Alternatives

Even people that know me quite well aren't often aware of what goes on behind my cheerful facade. I think to an extent most people are like that. Apparently I'm quite good at it -- that is until I break down completely. I've reached that point. I think **hopefully** I'm balancing out again, so as to not be so depressed and downhearted. However, as soon as I build back up to presenting my cheerful facade, people quickly seem to forget that life is not all unicorns & rainbows for me. I know I'm guilty of doing the same for other people, but my past 2 years have given me a unique perspective on the subject. I've been told lately that I "make it look to easy" so people forget that under the smiles & giddiness ;-) I struggle with a variety of somewhat unusual ailments/difficulties. I'm just pondering the alternatives I have in my life right now.

I'm having some stress at work as a result of the struggles I'm having with my health. That's really hard on me because I'm responsible for bringing home the insurance premiums and such. Since I've been out so much over the past 2 years, I have very little time left. Nor am I any longer the sympathy inspiring bald pregnant girl. My time to take off (vacation, sick, &/or comp) continues to dwindle as I face more doctors appointments to get me healthy again. This leads to...

Stress affects my health more than it probably should. So the stress at work adds to the downward spiral of my health & vice versa. So the more stressed I become about having no time left (for doctors appointments or, heaven forbid, a vacation) the more I need the time off to recover my health. The more time I take for my health, the less time I have at work and therefore the more important every hour is. The more work time I spend, the more I stress and feel unhealthy. Its just a vicious cycle.

I went to my plastic surgeon again Tuesday with my increased pain. The answers I got were/are not promising. Dr. S's 'solution' is to do another surgery with capsulorophy (shrinking the pocket the implant sits in) and using smaller implants. The theory is that this might help the pain in my upper chest, neck, and shoulders. However, the issues that cause that pain (retracted pectoral muscles, lack of muscular support of the implants, super stretchy skin, and difficulty fitting bras) will most likely not be fixed. The only thing the new surgery will fix is the additional weight since she's recommending I down-size from 700ccs to 350-400ccs. I'm not concerned about the smaller size. The concern I have is that without fixing the musculature issues I'm having, the pain will continue. Even Dr. S admits that there's a good chance the smaller implants will do the same thing these larger ones have (stretch the skin and bottom out). Another surgery that may or may not actually fix my issue may also cause other issues. The more times the skin covering my foobs is disturbed the more likely it is that I'll suffer from loss of circulation -- leading to skin death and/or capsular contracture -- leading to another surgery to correct it.

One of her other fixes for my situation is to send me to a pain management doctor for trigger point injections in the juncture of my breast-bone and ribs. Since I turn 30 next week, I'm not a big fan of already having the necessity of a pain management doctor being among the first things recommended. That implies, to me, that for the rest of my life I'm going to have this pain to deal with. I know people live with pain for much of their lives on a daily basis. However, most people I know don't deal with a pain level of 7-8 on a 1-10 scale on a constant daily basis that is exacerbated by normal activities like stretching, getting something off an upper shelf, or (heaven forbid) picking up a child at this age. I also have the fore-knowledge that typically I don't react to pain medications as expected. Strong pain medicine may block a portion of my pain, but the major effect it has is to make me drowsy. If medication is only going to make me drowsy I cannot function well enough to work... Thereby circling back to paragraphs two and three above.

To defend Dr. S, I did call MD Anderson to see about speaking to another plastic surgeon since mine moved away from MD Anderson. His opinion -- relayed to me through a very nice patient advocate -- was that a) without seeing me they can't say anything, b) plastic surgery is unlikely to reduce my pain, and c) a pain management specialist may be my best option. The very nice patient advocate did give me the names & numbers of two recent Fellows from MD Anderson that have since moved closer to KY. She also advised me to contact my original plastic surgeon -- the other Dr. S -- that did my initial reconstruction. He has moved to John Hopkins, but has maintained his speciality of reconstruction.

