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!”

Healing Henna

Healing Henna

I can’t go so far as to say that I am glad that cancer came into my life. What I can say is that I am fully embracing the healing journey that this life experience has plunged me into. I can also honestly say that some of my happiest moments have come to me as a result of this experience. I’ve made deeper connections with people with whom I may never have crossed paths with otherwise and they’ve brought so much to my life.

I face round five of six chemotherapy infusions today. Previous rounds have involved a pre-chemo margarita with friends to prepare myself for the rough patch that sometimes follows an infusion. However, this time, I decided to make use of the fresh mint proliferating in my garden to make mojitos with my friends. This was also my way of thanking those who helped me whip my backyard gardens into shape (see Victory Garden). I also invited a friend from the neighborhood to join us and do henna tattoos for everyone, with the finale being a full henna tattoo on my bald head.

We made our mojitos and enjoyed a cookout while we watched in amazement at Anita’s talent as she created her beautiful art on our bodies. Her true talent shines through in the flawlessly smooth strokes she uses to create her art. She started with the kids and, somehow, through her brief conversations with them, and nothing more than the images that she envisions in her mind for them, she created unique designs which seemed to perfectly suit each kid’s personality. I am absolutely amazed at this talent!  See more of her work at Hands of Henna by Anita.

Towards the end of the evening, as all the other tattoos were completed, Anita had a wonderful suggestion. It was nearing 10:30 (on a school night), and she mentioned that she did not want to rush my tattoo, but rather go to the beach the following day to work on mine. I love the beach, so this sounded perfect to me.

It couldn’t have worked out better and the experience of tattooing my head on the beach will always have a special place in my heart. We chose my favorite time of the day to go to the beach. It was a beautiful, clear, sunny morning and the sun was sparklingly beautifully off the water. We found a great spot in the warm sand to spread our blanket, close to the water so we could hear the soothing sound of the waves gently lapping on the shore. We set up Pandora to play world music, and I settled in comfortably on the blanket, feeling the sun on my skin, and perfectly relaxed in a kind of meditation. The feel of the henna going onto my head, with the backdrop of the music and the waves and the feel of the sun, was incredibly soothing, reminiscent of a scalp massage.

We spent the next two hours in relaxed conversation. I’ve know Anita for years, but only casually from living in the same neighborhood, and having some mutual friends. This was the first time we really spent a solid chunk of time getting to know one another. It was a really special moment. We spoke of our love of travel and passion for living fully. We also shared our experiences with life changing events. I attempted to express how cancer has changed my perspective on how one goes through life, and Anita shared her experiences recovering from a life changing accident. We talked about how to raise our daughters to be strong, independent people, and how to involve them in travel more to expose them to the variety of cultures on this planet. It was a really wonderful experience, and all the while, Anita created a beautiful work of art on my head. It’s one of those moments that I never would have enjoyed had cancer not entered my life, so for that I am grateful.

After finishing the tattoo, it would be the first time venturing out of the house without the concealing protection of a hat, though the tattoo was, in a sense, a beautiful head covering which allowed me to walk around with a feeling of confidence. I received a lot of compliments when I picked the kids up from school. The first question people asked was if it hurt until I explained that it was a temporary henna tattoo. My kids’ classmates were the best, because kids have that uninhibited way of wanting to see new things and learn. Some thought it was a wild haircut, others wondered what it was, but they all thought it was really cool. Adults asked questions too, but with a little more reservation.

All in all, it was a perfect way to get myself mentally prepared for another round of chemo. I need to make sure the positives of this experience outweigh the negatives. There are definitely moments when I just want to have all of this behind me. But since I can’t control that, the least I can do while I endure the treatments is to create wonderful memories that I will cherish as I put this experience behind me. So far, so good.

I am Not my Hair

I am Not my Hair

When I first told my kids that I had cancer, one of the first questions they asked me was if I was going to lose my hair. I think, for my oldest daughter especially, this was one of the most devastating effects. I’ve never been terribly vain, and was not too worried about losing my hair, because I knew it would be temporary. However, I am raising kids who are into hair, make-up, fashion and all things girly, and they were worried about me losing my hair. I’ve heard it over and over again, it helps to shave the hair off before the chemo makes it fall out in an effort to have some control over it. If that is the case, then I figured that I could involve the kids in the hair cutting to let them control the part of this that concerns them.

Phase one was about 2 weeks ago, shortly after the first round of chemo. I made a ponytail close to my scalp and divided it in half. I let each of my daughters make a braid and cut it off. That was it. Two snips. We never evened it up or anything, and it was the best haircut I’ve had in a long time! I told the girls about Locks for Love. They thought it was cool that another kid could get a wig made out of my hair, so we shipped my two braids off to Locks for Love. After that, I let the kids dye my remaining hair purple, electric blue and crimson red. It was a fun look.

