June 13 2012
Where to begin. Seems as though there is much to catch up on, yet, still somehow in the same place as before. Or so I thought. I had just finished radiation at the end of my last post, I think. I had celebrated the completion of a long journey. What I didn't realize, perhaps, this is only the beginning.
The beginning of a lot. Of interesting realizations. Okay, done with treatment, NOW I can resume whatever it was I was doing before my diagnosis. Let's see... (as I remind myself by reading my first entry), making mani-pedi appointments, planning recipes, preparing for holidays, researching vacation destinations. Looking for a job. Big time stuff. That moment (defined here by a few months - a very long moment) that you realize you know so very little about yourself and the world. There is no going back completely. Not in the way it was before. Cancer treatment is much much much more than mammography, chemotherapy, surgery, physical therapy, radiation, tamoxifen. But it's SUPPOSED to be that easy! That's the deal when you have something as bad as cancer. The prize is that you can resume your life after, everything is the same and familiar. RIGHT? What color should my toes be today!? It should be that easy. But somehow it's more of a challenge than I ever expected. I'm still very much here, but why do I feel like at times something that was good died inside me anyway? Just as I was in denial of the tumor being there in the first place - to the point of arguing about it with the surgeon who did the biopsy of doom - I expended a lot of energy fighting with myself over whether I'm truly done with treatment, in the metaphorical sense. The answer is a resounding no. Maybe I'll never be. This realization is downright leveling to my sensibilities.
This, I've learned, is survivorship. This ubiquitous presence cancer subliminally assumes inside you. The ultimate irony. Thanks to the toxins and hacking off a whole body part it's gone from inside me only physically, but it remains there in a much more complex way. I'm getting further and further away from the after effects of daily treatment drudgery. There are only minimal physical side effects remaining. Well, maybe phantom itching on my arm that when I reach over to scratch I realize it's still numb (and probably will always be). Sensations in my elbow and shoulder that are usually more haunting than truly painful. Strange tickly chills that come and go without warning. My port and scar are still intact for the time being. Somehow I've developed this strange attachment to the "button", as the girls refer to it, protruding from my right side. Well today at least. The tangible aspects of this disease are becoming rather easy to manage. Undoubtedly I've emerged from this relatively unscathed. So many people faired far worse. I am forever grateful for the support from the medical community, family, friends, strangers, for even the simplest but most heartfelt sentiments supporting my quest for health. Every little word and thought and positive vibe, not to mention cards, gifts, meals, offers for help, support and tokens of good health and healing from strangers sent my way was deeply felt.
So how to move on, mentally, spiritually, and psychologically beyond the physical aspects of the disease is I believe at the heart of survivorship. There are worse fates! I never realized survivorship to be its own official phase in this process. But it does and it's real and an integral part of the journey. There's a whole new person in here I feel compelled to get to know and like (and love) all over again.
I started by sharing my story at a small fundraiser for an organization assisting families touched by cancer. The illness that I rarely spoke about beyond friends, family and medical personnel is what I decided I should share with about 100 strangers. I was thankful for the open bar. I used to do so much public speaking for work, so years later, grabbing the mic for this purpose seemed surreal, in a calming sort of way. A reminder that, while I feel new, elements of the old me are still there and purposeful. And sometimes those reminders are valuable. I am still overwhelmed when I think about the people who reached out to help us. Giving back in this way seems like a good start to create a bit of equilibrium on the road trip of survivorship. I collected more hugs and wishes for good health at this event. And even gifted with a terrific yoga mat and gift certificate for a spa....recounting the course of my treatment with a smile.
I also joined a support group in cooperation with the hospital for women in all phases of treatment. We are all down a breast or two, some opted for Honda Civics for their treatment, others such as myself went for the Bentley of treatment plans with all the bells and whistles. We all have something unique and inspirational to bring to the discussions. We also do group physical therapy in a 94 degree water therapy pool with a PT, a Bruce Springsteen fanatic who leads us through various exercises and stretching techniques in the pool. It's more like a giant well-appointed sauna, the pool like a womb, my new re-rebirth. This time with enough hair on my head to cause me to look nearly 3 inches taller when it uncontrollably frizzes out in the heat and humidity of the pool. To feel weightless AND taller AND among people who truly understand as we all sing to Thunder Road...what could be better!? Even if I resemble Art Garfunkle or Lyle Lovett in the process. The pool is a no judgement zone. I left our meetings happily exhausted in a cleansed, balanced sort of way, emotionally and physically.
