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.
Monday, December 19, 2011
Is this my exit?
I'd like to think that with one radiation visit behind me, the warning sign for the exit ramp off the cancer highway is within sight. I'm still enjoying the spoils of my trifecta cancer winnings: chemo, surgery, radiation. I wanted to believe that there's nothing left here for me to rehab, ingest, infuse, consume, consider, you name it. My once purposeless follicles have emerged from their toxic unemployment. Scars have started to fade. Flexibility has returned. But as a cheesy and seductive marketing campaign would suggest at 3:00 am, but wait, there's more!
Pathology. 15 lymph nodes removed. 2 were malignant. Two too many. My oncologist seems genuinely thrilled. I guess I can learn to be too. This nugget gets shoved into the folder labeled "whatever". I refuse to lose sleep over stuff like this. Can't do anything about pathology reports. My oncologist and I talked about drug therapies. This for a few years, then that. Hormone this and that. Bloodwork here and there. New tests in the spring. Just one little pill for now, I ask him? Yes. Just one pill for now. All that I have been through, and the next step is one measly little daily pill. Yes, I think my exit is up ahead. Moving forward, however, there will be a new standard of my personal normal. Medically, diagnostically, nutritionally, psychologically. This is about making sure the beast stays far in my past. Yes, I'm a little motivated to stay off that road for a long time.
In other news, the plastic surgery has been a success. My abdominals have probably not been this flat since 1993. This new body I find myself in feels strange at times. My new breast is an evolving work in progress. It is me, 100% authentic and will continue to further assume the appearance of a conventional breast by the early summer when the final touches can be applied. I have no feeling for about two inches beneath my entire front waistline from hip to hip and on the lower half of my new breast. This is a permanent side effect of the surgery. This is why I have to be careful with loose fitting pants, with no sensation I may not realize they are falling off me (an unanticipated consequence that especially humors Sean). I have some touch up liposuction I can get too, post operative 'contouring', as it's known. In the meantime, I still have curves, I still fill out a bra, and there's still cleavage. I'm still me. I would have been anyway. While recovery from this surgery was rather excruciating - and I will add in some ways worse than chemo - it was well worth it. This is the apex of the plight of dealing with any fear, related to cancer or otherwise, I could possibly imagine:
I walked into the hospital last week for my radiation dry run. They pretend to give you radiation, but insist that you lay still in your exact position because the pretend radiation may miss its mark! Head to the right, chin up, arms up. Zap. Silence. Ping. More silence. Lights go out then come back on. Machines move silently up and over my head. Six little freckle tattoos later, and I'm ready for the real thing on December 19th. Just lay on this cold narrow table in the middle of the spacious and sterile hospital room with equipment that is reminiscent of the old set from Star Trek. Reminders of "Breathe normally" "Don't move" and "Just a few more minutes" as I'm laying in the now familiar shapeless light blue gown that ties in the back. All the while telling myself, remember, chemo was way worse, all I have to do is lay here. Let's see, three lunatic children and a dog at my chaotic home, and I am forced to lay still in this quiet room. This is not so bad. Ten minutes, at most. Wondering why my nose has to itch now, of all times. The parking attendants, techs and other assistants are all starting to look familiar. I was pleased that the preliminary pictures and dry run went well.
Marched out of Radiology and into the cancer center's main lobby - and out the EXIT - to debut the new 1/2" hair on my head. Garnier Medium Coconut Brown to cover the persistent grey. Very short, but very thick and shiny. Holding my hat in my hand. Empowered! Yeah hospital...Here I am! And with my own hair! No hat, wig, or wrap! I'm reminded of the opening scene to the Mary Tyler Moore Show. No, I didn't toss my hat in the air, but heck, I'm gonna make it after all.
Pathology. 15 lymph nodes removed. 2 were malignant. Two too many. My oncologist seems genuinely thrilled. I guess I can learn to be too. This nugget gets shoved into the folder labeled "whatever". I refuse to lose sleep over stuff like this. Can't do anything about pathology reports. My oncologist and I talked about drug therapies. This for a few years, then that. Hormone this and that. Bloodwork here and there. New tests in the spring. Just one little pill for now, I ask him? Yes. Just one pill for now. All that I have been through, and the next step is one measly little daily pill. Yes, I think my exit is up ahead. Moving forward, however, there will be a new standard of my personal normal. Medically, diagnostically, nutritionally, psychologically. This is about making sure the beast stays far in my past. Yes, I'm a little motivated to stay off that road for a long time.
In other news, the plastic surgery has been a success. My abdominals have probably not been this flat since 1993. This new body I find myself in feels strange at times. My new breast is an evolving work in progress. It is me, 100% authentic and will continue to further assume the appearance of a conventional breast by the early summer when the final touches can be applied. I have no feeling for about two inches beneath my entire front waistline from hip to hip and on the lower half of my new breast. This is a permanent side effect of the surgery. This is why I have to be careful with loose fitting pants, with no sensation I may not realize they are falling off me (an unanticipated consequence that especially humors Sean). I have some touch up liposuction I can get too, post operative 'contouring', as it's known. In the meantime, I still have curves, I still fill out a bra, and there's still cleavage. I'm still me. I would have been anyway. While recovery from this surgery was rather excruciating - and I will add in some ways worse than chemo - it was well worth it. This is the apex of the plight of dealing with any fear, related to cancer or otherwise, I could possibly imagine:
Dear Cancer,
First of all, you totally suck. Now that you know this, how dare you choose me to do battle. I mean really. Of all people! Did you honestly think you had a chance? Granted, for a long time you were ubiquitously lurking, hanging, seeping and soaking through every available corner and crevice of my consciousness. For many months I slept, ate, crapped, dreamt, thought, breathed, laughed and cried cancer. You came between me and many people, screaming your presence whenever the opportunity reared your ugliness. You ate up a good chunk of my life, some of which at times I believe I can't get back. The break up was at times adversarial but you and I both know this was for the best. Should I keep you on my Christmas card list? Maybe I do need to address your presence now and again but there will not be a reunion any time soon. Surely you have learned your lesson by now. I am fully aware of the tracks on my soul you have left behind. I am a changed person in ways I'm only starting to understand. But that's okay. You are out of my body now but not out of my thoughts. And probably not out of my actions. Because of you, I am better than before. I am better than just whole again. The proper perspectives of everything are now in place because of you. Oh, and the best gift of all, by the way, is that nothing scares me anymore. Nothing. Maybe I need to thank you for that.
Fondly Yours, (and screw you!)
Me
I walked into the hospital last week for my radiation dry run. They pretend to give you radiation, but insist that you lay still in your exact position because the pretend radiation may miss its mark! Head to the right, chin up, arms up. Zap. Silence. Ping. More silence. Lights go out then come back on. Machines move silently up and over my head. Six little freckle tattoos later, and I'm ready for the real thing on December 19th. Just lay on this cold narrow table in the middle of the spacious and sterile hospital room with equipment that is reminiscent of the old set from Star Trek. Reminders of "Breathe normally" "Don't move" and "Just a few more minutes" as I'm laying in the now familiar shapeless light blue gown that ties in the back. All the while telling myself, remember, chemo was way worse, all I have to do is lay here. Let's see, three lunatic children and a dog at my chaotic home, and I am forced to lay still in this quiet room. This is not so bad. Ten minutes, at most. Wondering why my nose has to itch now, of all times. The parking attendants, techs and other assistants are all starting to look familiar. I was pleased that the preliminary pictures and dry run went well.
Marched out of Radiology and into the cancer center's main lobby - and out the EXIT - to debut the new 1/2" hair on my head. Garnier Medium Coconut Brown to cover the persistent grey. Very short, but very thick and shiny. Holding my hat in my hand. Empowered! Yeah hospital...Here I am! And with my own hair! No hat, wig, or wrap! I'm reminded of the opening scene to the Mary Tyler Moore Show. No, I didn't toss my hat in the air, but heck, I'm gonna make it after all.