People kept asking me if I really wanted to cut my hair before I knew it would fall out. My doctors and nurses were pretty confident that it would, since it was a big side effect of all three of the drugs I was getting, so I felt it was a safe bet. My physical therapist was the one who was spot on. She explained that around day 17, I would start seeing more hair shedding on my brush and in the shower. Then a few days later, it would start coming out in clumps. She explained that at that point, people usually shave it off. Sure enough, it started on day 16, as I ran my hands through my hair in the shower, hair was getting everywhere. Finally, I couldn’t stand it anymore, because, if I pulled on my hair, big clumps were coming out, and that part of it did freak me out a bit. So, last night, I put the electric razor in the kids hands again and let them shave the rest off. Right now, I match my hairless cat, Gizmo, with peach fuzz covering my head. It’s still actively falling out and driving me nuts, like when you just get a haircut and the hairs get in your shirt and itch like mad. Tonight, it all goes.

Port Support

I am sitting in my quiet house, remembering a special moment with a smile on my face, so I thought I would share this happy moment. Prior to my first round of chemo, I had an appointment to meet with the radiation oncologist. The wait was especially long that day, and I was nervously anticipating my first experience with chemo which was scheduled immediately after this appointment. Finally, it was my turn to head to the exam room with the nurse. We went through a long list of questions, and then it was time to get a gown on and wait for the doctor. As the nurse was leaving, I decided to show her the love notes that my kids had drawn on my skin surrounding the port where the drugs would be infused. That morning, I had asked them to write something there for me. It was my attempt to ease some of the fears they were having about their mom heading off for chemo. I told them it was “port support”. The nurse said she’d never seen anyone come in with love notes written on them before. She told me that there are special things that she sees only occasionally. Things that will forever remain in her memory. This was one of those things she said she would never forget. She was so moved that she nearly came to tears, and gave me a great, big huge. I left the appointment with such a warm, happy feeling.

Can you guess which of my creative, artistic kids wrapped the love all the way around my back?

port support

Love notes surrounding my port

port support

Bad Breaks, Set Backs, and Side Effects

That feeling of well-being that I had on Sunday morning, when the sun was rising beautifully and the birds were singing, and I momentarily felt like all was right with the world, was short lived. By Sunday afternoon, a whole new set of side effects hit me and I was right back to feeling awful. I’ll spare the details, but Sunday night was one rough night. Somehow, Monday morning I managed to wake the kids up for school. I shouted occasional commands from bed now and then to make sure they were actually getting themselves ready for school, and, miraculously, they got out the door on time. Thankfully, my wonderful next door neighbor drove them to school all week while I was down and out, and my other friends took turns shuffling them to various after school activities. I simply would not have been able to do it.

Monday afternoon I was scheduled for physical therapy. I debated about canceling, but I decided that sometimes just the act of getting out of the house and walking around in fresh air can help. I am glad I did. I definitely felt better walking out than I did walking in. Afterwards, I checked in at the Vince Lombardi Cancer Clinic to let them know how I was feeling. This was another good decision. They drew blood and found that my white blood cell count was 0. They set me up with an IV so I could rehydrate. I managed to pick the kids up on my way home. Then I collapsed on the couch. Luckily, I had a friend with me who handled groceries, laundry and dinner preparations.

Monday and Tuesday were definitely low points. I was so sick, weak and dehydrated that I could barely handle the walk from the bed to the couch and back to bed. I had to force myself to eat and was encouraged (repeatedly) to keep drinking water and gatorade. I slept a lot.

Wednesday, feeling a little better, I called and scheduled to see the oncologist. She walked into the exam room with the list of symptoms I’d been having, and said, “well, looks like you have all the side effects”. She was apologetic because, prior to chemo, she had pretty emphatically assured me that many patients don’t have any side effects, and that she would do everything possible to preemptively counter any side effects. She then went on to say that we could change up the regimen, but in her experience the best survivorship is with the current regimen. So, needless to say, I’ll have what they’re having….

We determined that it may have been a mistake to stop the steroids early (because I wasn’t sleeping). That could be the reason I experienced so many side effects. Learning from round one, we can tackle round two with this knowledge and do a couple things differently to, hopefully, make it smoother. I’ll keep up with the steroids, but add sleeping pills so I can get my beauty rest. I will get additional IV fluids for a couple of days following chemo, and I’ll stay ahead of the anti-nausea drugs. Other than that, now I know what to expect. I can do it. I know now that I will need to take offers of help from my friends the week of April 8th for round two.

