Hair Raising

Literally.  Watching hair grow.

Because I had too much time on my hands last year, and not much energy, I started taking daily selfies.  Watch time fly and hair grow as I document the rapid changes that took place over the past year of cancer treatment.  When I first knew I would lose my hair, I let my kids cut it short and we donated the ponytails.  Then we added some color.  Soon the razor came out, and it was gone.  Next, a fabulous Henna Tattoo.  And, finally, one day in July, chemotherapy was over, and the long slow process of raising hair began.

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.

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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.

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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.

Wholey Moley

Wholey Moley

D02053

 

By wholey, I mean my whole body. By moley, I mean moles. What I’m getting at is that my whole body has always had a lot of moles. Being a fair skinned woman who loves the feel of the sun, I’ve always needed to watch my moles carefully for changes. I’ve always been advised to go for an annual check by a dermatologist to make sure none of them are turning cancerous. In the past, there have been a few I have had removed which tested as “pre-cancerous”. Well, as we all know, time flies faster as we age, and life gets busy. “Annual” usually ends up meaning every 3 or 4 years or so, when I remember that I’m overdue for the annual check. Prompted by my medical oncologist who expressed that I had FLM (funny looking moles), I went in yesterday for a consultation. I learned a few interesting things from my new dermatologist. In fact, I’m glad my medical oncologist referred me to this dermatologist, because I learned more in the 20 minutes in his office than I had known about skin cancer all my life, despite trying to inform myself over the years.

The first question I asked was, “does that fact that I just went through chemotherapy mean that any cancerous changes in my moles would have been destroyed by the chemo?” Surely, that seems logical, but the answer was counter to what I would have suspected. He said that the since the chemo weakens the immune system, thus making it harder for the body to fight things on its own, skin cancers actually tend to “come to light” during chemo. So due to the weakened immune system, skin cancers can actually grow and change more during chemotherapy.

Years ago, when I first started watching my moles for changes, I was told that I had Dysplastic Nevi (atypical moles) syndrome. Basically, anyone with a lot of large, irregular moles is at a higher risk of developing Melanoma. What I learned yesterday is that if someone with more than 6 large, irregular moles also has one immediate family member with melanoma, their risk increases to 50%. If they have two immediate family members, the risk is 100% that they will develop a melanoma. Wow!

Another thing I learned is that skin cancers don’t always appear on the parts of the body that have been exposed to the sun. Many times people miss deadly melanomas because they can appear on the bottom of the feet, in between toes and on butts, where, I can assure you, the sun has not shone (on me, anyway…)

Also, another important lesson I learned is that skin cancers don’t always appear as changing moles. In fact, most of the melanomas found on people with atypical moles arise from normal skin and not an atypical mole. The first thing the dermatologist found yesterday was a scaly patch just above my eyebrow ( a common place for skin cancers) that I did not even know existed. Sure enough, after he brought my attention to it, I could definitely feel it. This patch could have progressed to cancer without my awareness. A blast from his cryosurgery device froze that patch off in about 10 seconds. Such an easy way to halt cancer in its tracks.  Especially in comparison to the year-long battle I’m in the midst of against breast cancer.

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I learned that size does matter…when discussing moles. We all know the ABCDEs of melanoma, right? (A) Asymmetrical moles with irregular (B) borders and uneven or varied (C) color, over a certain (D) diameter that are (E) evolving can be trouble. I had some moles that fit the ABC, but were under 6mm in diameter (D), so the doctor said we didn’t even need to consider these smaller moles.

The last, and most useful thing I learned in yesterday’s informative consultation was that, much like the importance of keeping on track with my annual mammograms and breast cancer screenings (which I might not have done religiously), it is very important for me to keep up with my annual skin cancer screening. I made next year’s appointment on my way out of the office yesterday. Cuz I’ll be damned if I’m going to allow another cancer go unchecked in my lifetime…

Respite

Respite

I have spent the last month attempting to keep all things “cancer” out of my mind. Apparently, that included posting to this blog, as I realize it has been over a month since I’ve updated everyone who follows me here. Cancer treatment is a long road and can consume all of one’s time, energy and thoughts. Clearly, it is a road worth taking, but like any long journey, sometimes it is necessary to step back and gain a different perspective before continuing. This month long break between chemo and radiation was just the respite I needed in order to rebuild the strength and determination I need to finish stomping cancer out of my life.