June was chock full of so many milestones, our tenth wedding anniversary, birthdays, and high school graduation. I am so incredibly proud of my son. I am not sure when he became so mature, well spoken and polished. I was not ever that confident, smart, and genuinely intriguing at 18 as Ed. This summer I am preparing to send him off to college, a whopping 50 minute car ride away to Easton PA. And I don't really mean the refrigerator, sheets and shower caddy. I mean *I'm* preparing *me* for college. It may as well be on another continent. I used to try to convince myself it won't be difficult to send him away - or maybe I really mean watch him leave - that after all, he still needs me, I'm still his mother, and I'm cool, and I get it. Okay, he's far more independent than I dare outwardly give him credit for, I'm not cool in the least, and no, I don't get a lot of these feelings I have. He is a reflection and product of my parenting, I tell myself. And generally, that's a very very good thing. I am craving the pats on the back now more than ever. Ed is a very very hearty pat on my back. The kind that make you nearly fall over. Even if he's off doing what college students do. Which reminds me. I'm not very cool, but I DO know what college students do. Some things change at a breakneck pace, and some things never EVER change. I've got a decent handle on the things that never ever change. Refreshing to keep that perspective on those days you feel your most ancient. Ed knows that I know. We've discussed it at length. That's important!
July 28 2012
So July 30th I hope to be even farther away from the odyssey that took up too much time and energy last year. I'll be having my final surgical procedure to nearly complete my reconstruction. For starters, I came to the conclusion that the port had to go. It was flushed several times since it was used last in October, and it has never been reliable for even a simple blood draw. So even though the usable veins I have left are all quite small and buried in the middle of my arm and nearly unreachable, it doesn't really benefit me to leave the port in either. No, I don't want to return to the infusion room every month for a flush that doesn't work unless I stand on my head, twist my neck to the left and cough violently to force open the vessel. When this happens, my fellow immunocompromised chemotherapy patients usually end up requesting a new seat away from me on the opposite side of the room. This is not the fastest way to make new friends. Doctor said he could probably clean up the scar a bit too. Which I learned is much longer and meaner looking than it should have been. Doctor will also refine and minimize my abdominal scar - I am not sure how - and perform liposuction to rid of roughly 1 1/2 lbs of extra fat from my hips (you read that right) for additional contouring, to get me as close to my pre-cancer state as possible. Then I'll have a seaweed wrap, hot stone massage and strong cocktail by that therapy pool. No not really, at least not Monday. He will, however, perform a tiny skin graft and finish my nipple, which will then be tattooed a natural looking pink to match the real one I still have. I was thinking of some alternative tattoos and wondered if Doctor would consider, instead of the basic pink circle.....maybe an eyeball, staring back up at you...a bird...a heart, or a sign that says "objects here seem larger than they appear" or something like that. I'm not sure. The options are endless. I could get it pierced, there's no feeling there anyway. Really, all of this is quite liberating, and the source of lots of laughter over glasses of wine with my loved ones. Amazing how a teeny tiny piece of skin can mean so much to a girl. The once enviable rack will be back. And I am looking forward to the final product of me. Whenever that will be. That's worth a pat on the back too, I think.
Monday, July 30, 2012
Tuesday, January 31, 2012
Ironies and Itineraries
So January 31, assuming no glitches beyond my control, will be my last radiation treatment. I can't help but observe the strange ironies surrounding the past seven weeks and this phase of my treatment. And realizing what it all means with respect to this entire cancer journey.
For one thing, I am pleased the roads have stayed dry and the air warm during the early mornings I made the trek down to Morristown, making the 25 minute commute nearly enjoyable. Birds chirping in the morning. Feels like April. When I should be bundled in multiple layers, usually a big sweatshirt is all that's been needed for that dash across the street from the parking garage into the hospital. The warmest winter I can remember, in more ways than one.