Today I went to the chiropractor. I'm not a big fan of chiropractics, but it seems preferable to really big needles going into my chest with mind-numbing medications coursing through my body. Plus, any port in a storm seems viable when the pain gets bad enough. I have been adjusted by this chiropractor before -- 3 years ago before Simon was born -- so I knew he was a pretty straight-forward guy. I really wasn't that hopeful, but I decided to just lay it all out without sugar coating anything. To be honest, some of my issues do strike me as being nerve related & that could tie into chiropractics. So they x-rayed my back & discovered a slight left-right curve to my spine between my shoulder blades. More discussion followed and then I got adjusted. I'm actually slightly more comfortable now (I think) than I was before I went. They want to see me again tomorrow and Monday to make sure things stay the way they're supposed to I guess. I'm still having some numbness & tingling down my arms, but I'm unsure whether that is back related or bra/implant/muscle related.

I'm also checking with a theraputic massage practicioner. I've had a really difficult time finding any documentation of the pectoral retraction problem Dr. S indicates I have that is probably causing my pain. That disheartens me. I'm hoping that the theraputic massage masters have heard of the issue and have come up with some way to alleviate some of the pain without resorting to crazy medications. Overall, the stresses of daily life, work, & health have put me down for the count. I'm trying to get up, but feel like I get kicked while I'm down or trying to get up. Hopefully something will give soon. I appreciate prayers, thoughts, words, etc. So please keep them coming. I know without God's support present through you I could not have made it this far. I'm struggling to live up to the expectations I've given myself and that I feel I owe everyone else.

Reality bites

I really hate to be a Debbie Downer, but right now reality is biting my @$$. I try very hard to present the positive attitude and aspects of what I've been through and continue to fight. Apparently, I do really good job most (if not all the time) -- according to how some people perceive me and my situation. Let me explain the realities I face as of now.

1) Cancer is not fun nor is there a quick fix. There is the initial time where the patient is in limbo -- not knowing what will happen next and fearing the worst, while hoping for the best. Then treatment options are presented. The vast array of treatments and the consideration of their myraid side-effects is mind-blowing. Then treatments begin with their own time-line. Eventually treatments end. However, simply surviving the treatments does not mean the patient is back to their normal self. No, the treatments leave their own marks. There is also the ever-present fear of cancer returning or striking somewhere else. No cancer patient that I know (I know many) can truly know they will never get cancer again. We can never know if, when, or where it will strike us again. Therefore, even though I put on a happy suviving face, the fear lodges itself in my heart. This manifests itself as anxiety/panic attacks for me. Most times I can beat it back and truly believe we are cured. However, often, a twinge of pain here, a memory lapse there, etc and I ask myself -- is it back?

2) Chemotherapy only last a finite amount of time, yes. Some of the effects are only temporary - hair loss being the most obvious. Others have longer-lasting effects, but do eventually heal -- for me my blood counts were slow to recover post chemotherapy, but now are at (theoretically) optimal levels. However, some other side-effects (neuropathy, chemo-brain, and random bone pain) can last a lifetime. To my knowledge there is little, if anything, a patient can do to lessen the risk of these long-lasting side-effects or heal them once they arrive. I suffer from chemobrain - loss of some memory capabilities. I also have neuropathy - loss of sensation and/or super sensation (burning in my case) of my fingers and toes. I also suffer from deep bone pain at random times.

During treatment, I tried to make light of the situation even as I tried to explain the truth behind what really happens. Making light of a situation does not lessen the severity of the situation, nor does it mean a darker side is not present as well. The darker side may manifest in obvious side-effects, but the dark can also linger in more hidden areas of the patient's life. There is no denying the lingering presence of chemotherapy, however, it is not spoken of in polite company. It is not something that displays itself. Some doctors even deny the occurrance of some of the side-effects. Most doctors simply shrug their shoulders and insist that these lingering side-effects are simply a normal part of life. Someone like me, with a young family, many years ahead of her (hopefully), and a career tries to overcome these lingering side-effects. However, some are so detrimental to the psyche and body that they disrupt my sense of 'normal.'

3) Surgeries are transient, yes. However, there are multiple surgeries involved (in most cases). Many of these surgeries involve multiple systems. Any disruptions to these systems can devestate the body's ability to recover, adapt, and heal. Each surgery carries with it known and unforeseen risks. Each surgery can have less than stellar outcomes. Not to mention that no surgery (in my experience) can truly bring the body back to its natural and healthy state.

