1 month after my last Chemo! I was terribly crushed and disappointed with myself. What kind of sorry state had I allowed myself to fall into? Even 2 months into Chemo I was doing 2-3 minutes of stretching, 150 crunches, and 5-10 minutes of brisk walking. So, two weeks ago, a month away from Chemo, I was beginning to feel better in general, what, oh what, could have happened?
    Here is a happier note. My body’s response two weeks ago was due to the continued effects of massive and destructive chemicals that were still swimming gaily through my muscle tissues. I had stopped working out because it didn’t feel better, it felt worse, and that was exactly as depressing 6 weeks before when I stopped, as my attempted return to it 2 weeks ago had been. With virtually no disciplined exercise since then, yesterday morning I did 3 minutes of stretching, 140 crunches, 50 “bicycles,” 5 minutes of arm weight lifts, 3 minutes of jogging, and 5 minutes of brisk walking. Today I matched that.
    Okay, I had to push, but my body let me push, and it felt good. Hallelujah. Hallel. Before this cancer thing started, I was used to a 20 minute workout followed by a ten minute walk. I’m more than halfway back baby. Please note: I’m not quite 2 months out of Chemo, and I’m not quite 1/2 way back to a mild workout, and I was in pretty good shape to begin with. Further note: I still really want to retire earlier in the evening than I ever have in my entire life, with the possible exception of infancy. Chemo is receding, it isn’t done with me.
 Which brings me back to Radiation! (yahoo) Have I mentioned that this treatment is 5 days a week? Yay. Okay, so it’s pretty much daily, but it has the advantage of getting me out of the house everyday. There’s that. AND it gets me motivated to workout early which now gives me more energy, not less, and I’m dressed and feeling quite human for most daylight hours.
   “What,” people ask me, “is Radiation like? What do they do?” I once thought I’d stand in front of a “Radiation Machine” and hold a position, and move slightly, and hold another position. However, what they have now is a narrow table, much like an operating table, that they add incliners and bolsters to so that they can position you at the best (for them) angles. The table raises and lowers and shifts back and forth. The Radiation Equipment then also moves, back and forth, side to side, up and around, maybe 3/4 of a circle to gain maximum access around the table.
    On the ceiling over the table they’ve installed a plexiglass light panel with the image of a beautiful view of tree branches in bloom, so you can have the “experience” of laying under a cherry tree on a warm spring day while you try not to think about laying partially exposed to several technicians in a chilly room. Of course you’re wearing a hospital wrap that by necessity is untied, and it amuses me endlessly that one technician or another will aid your modesty by securing the wrap so it doesn’t expose more of you than needed. It’s really a kind gesture. I’ve passed that level of concern, but it really seems to make them feel better, and I thank them.
    So, I’m almost 3 weeks in, and the burn is entirely manageable so far. This is because they give you “Radia Gel, Hydrogel Wound Dressing.” Please don’t scan over the words “Radia” or “wound” too quickly. That would be a disservice to the fine makers of this gel at Carrington Labs. I’m delighted to report that my current level of redness does not seem in anyway to be a wound at this point, I nevertheless suggest, if you ever have it handed to you by a doctor when it’s covered by your health care provider, don’t skimp on the Radia Gel, by which I mean — I suggest you not be frugal with it. I mean use it up. Go ahead and ask for more, they encourage that.  Just saying.
   Seriously. Use it before you think you need it. Liberally.
   Have I understated that? I feel like the idiot I was when I moved to Florida and was constantly reminded by friends, “Don’t forget to put on Sun-Screen,” and my olive-complected-Italian-from-my-mother’s-side-skinned-self thought “I never burn.” Well of course I burned, why do you ask?
    Only, with radiation, I didn’t think it would never burn, I just thought I didn’t need the gel until I noticed a burn. My good doctor told me twice, quite clearly, that I should use it BEFORE that happened, and thank g-d I listened the second time. But I’m thinking I didn’t use it soon enough, and I didn’t apply it thick enough. Just saying. Note to you Future-Radiation-Patients: The first time they ask you if you need more gel (and you don’t), ask for more anyway and try to stay ahead of them from that point on.
    Side note: The technicians, with a seriously important job to do, will tell you not to apply too much to the stickered marks in the treatment area. It APPEARS to me that the stickers may provide some protection for the skin, but DO apply it around the stickers in a safe way, and by safe, I mean, as close to the stickers as you can get without removing them. Like, right up to the edges.
    Everything I’ve told you so far is true, for me. Don’t hesitate to share with me what is true for you or the loved one you support. I’ve learned so much from friends. Like, I have a mild radiation burn on my throat right now and I’ve learned to ask if a shift in calculations could be considered, because someone I know needed reconstruction of her esophagus after Radiation Treatment. Wait! What!? At least let the professionals know what you’ve heard, it gives you both a fighting chance to avoid real concerns.
    Speaking of friends, I had the great joy, privilege and honor to visit some of my home-town peeps this past weekend. I left Friday after radiation, and returned Sunday night to be here for Monday morning radiation. Sigh. There was still a great weekend in there. My forever longtime friend Naomi (who had head radiation for an aneurysm 2 years ago, and is permanently bald as a result), allowed me to invite my longtime friend Amy (who is battling a cancer different from mine) to dinner on Friday. For diversity we invited yet another longtime friend Sherry, who has no health issues, but who is an acupuncturist, and who understands us all.
   Take a peak at our joyful celebration:
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   Yes, there is life during Cancer and other curve-balls. And, YAY (and I mean that this time), there is life after Cancer, and other equally-un-fun experiences of the we-never-asked-for-it variety. Rock-On with your bad self. If you can breathe, you can say thanks. If you can think, you can laugh — even if you’re in treatment.
   Check back, there’s more radioactivity to come.