Actually, radiation for oncology is neither warm nor bright. You don't feel or smell anything. The room is white, sterile, and cool. And while the therapist adjusts the table, the room has to be dark so the guiding laser pointers coming from the wall can be seen against the area to be blasted. I started believing it was a bunch of hype. Lay down, arms up, head turned to the right, hold still for a weird sizzling buzzing noise for twenty or so seconds (and since when does radiation make a sound?), then the big mechanical wall opens to let the therapist in to change my position for the next blast. Back and forth the white-coated therapists go in and out of the moving wall. I'm reminded of the opening TV sequence to "Get Smart". This secretive science that I really don't understand. But it's powerful and I have to take it seriously! Just be still, let us move you, the machines do all the work. We just walk in and out of the room through the moving wall...(cue the Get Smart theme in the back of my head)...
I received five separate blasts during my treatment. Concentrating mostly on my underarm, the back of my upper arm, and directly below my collar bone. Total time on the table is about 10 minutes. Most of that is taken up by the therapists walking in and out of the room and driving the machinery into its various positions. Time is eaten if you inadvertently adjust yourself or move. Don't try to hold still on the table when you have a head cold. Of course, you can't keep your eyes open when you sneeze, you also can't be still for radiation and sneeze. Or cough. Or itch. As I laid there, I wondered how I'd be radiated if I had Tourette's Syndrome or just was uncontrollably wiggly all the time. Radiation therapists, at least the ones I dealt with, are laid back, low-key, friendly, happy people. SO LONG AS YOU STAY STILL ON THE TABLE. Ten minutes is a long time to endure a dripping nose, wanting to cough, scratch somewhere, etc. And indulging in a scratch will only mean you get to stay longer on the table while they re-adjust you. Much harder than it seems!
About half way through my 28 treatments, the telltale pinkness finally became apparent. As the treatments continued, the pink became a dark orange. I was reminded of those bottles of QT from the '80s I slathered on when catching rays on the back porch. A well defined line between my radiated shade and my normal lily whiteness running across the top of my left side with a perfect triangle behind my arm and a circle directly underneath my collarbone. I guess that's from precise aim and holding still. Moisturize rigorously, I was reminded. Three times per day. More if you like! I saw the radiation oncologist weekly who commented on my skin. "Looking good darling! Still intact...But it will get darker! Remember, lots of lotion!" This is what a roasted chicken must be thinking. Yup, re-baste and go back into the oven for a while longer. I love decadent crispy chicken skin. Of all the years I baked in the sun, the few times I was stupid enough to fry in a tanning booth, never once did the center of my armpit ever see any rays. Until now. Virgin skin no more!
I realized that the pain from the radiation burns would be worse if not for the prior surgery and reconstruction. I remembered I have no feeling on the lower two-thirds of my new breast, and the inside half of my armpit. So I am tolerating that redness well, but I have to rely on what I see in the mirror to make certain skin remains intact. And even though it seemed to take an eternity to get the girls potty trained, the giant tub of Eucerin ointment I bought for their diaper rash will finally be used up. Who knew it would have so many uses? By visit 17, I officially became the shade that makes a dermatologist cringe. Ironically, I received positive feedback from the oncologist. "Great, hon! Your skin is holding up well! Consistent color! Remember, lube up four times a day now, and watch for weeping blisters!"