Thursday, November 3, 2011
The Makings of a Masterpiece
October 25
Surgery day! Mixed feelings. I'd put off dealing with this aspect of the process because, frankly, thinking about a surgeon removing anything of any size, and then essentially moving a piece of my body to another area of my body and everything that goes with it is, well, scary. There I said it. I knew I had to do this. The nerves involved here makes chemo seem like a walk in the park. What I do know is, I don't like to be put under anesthesia. I don't like people telling me what to do. I don't like dismissing any amount of pride in any aspect of the process of hospitalization...changing into the gown - open in the front or back. And then it's the body part in question. I rather liked both my breasts, even in their less than full, post nursing condition, thank you very much. And up until now, I liked my lilly white scarless skin, why even the stretch marks from the twins had faded. I was about to collect some serious merit badges in the test of life.
Still, the clinician in me has a very strong argument: Um, so you have to do this, because right now this is the only thing you can do to prolong your life. Right, and so the debate ends here. It's merely an appendage. I can do this. I will do this. It's just a couple of days cooped up and a few short weeks of rest. Again, I reiterate to myself, this is really no big deal. Right?
And so the four of us, girls in the back of the car, rolling down Route 287 shortly after 5:00 am under a cloudless crisp sky. Strange that the road is empty of the usual traffic backups and typical north Jersey transportation chaos. The girls enjoying a rare ride in the early morning's temporary blackness while awake. Sean would drop me at the hospital, let me wait, register, undress, endure the litany of personal questions and needle pokes, continue to manage my jitters while he drives the girls to preschool, then return to the hospital for my very important pre-operative pep talk and good bye smooch. The routine has become all too familiar.
Out of the blue, Ella, while sitting in the back of the car staring out the window at the sky:
"Mommy, the stars are twinkling."
"Yes, honey."
"Mommy, those are Papa John stars!"
"Ella, what did you just say?"
The girls never met my father. They only know him by his picture on our bookshelf. They should have. Although, maybe there was a secret meeting in a sort of cosmic sense. A huge cloud of peace and calm followed him. I'm reminded of the last few words he and I shared before his passing seven years ago. Of cancer. And all I'll say about that is, he was right. I looked out the window. A warmth - and peace and calm - filled the cabin of the car that is otherwise inexplicable. He's here. I'm certain. And my three year old has just blown my mind. Again. There is something at work here, far bigger and greater than me. In the darkness I let the waterworks release again, the first time in several weeks.
Ella, increasingly annoyed she has to repeat herself, "I said, these are Papa John stars!"
"Mommy," said Gianna, "Ella SAID these are Papa John stars!
"You know, they are."
***
The registration process, in spite of the standing room only waiting area, was rather straightforward. My data, extensive to be sure, is already in the computer, insurance information has not changed. There is something to be said for having all your services at the same facility. I continue to be treated with a great amount of respect and dignity. People going out of their way to ease my fears. Reminding me how far I've come on this journey. I got some strange looks as I am called to the back for the pre-op process, ahead of people who'd been waiting longer than me.
The undress and preparation period moved very quickly. IV started, Plastic Surgeon slipped himself behind my drape to draw his roadmap and take some last measurements. Slowly the parade of characters introduce themselves to me. Anesthesiologist. Surgeon. New Doctor Who Will Help. Head Nurse. Other Nurses. Blood drawn. No, I have no allergies to medicine or anesthesia. I have one filling. I am not wearing contacts. Tap a blood vessel for anesthesia and other things. Four physicians, at least four nurses and a resident. In the confusion, my IV slipped and fluid started to fill my hand and forearm. And I didn't notice until my paper ID bracelet started to rip from the stress of the swelling. That and I realize I can't close my hand. Now that after today, I will be less several lymph nodes on the left side, I am down to one arm of usable veins and arteries on the other side, this might be a problem. Back to the port. I'll just have to arrange for the port to come out at a later time. For now, it became a huge time saver. No need to find another vein through all the extra fluid now filling my one usable arm. I am wheeled off. Making jokes about seaweed spa treatments and martinis. Not bad thoughts by which to fall asleep. And more amazed that twelve hours seems to have passed effortlessly.
In my post operative haze, I try to count the number of machines attached to me:
Surgery day! Mixed feelings. I'd put off dealing with this aspect of the process because, frankly, thinking about a surgeon removing anything of any size, and then essentially moving a piece of my body to another area of my body and everything that goes with it is, well, scary. There I said it. I knew I had to do this. The nerves involved here makes chemo seem like a walk in the park. What I do know is, I don't like to be put under anesthesia. I don't like people telling me what to do. I don't like dismissing any amount of pride in any aspect of the process of hospitalization...changing into the gown - open in the front or back. And then it's the body part in question. I rather liked both my breasts, even in their less than full, post nursing condition, thank you very much. And up until now, I liked my lilly white scarless skin, why even the stretch marks from the twins had faded. I was about to collect some serious merit badges in the test of life.
Still, the clinician in me has a very strong argument: Um, so you have to do this, because right now this is the only thing you can do to prolong your life. Right, and so the debate ends here. It's merely an appendage. I can do this. I will do this. It's just a couple of days cooped up and a few short weeks of rest. Again, I reiterate to myself, this is really no big deal. Right?
And so the four of us, girls in the back of the car, rolling down Route 287 shortly after 5:00 am under a cloudless crisp sky. Strange that the road is empty of the usual traffic backups and typical north Jersey transportation chaos. The girls enjoying a rare ride in the early morning's temporary blackness while awake. Sean would drop me at the hospital, let me wait, register, undress, endure the litany of personal questions and needle pokes, continue to manage my jitters while he drives the girls to preschool, then return to the hospital for my very important pre-operative pep talk and good bye smooch. The routine has become all too familiar.
Out of the blue, Ella, while sitting in the back of the car staring out the window at the sky:
"Mommy, the stars are twinkling."
"Yes, honey."
"Mommy, those are Papa John stars!"
"Ella, what did you just say?"
The girls never met my father. They only know him by his picture on our bookshelf. They should have. Although, maybe there was a secret meeting in a sort of cosmic sense. A huge cloud of peace and calm followed him. I'm reminded of the last few words he and I shared before his passing seven years ago. Of cancer. And all I'll say about that is, he was right. I looked out the window. A warmth - and peace and calm - filled the cabin of the car that is otherwise inexplicable. He's here. I'm certain. And my three year old has just blown my mind. Again. There is something at work here, far bigger and greater than me. In the darkness I let the waterworks release again, the first time in several weeks.
Ella, increasingly annoyed she has to repeat herself, "I said, these are Papa John stars!"
"Mommy," said Gianna, "Ella SAID these are Papa John stars!
"You know, they are."
***
The registration process, in spite of the standing room only waiting area, was rather straightforward. My data, extensive to be sure, is already in the computer, insurance information has not changed. There is something to be said for having all your services at the same facility. I continue to be treated with a great amount of respect and dignity. People going out of their way to ease my fears. Reminding me how far I've come on this journey. I got some strange looks as I am called to the back for the pre-op process, ahead of people who'd been waiting longer than me.
The undress and preparation period moved very quickly. IV started, Plastic Surgeon slipped himself behind my drape to draw his roadmap and take some last measurements. Slowly the parade of characters introduce themselves to me. Anesthesiologist. Surgeon. New Doctor Who Will Help. Head Nurse. Other Nurses. Blood drawn. No, I have no allergies to medicine or anesthesia. I have one filling. I am not wearing contacts. Tap a blood vessel for anesthesia and other things. Four physicians, at least four nurses and a resident. In the confusion, my IV slipped and fluid started to fill my hand and forearm. And I didn't notice until my paper ID bracelet started to rip from the stress of the swelling. That and I realize I can't close my hand. Now that after today, I will be less several lymph nodes on the left side, I am down to one arm of usable veins and arteries on the other side, this might be a problem. Back to the port. I'll just have to arrange for the port to come out at a later time. For now, it became a huge time saver. No need to find another vein through all the extra fluid now filling my one usable arm. I am wheeled off. Making jokes about seaweed spa treatments and martinis. Not bad thoughts by which to fall asleep. And more amazed that twelve hours seems to have passed effortlessly.