Chemo Girl goes Radio-Active Bit By Targeted Bit

 So . . . good news! Radiation has a bunch fewer side effects than Chemo-Therapy. Okay, that’s a wrap, we’re done here . . . except we’re not. Oh (imagine head banging table here) we’re just not done.
   I know . . . I KNOW . . . we’d all be so happy to be done now. Here is the reality. By-Gone Chemo is now pretty much exactly 4 weeks ago. With the exception that Chemo isn’t REALLY done yet. I suspect you readers are all waiting for the day when there are no more notifications of this post, at which time we’ll all rock on. Thank you. Me too. But WAIT, THERE’S MORE.
   Let’s start with Chemo’s lingering stuff, shall we? Dang and tarnation. My finger nails (and toe nails) have a bone to pick with the not-so-honorable gentleman from Lab o’ Chemicals. And I’ll tell you what, if all my aforementioned nails (especially from the footed area) were in their previous Hobbit-weaponry-ready state, this would be a much more aggressive statement. As it is, all persons from the Lab o’ Chemo are snickering that “my puny Earth weapons are useless” against them. And they’re right.
   I’m on the utter brink of loosing 6 nails as I type this. And I say, “YAY” it’s not 20,” Yet . . . as far as I know. In case you are wondering about my preparedness for this event, allow me to just say that this was NOT mentioned in my extensive and annoying Chemo Class. So, no, I did not see this coming. WTF The nails situation is worsening a month later, and the “numbness-tingling” sensation is doubling down too. The bottoms of my feet are peeling like snakes shed skin. Neuropathy is a too clingy acquaintance.
   “So other than that Mrs. Lincoln, how was the play?” Uh . . . too long? In short, I guess I’m not really done with Chemo. But that’s okay, because there’s so much fun to poke at RADIATION! If not quite welcome, it is still a solid distraction.
   The efficient staff in the radiology department are way too used to lining up patients for their equipment, and a little too unused to thinking about them after they leave. Well, it really IS much harder to connect when your actual contact is only for 5 minutes, and the relationship ends in a month or so. I mean, my chemo nurse was my chemo nurse for 4 months, and even though I only saw her every two weeks, she was in and out of my space for 3 to 5 hours at a time. There’s a commitment in that to an unavoidable degree.
   I miss her.
   But let’s get to the part where we poke fun at Radiation. Seriously. I have a good place to start. I was told by a previous patient (Roberta, I hope you don’t mind my mentioning you), that I’d be getting a couple of tiny little tattoos to mark where they needed to aim the Radiator (honestly, what is that equipment really called?). AND I thought, “TATTOOS?!” Nobody, but NOBODY mentioned permanent TATTOOING as part of this process!” I was in a total rant in my head. This is Bull-S–t I huffed repeatedly to the audience of my single brain.
   Today, I find that childish huffing quite amusing. IF ONLY they limited the marking up of my chest cavity to a couple of tiny tattoos, I would currently find this charming. Roberta, if you’re still reading, please feel free to quantify the extent to which they used to mark us up with additional pen art, and whether that may have been in addition to the tattoo marks. But for NOW . . .
   On this day, and note please that I am on my 3rd day of radiation, and note further that for almost two weeks now, I am cris-crossed with lines and diagrams and giant X’s (one of which actually looks like a swastika) to the point that I could be a poster-board for  the Cleveland Police Academy’s target training practice. Meaning, they recommend you shoot anywhere. Here . . . There . . . Here,  or Here, or oh, wherever.
   To begin with, two weeks ago, they used a green felt-tip marker which they covered over with clear stickers that stay attached through showers.  I asked on that first day if I were going to have these marks for the full duration of the 6 weeks of treatment, and they said, “Oh you don’t need to worry about that. We’ll see you everyday so if the marks fade, we’ll be able to draw them back in.” To which I said, “Well THAT’S a RELIEF!” I mean, thank G-d. Then 5 days ago, they alarmingly completed the diagram with a brilliant magenta marker.
   My abdomen, and, shall we call it my “Upper” abdomen look a lot like a toddler was given a couple of pens and asked to produce a family portrait–with their house in the background. Please remember that toddler’s favorite artistic styling is stick figures. Now you can picture it. From shoulder to navel to hips to clavicle.
   Nice. And I’m still bald, so it’s all working. Except I was still hoping my husband would be interested in intimacy occasionally. Lucky me!  . . .  he’s a really good sport. 🙂