By the last week, I'd had enough. Virtually overnight, the accumulation of 23 visits finally revealed itself. Angry, sensitive, red, hot, tight skin. Muscle strain. Itchy and painful. Skin starting to break and in some spots looking ashy brown. Wearing a bra is not an option. And no, that's not as much fun as it may sound. Even cotton jersey is somehow painful. No, I'm not prancing about my home topless. All the Eucerin in the world doesn't help this other than keep me slimy and sticky. Chilled pure aloe vera gel helps. The doctor gave me a bottle of saline and soft soaking gauze strips. The saline chilled in the fridge is helpful. She ordered me a bucket-sized container of silver sulfadiazine large enough to spackle my entire upstairs. And an invitation from the nurse for a script of vicodin. I laughed. There was a time when I wanted to be this color. And I was. All over! Now I'm whining because I've forgotten how uncomfortable a burn is, but technically I don't feel most of the burned skin anyway. But apparently in need of more painkillers. I thanked her and decided I would work this out with ibuprofen. The doctor instructed me to take two days off. I nearly begged her to go back on the table. Please, let me go so I can endure more misery! I just want to be finished with this silliness. I want to be able to scratch and sneeze on a whim. But I was sent home discouraged instead, ordered to nurse my redness, feeling this odyssey will never end. With this time off, the earliest I would finish would be January 31, as my two days off would be tacked onto the end of my treatment schedule.
Fatigue is a weird thing but along with the burns, another real effect of radiation therapy and it's hard to pinpoint. It is not debilitating exhaustion. It's not corrected with napping. As I can see my active cancer journey coming to an end, I'm thinking a lot more. Is all this thinking tiring me out? This was supposed to be the easy part. Is this from the radiation or the sheer emotional weight of this experience wearing on me? Maybe a little of both.
Flashbacks of campy '70s TV, citrusy skintones and roasted poultry aside, I'm left with the concept that starting in February, everything will be a little different. Different and unknown is unsettling. Yes, I will presumably be free of cancer, just like I was before. But it's different this time. This is an experience that will live in me. I believe to be free of active cancer. But I'm still forever changed by it. Cancer is out of my body but it's not out of my mind. I'm not sure this can be avoided. Maybe it shouldn't be anyway. My entire life approach to myself will be - must be - radically different. Many more doctor's appointments, blood work, various screenings and probably some medications, at least for the next few years. Nothing can be just ignored or wished or willed away. But I don't even really mean that. That place in my mind that cancer will reside forever. And the other part of my mind that will keep the cancer part right there and not allow it to travel anywhere in my life where it is not welcome. While it's ambitious to believe you can be rid of cancer physically as well as mentally and emotionally, well good luck with that. Today I've determined it can't be done. And that it shouldn't be. And that's not a bad thing. My poor mind. I would imagine that little stresses someone out more than a non-early stage cancer diagnosis.
I have realized that there is a connection between the complexion of one's spirit and their physical well being; their will, emotions, and thoughts. Perhaps the mind can work in concert with the body to optimize or promote health. I have believed that spirituality - well not necessarily organized religion - plays a role in promoting health. Emotions play a role. And I have always believed stress control probably could be factor in overall health as well. While I always believed this in a practical sense, I never really knew how to explore this belief in a tangible way.
During the course of my radiation treatment I started to get involved with reiki. Reiki is a Japanese holistic healing modality that encourages stress reduction, relaxation, and thus restorative health. There is a trust commitment with Reiki in that you rely on a practitioner to provide you with healing energies through their hands on or near various areas of your body. I've had a few different practitioners work on me, and while all positive, my experiences have been wonderfully varied and rewarding. My reiki sessions have allowed me to relax completely and remove myself from the present to a place driven by positive visual expressions and affirmations. It is complete and total relaxation, and more powerful than I can readily express in words here.
Okay doubters, I know what you're thinking. It can't replace concrete, science driven data supporting various lifestyle behaviors that keep us all healthy. I don't believe it's really supposed to. But as a supplemental, holistic approach to the very stresses that concrete science has a harder time controlling, and those negative situations that I believe may contribute in some way to disease or pain, it's a great complement to other treatments. Sad to say the effort involved in getting to the place of complete absence of all that stresses me is a challenge, but the trip is well worth it. "Getting there" is something that requires practice. And in future reiki sessions I hopefully will be able to perfect my commute to "that place". It's a wonderful, joyous place to be.
So even though the trips to the hospital will slow down a bit, I have other amazing places to visit. This journey's not over. It might not ever be. But that's okay.
