I am Not my Hair- Take 2

I am Not my Hair- Take 2

Everything I read about Abraxane, my current IV chemo, says that hair loss starts around the third dose. Last Tuesday was my third treatment and, sure enough, a couple of days after the infusion, I started shedding. It’s hard to describe the sensation. It’s a tingly, itchy feeling. It feels similar to the way your scalp feels if you part your hair in a new place, or leave a ponytail in too long. If you know this feeling, it just feels wrong. 

  Photo Sep 17, 8 40 15 AM   Photo Sep 22, 4 01 40 PM   Photo Sep 22, 4 25 37 PM

 

We started with an undercut, just in case it wasn’t all actually going to fall out. I let Alyssa make a heart with the electric shaver. I kept it like this for about a week.

After the 4th treatment, the shedding and odd sensations became even more pronounced, so I knew it was time to do something more drastic. That something, this time around, would be a purple mohawk. I guess it’s tradition. In 2014, when my hair started coming out in clumps from my first run through chemo, I decided to put the electric shaver in the kids hands and have some fun with it. That time, I was determined to hit cancer hard and never look back. I dealt with the hair loss as a temporary situation to reclaim my health. 

This time around, it has a different meaning to me. The hair loss is insignificant compared to the improvement I sense in cancer’s symptoms in my abdomen. The first time around, I never had any symptoms to indicate cancer was developing. I was strong and healthy before my diagnosis. This time, I have been suffering from various pains, and the accumulation of fluid in the peritoneal lining (the lining surrounding the digestive tract). The chemo has significantly reduced the amount of fluid, my appetite is coming back and I’m starting to feel better. So I don’t care so much about the balding head (except that it’s cold!). 

Thursday night, I decided it was time to dig out the shaver again. I got some pizza and put on the Packer game and we proceeded to shave it off. Ironically, it took me a couple of years after the first chemo to leave my hair alone and let it grow out. I was just beginning to like the length.

Photo Sep 19, 5 10 26 PM

But that isn’t really relevant. The girls decided that Kaylei would do the rest of the cutting and Alyssa would dye it purple.

Friday, my buddy Crystal brought over lunch and we spiked up the mohawk and then cut it down to a more manageable height. My brother and sis-in-law dropped in to witness the beginning of the mohawk! We’ll see how long I can stand the tingly, itchy feeling. I’m thinking pretty soon it will be time to buzz it all off. I’m collecting warm, fuzzy hats now. Winter in WI is not the best time to be bald…

sue n cathy

If I’m going to sport a purple mohawk, I better go bold.

Photo Sep 27, 2 40 00 PM

Soon, I’ll be able to make a new “hair raising” video!!

 

Now What?

I realize that it has been nearly two months since I updated my blog. Don’t worry. I am still here. I still have a lot on my mind, and have been meaning to write, but the urgency to write which I felt before has let up some. In the thick of things this past year, I felt a strong pull to put my thoughts to paper. Writing was the only way to sort out the complex jumble of thoughts and fears, and dig for some sense of peace with what I was going through. Now, as I continue to move forward, I don’t feel the same pressing sense of urgency to put my thoughts to paper, so maybe you’ll hear less from me. Maybe….

The completion of radiation in the end of September marked the end of active treatment against cancer for me. For 10 months, this vigorous battle dominated nearly every aspect of my life. The abrupt change from constant doctor’s appointments, major side effects, and a underlying, ever-present focus on whipping cancer, to a return to… “normal” life, left me thinking, “now what?” Where do I go from here? So much has changed.

The important things in life are that much more important now. The unimportant things in life are that much more unimportant now. Facing fears, and pain, and setbacks seems to be a regular part of every day, yet I have new goals. Some are previous goals that have been neglected. Some are new goals. Life is too precious, and there are no guarantees that I’ll be around long enough, to put off the hopes and dreams I have for my life. What all of this means, I am not sure. But I am excited to find out. Excited to move forward.

Though I sometimes feel manic excitement to jump head first into this new chapter, waste not a single moment, I also realize that it will take time. I don’t have the strength or the energy that I used to have. I see glimpses of my old strength at times, but only glimpses. It seems that I can’t complete the tasks that I set for myself in the time I think I should be able to complete them. It frustrates me. I don’t have time for the patience of my younger self. I know that I need to learn, for now, to take on less, slow down, do things at a reasonable pace. Balance.