Oh Goodness Gracious Me

 

   Final Chemo Treatment. Well, that’s done. Thank G-d. None of the Chemo’s were a picnic, and not one of them pleasant, but Oh My Heavens watch out for that last step, it’s a doozie.
   A little under 2 weeks before my daughter’s Bat Mitzvah I sat (4 hours) through my final Chemotherapeutic Infusion. Ha ha ha, “therapeutic,” as IF. Never before have I been struck so forcefully by the vast difference between the connotation of the word “therapy” (healing, restful, invigorating) and the results of this particular therapy, which is not so much those things. Think “opposite world.”
   Two days after the infusion my legs felt like I’d completed a 20 mile marathon, without any training, the day before. When I got out of bed (which I did as little as possible), my knee caps and ligaments seemed to be made of cardboard and yarn, which I was sure were about to collapse. My fingertips felt so bruised that it was a challenge to operate my phone. My muscle tissue was, again, tender to the touch. My mouth seemed to be entirely coated with a substance much like white Vaseline, both obliterating taste while creeping me out.  And, I was so tired. I spent the better part of 4 days in bed.
   Previously, the worst aspects of my symptoms had let up by the end of the weekend following an infusion, but not this time. I’d say I was back up to “operational” Wednesday evening — three days before Rebecca’s big day and three days after the norm. Fortunately I was neither entirely unprepared nor on my own. This is where “good stuff” got into full swing.
   Family, family, family. It’s precious and you should never cast it off, abuse it, or under appreciate it. If I could make a plea here, it would be to treat your family with the utmost care and respect available in your being, and see how it returns to you. By the way, my own observation would be that, disregard and neglect reap relatively equally negative rewards. Just sayin’.

   Honest to goodness, just like some fantastic Super-Hero, my sister Joan flew in from Philadelphia on Tuesday (the day before I was up to speed), and she jumped in to determine what still needed to be done and how best to accomplish the desired results. No kidding. I was at my  “Chemo-Brain” decision unworthy zenith, barely mobile, and, there she was.
   I had Old Lists, New Lists, Already Done Lists, and Out-Moded Lists, as I sat in a Confounded State of Inertia, and she helped me shift everything into a fresh “What To Do” list that was actually do-able. I should also reveal at this point that I had an otherwise sensitive husband who suddenly felt moved to add to our list (after all, we now had Joan to help). Here’s me . . . “Great idea! (you couldn’t have mentioned it a month ago?) Yes! we can do that too! (REALLY? NOW YOU ASK?!?!) Okay then! (How much will THAT cost?) & What-EVER.”
   And guess what? It all got done. Food was mostly desserts which had been arranged and accomplished by our party planner before my last down time, only requiring the adjustment of last minute added salty snacks for a cocktail half-hour while family portraits were being done after the ceremony. Decorations were largely covered by the same party planner, but I had already ordered, received and provided Eiffel Towers for center pieces on tables, and decals for general extra enhancement. New to – do, find flower petals for candle lighting table, set up and attend a rehearsal, make time for out-of-town family attending service.
   Shockingly, RSVP’s were still coming in those last few days. By which I mean, this is not shocking, but really standard. “Put them at table 5!” Joan helped with delivering “Welcome To The Event” bags to hotels, and finding the last minute, “we need socks for the dance floor, and frames for the photos, and items “For Your Convenience” in the bathrooms, and placing those pre-ordered decals on walls for decoration, and, her very existence prevented me from curling into a fetal position for the duration. She did everything she could to make me look good.
Things looked a little like this:
Joan, anxious for me. Me with eye brows (drawn in) and looking as good as one can bald.