In my post operative haze, I try to count the number of machines attached to me:
- Weird hose thing blowing warm air into a plastic quilt hooked to my gown
- Oxygen up my nose
- Blood pressure cuff
- Oxygen output
- Those chest and abdominal stickers
- Compression boots on both legs, that tighten every minute to prevent clots
- IV for benadryl, anti nausea, pain meds, fluids
- 2 abdominal drains
- 2 breast drains
- Catheter
Some stuff is lost on me. Not including the nurse who comes in on an hourly basis to check blood flow of my new breast with a tiny ultrasound device the size of a pen. And invariably to reset a machine, empty something, or fill something. So I find it sort of humorous, in spite of all these machines, the first words out of nearly everyone who I meet is,
"Wow! I really love your toenail polish!"
It's important to pay attention to what really matters.
It became clear very early on that, while all this attention is great, there is no way I'm getting any kind of sleep in this place. As early as 4:30am, begins the herd of people coming in to check on me. The Nurse. One or Both Nursing Assistants Assigned to Me. The Resident. The Plastic Surgeon. The Hot New Doctor Who Helped the Surgeon. The Team of Six Other Medical Students Who Follow the Resident Around. The Other Group of Medical Students Following the Hot New Doctor Around. The Breakfast Tray Guy. The Garbage Lady. The Head Surgeon. Some Random Person Who Delivers the Newspaper. The Person Who Takes Away the Breakfast Tray. Rieki Specialist. The Volunteer Who Gives Communion. The Volunteer Who Delivers Gifts. Acu-pressure Specialist. Ironically, one of the last visitors is the Social Worker-Type Happiness-in-the-Hospital Person (no, I really didn't catch her official title) Who Offers to Put a Do Not Disturb Sign on the Door. (Um, where were YOU at 4:30 this morning??) And they all ask the same questions. I felt like making a sign to place on my door:
- Yes, whatever you are asking about, it's sore
- If it's full, it probably needs emptying
- If the machine is beeping, it's probably because I can't find or reach the call button. Please make it stop
- Even though I've been under anesthesia for half the day, it doesn't count. So I'm still tired
- Jello is not food, especially the sugar free kind
- No, I can't sleep here
- No, I'm not really comfortable. You see, my hormones have been shut off, the thermostat is set to 75 degrees in this room and you are blowing hot air into a plastic quilt you insist must be over me. And I can only have ice chips. Yeah, I'm a little warm.
- I'm fine, considering what I've been through. And I know you are only trying to help. And you are all very kind, and good looking too, Dr. Hot New Doctor Who Helped. The worst clearly is over.
The non stop attention continued through the week. By Friday morning, Hot New Doctor Who Helped came to visit. And out of my drug induced fatigue, I managed to have a short conversation with him. I mentioned I was anxious to go home and sleep.
"Well, that's not my decision. We have to leave that up to your plastic surgeon. He is the one that did the majority of the work. He would not be in favor of sending you home if it was risky or if it would compromise....his....(gesturing with his open hand and waving it over me) his masterpiece..."
Yes, his masterpiece. Yes, there should be no disturbing the masterpiece. Brilliant! Somehow, that was refreshing to hear. *I* am an extraordinary work of art. In progress. Most of which has nothing to do with surgery. But, it may be a long time. The progress might be slower than I'd like. But I'm coming around. Every day. Every day cancer gets further and further away. And out of the battle is emerging a different, better, stronger person. Doesn't mean I won't love a long nap, quiet, learning to address my needs as well as I address others' needs, and maybe some more reiki and acupressure at the hospital when I go back for radiation in the middle of December.
I came home late Friday night. In the darkness of a crisp fall evening. And even though a rare fall nor'easter was headed our way, I noticed those stars were still twinkling.
- Even though I've been under anesthesia for half the day, it doesn't count. So I'm still tired
- Jello is not food, especially the sugar free kind
- No, I can't sleep here
- No, I'm not really comfortable. You see, my hormones have been shut off, the thermostat is set to 75 degrees in this room and you are blowing hot air into a plastic quilt you insist must be over me. And I can only have ice chips. Yeah, I'm a little warm.
- I'm fine, considering what I've been through. And I know you are only trying to help. And you are all very kind, and good looking too, Dr. Hot New Doctor Who Helped. The worst clearly is over.
The non stop attention continued through the week. By Friday morning, Hot New Doctor Who Helped came to visit. And out of my drug induced fatigue, I managed to have a short conversation with him. I mentioned I was anxious to go home and sleep.
"Well, that's not my decision. We have to leave that up to your plastic surgeon. He is the one that did the majority of the work. He would not be in favor of sending you home if it was risky or if it would compromise....his....(gesturing with his open hand and waving it over me) his masterpiece..."
Yes, his masterpiece. Yes, there should be no disturbing the masterpiece. Brilliant! Somehow, that was refreshing to hear. *I* am an extraordinary work of art. In progress. Most of which has nothing to do with surgery. But, it may be a long time. The progress might be slower than I'd like. But I'm coming around. Every day. Every day cancer gets further and further away. And out of the battle is emerging a different, better, stronger person. Doesn't mean I won't love a long nap, quiet, learning to address my needs as well as I address others' needs, and maybe some more reiki and acupressure at the hospital when I go back for radiation in the middle of December.
I came home late Friday night. In the darkness of a crisp fall evening. And even though a rare fall nor'easter was headed our way, I noticed those stars were still twinkling.
Sunday, October 16, 2011
Post Chemo Reflections and Updates
September 29 - Adieu to you!
Final appointment with my medical oncologist. Well for at least a few months. Discussed the usual, fortunately no horrid side effects from final chemo treatment #6 three weeks prior. #6 in a way was easier than #5, less fatiguing with less intestinal upset. My eyes felt burned out and dry from the Taxotere, a rarer but not undocumented side effect, that gradually are starting to feel more normal. Doctor conducted a final exam, punctuated with a flu shot, I believe only the second one I've ever received. He advised me, like I didn't know, that I am "blessed". And that is completely true. I'm blessed to have made it this far with very little to complain about physically. Blessed that my upbeat attitude has, for the most part, remained intact. Blessed that I have had a "very good" response to the chemo. My mass is shrunken to a bit less than half its original size. It is difficult to measure as it has retreated deep inside my chest, like it's searching for safety and hiding away from any additional chemical combat. Blessed that it will realize a rude awakening on October 25th!
This final appointment was like an amicable breakup. Our dates together were nice, we got to know one another well, had some laughs along the way, but it's time to move on. And with a handshake and a genuine wish for continued health, I left. I do need to return after radiation is complete, but in a way, strangely saddened that I was leaving his office for the last time for a long while. Of course I am thrilled to be over this hurdle; but at the same time this facility, filled with such caring individuals represents warmth, hope and comfort, and after a while, familiarity. Strangely, it has come to feel like a second home. That I was leaving for a while represents an amazing achievement I am only beginning to fully comprehend, but also serves as a gentle reminder of the new set of unknowns that are lurking ever closer in my immediate future.
October 5 - A few more angels here on Earth
Anyone who knows me knows that I have a hard time asking for help. I finally met my match when I found out about a small organization that does free housecleaning for anyone of any age and in any stage of treatment of any type of cancer. I simply could not resist. www.canswerlink.org. Just the sweetest women I've been honored to meet. Green cleaning products, they dedicate an hour of their time to clean where ever needs it most in your home, and out the door they go. Not only is it next to impossible for me to ask for help, especially with something that I perceive to be my job, but they demand nothing in return. I couldn't even brew them some coffee. Message? Asking for help has its rewards. I should try it more often! They're coming back again next month and every month I'm still in treatment.