I have one more major hurdle to clear on this journey. Two weeks from today, I will be undergoing reconstruction surgery, along with the removal of my chemo port. I look forward to getting it done, or, rather, to getting it over with. In fact, I pushed the doctor to let me do it before the end of the year because I want this chapter to close with the end of 2014.  I am not looking forward to another surgery, another recovery, another pause from the things I want to be able to do.  I can say one thing with certainty, though – look out 2015! This New Year has new meaning and I am going to come on strong!

Comedy of Broken Pieces

Enough already! The past week has been one problem after another as my body breaks down from the strain of cancer treatment. It’s like the classic example of the driver, breathing a sigh of relief as they near home after a long drive, and then, minutes from home, they get into a car accident.

I was breathing that sigh of relief near the end of radiation, ready to be at home with a new chance at life. I am more than ready to done with doctors and hospitals and all things cancer. My body tells me otherwise. The effects of treatment keep popping up to remind me that I can’t move forward as if nothing happened. It is going to take more time and effort than that.

Monday I met with a specialist to try to find a solution for recurrent UTIs, which are exacerbated by chemotherapy-induced menopause. Tuesday was my final day of radiation, a milestone worth celebrating, to be sure. I brought a dozen donuts to St. Luke’s radiation oncology department. It was a lovely day, and I was thrilled to be done with the 7 weeks of daily trips to St. Luke’s. There were plenty of hugs and high fives. My skin seemed to be over the worst of the burns, and I was starting to heal, feeling like I was nearing the end of the long road.  I received a wonderful bottle of wine from a friend, so there was further celebration that evening.

2014-09-24 18.10.15

Wednesday I had a follow-up with the medical oncologist. Everything was looking good. Fatigue was my only complaint, yet initial blood work was showing improvements over the dropping numbers caused by chemotherapy. There were more congratulations and hugs. I donated my hats and scarves further symbolizing the end of that chapter. On my way out the door, beaming and ready to ride my motorcycle home on a beautiful fall day, the nurse stopped me and said she needed to talk to me…

Back into an exam room I went. The nurse came in to inform me that my blood work showed an elevated level of troponin, an enzyme that is released when there is damage to the heart. It is found in people who are having heart attacks. It also can occur if radiation stresses or damages the heart. So, having told me this and asking if I had any chest pain or shortness of breath, they sent me on my way with instructions to rush to the ER if I experienced any symptoms of a heart attack. NOT a reassuring thought as I strapped on my helmet and climbed onto my motorcycle for the ride home. I felt every beat of my heart on that trip.

As everything else on this road, the “not knowing” period is the worst part. Left without details, my imagination takes over and fills in the knowledge gap with worst case scenarios. In my mind, I beat cancer but surely would need a heart transplant or other extreme measure to survive the effects of the cancer treatment. The cardiologist called and I was scheduled for a heart echo-cardiogram on Friday. I do not like Friday tests. They usually mean I get stuck, waiting with my imagination, until Monday to hear the results. Thankfully, I got the call Friday afternoon assuring me that my heart was stable. Phew.
NOW, certainly I was done with hospitals and doctors for awhile. I looked forward to the upcoming weekend and a visit from a dear friend, Rania, and her boyfriend. I also was anticipating a possible road trip with my boyfriend with excitement. But (since it wouldn’t be November with orthopedic surgery) on Thursday, I had a recurrence of a sharp pain in my knee. I had already seen the surgeon for the knee pain earlier in the month and had x-rays and an exam. The next step was to have an MRI. I scheduled it and went on with RICE (Rest, Ice, Compression and Elevation), and went forward with fun plans for the weekend.

riding

I spent a wonderful weekend with friends, reminiscing, riding motorcycles, eating out and toasting the end of cancer treatment. Then Sunday night, the neuropathy that was finally almost gone from my left foot, came back with a vengeance. By Monday morning, my left foot was terribly swollen and painful, making it difficult to walk. I scrambled around to try to see the orthopedic surgeon asap and attempted to move the MRI date up. The surgeon didn’t want to see me until he had the MRI results in, but I did eventually get the MRI rescheduled and a new appointment to see the doctor.

