The Financial Fallout Begins…

Kids Korner

Wow! I am really amazed at how much time has flown by. I imposed a blogging hiatus after my last surgery. I had to…didn’t want to…just had to. Just a few days after my last surgery back in January, my winter classes started back up. Last year, I was in freak out land. I was unable to finish my classes and so I just let them go. I thought I could do it, but realized I just couldn’t. So, instead of doing the smart thing and withdrawing from all three classes last year, I withdrew from one and vowed to continue with extensions in the other two classes. It never happened. My head just got too messed up. I couldn’t breathe. I couldn’t see straight. Being the Type A that I am–it is an all or nothing for me. That’s just the way I’m wired. And so, I did the unthinkable–I just dumped my classes…I just let them go…and I took the F’s. Me!! F’s!! Can you freakin’ believe it? I couldn’t either, yet my head wasn’t there and it was too late to withdraw at that point. Gone was my hard earned 4.0 GPA–but ya know what? I didn’t care. I just didn’t care anymore.

So, I re-enrolled in those two classes that I left at the curb. I devoted my energy to once again, pulling my GPA up and proving to myself that I wasn’t just some quitter. I know that is far from the truth. So, for 12 weeks, I worked on my classes. I found out after finishing them up a couple weeks ago that I get a second chance option. Yes, the letter grade F will still show on my transcript, but it will not be factored into my overall GPA since I passed my Children’s Lit with an almost 99% and my Child Psych with an almost 97%. I was ecstatic!! Once, they were finished, I celebrated. I had come back and accomplished what I gave up on last year. I proved to myself and to my instructors that I was ready to get back in the game. I took a couple weeks off to just play with my family and with my friends. I played hard, laughed hard, and as always worked hard. There were a million things I needed to get caught up on, but instead, I relaxed. Those things are still going to be there and I’m still going to be behind, but I vowed in this year’s New Year’s resolutions that I was going to MAKE the time to hang out with friends, and work on my chill skills. Its just more important for me now to just let things go. I can’t do it all at once. I’ll get to it when I get to it these days.

And remember those taxes I was freaking out over trying to get done…they’re still not done. I need to still get ’08 ad ’09 in. Yes, there will be penalties. Yes, there will accountant’s fees, but you know what? I just don’t care. Well, I do, but I don’t. I have been sitting in a sesspool of financial obligations. I knew last year that the true financial fallout would happen this year. It would take that long to catch up–and it has–with a vengeance. All the bills from the doctors and surgery centers and related other physicians, anesthesiologists, radiologists, oncologists, pathologists, and any other -ologist you can think of has hit my desktop. It is mountainous and I can only do what I can do which is try to continue breathing as I wade through this nightmare. To make matters worse, Jeff was wrongfully terminated from his job of 17 years and we are in legal crap up to our ears. Lawyers don’t come cheap. So, we have tapped every reserve we have and watched it run dry over the past three months. He is caught in a non-compete clause. His former employer and life-long best friend is now appealing the court’s decision to grant him unemployment after it was contested in the first place (don’t get me started with this story–whole other blog, trust me).

If that isn’t enough, the first house we ever bought and subsequently poured our hearts and lives into as we renovated it extensively all by ourselves (except for the help of just a handful of people that were good friends or family)–was sold at a sherriff’s sale. Yep. After carrying that mortgage along with our current mortgage for nearly 4 1/2 years, we went into foreclosure–well, it was my name on that house, so I’m the one that will suffer the credit effects. We just couldn’t make it anymore. Hell, in this economy, I don’t know too many that could have carried 2 mortgages and all the expenses to keep 2 houses up for that long. I know several people that have lost the homes they were living in this year. I’m counting my blessings that we still have a roof over our heads–at the moment–with Jeff out of work and me still pulling down three jobs and contemplating a 4th part-time job–I’m afraid that the straw that will break my back will be a recurrence of my cancer due to stress–again. I’m ever mindful of this. I think about it a lot. Yet our situation is out of necessity at the moment. I’m also waiting for the gavel to fall. I’m waiting to find out how much the difference is between the amount left on the mortgage to the amount the house was sold for. I’ll be responsible for the difference. Up until last year, BOTH houses were under my name and you guys thought I was just stressed about cancer or my missing daughter…sigh…

Jordan 1 1/2 yrs. & Jasmine 5 1/2 sit proudly in front of their new home.