October 7 - Radiation, okay so it's not Cancun, but...
Yet another step in this process, to follow surgery. My radiation will be right downstairs in the hospital from where I had chemotherapy. Was introduced to my physician, who had already reviewed my file and had a treatment plan all laid out for me. 28 radiation treatments, Monday through Friday, roughly 6 weeks. Some time was already built in for holidays, in addition to six weeks' recovery from surgery. The amount of time in the machine is measured in seconds. I was given a tour of the facility. Coffees and teas in the waiting area, gown up, lay in the machine a minute or two, then out. I need to be wary of burning, not unlike a sunburn, and mild fatigue, not unlike spending the day outside. That's it? Cakewalk compared to chemo. *I* can certainly handle a little burn. I was given a 'welcome' packet (even though it seems like this hospital has become my second home, and people say hello like you'd say hello to your neighbor) and invited to take part in holistic services in addition to the radiation...reiki, reflexology, meditation, yoga, painting. This treatment is exceptional. Time to embrace it. The worst is over. I made a promise to myself I'd try some of these additional services while there, which will be daily anyway.
And now....the waiting begins. A watched follicular unit never grows (so it seems)....
Okay, so dramatics aside, time for a little selfish vanity. Allow me a mini-rant. Basically, I want my hair back. Pure and simple. Chemo's over, I understand that hair must be sacrificed in order for the more important work of these dreadful chemicals to be done, I get it. They did their job! I am still so mad that hair matters, it really does, and that I still don't have any. I want my look to reflect how I feel. I am so over the exterior 'cancer' persona. I lost my hair nearly five months ago. First of all, my head is freezing. I have never experienced this sensation before! And I still hate to wear a hat. The synthetic wig is nice, most are fooled that it's not my hair, but it's not fun to wear anymore and its novelty has officially worn off. Real hair wigs just creep me out and they must be styled just like your own hair. I want MY hair. I don't care if it's wiry and gray. Or stringy. Or patchy. I just want hair. I dream of hair, at least once per week. I dream I have my own hair. I once dreamed I had Gianna's hair. Then I dreamed I looked like the Grumpy Old Troll (for those of you out of the preschool loop, a character on Dora the Explorer). Then once, I dreamed I had Kobe's chocolate with salt fur on top of my head. And the weird thing is, I remember being okay with all of these - I had grown something from the top of my head and in my dream, I am at peace. I wake up in the morning sometimes almost surprised I still don't have hair. I over-analyze hair on people on TV. Like, "your hair makes you look like...
October 12. The countdown is on!
So in spite of my hair obsession, I went to the local American Cancer Society chapter office and took advantage of a head cover giveaway. And what do I get? A really short wig. I figure, I need to prepare for short hair, so I grab a short pixie cut wig, inexplicably named the "Annie". Between the long one, Annie and the hair halo, I will not need Halloween costumes for many years to come.
After deciding that Annie should be employed as my new temporary lid, we walked down the hall of the ACS and perused the donated assortment of various headwraps and hats. A woman then came in with her husband. She had just started chemo and her hair had just started falling out. She had to stop treatment because she could not handle the side effects. It was her first visit to the ACS and was clearly still trying to come to grips with her diagnosis. With assistance from an ACS volunteer, she selected a sleep cap and said to her husband, "so I can wear this in bed so you don't have to wake up and be freaked out by my white shiny head." He replied to her, "I really don't care what's on your head. Just be there...next to me."
And with that, I'm reminded how far I've come. I can wait a bit longer. I might act like a Grumpy Old Troll from time to time. It's just hair. I'll be thrilled by what I see in the mirror...in a very short time.
Next was a follow up with my plastic surgeon, who has the task of putting my body back together following the surgical tumor ambush on October 25th. He advised me that he will be able to retain far more skin than I thought. CT scan results show good blood supply. Hoping that the high anticipation of the event itself will render it anti-climatic. Let's get this done already. I really am quite impatient at times.
October 15
That day at the shore finally happened. So I wasn't in the swimsuit like I envisioned. And no, it wasn't for a week in that shore house I imagined, just a half day. Bundled in a few layers of fleece for protection from the brisk wind. I sat with Sean on the empty shore and watched the waves and stared back at the seagulls, who to Gianna's delight approached very closely, wrongly assuming we had food. I sat with Sean and watched the girls draw shapes in the sand with sticks they found, build a 'castle' with piles of damp sand, and decorate their creations with shells. They were so happy chasing each other around in a game of relay-style Tag they'd invented. I thought about that vision of myself I'd had of walking on the beach with all my hair back in the swimsuit with the goods on top looking as they should. No, not quite, but everything that mattered to me was right here at the beach. My husband. My girls, euphorically and blissfully happy by simply being able to run about safely in their bare feet and enjoying their surroundings. The peace of the scene's honesty and the emptiness of the shore. It felt like one of those capstone moments that will stick with me. Frozen in time. I need to make some more of these little moments happen. A delicious short escape from the everyday.
October 18 - ACS Walk
Just another reminder that I have been indoctrinated into a cult of strength, support and hope. Like a forced pledging into a huge sorority. A least a few thousand survivors. supporters, aunts, uncles, dads, children, friends, pets. I, with my friend Rebecca who survived leukemia as a teenager, marched up to the Survivor's table to collect our gear to proudly wear. Bright pink tee shirt and baseball brimmed cap that covered my head but still made my baldness underneath appear obvious and that's okay. Random, unsolicited sentiments of "god bless", "best of luck", and "congratulations". A team of junior-high cheerleaders chanted my name at the midway point to the delight of my girls who shouted along with them. The celebration atmosphere was uplifting. A perfect way to end the weekend. Just nine days away until I can consider myself closer to being cancer free.
Final appointment with my medical oncologist. Well for at least a few months. Discussed the usual, fortunately no horrid side effects from final chemo treatment #6 three weeks prior. #6 in a way was easier than #5, less fatiguing with less intestinal upset. My eyes felt burned out and dry from the Taxotere, a rarer but not undocumented side effect, that gradually are starting to feel more normal. Doctor conducted a final exam, punctuated with a flu shot, I believe only the second one I've ever received. He advised me, like I didn't know, that I am "blessed". And that is completely true. I'm blessed to have made it this far with very little to complain about physically. Blessed that my upbeat attitude has, for the most part, remained intact. Blessed that I have had a "very good" response to the chemo. My mass is shrunken to a bit less than half its original size. It is difficult to measure as it has retreated deep inside my chest, like it's searching for safety and hiding away from any additional chemical combat. Blessed that it will realize a rude awakening on October 25th!
This final appointment was like an amicable breakup. Our dates together were nice, we got to know one another well, had some laughs along the way, but it's time to move on. And with a handshake and a genuine wish for continued health, I left. I do need to return after radiation is complete, but in a way, strangely saddened that I was leaving his office for the last time for a long while. Of course I am thrilled to be over this hurdle; but at the same time this facility, filled with such caring individuals represents warmth, hope and comfort, and after a while, familiarity. Strangely, it has come to feel like a second home. That I was leaving for a while represents an amazing achievement I am only beginning to fully comprehend, but also serves as a gentle reminder of the new set of unknowns that are lurking ever closer in my immediate future.
October 5 - A few more angels here on Earth
Anyone who knows me knows that I have a hard time asking for help. I finally met my match when I found out about a small organization that does free housecleaning for anyone of any age and in any stage of treatment of any type of cancer. I simply could not resist. www.canswerlink.org. Just the sweetest women I've been honored to meet. Green cleaning products, they dedicate an hour of their time to clean where ever needs it most in your home, and out the door they go. Not only is it next to impossible for me to ask for help, especially with something that I perceive to be my job, but they demand nothing in return. I couldn't even brew them some coffee. Message? Asking for help has its rewards. I should try it more often! They're coming back again next month and every month I'm still in treatment.