2014-09-28 09.57.09  2014-09-27 13.18.11

Now it is Tuesday morning, the day of the MRI. I am able to put a little more weight on my foot, but I’m still limping quite a bit. I called around to make sure nothing implanted in my body contained metal (a no-no in MRI machines). The chemo port checked out MRI safe, the IUD also was okay. Then I spoke with the surgeon’s nurse about the tissue expanders (as I affectionately call them – boob placeholders). Tissue expanders have a metal port in them which the doctor uses a magnetic on to locate the port when injecting saline. NOT MRI safe…

The beautiful weather we had all weekend left with a drastic cold front yesterday, I struggle to walk without pain, I can’t have an MRI to determine the cause of my knee pain, I’m exhausted, disheartened, and my boyfriend is leaving tomorrow for a two week trip that I had hoped to accompany him on. I’ve had better days. I am ready to move forward, get my health back, get in shape, yet, here I sit, looking around at broken pieces.

Last Round. Done.

2014-07-01 13.10.59 2014-07-01 14.56.24

Tuesday, July 1st was my last round of chemotherapy! A huge milestone, no doubt, and I am happy to be able to say that the experience of chemo is behind me. Never again (I pray) will I have to sit for hours with these chemicals coursing through my body. But, I’m not cracking the champagne yet. Realistically, it is merely the last hurdle in an event that is not yet finished, and there are additional events still looming on the horizon for me. As in track and field, the last hurdle needs to be taken cleanly and the runner still needs to land firmly on their feet and sprint across the finish line.

With the hurdles behind me, the final sprint is proving more difficult than I had imagined. I have cleared many hurdles and fought for my strength between them, seemingly just in time to clear the next hurdle. But the cumulative effect of the hurdles, chemo with its side effects, has left me weak. I was prepared, mentally, for the last round to end on July 1st, but that is just the first part of the last round – I still need to land and make it to the finish line. The drugs, along with their debilitating side effects will remain in my system for another four to six weeks, at least. I did not mentally prepare myself for that, and then, yesterday, that reality made me falter.

Going into the last round, I was already anemic, on the verge of needing a blood transfusion, and profoundly fatigued. I guess I had prepared myself to breathe a sigh of relief and move forward at this point, but the side effects hit me hard again this time, throwing me off balance.

Physically, I have never felt weaker. Small tasks sap any remaining energy I might have been able to summon. I have to stop to catch my breath halfway up a flight of stairs. The long list of things I want to do each day seems insurmountable.  Digestive problems have made it difficult to eat properly. Nothing tastes right, and my appetite is off. If I chose to eat the wrong thing, I become extremely ill. I also find it really difficult to keep hydrated, which further weakens me. Body aches and bone pain make getting around a struggle, too. Lately, I have been sleeping, hard, for fifteen or so hours a day, and it’s still not enough. Unfortunately, each round requires steroids to lessen the side effects, and with that, disruptions to the sleep I crave. Without sleep, and nourishment and water, I am finding it hard to rebuild the strength I need to cross the finish line.

Emotionally, it is taking a toll on me, too. I was not prepared for the physical effects of the final round, nor their effect on me emotionally. Chemo throws the body into sudden menopause, with its accompanying emotional moments. This week, the sleeplessness, chemo-pause, dehydration and negative external forces have been more than I was ready to handle. This weekend has been particularly hard for me and a low point on this journey.

It is the Fourth of July weekend. It is perfectly beautiful summer weather, yet I feel like I’m in someone else’s surreal life. It feels like a haze is over me. Surely, I did not just go through chemotherapy. This can’t be my body struggling to do simple things. None of it seems real. I am sad to be missing the usual celebrations that I have always shared with my kids on this holiday. There will always be an empty gap where there should have been more. Andy, who has been there for me when my own strength waivers, reminded me that missing this year’s memories to focus on getting healthy will ensure many more years of memories to come. I have to keep that thought clear in my mind when I’m feeling down. My priority right now has to be on my recovery and health, so that I will be here for all of the happy memories to come in my future.