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Joan, The Bat Mitzvah Girl, and Mom, one of whom needs professional help (ah, that would be me).

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The point of it all.

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Brunch buffet the day after, compliments of my husband’s catering skills, my Mother-In-Law’s Noodle Koogle, and my sister Betsy’s help setting it all up!

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Me and Betsy.

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   So you see, even under devastating constraints, you can make a celebration. Even if my own outlook were not as optimistic as it truly is, I would have planned this. I would have helped this moment happen. With my own family’s hands-on help, and my husband’s family help; please know they offered and provided continuous help as well — making time and reservations for us, schlepping me to appointments, financially . . . in short, in every way one could ask. I ask that you remember to ask for the help that is there and waiting.
   Now I have one full week to take a break and prepare myself for Round 2 — Radiation. For the next month and a half Chemo-Girl will be Radioactive-Chemo-Girl. And then, I will be regular old wife, mother and rider of Brody again. Which will suit me fine. Would that it were now. Until then, watch for Radio-Activity here at this site, be well, and keep your appointments!

A Lovely Weekend Break-down

We had a big weekend. We just had our Ohio High School Skating Competition, and I so wanted to participate, and I did, as much as I could, and I thought I had it nailed, and I did, almost . If only it had ended when it was supposed to. But I’m getting ahead of myself.
It truly was a lovely weekend. Skate Mom’s still RULE. Because everyone knew my situation and understood, I was largely able to just be there when I could be there, and go home when I needed to not be there. I got Rebecca there on time both days, we cheered for team mates and Rebecca skated her events beautifully. Okay, she fell once, but she did great! Everybody did.
The skaters work really hard, all the time, showing up at the rink to practice when it isn’t easy, when they’d rather be sleeping, and when they know they still have to face homework when they get home. They practice when it’s crowded and there’s no fanfare and there’s no applause. It’s all worth it on weekends like this whether they get the medal, or almost get the medal, or learn what they need to do for the next medal. They all come with their game on, with smiles, and with well deserved pride.
They’ve got this. And they’ve got each other. The real prize is being there.
Here we are in the locker room getting ready Saturday morning:
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And here is her entire “What The World Needs Now” team (traveled around the world, she was Spain):
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And here is my girl on the podium, and yes, that is a Blue Ribbon Medal around her neck: b74a8b77-b786-46d4-9794-99f287ae32a7
And here she is after the event she won no medal for Sunday evening (look at that smile):
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I knew I’d get tired, but I’d planned for that and I went home when I needed to.  I forgot some things, I made an extra trip or two . . . forgot some other things anyway, and gave myself permission to not be perfect. Yup, I had it all covered. But I forgot one big thing that really should not have rocked me, but it did. The real world. Their timing, not mine. Of course the events ran behind by the end of the second day. Of course they did. Rebecca’s final event started almost an hour late. In and of itself, this was not an issue. I wasn’t shocked or out of sorts over things running late. My earlier “rest-time” was going to be sufficient.
Only it wasn’t. Because it wasn’t just me. My husband was tired, and he was hungry, and he was worried about his mother and whether she was hungry. And when Rebecca’s event was over we had to wait for the results. And then Rebecca needed help packing up. And my brilliant plan to distract my husband and mother-in-law by having them look at professional photo’s of the weekend backfired when neither of them knew the names of the events Rebecca had been in, and they needed help finding them while Rebecca needed help in the locker room, and the numerous, lengthy awards were just starting, and my head exploded. And I threw off my coat and kicked it across the lobby. Like a 4 year old.
And I was doing so well. The week immediately following an infusion is harder than it used to be. Fatigue is more pronounced, my knees hurt all the time, chemo-mouth sores last longer, I can’t taste anything, and decision nullifying chemo-brain is off the charts. I didn’t know how to say, “I want to feed everyone, but Rebecca (unlike me) has been here ALL weekend and deserves to see the Awards. I’m sorry I suggested it, but never mind the pictures.” That would have been simple. Right? It was too hard to put together.
As I write this, I realize I am tired of cataloguing the nuanced changes anyway. I’m tired of being tired, and I’m tired of needing special allowances and special favors. I’m tired of all of this. I am very weary of chemotherapy.
But, I only have ONE MORE TO GO!!!!!! Can you believe I’m actually not going to be Chemo-Girl in 3 weeks? Well, that brightens things a bit. No?