October 7 - Radiation, okay so it's not Cancun, but...
Yet another step in this process, to follow surgery. My radiation will be right downstairs in the hospital from where I had chemotherapy. Was introduced to my physician, who had already reviewed my file and had a treatment plan all laid out for me. 28 radiation treatments, Monday through Friday, roughly 6 weeks. Some time was already built in for holidays, in addition to six weeks' recovery from surgery. The amount of time in the machine is measured in seconds. I was given a tour of the facility. Coffees and teas in the waiting area, gown up, lay in the machine a minute or two, then out. I need to be wary of burning, not unlike a sunburn, and mild fatigue, not unlike spending the day outside. That's it? Cakewalk compared to chemo. *I* can certainly handle a little burn. I was given a 'welcome' packet (even though it seems like this hospital has become my second home, and people say hello like you'd say hello to your neighbor) and invited to take part in holistic services in addition to the radiation...reiki, reflexology, meditation, yoga, painting. This treatment is exceptional. Time to embrace it. The worst is over. I made a promise to myself I'd try some of these additional services while there, which will be daily anyway.
And now....the waiting begins. A watched follicular unit never grows (so it seems)....
Okay, so dramatics aside, time for a little selfish vanity. Allow me a mini-rant. Basically, I want my hair back. Pure and simple. Chemo's over, I understand that hair must be sacrificed in order for the more important work of these dreadful chemicals to be done, I get it. They did their job! I am still so mad that hair matters, it really does, and that I still don't have any. I want my look to reflect how I feel. I am so over the exterior 'cancer' persona. I lost my hair nearly five months ago. First of all, my head is freezing. I have never experienced this sensation before! And I still hate to wear a hat. The synthetic wig is nice, most are fooled that it's not my hair, but it's not fun to wear anymore and its novelty has officially worn off. Real hair wigs just creep me out and they must be styled just like your own hair. I want MY hair. I don't care if it's wiry and gray. Or stringy. Or patchy. I just want hair. I dream of hair, at least once per week. I dream I have my own hair. I once dreamed I had Gianna's hair. Then I dreamed I looked like the Grumpy Old Troll (for those of you out of the preschool loop, a character on Dora the Explorer). Then once, I dreamed I had Kobe's chocolate with salt fur on top of my head. And the weird thing is, I remember being okay with all of these - I had grown something from the top of my head and in my dream, I am at peace. I wake up in the morning sometimes almost surprised I still don't have hair. I over-analyze hair on people on TV. Like, "your hair makes you look like...
- ...George Clinton!"
- ...like you're trying to be 25...and you still look at least 60!"
- ...that's not hair! It's a rug...a smelly stained rug that needs to be put out of its misery!"
- ...a turnip!"
October 12. The countdown is on!
So in spite of my hair obsession, I went to the local American Cancer Society chapter office and took advantage of a head cover giveaway. And what do I get? A really short wig. I figure, I need to prepare for short hair, so I grab a short pixie cut wig, inexplicably named the "Annie". Between the long one, Annie and the hair halo, I will not need Halloween costumes for many years to come.
After deciding that Annie should be employed as my new temporary lid, we walked down the hall of the ACS and perused the donated assortment of various headwraps and hats. A woman then came in with her husband. She had just started chemo and her hair had just started falling out. She had to stop treatment because she could not handle the side effects. It was her first visit to the ACS and was clearly still trying to come to grips with her diagnosis. With assistance from an ACS volunteer, she selected a sleep cap and said to her husband, "so I can wear this in bed so you don't have to wake up and be freaked out by my white shiny head." He replied to her, "I really don't care what's on your head. Just be there...next to me."
And with that, I'm reminded how far I've come. I can wait a bit longer. I might act like a Grumpy Old Troll from time to time. It's just hair. I'll be thrilled by what I see in the mirror...in a very short time.
Next was a follow up with my plastic surgeon, who has the task of putting my body back together following the surgical tumor ambush on October 25th. He advised me that he will be able to retain far more skin than I thought. CT scan results show good blood supply. Hoping that the high anticipation of the event itself will render it anti-climatic. Let's get this done already. I really am quite impatient at times.
October 15
That day at the shore finally happened. So I wasn't in the swimsuit like I envisioned. And no, it wasn't for a week in that shore house I imagined, just a half day. Bundled in a few layers of fleece for protection from the brisk wind. I sat with Sean on the empty shore and watched the waves and stared back at the seagulls, who to Gianna's delight approached very closely, wrongly assuming we had food. I sat with Sean and watched the girls draw shapes in the sand with sticks they found, build a 'castle' with piles of damp sand, and decorate their creations with shells. They were so happy chasing each other around in a game of relay-style Tag they'd invented. I thought about that vision of myself I'd had of walking on the beach with all my hair back in the swimsuit with the goods on top looking as they should. No, not quite, but everything that mattered to me was right here at the beach. My husband. My girls, euphorically and blissfully happy by simply being able to run about safely in their bare feet and enjoying their surroundings. The peace of the scene's honesty and the emptiness of the shore. It felt like one of those capstone moments that will stick with me. Frozen in time. I need to make some more of these little moments happen. A delicious short escape from the everyday.
October 18 - ACS Walk
Just another reminder that I have been indoctrinated into a cult of strength, support and hope. Like a forced pledging into a huge sorority. A least a few thousand survivors. supporters, aunts, uncles, dads, children, friends, pets. I, with my friend Rebecca who survived leukemia as a teenager, marched up to the Survivor's table to collect our gear to proudly wear. Bright pink tee shirt and baseball brimmed cap that covered my head but still made my baldness underneath appear obvious and that's okay. Random, unsolicited sentiments of "god bless", "best of luck", and "congratulations". A team of junior-high cheerleaders chanted my name at the midway point to the delight of my girls who shouted along with them. The celebration atmosphere was uplifting. A perfect way to end the weekend. Just nine days away until I can consider myself closer to being cancer free.
Friday, September 9, 2011
The Outer and Inner Blingification of Me
August 31
First time meeting with the plastic surgeon who will do my reconstruction. The appointment almost didn't happen thanks to the local flooding from Hurricane Irene and all the power outages in Morristown. The office manager called in the morning to say there was no power in the office building, but we could still be seen. As we approached the office building the power went back on after a three hour outage. A sign from above?
This highly respected surgeon is the second coming of Doogie Houser. I secretly pictured him fitting nicely in one of the girls' car seats. He probably gets carded at the liquor store and at the movies. Would he need a step ladder to reach me on the operating table? But Ivy League educated and highly regarded. With a bright white smile and calm demeanor, he took nearly two hours with us to explain the various reconstructive options. Explained how surgical breast reconstruction came to be. How mastectomies were performed 25 years ago compared to today. And why one option would not be optimal because of my post-op plans for radiation, and why yet another option is not suitable because I do not have sufficient tissue to transfer (and yeah, that is the first time a doctor ever told me I do NOT have "sufficient tissue in this area" or any area, for that matter, to make any sort of transfer - ha ha).
Then for my first nudie photos while standing in front of a strange blue screen. No, these will not be posted anywhere so relax people! And even if they were, none of them show my head to maintain my privacy. No coaching from the side, drunken poses, blowing fans or stilettos needed for my first shoot. And you also won't get to see my rolled eyeballs, stuck-out tongue or money shots with my come-hither pout. Confident that the after shots will be as good - maybe better with some scarring - as the before shots.
A few pre-op tests will be needed before the surgery, to be scheduled after my last chemo hump subsides. Major surgery - two separate surgeries on the same day really - to last about 7-8 hours. About 5 days' hospitalization. Nursing care after I'm home. I know it will be a tough haul. But strangely, I'm looking forward to this new challenge that has already rendered a new and better me. And in a bit more than a month, a cancer-free me too.