I have a month to get back on track, rebuild and recover from the hurdles of chemotherapy before tackling my next event – radiation. I’m confident that I will be ready. Today is a new day, and I feel like I am back in my own life again and ready to reach the finish line.

 

 

 

Immunosuppression’s a Frustrating Mess

With a nod to Jimi Hendrix and Shel Silverstein. Really.

Every round of chemo has given me different side effects, including some odd symptoms that I have never experienced before. It brings to mind a Shel Silverstein poem from my childhood entitled “Sick”. My list of ailments over the past few months is almost as preposterous as Peggy Ann’s. Chemotherapy attacks all fast growing cells, including beneficial cells found in the digestive tract, mouth, hair and nails, so it throws everything out of whack. About a week post-chemo, I find myself with neutropenia, an abnormally low count of neutrophils, a type of white blood cell that helps fight off infections. This has left me susceptible to all kinds of sickness. Here are of some of the things I’ve faced:

Side Effects
Chemo has been quite a ride.
I’ve fought back with strength and pride.
Neuropathy gives my toe tingles.
I came down with a case of shingles.
Boils, pains, insomnia, and rash.
Nasty gastrointestinal distress.
Exhaustion and anemia.
Bronchitis, cold sores, and alopecia.
Flu-like symptoms, extreme fatigue,
All these things I just don’t need.
Low white blood cells cause infection,
Low red blood cells cause exhaustion.
Dehydration.
Taste sensations.
Hot Flashes! Chemopause
is their cause.
One eye twitches, one knee aches.
Now and then my fever bakes.
My lymph nodes swell where cysts dwell.
I am not well!
But all this amends
when chemo ends.

On Tuesday, I went in for my weekly labs, and we discovered that my slowly dropping red blood cell count had dropped to a level at which the doctor recommended a blood transfusion. Short on time, because I had to pick my kids up, I asked if we could postpone. I also wanted to learn more before I underwent a blood transfusion. I scheduled it for Friday and went home to ask questions. I learned that the chemo has been attacking my blood cells (as it does all rapidly growing cells). A low red blood cell count causes weakness, shortness of breath and extreme fatigue. I knew chemo was causing me fatigue, which has crept up on me cumulatively over the course of my treatment, but it has become extreme lately. I live on the second floor. I can only make it up half way before I start huffing and puffing and slowing down. I wake up after 10-12 hours of sleep needing a 3-4 hour nap. I think I could sleep all day, in fact.

I went back to the Vince Lombardi Cancer Clinic on Friday, fully prepared to spend five or so hours receiving a blood transfusion, but my labs came back showing a slight rise in my red blood cell count, taking me out of the critical zone. The doctor advised waiting on the transfusion since my body is trying to recover on its own and I only face one more round of chemo. So, armed with the information that my body is fighting back, I went home and took a three hour nap. Guess I’m just going to have to deal with extreme fatigue a while longer. Excuse me, while I take a nap.

And now, a real poem…

Sick
Shel Silverstein

“I cannot go to school today,”
Said little Peggy Ann McKay.
“I have the measles and the mumps,
A gash, a rash and purple bumps.
My mouth is wet, my throat is dry,
I’m going blind in my right eye.
My tonsils are as big as rocks,
I’ve counted sixteen chicken pox
And there’s one more–that’s seventeen,
And don’t you think my face looks green?
My leg is cut–my eyes are blue–
It might be instamatic flu.
I cough and sneeze and gasp and choke,
I’m sure that my left leg is broke–
My hip hurts when I move my chin,
My belly button’s caving in,
My back is wrenched, my ankle’s sprained,
My ‘pendix pains each time it rains.
My nose is cold, my toes are numb.
I have a sliver in my thumb.
My neck is stiff, my voice is weak,
I hardly whisper when I speak.
My tongue is filling up my mouth,
I think my hair is falling out.
My elbow’s bent, my spine ain’t straight,
My temperature is one-o-eight.
My brain is shrunk, I cannot hear,
There is a hole inside my ear.
I have a hangnail, and my heart is–what?
What’s that? What’s that you say?
You say today is. . .Saturday?
G’bye, I’m going out to play!”