As I walked through that house one last time, I cried. The dreams and the hopes you have as you start out your lives in your first home were coming to an end. On one hand, it was out of my hands at this point, and I was relieved. I wouldn’t have to carry that weight anymore. On the other, I was sick that it never sold. Damn housing market…took a dump the week we decided to move. It was really like my life was flashing before my eyes. I saw my children growing up there..watched out the window as my oldest daughter learned to ride a bike down the street without training wheels…flushed boogey men down the toilet so my middle daughter could sleep at night…nursed my little boy when he was born from my muted mauve bedroom…saw the daycare children growing up there…listened to the laughter ringing throughout the house..echoing in my mind…reminding me of years gone by. I’ll never forget sleeping on the floor of the living room every night for 7 months straight in a big makeshift bed that held all of us as we gutted the upstairs bedrooms and refinished the hardwood floors by hand–not with big machines, but with tiny belt sanders…I thought about the gardens that I painstakingly planted full of perrenials hunched over for hours on end with a belly out to there–pregnant and happy…working until the streetlights were the only thing that illuminated the fenceline. I remembered all the Mother’s Day Tea Parties I had thrown and the friends I had made…I remembered Jeff spending one hell of a hot summer poised on ladders as he scraped the house by hand and repainted it a beautiful grey with navy blue and white trim…I remembered the fights…the arguments with Jeff about money, childrearing, or what ultimately led to our decision to leave. I remember, vividly, my dad…poised over the pipes in both the upstairs bathroom and the kitchen as we gutted those rooms and he slaved over a hot torch without central air on 100 degree days to help us replumb this big, old four-square. I will always remember the night we were robbed–our first Christmas there–they took everything–even our winter coats out of the closet to drape around the TV’s they carted out of the house. I remember Santa bringing us Cheyenne–our first dog. If you remember from a previous post, she past away last June 17, 2009. Even more bittersweet, her pawprints were in the drywall dust from where Jeff brought her back to play as he worked on getting it ready for sale.

Santa brought us Cheyenne '97

It was the fireplace that caught my eye the first time I ever saw the house…some would have thought I was crazy…weeds waist high…paint falling off like skin on a badly sunburnt back…in sheets…but I could see the beauty. The day I walked up those rickety stairs and stood on that raw porch and peeked in the windows, I immediately envisioned the Christmas tree in the alcove near a blazing fire with my kids racing down the wide staircase to open their presents. That fireplace sold me.

Christmas '99

I knew it would be years of work, but I was up for that challenge. I lived without a kitchen in that old house for 5 years. Nothing at all inthere except the beams, exposed wiring, a broken stove with only one working burner and the stove that backfired like the muffler on an old Ford escort wagon we used to own. A laundry utitility sink that served as my sink and a utility table for my countertop. For five years, I patiently waited as my husband built my dream kitchen with oversized custom maple cabinets, custom tilework and stainless steel appliances and enbossed tin blackplash. I only got to enjoy that kitchen for a few months before we moved. Five years! I know no other woman that would have put up with that for 1 year let alone 5!! With tears streaming down my face like a leaky faucet, I came to rest on the most important place of all in that old home–my custom made growth chart. The edge of the fridge wall alcove where I measured a dozen children mine and “mine” that grew up with us in that home. I placed my hand on that wall and could actually see the smiling faces of these children…feel their excitement once more as they scooted their heels back to the wall and waited with giddy anticipation to see how much they had grown. I would miss that spot in my house the most. (see sidebar for flikr photos of growth chart)

I placed some tracing paper up along the wall and taped several sheets end to end and sat and traced out every name, every date, every growth mark. Then, I took pictures of it. Although they don’t do the spot justice or to someone viewing them, they could never know all the laughter and twinkling eyes that stood at that very spot over the years, but for me I knew it would be just a matter of time before someone would paint over that spot. The sentimental significance would not be the same for them. Jeff and I loved to find the story of that old house. We loved to talk about finding a gun in the rafters of the basement or pictures of people that had been left behind. We joked that as we tore each room out and rebuilt it, one day we would find a bag of money or gold. Perhaps we did, but not in the physical sense of it. Perhaps our gold lied in our perseverance to turn that old dump into our goldmine–a home for our family. But as I stood there, last week, May 31, 2010…I knew even Jeff had given up. It no longer belonged to us.

As I turned to look through the house one last time, I whispered an apology to my home, “I’m sorry for neglecting you. I’m sorry for ever taking you for granted.”, “I’m sorry we chose to pay for medicines and treatment for me instead of medicines and treatments for you” and then I followed with a note of thanks, “Thank you…for the memories…for keeping us warm and dry, comforted, and loved”. With that I choked back the sobs and with tears streaming, I pulled out of the drive one last time. I told myself as I drove away watching the reflection of that house fade out of sight in my rear view mirror that it was another chapter closing. It was like leaving her as I found her, weeds waist high, paint peeling once again, gardens neglected, and on the inside, traces of renter’s that had not appreciated her beauty, plaster falling from the ceiling in the master bedroom where a leak in the roof had developed, a basement that had taken on water when the pipes burst over the cold winter months, a delapidated and tired looking porch, and broken bathroom fixtures. All that work. All those years. All that money…gone…but, I was alive. I was thankful for that. That was all that mattered.

I always wanted to bring the previous owner back…a little elderly woman whose husband had passed away and whom we fondly referred to as George, the ghost (we attributed all the weird stuff we heard or saw over the years to him). I knew I would have made the woman proud. I had brought back to life the home she raised her children in. I knew the importance of preserving the story and was looking forward to the day when I could tell her ours. That never happened, but one freak day, I did meet the owner who poured the patio in back. She was up visiting from the South and wanted to see her old place. This woman was two owners back and she showed me the place her and her husband wrote their initials in the cement. That cleared up that question I had had for years. Now, whoever moves in will find our handprints cast in cement in several places around the house–the furnace pad that was poured when we took out the big octopus, the central air pad when after sweltering through 4 hot summers with no air–we finally moved into the 20th century, and in the front under the apron skirt of the house. There will be reminders of us all over the place. Since we pretty much gutted each room, Jeff was good about leaving little time capsules around the house buried within the walls. I hope someday to go back–show the new owner who the handprints belonged to. Maybe, just maybe they’ll be happy to see me too. I really hoped the next owners would love it as we had and bring her back to life once more. She had great bones. She was and always will be my first love. If I could have picked that house up and moved it to where we are now–I would have.