The last round of chemotherapy brought some challenges, but my focus in July was to push through and enjoy as many fun summer activities as possible before the start of radiation, which will impose some limitations on me.

I think I did fairly well during this break in treatment. My returning energy levels and diminishing side effects allowed me to take a couple of camping trips (one by motorcycle), I did some hiking, spent a week at the family lake house, attended state fair (I even went on a couple of rides), and hit some outdoor music festivals. Sadly, I was unable to participate in the Riverwest24 (a great neighborhood 24 hour bike race), but I was able to observe the event as a spectator, which gave me an opportunity to see friends and share the event with my kids. All of this was punctuated by weekly doctor appointments which served to remind me that I’m not over this yet.

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By the end of July, I had a final appointment with the medical oncologist, during which she told me that I was doing great and my blood work proved that I was ready to move on to radiation. She passed me on to the Radiation Oncologist, with whom I met on Friday, July 29th. He seemed confident that I would tolerate radiation without problems. He assured me that it would be a breeze compared to chemotherapy. I was told to expect fatigue, and localized damage and burning to the skin at the site of the radiation. I was also told to stay out of the sun and no swimming. This was, perhaps, the hardest pill to swallow, as August is my favorite month specifically because I love hot weather, the feel of the sun and swimming (things that are cruelly limited in Wisconsin). After the meeting with the doctor, I went in for radiation mapping. The mapping involves a CT scan, lots of measurements and small tattoos to mark the precise location where the radiation will be targeted. After this appointment, I was scheduled to start radiation on August 6th, which allowed me one more weekend to escape.

I took the opportunity to combine two of my favorite things for the first time. Motorcycling and camping. Both are also a huge passion of my boyfriend’s – so much so, that he has several books on the topic (traveling250.com for more). We had a campsite reserved north of WI Dells, but a last minute change allowed us to meet up with some of Andy’s friends, an Australian couple traveling the world by motorcycle. Their travels brought them to the EAA fly-in in Oshkosh, so we left Milwaukee a day early so we could join them. It was my first time to the fly-in. I was completely blown away by the magnitude of the event.

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The ride took us through some significant storms and we arrived, late, to a soggy campground, where we had to set up the tent in the dark. It was worth it, as we got to share some wine and travel stories with some fascinating travelers well into the night. The following day, we walked all over the elaborate grounds of the EAA, attempting to squeeze way too much into too little time, as we wanted to leave early to beat the rain to our next campsite. We didn’t quite make it, and we arrived at Roche-a-Cri state park just as the hail hit. The ranger let us hang out in their shelter until we got a clearing in which to set up camp and cook dinner. The next two days were beautiful and we filled our time with hiking, relaxing and a couple of motorcycle meet ups with a group of friends, which took us through the dells, and a trip on the Merrimack ferry on the way home Sunday.

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Back to my current reality after the camping trip, I went back to the hospital (Andy wouldn’t let me run away and extend our trip indefinitely…). Wednesday, August 6th would be my first day of radiation, which actually involves simulating the treatment with x-rays and further measurements and fine tuning to make sure everything is correct before administering the radiation. It was torture! Still not properly healed from rotator cuff surgery, I found it extremely difficult to lay still with my arms up over my head for such a long time. First, my arm went numb. Then it progressed to pain, then my arm started to shake from the pain, at which time I was reprimanded for moving and told that if I wasn’t completely still we would have to start from square one again. That was enough to make me push through, but I was nearly in tears by the end and not sure I would be able to hold this position 33 more times (yes, 5 days a week for 6 and a half weeks). They told me that the simulation would be the longest one and that subsequent sessions would not be that bad, so I went back again on Thursday to start radiation. Again, there was some fine tuning and double checking, and my arm went numb again, but did not have time to progress to pain by the time it was over. Friday was shorter yet, and my kids were with me, so they got a chance to see what I would be going through, which removed some of the mystery for them. They got to see the machine that gives their mom super-powers. And they got chocolate. What more could you want?

Last Round. Done.

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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.