September 8
Last chemo day. Amazing. I've been thinking about this day for months! I would have thought I'd be I-Just-Won-the-Megaball-Lottery happy. I am, but it's more complicated than that. I am realizing this experience is not really ending today. There is peace in this truth and it's a little scary too. The gravity of my experience thus far is starting to weigh heavily. I am such a different person after this chapter. I don't recognize the old me or the new one. That is not necessarily bad. Forever I will now note times in my life by "before cancer" and "after cancer". What I have put my body and my mind through! Staggeringly frightening and miraculous all at once.
Still, not including a little extra napping the last two weeks, the level of my real physical discomfort each round can be measured in minutes for the first four rounds, and up to a few hours after round 5 and really nothing else. For this I am truly blessed and fortunate. Doctor tells me my treatment protocol is "probably top 5 toughest" cancer treatments anyone can get. I am inspired and exhausted all at once. Strength is tiring! However I have spent far more energy perhaps tuning out my physical symptoms and dismissing them completely in order to more existentially consider this experience and how it has left me. I guess I have officially entered a phase of self re-discovery. What will I find? What do I want to find? What have I lost? I simply don't have the words to explain this. Maybe someday. Back to the day-to-day, for now.
The nurses and all the staff at the Simon Center are special people who made my last day of chemo a wonderful experience. We got a couple of fun ideas to celebrate this milestone. (Best one: Amex Gold...the possibilities are literally limitless!) Sean and I played cards, again, and after four rough hands the husband pulled out the victory. But he was heavily handicapped! Come on, after five hours, two failed port flushes and six drugs through a shoddy port that still wouldn't give a proper blood sample? And why do I always beat him at home when I can have a few fun cocktails I can actually sip?
I've been so good these last few months, I can think of nothing but really bad food. Especially in light of my embarrassing public loss at canasta. Deep dish Sicilian style pizza. Dinosaur BBQ. Milk chocolate. Really heavy saucy spicy Indian food with lots of naan. Taylor ham, egg and cheese on an sesame bagel. Macaroni and cheese. Almond pastry. Sense a trend? Carbs and sugar.
When the needle came out for the last time, I was ambushed by the Operation Bling Foundation (www.operationblingfoundation.org) and asked to choose a piece of jewelry to celebrate the completion of my chemo. A pair of delicate sterling silver amethyst gemstone antique-inspired earrings became mine to wear home. After a few hugs and waves out the door, I managed to hold it together until I got on the elevator, and read the message included with my earrings:
What Cancer Cannot Do...
It cannot invade the soul
It cannot suppress memories
It cannot kill true friendships
It cannot destroy peace
It cannot conquer the spirit
It cannot shatter hope
It cannot silence courage
It cannot cripple love
It cannot corrode faith
-author unknown
One rather impressive pair of earrings. Couldn't agree more. Now onto the next chapter! Or at least, a bowl or two of really amazing paneer saagwala.
First time meeting with the plastic surgeon who will do my reconstruction. The appointment almost didn't happen thanks to the local flooding from Hurricane Irene and all the power outages in Morristown. The office manager called in the morning to say there was no power in the office building, but we could still be seen. As we approached the office building the power went back on after a three hour outage. A sign from above?
This highly respected surgeon is the second coming of Doogie Houser. I secretly pictured him fitting nicely in one of the girls' car seats. He probably gets carded at the liquor store and at the movies. Would he need a step ladder to reach me on the operating table? But Ivy League educated and highly regarded. With a bright white smile and calm demeanor, he took nearly two hours with us to explain the various reconstructive options. Explained how surgical breast reconstruction came to be. How mastectomies were performed 25 years ago compared to today. And why one option would not be optimal because of my post-op plans for radiation, and why yet another option is not suitable because I do not have sufficient tissue to transfer (and yeah, that is the first time a doctor ever told me I do NOT have "sufficient tissue in this area" or any area, for that matter, to make any sort of transfer - ha ha).
Then for my first nudie photos while standing in front of a strange blue screen. No, these will not be posted anywhere so relax people! And even if they were, none of them show my head to maintain my privacy. No coaching from the side, drunken poses, blowing fans or stilettos needed for my first shoot. And you also won't get to see my rolled eyeballs, stuck-out tongue or money shots with my come-hither pout. Confident that the after shots will be as good - maybe better with some scarring - as the before shots.
A few pre-op tests will be needed before the surgery, to be scheduled after my last chemo hump subsides. Major surgery - two separate surgeries on the same day really - to last about 7-8 hours. About 5 days' hospitalization. Nursing care after I'm home. I know it will be a tough haul. But strangely, I'm looking forward to this new challenge that has already rendered a new and better me. And in a bit more than a month, a cancer-free me too.
September 8
Last chemo day. Amazing. I've been thinking about this day for months! I would have thought I'd be I-Just-Won-the-Megaball-Lottery happy. I am, but it's more complicated than that. I am realizing this experience is not really ending today. There is peace in this truth and it's a little scary too. The gravity of my experience thus far is starting to weigh heavily. I am such a different person after this chapter. I don't recognize the old me or the new one. That is not necessarily bad. Forever I will now note times in my life by "before cancer" and "after cancer". What I have put my body and my mind through! Staggeringly frightening and miraculous all at once.
Still, not including a little extra napping the last two weeks, the level of my real physical discomfort each round can be measured in minutes for the first four rounds, and up to a few hours after round 5 and really nothing else. For this I am truly blessed and fortunate. Doctor tells me my treatment protocol is "probably top 5 toughest" cancer treatments anyone can get. I am inspired and exhausted all at once. Strength is tiring! However I have spent far more energy perhaps tuning out my physical symptoms and dismissing them completely in order to more existentially consider this experience and how it has left me. I guess I have officially entered a phase of self re-discovery. What will I find? What do I want to find? What have I lost? I simply don't have the words to explain this. Maybe someday. Back to the day-to-day, for now.
The nurses and all the staff at the Simon Center are special people who made my last day of chemo a wonderful experience. We got a couple of fun ideas to celebrate this milestone. (Best one: Amex Gold...the possibilities are literally limitless!) Sean and I played cards, again, and after four rough hands the husband pulled out the victory. But he was heavily handicapped! Come on, after five hours, two failed port flushes and six drugs through a shoddy port that still wouldn't give a proper blood sample? And why do I always beat him at home when I can have a few fun cocktails I can actually sip?
I've been so good these last few months, I can think of nothing but really bad food. Especially in light of my embarrassing public loss at canasta. Deep dish Sicilian style pizza. Dinosaur BBQ. Milk chocolate. Really heavy saucy spicy Indian food with lots of naan. Taylor ham, egg and cheese on an sesame bagel. Macaroni and cheese. Almond pastry. Sense a trend? Carbs and sugar.
When the needle came out for the last time, I was ambushed by the Operation Bling Foundation (www.operationblingfoundation.org) and asked to choose a piece of jewelry to celebrate the completion of my chemo. A pair of delicate sterling silver amethyst gemstone antique-inspired earrings became mine to wear home. After a few hugs and waves out the door, I managed to hold it together until I got on the elevator, and read the message included with my earrings:
What Cancer Cannot Do...
It cannot invade the soul
It cannot suppress memories
It cannot kill true friendships
It cannot destroy peace
It cannot conquer the spirit
It cannot shatter hope
It cannot silence courage
It cannot cripple love
It cannot corrode faith
-author unknown
One rather impressive pair of earrings. Couldn't agree more. Now onto the next chapter! Or at least, a bowl or two of really amazing paneer saagwala.
Sunday, August 21, 2011
This just in: I'm gonna be cool again!