Burning Relief

    YESSS! My hands are no longer on FIRE. That’s the good news. While still a little sensitive to heat, there is no question that this round was way less destructive to my nerve tissue. This is an example of why it is really important to tell your health care providers exactly what is going on with you not just during chemotherapy, but always.
Let’s start with this example. My infusion days always start with someone on the “infusion” team coming to collect me from the waiting area to take me to be weighed and get my lab work started (i.e. set up the IV and draw some blood to check my blood cell & platelet counts).  At this point, they always ask, “How are you doing today?” By that time on my last infusion day, as I had mentioned, my fingers had stopped burning, but they were peeling.
At least half the time that I go in for these, er, lovely treatments, I also see either my chemo-oncologist, or her physicians assistant. So once I’d explained my situation to my “greeting” nurses, they sent me into an examination room where, minutes later my doctor, and apparently half of her entire staff, knew what everyone who’d read my last blog knew. My hands had felt like they were on fire for most of the previous 2 weeks.
And . . . they had a plan. Evidently, I’m a little different, but not completely unique (dang, back into a boring, previously documented category with me). But they KNEW what to do!
My doctor informed the nursing staff that I was to be provided with ice packs to hold in my hands while the Taxol was being administered into the drip feed. My first thought was, “Hold on a second, my hands didn’t burn while I was getting treatment,” but before I could even express that, my doctor explained that holding ice DURING the treatment would lower circulation in my hands and diminish the level of Taxol that might travel into my hands and up my fingers. Ooohhh.
So that’s what we did, I held ice packs while the Taxol ran and I am here to testify that this was a successful ploy. Thank you, thank you very much, I accept your congratulations.
However, plotting and treating these devious little chemo-side-effects is like playing a game of Wack-A-Mole. The discouraging part is that just like Wack-A-Mole the game, there is no set pattern to learn or know in advance. We patients are given unending lists of the the most common side effects, and frequently have  advanced treatment for them (I’ve talked about how grateful I am for the anti-nausea drugs that come in both my drips, and in pills to be taken as needed, so I’m not too sick, or spewing), but many other effects need to show up in outliers such as myself before anything can be done about them. Another nearly equally discouraging factor is that I got entered into this version of Wack-A-Mole without having been given a large, weighty baton to smack things with.
This current week’s notable attention grabbers include, hot and cold flashes with no discernible fever, increased joint and muscle pain (which I have pain killers for that I’m wary of using), full body restlessness, mental restlessness, restless leg syndrome, and the new kids on the block, lower back ache that pulses, disappears, and returns, the skin on my face itches but is sensitive so actually scratching it hurts, so I rub it with my finger-tips, but they’re peeling so it scratches, and improved fatigue, as in bigger, better, stronger fatigue. I’m wanting that baton, but I probably wouldn’t be able to lift it anyway.
What I now know from so many of my experiences in the last 3 months is that when I tell my Peeps at the cancer center what I’ve been feeling, they will collectively address everything they can and much of what I’ve just described will be minimized or eradicated. This greatly improves my faith in this particular process. I, who embarked on this dubious course with trepidation and many misgivings, truly feel that vast progress in cancer treatment has been made.
What I can honestly say with positive sincerity is that this week I feel like I’d rather expected to feel like back when I first started chemotherapy, but I haven’t felt like this until NOW. No one can tell me it’s a bad thing. Even though I feel as if I’ve gone a few rounds with the flu AND a professional boxer at this juncture, I thought I’d be this incapacitated everyday from mid-November through March. Here it was only a quarter this bad for 4 or 5 days out of 14 from then until now, and will only be for perhap 50 to 60% of the remaining time after 2 more infusions. This should mean that I will be done with the worst side effects by the 1st weekend in March! I’m averaging above 50% nearly normal days! I’m stoked! Honest.
As I’ve gotten more comfortable talking about chemo issues, I’ve also found myself asking a few questions regarding other aspects of my health while chatting with my “team.” Turns out there are a number of things that I thought were just regular aspects of aging that I thought I’d just have to put up with, that can be alleviated with care or products or prescriptions. Normal joint aches, age spots, hair loss, unwanted hair, digestion issues, skin problems. My goodness, we don’t any of us have to soldier through so many things just because we “expect” to age in discomfort. Okay, Health Insurance can be a big impediment, but if you have any insurance, for heaven’s sake, go ask a doctor. If you are blessed enough to be alive, live better. Do it now. The times they are a changing, but you can still act before all insurance is stripped and replaced with nothing at all.
Good Luck! Really.