As a breast cancer patient I lost a 'non-essential' part of my body - my breasts. However, as a woman and mother, I feel that those 'non-essential' body parts are actually a physical sign of what I am -- a woman and mother. Therefore, I cannot simply shrug my shoulders and continue without them. That puts me in a dreadful predicament -- reconstruction. A large percentage of reconstructions, no matter what the method, are entirely and wonderfully successful. However, a smaller percentage, while not completely failures, lack the carefree features that nature bestows upon women. Actually, to be honest, even women who count their reconstructions (or lack thereof) to be successful are not always as pleased as they were before cancer struck them.

Again, I tried to make light of these problems. Using the term "foob" instead of implant or reconstructed breast was one way. Focusing on the vanities associated with breasts was another way of making light of the decisions and difficulties I've had. I am not my breasts, foobs or otherwise. I am a whole person that has been made physically less (since I lost quite a bit of breast tissue as well as ovaries and my uterus). However, I try to remain up-beat. I don't want to whine. I don't want sympathy or pity. Heck, sometimes I really don't know what I want except to be normal.

To be honest, a portion of my concern originally was image-related. I did not think I would look like a woman with implants. However, at this point, my complaints are physical. Its not that I have no sensation and the appearance of my implants (and chest) is undesirable; its that I'm in almost constant pain from them. They are heavy and pull at my collarbones, neck, and shoulders. They shift and create tension in some of my muscles. They don't move like natural breasts because they are encapsulated instead of free tissue. The implants themselves aren't the only problem. I also lack the natural 'cushioning' the body has on my breastbone. With two young children, elbows, knees, fingers, arms, heads, etc flail around and strike my breastbone with painful regularity.

4) Having cancer does not mean other aspects of your life gives you a time-out. No, bills continue to be due (and mount to extravagent sums). Children continue to need care and their needs are ever-changing. Jobs require consideration -- especially if that job is responsible for the family's health insurance and financial security. Other family members have their own catastrophies. Other catastrophies can fall upon the patient as well. So even if cancer was simply a short-term ailment, life does not stop to let you recover. In reality, an entire life is affected. That life affects other lives -- families, friends, co-workers, and even strangers. Cancer is like a domino game -- the outcome can be beautiful when viewed from a distance, but devastating to those being knocked down one by one.

5) In a previous post I detailed what survivorship meant to me. I can't remember (chemobrain) if I mentioned that every cancer patient I've 'met' simply wants to be 'normal' again. It's not that we want special status of 'survivors' or to remind everyone of our infirmities. It's that we (or at least I) want to be like I was before. A woman. However, (at least for me) each time I feel the weight of my implants pull me down, each lost memory or word from chemobrain, each time my fingers and toes burn or lack feeling, etc I am reminded of what I am now as opposed to what I was 2 years ago. Honestly, I wasn't entirely happy with my body (vanity-wise) 2 years ago. However, at least then I could stand in front of the mirror and know that everything was God's body design for me. Now if I stand in the mirror, I see scars and cancer consequences. Heck, I can't even look in the mirror at myself au naturale because I have to wear a bra 24 hours a day 7 days a week or else feel pain.

6) I know that everyone changes, sometimes in good ways, but sometimes also in bad ways. Most of these changes are expected and gradual. I have people older than me constantly telling me something like, "Oh just wait, you're going to gain weight, you won't be able to do this or that, you'll lose your memory, your breasts will sag, or whatever." A lot of times, this is said almost gleefully (at least that's my perception), as if the person has already experienced these changes and simply wants me to suffer the same way they are. The same thing happens to pregnant women. Stories come out of the wood-work about horrible morning sickness, late-term miscarriage/stillbirths/fetal deaths, immense pain with delivery, etc.