August 3 - Chemogirl walks out on 'God'
I've been able to determine one thing about myself. I hate to wait. Actually, under most circumstances, I will not wait. For anything or anyone I feel I shouldn't have to wait for. Expected or necessary waiting is fine. I had a post-op appointment with the surgeon who put in my first - and second - port. This doctor came highly regarded for what he does in the community and presumably in surgery. He is, as I learned after the fact, equally notorious for ignoring the clock and thereby disregarding anyone with any kind of additional obligations outside his realm. He is never, ever on time. Had me and the nurses and the anesthesiologist waiting a full hour at the OR for my first surgery, the second surgery, gee only 45 minutes late. Very unapologetically. Sean calls it a 'God' Complex. I can only tell myself this so many times before I realize that I have been sitting in 'God''s waiting room for 3 - YES THREE - hours. Gee, I thought, I only waited two plus hours for the last two appointments with this doctor. My last appointment with him lasted long enough for 'God' to say, "hello - I like your wig. Your scar looks fine. Make sure to apply Neosporin three times a day. Good bye." It was now 5:15 pm and my appointment was at 2:15 pm. After taking a bathroom break, I return to realize the nurse took a woman whose appointment was 3:00 pm before taking me. Being that smoke spewing from my ears does not accessorize well with my lavender embroidered headwrap, I did something I have never done before. An angry, young bald woman - who spoke openly with the others in the waiting area about her Stage 3 cancer and openly about the three young children waiting on her - is not a sight too many wish to behold. I approached the sliding glass door where this unlucky nurse waited on the other side.
"My appointment was at 2:15, you took that other woman whose appointment was at 3. And how do I know this? Because she and I became the best of friends in the 2 1/2 hours we've been waiting around and she told me her appointment was at 3 - and you took her first." The nurse looked as though she was fighting back tears. "Now I have an hour's commute in rush hour to pick up my three year-old twins. I don't have this kind of time." And I walked out. "We'll reschedule you..." she calls out to me as I turn to leave. "Please, don't bother waiting around too long for me to call you back," stirring up some muffled chuckles from the other four fools who opted to wait. One of them followed me out the door. Well, I thought...I just walked out on 'God'. I can't go back now. I am fortunate to live in a relatively affluent area with a plethora of highly skilled doctors of many specialties within a short drive's distance who respect the time and obligations of their patients. I deserve better. At least I can't complain I went gray waiting. Time for a new doctor who can help me. There are simply some matters that are not worth my anger. Anger is energy that could be put to better use. Anger is probably also veiled and misdirected sadness. I am also gently reminded from above that it's time to reconnect with the Real One sometime very very soon...
August 18 - Tummy Tucks and Tattoos?
First consult with a new surgeon. Again, highly regarded as the first, but verified as such by three independent people, one of whom was a former patient in his large group. Walked into an empty waiting room. I am already in a splendid mood. I am strangely disappointed that I was not even given the opportunity to peruse the stack of magazines to busy myself with when I am called. They were good magazines too! OK!, Life and Style and People.
In less than 20 minutes since my arrival to the office, the new doctor confirmed what I suspected all along. Yes, I must have a mastectomy. Yes, the entire left breast. No, there are no options. No, nothing can be spared aside for a skin-pocket where reconstruction can fill the inside space. This is aggressive and necessary treatment. This is the only treatment. This, along with vigilant future diagnostics, will save your life.
I am finally forced, for the first time in several weeks, to remove myself from my practical reality day-to-day living philosophy and take a step back to review the larger picture. I am reminded, albeit graciously and quite respectfully by this thoughtful and stoic physician, how serious my health became and still is. I have made terrific progress during chemotherapy; with two remaining treatments my mass is probably down to half its original size. We must remove some lymph nodes. There are really no questions to be asked here. This is a relief in a way because there are no decisions here for me to make.
In the stillness of this small examination room, Sean and I stuck in pensive silence staring at one another, I still struggle to manage the crashing noise inside my head of a dashed hope. For a long moment, it is deafening. I can think of nothing to say. I am amazed I can hold together my emotions on the outside. I dreamed over and over that I could quickly and efficiently evict the squatter inside me but keep the residence intact. I saw myself walking along a stretch of Jersey shoreline in a swimsuit, confidently, and I have my long, curly, strawberry blonde locks back dancing in the ocean breeze, and then realizing this walk probably will not happen until next summer. Wishing for something that should not - and cannot - happen is no longer a practical option. It probably never was. I will be forever altered. But as I'm sitting here, I already am altered. I sense my outlook evolving as the physician goes over the many reconstruction options available to me. I struggle to think up some intelligent sounding questions. Or to at least give him the impression that I'm really listening objectively. I'm scribbling nonsensical words and phrases in a notebook because that looks like the right thing to do. But I'm thinking: I can be rebuilt. I have already been rebuilt in a way. This is one more step on the road to a new me. I have already taken so many. I have seemingly lived so many lives and experiences in just a few short months that for better or worse have felt like years. Just a few more steps. Perhaps a lot more steps. I had myself convinced that my hair loss would be most devastating aspect of this experience. Perhaps once again I was wrong. No, I was absolutely wrong. I know this now. This is a thick heap of sick tissue - most of it healthy too - that must go away forever and never return. It is as simple as that, right? Is this still really no big deal? My very own hair's going to come back. My body WILL be reclaimed as my own. The day until this happens grows ever closer. I will be better than I was before. On the inside, and perhaps, the outside too. Wait, I already am.
I leave this office less than one hour after my arrival with a tentative surgery date - sometime during the week of October 9. I have the name of a respected plastic surgeon who will work with him to reconstruct the new me. I go home and make the call to the plastic surgeon who will see me at the end of the month. I am promised an e-mail booklet outlining all my reconstructive options and urged to read it and write down questions prior to my appointment. As expected, an informative patient consultative booklet was delivered to me a handful of hours later.
So this new body of mine might be even better than the original. The plastic surgeon will first remove my port and clean up what is now a 2 1/2" scar near my collarbone. Reconstruction can include tissue transfer from behind the shoulder, the other breast, tissue from one's rear end, a combination of places including an implant, or in many cases, from excess lower abdominal tissue. Yes, read it folks - I can get a tummy tuck in addition to my reconstruction. Ok, let's remember friends: Three. Year. Old. Twins....Carried them to nearly 37 weeks. I was so large Jefferson Township nearly issued me my own zip code. Think I have enough extra down there to fashion a fabulous new sexy orb? You betcha! And I thought the answer was in pilates and yoga!
I read on with increased interest. Mastectomy and reconstruction can happen in one very long surgical procedure. Recovery is usually 4-6 weeks. A few months following, one can also return on an out- patient basis for a reconstruction and/or tattoo of a nipple. Again using a small piece of tissue from somewhere else. Now I ask you - who would have ever thought one could get not only a tummy tuck AND a tattoo picked up by insurance under the diagnosis of treatment for breast cancer?
August 19th - Chemo Number 5
I am filled with more hope for the future. It's time to start making plans! I can - and want to - see the light at the end of this long winding and sometimes frightening tunnel. In the morning I'm back in the groove on the elliptical. That zone. Everything's working. After some eggs, back to the hospital for more chemo.
As luck would have it, stupid port #2 still refuses to give up a blood sample. But after a one-hour flush, at least the chemo goes in. I let Sean beat me in two hands of canasta. I texted a friend to tell her I want to join her for the United Way Bridge Walk in Brooklyn in early October. The Diet Coke I sip still tastes like it should. Rather than fight my port, Rachel my nurse just grabs a blood sample from my arm and we call it a long day. Talked with the doctor about radiation, which would begin after surgery. I ask about the side effects. "I don't expect it to be a big deal for you," he says to me. "You barely complained about your chemo, and it would only be about four to five weeks. After that, just pills."
The end of the darkness might be here! I can smell my success. I still visualize myself on the beach with an enviable rack and all my kinky hair back. But now I can also see myself cancer free.