# I’m Not Looking Forward to This

On the brink of Infusion number 6. # I’m not looking forward to this.

Yes, I know, I didn’t write last week. There were two reasons for that. A) Life is still going on, and I’m planning my daughter’s Bat Mitzvah, and I see no reason not to hold the press for a mitzvah in the middle of my chemo, and B) who wants to type when their fingers are on fire?
Personally, I’d give myself a pass for B) alone. Oh yeah, I already did.
And yeah, you read that right. My fingers were on fire, or at least it FELT like they were. Give me a second here, I’m working really hard on making some of this sound funny.
Allow me to better detail the sensation first. The entire length of my thumbs and index fingers were inflamed, slightly swollen, red in appearance, and burning from the inside. Of lesser impact, it was only the tips of the rest of my fingers that burned, and all of this fluctuated between mere discomfort and “ow, I hate this.” I could not actually hold my tea cups for three days, as the warm cups felt like molten iron (thank god for those little finger rings on cups and mugs, and for the fact that I could use the heels of my hands for a bit of balance), and, even when dropping the water temperature to lukewarm when doing dishes, it felt like I was scalding my hands in boiling water.
I survived by dropping approximately 3 ibuprofen a day. It helped a great deal, although my dishwashing duties suffered (or should I say, my husband suffered as I left more for him to do).
The burning pain gradually receded to tingling and numbness, which I’d been informed was likely. Let me clarify this for you. I’d been well prepared for tingling and numbness in my hands and feet to occur as a side effect of either my chemo-therapy or the Nulasta shots that follow, but, as you may imagine, by the time I got to just the tingling I was so grateful, that I wouldn’t have thought to consider either it or numbness a negative side effect. I’m thinking more along the lines of a blessing.
Everybody responds a little differently. On this one I’m supposing that I’m an outlier. Yay! Don’t we all love to imagine that we are unique. Here is my proof. Yay! I’m so unique that my side effects are not on the “Chemo Watch List” radar. Until now. You read it here first.
Are ‘after side effects’ still considered to be side effects? Most likely. So, after the burning, and once the tingling actually became numbness, what happened?
Tomorrow is my next infusion and as of today my finger tips and thumbs are numb. No big deal, but this next part is of more concern to me. My index fingers and my thumbs are visibly peeling. I am shedding bits of hard, dry skin, and the tips of all my other fingers are whitening to peel, and the palms of my hands are off color (I’d say orange-ish to white edged). Say what?! This my friends is a first for me. I am still acquiring notable side effects the day before my next encounter of the chemical variety.
Oh poop. Well, there are only 3 more to go, right?
Before I even ask, “How much worse can it get?” I will refer to my dear friend Amy who is going through an even rockier treatment than me even as I type, who told me two months ago that when she first experienced “tingling and numbness” after one of her infusions (and thought, ‘I’d hate for this to go on always’) she found that she didn’t experience it the next time. So that could be part of my story too. Right? We just don’t know.
Amy’s story and optimism are more valuable to me than anything I can conjure from my own experience. She was diagnosed before me with a different form of this beast, and without her, I would feel a whole world of different from the Chem-Girl who writes this. For one thing, I would be more scared, and for another, I’d be more angry. We compare notes regularly; Amy’s voice and attitude keep me calm.
Together we smile at each other over the phone and say, “Oh well.” and, “We just don’t know yet.”
Together, we just want to get back to “normal.” To where we can accept any invitation without looking at the calendar to check which side of an infusion the event falls on, and to where we can walk everyday, and at the same pace as we did before. Everything is a little more spaced out, and everything is a little slower for us now. This is temporary. This is just for now.
Just for now I have no hair. Just for now I can’t travel too far. Just for now my plans are limited. Just for now I need to be more careful with myself. Just for now my fingers are peeling.
So just for now, I’m happy to follow instructions and go on. Going on, after all, is the point. And I have a Bat Mitzvah to plan.