This 2 year journey for me has been nothing but unexpected and sudden. Unlike the pregnancy (and aging) stories of woe, you seldom find cancer patients talking about how horrible chemo or surgery is with new cancer patients. Most frequently side-effects are glossed over by declaring what a wonder drug XX is or by saying, "You'll look just as gorgeous without your hair." Seldom do cancer patients waiting for chemo share their constant nausea, vomiting, diarrhea, neuropathy, severe bone aches, etc with others in the waiting room. Nor do patients coming in for their 4-month, 6-month, or yearly check-up list the side-effects of their treatments they still suffer. This is a good thing, but it is also bad because in my experience, it fosters a false sense of security. In a way I was tremendously lucky and dealt with my chemo better than mom. However, I was also unlucky in other ways. There is NO way to predict who will suffer from this or that. Nor is the onset of these issues gradual. You begin treatment and immediately you experience some of the side effects, while others (like hair loss) don't become obvious until weeks later.

In essense, just because I am a 'survivor' does not mean my battle is over. I still face sometimes insurmountable issues that are not obvious. Every cancer survivor has their own scars and continuous battles they face. While we want to be just like everyone else, in the back of our minds is always the knowledge that we are not - we will always have to fight something that came from this disease. However, once we are 'cancer-free' the public loses interest in us. We are no longer brave warriors. We are just survivors. I'm sure military veterans, other disease survivors, etc feel the same. I can't speak about them, I can only speak for myself. Treat me as you would have prior to my diagnosis, but know that just because I'm winning doesn't mean the battle is over.

Changes...

I just logged into my secure email for MD Anderson. Upon doing that I was reminded to check my patient demographics. There at the top of the page was my photo ID they took at my first visit on July 16, 2009. My medium brown short hair and dimpled smile fills the photo box. My collarbones were prominent and my eyes are sparkle. Then I look at photos just a few months later. My hair disappeared, but the smile and collarbones remained. My eyes dimmed somewhat during treatment. Then I look in the mirror now -- almost 2 years after that fateful diagnosis. My hair is darker and curly (thank you God for something good out of this experience). My collarbones while still visible are much less prominent. My smile remains, but sometimes does not fully reach my eyes to generate that sparkle I was so known for.

My hair matters less to me than the other pieces of baggage I carry from my chemo, delivery of Rachel, more chemo, and surgeries. However, it is probably one of the biggest 'rewards' I got from my experience. Rachel is the biggest reward even as she is also one of my biggest challenges. ;-) The reason I mourn the loss of my collarbones prominence is not that I've gained weight (I'm basically the same weight I was between delivering Simon and conceiving Rachel), instead it is about what the surgeries to my chest have done to me. The loss of prominence of my collarbones is indicative of the muscle retraction and 'bottoming out' of my implants that causes me much discomfort and pain. This is one factor responsible for the lack of sparkle in my eyes. Another factor responsible for that lack of sparkle is the ever present fear of my body betraying me again. I have taken all reasonable (and a somewhat unreasonable) precautions to prevent this futher betrayal, but every visit to the oncologist reminds me that life is indeed fragile and my 'cure' is indeed not a sure thing.

I wish I could say that my Faith drastically eases the burden of my fear both of the physical suffering that another diagnosis could bring as well as the emotional fear of death. However, I must be honest, my Faith is not that great. Well, perhaps I should explain further. It's not that I don't believe God has a plan and purpose for all that we are -- trials as well as comforts. It's that I don't understand God's plan and I am afraid He thinks more of me than I do of myself. I am a firm believer of redemptive suffering. Not as a means of 'deserving' Heaven or salvation, but as a means of using suffering to give witness God's blessings. For without witnessing sufferings, can we really appreciate all that we have? If we did not know loss of loved ones, would we truly cherish every moment we have with our remaining loved ones? If we do not witness the suffering of others, would we truly be capable of putting our own sufferings aside? If we did not have Christ's example on the Cross, could we truly forgive those who offend us? However, even realizing the truth to these statements, the very human and weak part of me says that I simply want to witness suffering, not live through it. However, Christ calls us to take up our cross and follow Him. He admonishes us to forgive our brethren seven times seventy times. He warns us that we shall suffer on earth in order to gain eternal life. However, He also acknowledges that it is easier for a camel to pass through the eye of a needle than for the righteous to enter Heaven.