For one thing, I am pleased the roads have stayed dry and the air warm during the early mornings I made the trek down to Morristown, making the 25 minute commute nearly enjoyable. Birds chirping in the morning. Feels like April. When I should be bundled in multiple layers, usually a big sweatshirt is all that's been needed for that dash across the street from the parking garage into the hospital. The warmest winter I can remember, in more ways than one.
Actually, radiation for oncology is neither warm nor bright. You don't feel or smell anything. The room is white, sterile, and cool. And while the therapist adjusts the table, the room has to be dark so the guiding laser pointers coming from the wall can be seen against the area to be blasted. I started believing it was a bunch of hype. Lay down, arms up, head turned to the right, hold still for a weird sizzling buzzing noise for twenty or so seconds (and since when does radiation make a sound?), then the big mechanical wall opens to let the therapist in to change my position for the next blast. Back and forth the white-coated therapists go in and out of the moving wall. I'm reminded of the opening TV sequence to "Get Smart". This secretive science that I really don't understand. But it's powerful and I have to take it seriously! Just be still, let us move you, the machines do all the work. We just walk in and out of the room through the moving wall...(cue the Get Smart theme in the back of my head)...
I received five separate blasts during my treatment. Concentrating mostly on my underarm, the back of my upper arm, and directly below my collar bone. Total time on the table is about 10 minutes. Most of that is taken up by the therapists walking in and out of the room and driving the machinery into its various positions. Time is eaten if you inadvertently adjust yourself or move. Don't try to hold still on the table when you have a head cold. Of course, you can't keep your eyes open when you sneeze, you also can't be still for radiation and sneeze. Or cough. Or itch. As I laid there, I wondered how I'd be radiated if I had Tourette's Syndrome or just was uncontrollably wiggly all the time. Radiation therapists, at least the ones I dealt with, are laid back, low-key, friendly, happy people. SO LONG AS YOU STAY STILL ON THE TABLE. Ten minutes is a long time to endure a dripping nose, wanting to cough, scratch somewhere, etc. And indulging in a scratch will only mean you get to stay longer on the table while they re-adjust you. Much harder than it seems!
About half way through my 28 treatments, the telltale pinkness finally became apparent. As the treatments continued, the pink became a dark orange. I was reminded of those bottles of QT from the '80s I slathered on when catching rays on the back porch. A well defined line between my radiated shade and my normal lily whiteness running across the top of my left side with a perfect triangle behind my arm and a circle directly underneath my collarbone. I guess that's from precise aim and holding still. Moisturize rigorously, I was reminded. Three times per day. More if you like! I saw the radiation oncologist weekly who commented on my skin. "Looking good darling! Still intact...But it will get darker! Remember, lots of lotion!" This is what a roasted chicken must be thinking. Yup, re-baste and go back into the oven for a while longer. I love decadent crispy chicken skin. Of all the years I baked in the sun, the few times I was stupid enough to fry in a tanning booth, never once did the center of my armpit ever see any rays. Until now. Virgin skin no more!
I realized that the pain from the radiation burns would be worse if not for the prior surgery and reconstruction. I remembered I have no feeling on the lower two-thirds of my new breast, and the inside half of my armpit. So I am tolerating that redness well, but I have to rely on what I see in the mirror to make certain skin remains intact. And even though it seemed to take an eternity to get the girls potty trained, the giant tub of Eucerin ointment I bought for their diaper rash will finally be used up. Who knew it would have so many uses? By visit 17, I officially became the shade that makes a dermatologist cringe. Ironically, I received positive feedback from the oncologist. "Great, hon! Your skin is holding up well! Consistent color! Remember, lube up four times a day now, and watch for weeping blisters!"