Ten Great Things About Chemo-Therapy

I can tell you right now, my close friends who are reading this are thinking, “This will be just oozing with sarcasm.” Don’t be jumping to any hasty conclusions my friends. I’ve sworn off sarcasm due to it’s exceedingly unhealthy affect on my soul (and likely my cancer). Sarcasm is definitely off limits, although I make no such promises regarding wryness or irony.
Finding myself at the end of a cycle, once again I’m surprised at my own attitude towards this treatment. It isn’t that I don’t suffer from all the things I’ve already whined about; there are continued unpleasant effects, and they are growing proportionately with each infusion. However, there are a few pretty nice counterpoints to the side effects, which in and of themselves are actually great counters to the insult of these nasty chemicals.
It should be duly noted that I would not have noticed a number of these Great Things About Chemo if it weren’t for friends and acquaintances continued exclamations of, “You look GREAT!” Know that I’m pleased to hear this, and a little flattered. It isn’t like I don’t put my efforts into it. Afterall, I don’t WANT to look sickly. Yet the fact of the matter is, most days I really don’t look sick. And, I may not even look sick at the end of this (we’ll see, I expect I’ll have to roll with that if I get there). However, there is this little recoil in my brain every time I hear that I look great that makes me wonder, does this mean some people think the Chemo isn’t affecting me at all?
Well, probably that isn’t the point. Yet what really fascinates me about the continued exclamations is what makes it possible that I might look great.
For one thing, it’s the hair. #One Great Thing About Chemo actually turns out to be about the hair factor. Once you get over your chagrin that you’ve been robbed of your hair, you can actually make a great friend of your wig. Let’s face it, all wigs hair is better behaved than anyone’s natural hair. Wig hair is manufactured and styled to look fabulous. I tug that puppy on and I look freshly coiffed in six seconds flat. Boom. And it stays that way. That’s Great!
Then there’s my skin. #2nd Great Thing About Chemo is the skin. Okay, maybe this one is especially for people with normally oily skin, and given that allowance for me, even my skin is a whole lot drier from the chemo. At first the dryness was horribly alarming. All my smile lines became actual grooves; ditto for frown lines, worry lines, all those lines. But a good moisturizer really makes a difference with the lines, and, who knew? I haven’t had a white-head, or a black-head, or a blind-zit since week one of chemo! Sisters, can I get a Woot-Woot? I can’t remember the last time I went a whole week with a clear complexion.
Let’s not over-look the new lack of facial hair. No woman wants to own up to managing unwanted facial hair, but #3rd Great Thing About Chemo is I don’t have any unwanted hair on my face. The total bonus so far is, I do still have the WANTED facial hair, i.e. eyebrows and eyelashes. Although this is a topic to revisit in four weeks or so, I have my concerns on this count.
On to #4th Great Thing About Chemo is giving yourself a make-up allowance. True, chemo has made my complexion a little red some days, but foundation smooths that right over. Can you say “color correction?” Uh-huh, I knew you could. I invested in a good foundation and now I wear it regularly, where as I didn’t before, and, well, no wonder I look GREAT. Or, at least not sick. 🙂
So that covers the appearance aspects of chemo, but wait, there’s more!
The extra time I have in the morning by NOT shampooing and blowing dry is, #5th Great Thing About Chemo; better time management! So far, I have made exceedingly productive use of this time by sleeping a little longer. Don’t pretend you’re not jealous.
Next, money management. #6th Great Thing About Chemo is $avings. All right, I just told you I’m spending more on make-up, but that expenditure is still below “Even-Steven” compared to what I’m not spending on good shampoo, conditioner, anti-frizz cream and hair spray. Let’s not even mention salon spending. I’d like to ask you to just pause for a moment to pity my poor hair-dresser who is surely missing the income from my base-color, high-lights, low-lights, hair-cuts and blow-drys. One or two of those services every three weeks? Poor, dear girl. Sorry honey.
Then there’s the simple ‘lost that annoyance’ factor of the #7th Great Thing About Chemo: I don’t have to shave my legs for any reason. Bam. Enough said.
Oh, and this one has to be really good for me, #8th Great Thing About Chemo, I’m just not so into sugar anymore. Oh, I STILL consume some sugar, but less is good enough, and that there’s a miracle.
I had no idea of just how much I was depriving myself of the next one, but #9th Great Thing About Chemo is I am e-mailing, texting, and calling my brothers and sisters way more than I usually do, and wow, do I feel richer for it! Nothing like a little chemo to make you appreciate your loved ones and feel immensely grateful that they’re there, and you’re here, to communicate with them. It seriously makes you feel the power of love on a whole new level.
Finally, I’ve mentioned this before, but as I feel I didn’t stress it enough, and as it is so very valuable, it bears repeating on this list. #10th Great Thing About Chemo is the clarity you gain regarding what is valuable in life, and what is worth effort, and what is not.
Even if you never have to go through this kind of detour in your life, if my experience can make you ask yourself, “What am I investing most of my time in? Who am I investing most of my energy in? Are the rewards of these investments equal to the expenditure of effort and self, and are they worth the sacrifice of things I am not doing for myself or the people I love most? What is the payback for my concessions? Am I getting rewards that match the award of my personal investment? In short, is what I am doing for other people worth to me what it is to them?” If, overall, your honest appraisal of such a review is positive, your life is well lived, and if not, you may want to give yourself permission to revise your priorities.
Chemotherapy is giving me a clarity for what is most valuable in my life. I have an insight that I lacked six months ago. A good day is priceless. I wish you all innumerable good days.