A part of me wants to bow my head and admit defeat sometimes. It sometimes seems as if I simply cannot continue to keep my spirits up, support my family, remain steadfast in Faith, enjoy the presence of friends and family, and fight the fear and pain that resides within me. However, I remain here waiting for God's call. Apparently, sometimes I ignore His call to take other less important calls (like this pity-party). Sometimes I feel that I'm answering His call, but do not stay focused on His goals for me. Sometimes I feel that I'm answering His call, paying attention, but still give the 'wrong' answers. Infrequently, I feel that I not only answer His call, pay attention, but I also give the right answers. It is the latter of these times that make all the former issues fall away. I can dance and sing with gladness. Sadly, these latter occassions seem rare.

I want to cry for that naive girl in that first photo. I want to be her again instead of who I look at in the mirror each morning. However, I realize that girl too had doubts and wounds she hid from view. I was that girl, so I know. She just had not experienced as much life as I have now. I know that, in my heart -- then & now -- I was frightened, awestruck, loving, loved, and lucky. The only way I would step back into that girl's shoes would be if I knew she would not have to walk the difficult road that she walked to become who I am today. However, that girl would not have become the woman I am today without this journey. Whether that's a good thing or not is up to God to decide. All I know is that I face myself every morning and while it is not always conscious, choose to try to live my life as God would intend it. I try to be a steadfast presence with Faith, honor, charity, and love. I try to speak out for those who cannot -- especially the unborn. I try to educate those who may come into contact with a naive girl like I was. I try to love as I know I am loved. Most of all, I just try to live life to the fullest.

What survivorship means to me...

Late last week (early this week - sometime late May early June) was National Survivors Day. Its theoretically a day sponsored by Eli Lilly (I think) to 'honor' cancer survivors. Since I didn't get any recognition or recompense from a drug company (or anyone save my friends & family), I didn't really pay much attention to it. However, I've lately been browsing other cancer (typically breast cancer survivors) blogs. Many of the blogs I've browsed have been anti-survivor - not that they hate themselves, but that they hate the label of survivor. I understand to a degree. Afterall, I really didn't do anything special or heroic to survive - I took the best course of action presented to me & happened to live through it (by the grace of God). I don't feel like I'm on par with a woman who survived a brutal attempted homicide or someone who technically died for moments only to return to life. Nor did I scale a mountain by brute force alone (with only one arm?) or win some athletic award. No, I was blessed by God to be one of 2 survivors in at least 5 generations of breast/ovarian cancer victims. Having a wonderful medical team didn't hurt either (another of God's blessings).

I think what these other bloggers are trying to convey is that they did nothing special to survive that those that die from this horrible disease did *not* do. People die from cancer all the time. It is only God's will that keeps us alive, but it is also His will that makes something beautiful and inspirational out of our journeys. My grandmother (nana) was not less of a survivor because after 5 years of fighting she succumbed to the disease. No, she was a wonderful model of fighting until the bitter end, but never becoming bitter. She was an example (to me & others) to fight, but know when God's calling you home. Her suffering was traumatic for me (and I'm sure her & the rest of my family), however, it was also cleansing and poignant. I don't mean to get saccreligious, but like Jesus, she finally commended her spirit to God when her entire family (including our family-friend-priest) surrounded her bed after speaking individually to her. I am not better than my nana because I survived. However, what I am is a *living* witness to the wonders of God's creation. Not only did I fight this horrible disease, I also bore a beautiful and healthy child during my battle. Not only did I win the physical battle, I also (for the most part) won the emotional and spiritual battle that *is* cancer. I am *still* fighting that emotional & spiritual battle.

I try not to play the 'cancer-card' very often, but in a way I feel that I do deserve something for fighting as I did and striving to be the best example to others that I can be. We all carry our own crosses. We all have sufferings in our lives. Sometimes it is hard to see other's sufferings, but trust me they are there. Even those who look completely 'put-together' fight their own inner battles. Again, I'm not any better than any one else with inner battles - at heart we are all 'survivors' of the traumas that are our lives. However, my battle with a physical disease is more obvious and apparently more inspirational than the 'normal' battles we each do every day.