By the last week, I'd had enough. Virtually overnight, the accumulation of 23 visits finally revealed itself. Angry, sensitive, red, hot, tight skin. Muscle strain. Itchy and painful. Skin starting to break and in some spots looking ashy brown. Wearing a bra is not an option. And no, that's not as much fun as it may sound. Even cotton jersey is somehow painful. No, I'm not prancing about my home topless. All the Eucerin in the world doesn't help this other than keep me slimy and sticky. Chilled pure aloe vera gel helps. The doctor gave me a bottle of saline and soft soaking gauze strips. The saline chilled in the fridge is helpful. She ordered me a bucket-sized container of silver sulfadiazine large enough to spackle my entire upstairs. And an invitation from the nurse for a script of vicodin. I laughed. There was a time when I wanted to be this color. And I was. All over! Now I'm whining because I've forgotten how uncomfortable a burn is, but technically I don't feel most of the burned skin anyway. But apparently in need of more painkillers. I thanked her and decided I would work this out with ibuprofen. The doctor instructed me to take two days off. I nearly begged her to go back on the table. Please, let me go so I can endure more misery! I just want to be finished with this silliness. I want to be able to scratch and sneeze on a whim. But I was sent home discouraged instead, ordered to nurse my redness, feeling this odyssey will never end. With this time off, the earliest I would finish would be January 31, as my two days off would be tacked onto the end of my treatment schedule.
Fatigue is a weird thing but along with the burns, another real effect of radiation therapy and it's hard to pinpoint. It is not debilitating exhaustion. It's not corrected with napping. As I can see my active cancer journey coming to an end, I'm thinking a lot more. Is all this thinking tiring me out? This was supposed to be the easy part. Is this from the radiation or the sheer emotional weight of this experience wearing on me? Maybe a little of both.
Flashbacks of campy '70s TV, citrusy skintones and roasted poultry aside, I'm left with the concept that starting in February, everything will be a little different. Different and unknown is unsettling. Yes, I will presumably be free of cancer, just like I was before. But it's different this time. This is an experience that will live in me. I believe to be free of active cancer. But I'm still forever changed by it. Cancer is out of my body but it's not out of my mind. I'm not sure this can be avoided. Maybe it shouldn't be anyway. My entire life approach to myself will be - must be - radically different. Many more doctor's appointments, blood work, various screenings and probably some medications, at least for the next few years. Nothing can be just ignored or wished or willed away. But I don't even really mean that. That place in my mind that cancer will reside forever. And the other part of my mind that will keep the cancer part right there and not allow it to travel anywhere in my life where it is not welcome. While it's ambitious to believe you can be rid of cancer physically as well as mentally and emotionally, well good luck with that. Today I've determined it can't be done. And that it shouldn't be. And that's not a bad thing. My poor mind. I would imagine that little stresses someone out more than a non-early stage cancer diagnosis.
I have realized that there is a connection between the complexion of one's spirit and their physical well being; their will, emotions, and thoughts. Perhaps the mind can work in concert with the body to optimize or promote health. I have believed that spirituality - well not necessarily organized religion - plays a role in promoting health. Emotions play a role. And I have always believed stress control probably could be factor in overall health as well. While I always believed this in a practical sense, I never really knew how to explore this belief in a tangible way.
During the course of my radiation treatment I started to get involved with reiki. Reiki is a Japanese holistic healing modality that encourages stress reduction, relaxation, and thus restorative health. There is a trust commitment with Reiki in that you rely on a practitioner to provide you with healing energies through their hands on or near various areas of your body. I've had a few different practitioners work on me, and while all positive, my experiences have been wonderfully varied and rewarding. My reiki sessions have allowed me to relax completely and remove myself from the present to a place driven by positive visual expressions and affirmations. It is complete and total relaxation, and more powerful than I can readily express in words here.
Okay doubters, I know what you're thinking. It can't replace concrete, science driven data supporting various lifestyle behaviors that keep us all healthy. I don't believe it's really supposed to. But as a supplemental, holistic approach to the very stresses that concrete science has a harder time controlling, and those negative situations that I believe may contribute in some way to disease or pain, it's a great complement to other treatments. Sad to say the effort involved in getting to the place of complete absence of all that stresses me is a challenge, but the trip is well worth it. "Getting there" is something that requires practice. And in future reiki sessions I hopefully will be able to perfect my commute to "that place". It's a wonderful, joyous place to be.
So even though the trips to the hospital will slow down a bit, I have other amazing places to visit. This journey's not over. It might not ever be. But that's okay.
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