A Milestone I’ve been looking forward too!

I’m halfway done with the chemical fun!
Okay, this could be worse. I’m not going to lie, it could be better too. What would be really nice would be if this was the end and this was as bad as it got. Who knows? Maybe this is where the elevator stops. My oncologist has been indicating all along that her goal is to balance all my medicines to minimize side effects in order to prevent a real disruption in my normal life, and I must admit that there’s clearly been a great deal of research into formulas intended to over-ride the worst physical reactions to the main event of Chemotherapy. Truly, I have not experienced anything like the stereotypical impression many of us have of nausea and vomiting that once was the hallmark of chemo patients. I’m grateful to live in a barf free zone.
However, it seems to me there is still a little work to be done regarding the side-effects of the anti-side-effects drugs that have been introduced to help out. First, there are the steroids that actually do limit the nausea, but that interrupt your sleep when you are already fatigued. On the bright side, I find that I’m not feeling fatigued when I’m awake in the middle of the night. So there’s that. Not horrific, right? It’s really only when I’m trying to keep my eyes open at my desk at work the next day that I notice the fatigue. Then there is my increasingly unpleasant reaction to the Neulasta shots that follow the main infusion by 24 hours. The Neulasta is given for the all important boosting of white blood cells and platelets which all chemo drugs deplete. It’s really important. Without Neulasta I’d have no immune system to speak of. But . . .
I was told, warned if you will, that the main side-effect of the Neulasta would be pain in my joints and/or bones, something like arthritis. Alright, I’ve had arthritis, I can deal. In fact, as it turns out, I’ve had only minor arthritis, and this artificially induced “arthritis-like” pain isn’t even as bad as my actual arthritis. Would that I could leave the side-effects of this one right there and toddle on. If wishes were horses, beggers would ride.
There’s this ramping up phenomenon that I’m having difficulty describing to my doctor’s and nurses, who all seem, by the way, sincerely interested, and concerned for me. But they keep giving me that tilted head, quizzical look dogs give you when you try to tell them how your day went. There’s no spark of recognition or understanding over words like “printer crashed” or “left on hold for 3 hours.” My flesh feels like it was used as a pincushion by the entire labor force at WH Bagshaw needle manufacturers in my sleep. I can’t touch anything on myself for almost two days without flinching, and PLEASE don’t hug me! I have a tendency to cross my arms in front of myself without thinking about it, and I almost pass out from the surprise. On the other hand, it helps me to wake up at my desk.
Let’s just back wing a bit and take a look at that part where the goal is to prevent disruption of my normal life. It’s a given that the realization of such a goal is impossible. Aside from spending 3 hours of a working day in a clinic every two weeks getting drips and infusions, there is the muscle fatigue that makes you lose interest in regular activities, and the tendency towards depression that you don’t want to show . . . not because it looks weak on your part, but because it worsens the depression of those who love you and who are feeling helpless already.
Then all of the above combines with the simple fact that foreign chemicals are piling up in the storage areas of every cell your body can still maintain, and this can make you cranky as all get out. I hear myself respond to the question, “Can I get you something to drink?” by saying, “I just finished a cup of TEA!” And how normal is your day going to be when there’s the chemo-brain that makes even simple decisions nearly impossible. Please don’t ask me “either/or” questions, such as, would you like to meet for lunch tomorrow, or get coffee together this afternoon? I can’t handle options; I short-circuit. My priceless husband asks me if I’d like him to cook dinner tonight or order out and I self-implode, as my brain wimpers, Yes! Either! Which would be better? What would you rather? I don’t KNOW! 
Well, all of this is normal, and for the most part temporary, and there is this unmentioned side-effect of having cancer and being a chemo-patient that is, you’re forgiven.
 
And still, when I’ve thought all of these things, and rolled my eyes, and lamented all the losses and insufficiencies in my current world, I’m brought up short by the knowledge that things are just crap right now, but I’ll live through it. Literally. And, I’m halfway done. 🙂
How cool is that?