I also acknowledge that while I'm a survivor, I am also *still* a fighter. I am still burdened by the uncertainty of relapse. I am still burdened with the side-effects of treatment both from chemotherapy as well as the various surgeries I had. I am still reminded (emotionally & spiritually) every day that I have lost a part of my self even while I gained a different perspective. Merely being alive does not make me a survivor, in my opinion. What makes me a survivor (and what survivorship means to me) is that I can acknowledge not only my own struggles, but also those of others. That I not only acknowledge these struggles, but fight to rise above them. That I not only fight to rise above them, but that I use all my might to present them to God (and others) as hidden gifts. The sufferings we all go through *do* make us stronger if we let them. That I've been through so much in such a short-time-span gives me a little bit of a heads-up over those with 'easy' lives sometimes. I can see the beauty in the moment more like someone of an older generation, but still boast (sometimes) the energy of the younger generation.

Don't get me wrong. There are countless times (a day sometimes) that I curse the scourge of breast cancer (or any other disease, disaster, crime, etc). As I struggle with my failing memory caused by chemotherapy I curse the cancer that caused me to turn to chemotherapy. While I struggle with decreased sensation in my fingers & toes caused by chemo, I again curse the cancer that caused chemo to be my 'best' choice. As my shoulders, back, neck, & chest ache from the unnatural presence of implants on my chest, I curse the cancer that caused me to choose self-mutilation over death. Waves of heat pass through me during my hot-flashes accompanied by panic attacks and again I curse the cancer-fear that caused me to self-mutilate myself by removing my ovaries. However, my very ability to curse the cancer and fear it generates is also cause for rejoicing. Without making these hard choices I would most likely be dead. I would be beyond suffering, but also beyond the joys of this earth. I wouldn't be able to cradle Rachel's head as she sleeps. Simon's funny sayings wouldn't echo in my mind. Andrew's loving touches wouldn't kindle my love for him. I wouldn't be able to participate in family functions with all their noise and joy amid confusion and chaos. Spiritually I know that I'd (with God's grace) be in God's presence & not miss these earthly pleasures. However, physically I fight for the ability to enjoy these earthly pleasures even while suffering from earthly torments.

All in all, survivorship to me is not simply being alive - suvivorship is being alive while learning and letting others learn from your struggles. That is the difficulty and the pride of survivorship. Not simply surviving a disease, disaster, or crime, but learning and allowing others to learn from your struggles is the point. That is what makes survivors laudable. Even those who only survive for a 'short' period (we're all going to die eventually) can give us lessons through their struggles. I pray that you (and I) can accept our crosses with joyful hearts and look beyond the suffering to see God's blessings.

Pink does NOT represent me

Thankfully some light has recently been shed on the pink revolution. All pink ribbon products aren't bad or anything. However, IMO there is a significant overplaying of the whole issue. Yes, breast cancer is very common. Yes, breast cancer victims are deserving of respect and acknowledgement. However, we breast cancer survivors are not any better than any other cancer survivors. Just because breasts are right there 'in your face' does not make them more important than ovarian cancer, heart disease, skin cancer, or any other disease. I'm not 100% positive, but I think heart disease actually kills more US women than breast cancer does (I'm sure now). However, the human heart is not as sexy as breasts - therefore it doesn't get the same press.

At this point, I think *everyone* is aware of breast cancer. However, I think fewer people are aware of the massive amounts of money being made by so many of the 'breast cancer awareness' groups. I'm not talking about money that goes into research, I'm talking about actual money the organization makes and puts back into 'awareness'. Not to mention that some of this 'awareness' money is actually funding things that can *cause* or *increase the risk of* breast cancer. I think these organizations need a wake-up call from their donors. We are AWARE now, could you please actually start doing something to prevent, cure, or at least understand this disease? There are some groups that are promoting this mind-set. One is a blog called Think Before You Pink. Check out their tool-kit. There's another organization called KomenWatch. Another resource is UneasyPink. These groups are doing the homework most of us don't have the time or desire to do... If you are adamant about supporting the breast cancer movement - please look at what these other organizations have to say. I maintain that supporting individuals in your community, cancer centers in your community (places where cancer treatment actually happens), or doing your research is the best way to make sure your donations actually go to fighting the disease.

Thank you for all you've done for me - whether financially, physically, or spiritually. Regardless of the organization you supported in my name, I appreciate the thoughts, prayers, and actions of each & every one of you!