Today is Thursday and, like the gloomy, cold rain outside my window, it is unpleasant. But rain, sometimes gloomy and unpleasant, is also a necessary part of any spring. The rain is here to wash away the dirt and grime of a difficult season.

rainy day

Round One – Ding

The day had arrived, Tuesday, March 18th, for round one of chemotherapy.  Part of preparing for, and, hopefully, countering the effects of chemo, involves taking steroids, beginning the day before chemo and continuing for 5 days.  I had no idea what that little pill would do to my life.  I am normally a very mellow person, falsely propped up by a nice cup of coffee each morning to get me through the day. I love my coffee.  Well, no need for coffee when steroids are involved. Steroids make me hyper.  To say the least.  Monday was productive, my most energetic day since surgery.  I cleaned the house, made dinner, prepared the slow cooker for Tuesday night’s dinner, and then, stayed up most of the night.  On the bright side, staying up all night did give me a chance to get on a discussion board to have some last minute questions answered regarding what to expect from chemo.  I figured, surely, I’ll sleep during the 4 hours chemo session.

I arrived at the hospital at 9am, and made my way up to a couple of pre-chemo appointments, that, in my opinion, could have waited.  After that, it was time to check my blood work to be sure I was really ready.  Being relatively healthy (otherwise), everything looked good.  With the IV line secured in the port, I made my way back to, as I’ve (affectionately?) named it, my “chemo-cave”.  In addition to having a great staff around me, I have to say, the facility is nice.  They have included everything one could think of to make chemotherapy a comfortable experience.  Each “cave” is fully enclosed by curtains, though I left mine open so I could look at the photographs of beautiful beaches that line the walls.  I have a reclining, heated, massage chair, personal TV, heated blankets, snacks, and a volunteer art therapist and massage therapist at the ready.  I also came prepared with a favorite blanket from home (per middle of the night advice from the discussion board), snacks, books, and my phone; complete with music, audio books, social media, etc.  But, I wouldn’t need all of that.  Surely, I would take a four hour nap.

The first med up into the IV – Steroids!  So, never mind that nap….

I got my books out and settled under my blanket.  Every so often, new things were added to the IV.  Anti-nausea meds and various other things to ease the impact of the chemo drugs.  After about an hour, the first of three chemo drugs was added to the mix.  I am getting the full package, the works, as the nurses are calling it.  TAC.  Taxotere, Adriamycin, Cyclophosphamide.  There was nothing to it.  I had anticipated more sensations, tastes or something, based on the long list of potential experiences expressed by my “chemo coach”.  I really didn’t notice anything.  So, I read my book, colored with the art therapists’ supplies, listened to some music, and had the nurse whip up some popcorn.  Time passed.  It was time to go home.  I walked out, feeling good.

mandala

My dad gave me a ride home from the hospital, but I feel that I would have been fine to drive.  My mom, my kids, and my slow cooker dinner were waiting for me at home.  Dinner hit the spot, and we went on with our usual school night routine.  Later that evening, I started to feel slightly off.  I think I may have been okay if I had been able to sleep. The minute I got in bed, my heart started pounding, my mind racing and a general crappy, nauseous, feeling started to take over.  Reminiscent of my morning sickness days, I lined up crackers and water by my bedside, and tossed and turned all night.  The day started with an overwhelming exhaustion, queasiness and a touch of wired energy.

Wednesday afternoon, it was back to the hospital for physical therapy and a shot called Nuelasta, which is given 24 hours post chemo, to boost the bone marrow to kick up production of blood cells.  The side effect of the shot is bone pain.  I am involved in a study comparing a couple different options for managing this pain. The option I am taking, apparently, is not working.

By Thursday, all of the symptoms were hitting me. This was not unexpected.  Based on everything I read and learned from the nurses and discussion boards, day 1 and 2 are controlled by the steroids, anti-nausea meds and all the rest.  Day 3, 4 and 5 are expected to be the worst.  Thursday was day 3.  On top of the exhaustion from lack of sleep, I generally felt dizzy, queasy and when the bone pain hit, it made me feel like I’d been run over by the flu.  I would compare the pain to Dengue Fever, which I had in the 90s, courtesy of a rendezvous with a mosquito in Jamaica. I’ll never forget that pain.  It felt like all of my ligaments were removed and my bones were left to clatter against one  another.  Imagine the achy joints and pains associated with the flu.  Multiply by 5.  Add a smashing headache, with a distinct pain behind the eyes, and that is Dengue Fever.  Moving hurt.  Everything hurt, actually.

Friday everything peaked.  In a nutshell, on Friday I felt like I had Dengue Fever with morning sickness, exacerbated by sleep deprivation and the pain of recovering from major surgery. It was also pizza and movie night with the kids.  I managed to make it through the movie and tuck the kids in before collapsing on the bed.  Thankfully, the kids had a fun weekend planned with their cousin, so that I can rest and rebuild.

As I write this, on day 6, I feel like I’m over the hump on my first round of chemotherapy.  It is early Sunday morning.  I am sitting on my couch, watching the sky change from black, to blue-green to pink and orange, the birds are singing, and I’m feeling alright.