I've been able to determine one thing about myself. I hate to wait. Actually, under most circumstances, I will not wait. For anything or anyone I feel I shouldn't have to wait for. Expected or necessary waiting is fine. I had a post-op appointment with the surgeon who put in my first - and second - port. This doctor came highly regarded for what he does in the community and presumably in surgery. He is, as I learned after the fact, equally notorious for ignoring the clock and thereby disregarding anyone with any kind of additional obligations outside his realm. He is never, ever on time. Had me and the nurses and the anesthesiologist waiting a full hour at the OR for my first surgery, the second surgery, gee only 45 minutes late. Very unapologetically. Sean calls it a 'God' Complex. I can only tell myself this so many times before I realize that I have been sitting in 'God''s waiting room for 3 - YES THREE - hours. Gee, I thought, I only waited two plus hours for the last two appointments with this doctor. My last appointment with him lasted long enough for 'God' to say, "hello - I like your wig. Your scar looks fine. Make sure to apply Neosporin three times a day. Good bye." It was now 5:15 pm and my appointment was at 2:15 pm. After taking a bathroom break, I return to realize the nurse took a woman whose appointment was 3:00 pm before taking me. Being that smoke spewing from my ears does not accessorize well with my lavender embroidered headwrap, I did something I have never done before. An angry, young bald woman - who spoke openly with the others in the waiting area about her Stage 3 cancer and openly about the three young children waiting on her - is not a sight too many wish to behold. I approached the sliding glass door where this unlucky nurse waited on the other side.
"My appointment was at 2:15, you took that other woman whose appointment was at 3. And how do I know this? Because she and I became the best of friends in the 2 1/2 hours we've been waiting around and she told me her appointment was at 3 - and you took her first." The nurse looked as though she was fighting back tears. "Now I have an hour's commute in rush hour to pick up my three year-old twins. I don't have this kind of time." And I walked out. "We'll reschedule you..." she calls out to me as I turn to leave. "Please, don't bother waiting around too long for me to call you back," stirring up some muffled chuckles from the other four fools who opted to wait. One of them followed me out the door. Well, I thought...I just walked out on 'God'. I can't go back now. I am fortunate to live in a relatively affluent area with a plethora of highly skilled doctors of many specialties within a short drive's distance who respect the time and obligations of their patients. I deserve better. At least I can't complain I went gray waiting. Time for a new doctor who can help me. There are simply some matters that are not worth my anger. Anger is energy that could be put to better use. Anger is probably also veiled and misdirected sadness. I am also gently reminded from above that it's time to reconnect with the Real One sometime very very soon...
August 18 - Tummy Tucks and Tattoos?
First consult with a new surgeon. Again, highly regarded as the first, but verified as such by three independent people, one of whom was a former patient in his large group. Walked into an empty waiting room. I am already in a splendid mood. I am strangely disappointed that I was not even given the opportunity to peruse the stack of magazines to busy myself with when I am called. They were good magazines too! OK!, Life and Style and People.
In less than 20 minutes since my arrival to the office, the new doctor confirmed what I suspected all along. Yes, I must have a mastectomy. Yes, the entire left breast. No, there are no options. No, nothing can be spared aside for a skin-pocket where reconstruction can fill the inside space. This is aggressive and necessary treatment. This is the only treatment. This, along with vigilant future diagnostics, will save your life.
I am finally forced, for the first time in several weeks, to remove myself from my practical reality day-to-day living philosophy and take a step back to review the larger picture. I am reminded, albeit graciously and quite respectfully by this thoughtful and stoic physician, how serious my health became and still is. I have made terrific progress during chemotherapy; with two remaining treatments my mass is probably down to half its original size. We must remove some lymph nodes. There are really no questions to be asked here. This is a relief in a way because there are no decisions here for me to make.
In the stillness of this small examination room, Sean and I stuck in pensive silence staring at one another, I still struggle to manage the crashing noise inside my head of a dashed hope. For a long moment, it is deafening. I can think of nothing to say. I am amazed I can hold together my emotions on the outside. I dreamed over and over that I could quickly and efficiently evict the squatter inside me but keep the residence intact. I saw myself walking along a stretch of Jersey shoreline in a swimsuit, confidently, and I have my long, curly, strawberry blonde locks back dancing in the ocean breeze, and then realizing this walk probably will not happen until next summer. Wishing for something that should not - and cannot - happen is no longer a practical option. It probably never was. I will be forever altered. But as I'm sitting here, I already am altered. I sense my outlook evolving as the physician goes over the many reconstruction options available to me. I struggle to think up some intelligent sounding questions. Or to at least give him the impression that I'm really listening objectively. I'm scribbling nonsensical words and phrases in a notebook because that looks like the right thing to do. But I'm thinking: I can be rebuilt. I have already been rebuilt in a way. This is one more step on the road to a new me. I have already taken so many. I have seemingly lived so many lives and experiences in just a few short months that for better or worse have felt like years. Just a few more steps. Perhaps a lot more steps. I had myself convinced that my hair loss would be most devastating aspect of this experience. Perhaps once again I was wrong. No, I was absolutely wrong. I know this now. This is a thick heap of sick tissue - most of it healthy too - that must go away forever and never return. It is as simple as that, right? Is this still really no big deal? My very own hair's going to come back. My body WILL be reclaimed as my own. The day until this happens grows ever closer. I will be better than I was before. On the inside, and perhaps, the outside too. Wait, I already am.
I leave this office less than one hour after my arrival with a tentative surgery date - sometime during the week of October 9. I have the name of a respected plastic surgeon who will work with him to reconstruct the new me. I go home and make the call to the plastic surgeon who will see me at the end of the month. I am promised an e-mail booklet outlining all my reconstructive options and urged to read it and write down questions prior to my appointment. As expected, an informative patient consultative booklet was delivered to me a handful of hours later.
So this new body of mine might be even better than the original. The plastic surgeon will first remove my port and clean up what is now a 2 1/2" scar near my collarbone. Reconstruction can include tissue transfer from behind the shoulder, the other breast, tissue from one's rear end, a combination of places including an implant, or in many cases, from excess lower abdominal tissue. Yes, read it folks - I can get a tummy tuck in addition to my reconstruction. Ok, let's remember friends: Three. Year. Old. Twins....Carried them to nearly 37 weeks. I was so large Jefferson Township nearly issued me my own zip code. Think I have enough extra down there to fashion a fabulous new sexy orb? You betcha! And I thought the answer was in pilates and yoga!
I read on with increased interest. Mastectomy and reconstruction can happen in one very long surgical procedure. Recovery is usually 4-6 weeks. A few months following, one can also return on an out- patient basis for a reconstruction and/or tattoo of a nipple. Again using a small piece of tissue from somewhere else. Now I ask you - who would have ever thought one could get not only a tummy tuck AND a tattoo picked up by insurance under the diagnosis of treatment for breast cancer?
August 19th - Chemo Number 5
I am filled with more hope for the future. It's time to start making plans! I can - and want to - see the light at the end of this long winding and sometimes frightening tunnel. In the morning I'm back in the groove on the elliptical. That zone. Everything's working. After some eggs, back to the hospital for more chemo.
As luck would have it, stupid port #2 still refuses to give up a blood sample. But after a one-hour flush, at least the chemo goes in. I let Sean beat me in two hands of canasta. I texted a friend to tell her I want to join her for the United Way Bridge Walk in Brooklyn in early October. The Diet Coke I sip still tastes like it should. Rather than fight my port, Rachel my nurse just grabs a blood sample from my arm and we call it a long day. Talked with the doctor about radiation, which would begin after surgery. I ask about the side effects. "I don't expect it to be a big deal for you," he says to me. "You barely complained about your chemo, and it would only be about four to five weeks. After that, just pills."
The end of the darkness might be here! I can smell my success. I still visualize myself on the beach with an enviable rack and all my kinky hair back. But now I can also see myself cancer free.
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