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!

Super Powers

I suppose you could say I’m settling into the routine of daily radiation, but it is not as easy as I thought it would be. The first three sessions certainly took the longest, and were the most uncomfortable. Now that the measurements are all established, each session does go fairly quickly. The 15 minute sessions are short, but the commute, parking and waiting room time adds up. The radiation department at my hospital is under renovation, so I have to travel to a farther location for radiation. I got spoiled on weekly chemotherapy appointments within 10 minutes of home. Now, I face daily appointments 25 minutes away, along with a bigger hospital with more parking issues, too. So my 15 minute appointment ends up consuming nearly 2 hours each day.

 

Everyone says radiation is a breeze. You aren’t supposed to feel anything and side effects are limited. Maybe this would be true for me, except for the fact that my right arm has been through so much recently. Elbow surgery followed by rotator cuff surgery, followed by a bilateral mastectomy with lymph node involvement makes it REALLY difficult to lay on a hard table with my arm stretched up over my head. Holding that position for even 10 minutes is painful.

 

First, they have a special mold that they set on the table to position my head and arms accurately each time. Then they use the computer to achieve precise measurements to line up the areas targeted for radiation. This usually involves them pulling or pushing or rolling me around on the table with instructions to lay still and let them position me, usually resulting in a very uncomfortable position. Inevitable, that’s when I get an itch on my nose that I have to ignore.  The table moves up or down and pivots this way or that, and the machine moves around me until everything lines up just so. Next, the lights go off, beams of light show where the radiation will go and they use markers on my skin to draw lines along the beams. Then the lights go on, everyone rushes out of the room, leaving me alone as the machine clunks and buzzes with radiation.   Minutes go by, the lights go off again and the technicians come back in, engrossed in their conversations, and pull and arrange me on the table again. Lights on, repeat. Lights off, repeat. Done.

 

Once a week, there are more x-rays and I meet with the doctor to discuss how radiation is going. At this point, there’s not much new to discuss, as we don’t expect to see any side effects until week 3. After session number 5, the doctor said, “5 down already, see how fast it’s going?”. Actually, no. It’s kind of dragging on and on already. And only 28 to go… Small price to pay to achieve super powers.

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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!”