Saying goodbye...

I’ve been enjoying these past few months despite the emotional ups and downs. I have worked hard at my number one goal for this year which was repairing, reaffirming, and reconnecting myself with friends and family old and new. I have been working on another blog site–not ready yet, but I’ll keep you all posted as I get close to launching. I have signed up for summer classes and have started the whole freak out thing all over only this time, I am cramming 16 weeks into 8. Gulp. One is a writing course and as much as I love it, I find myself needing to break down and buy a go-anywhere internet card to keep up with my classes and still be able to take the kids to the pool on the weekends. I could write by the side of the pool. I have SO many things I am looking forward to sharing. I also have many posts that I never got around to posting and I want to just get that story out of me so I can move on. You’ll have to check dates carefully to get a perspective on the time frame and I want to thank you all for continuing to stop by from time to time, or friend me on Facebook (a place I spend more time than I care to admit late at night–but that is part of the resolution), and sending me private messages of encouragement and hope. I’m looking forward to getting back to my blog. I’ve missed it terribly. I’ve posted some new videos, am working on uploading pics, totally need to re-do my own pictures since my look has changed dramatically over the past few months, and just want to catch everyone up to speed. For quite a while, I wondered–crap, where do I begin? Here’s as good a place as any, I suppose.

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I’m Seeing Another Man…

I’m seeing another man. In fact, I saw him twice last week. I also got to spend time with his partner and we discussed a possible threesome for later in the week…:)

Did that peak your curiosity? Perhaps I should clarify before the rumor mill gets to churning out the latest gossip and sends everyone in the family into a tizzy…

Due to ongoing pain around the tooth I had rooted out back in May, I found myself back in the hot seat at my new dentist’s office three times last week. Last Monday, I had the pleasure of meeting one more of the three dentists that practice at the Myotech Dental Center. This was not the same doctor that helped fix the 4 cavities and the root canal issue that had surfaced prior to starting my chemotherapy. Since Dr. Leppo was not in, Dr. Prudent and I made plans for me to return when both Dr. Leppo and Dr. Prudent could take a look at what was going on. I was again impressed with the unbelievable bedside manner of yet another partner in that business and it completely justified my decision to divorce the dentist I had been seeing for almost 4 years.

There have only been four dentists up until now in my life. My childhood dentist was imposed upon me by my parents. I hated him. There was something about him that really made my skin crawl. My girls call those kind of people–“creepers”. When I think about it–he was. I’m sure he was a nice enough fellow, but I didn’t like him and he inflicted a great deal of pain on me during my childhood and for that–he was out. Actually, he dumped me and opted for retirement. When his son took over the practice, I stayed for a while. The commute back and forth from where I lived in the cities as a young woman to the office in my hometown was just too difficult to make over a lunch hour though and so, I left him–without so much as a goodbye.

For five years, I worked for an eye surgeon in the Quad Cities. His office was right beside a dentist’s office. One day, I decided to start up a new relationship. I stayed with that dentist and followed him when he moved to a bigger office. As I moved further away, the commute began to take a toll once again, but there was a bigger problem. I hated his secretary–just couldn’t stand her–very bitchy and always looking down her nose at me–especially when I’d come in a few minutes late (as though she had never gotten stuck in traffic or dealt with kids in meltdowns). The doctor himself was great–kind, soft spoken, gentle, and would always set my appointments for the last one in the day because he knew that I was a freaker (thanks to dentist #1). He knew that more than anything, going to the dentist for me was a major psychological hurdle. He knew where the exposed roots were on the two molars that had housed headgear bands during the phase in my life when I wore braces and he always stayed clear from them with his sharp tool. I’ll never forget (I’m sure he won’t either) the day I went in to have a silver filling that had gone bad dug out and resealed. I was a mess–couldn’t stop crying, freaking out about the drill–I mean BAD. I was literally crawling up the back of the chair to get away. What should have taken about 20 minutes took and hour and a half because he would stop and start and stop and start to give me some time to brace myself. He never laughed at me. He understood and he was patient with my freak out. I loved him for that. I sent the office flowers the day after.

Unfortunately, I just couldn’t stand to go there and be harrassed by the secretary. I showed up about 10 minutes late one night and she went through the roof and said I needed to pay a broken appointment fee. I had already had a bad day and I told her to shove it. It would be different if I never showed up, but I even called in route to tell her I was on my way. It infuriated me so much, I divorced her–on the spot. That meant, though, that I was divorcing him too and that made me really sad because I had been with him for about 15 years and so had my kids. I decided to find something closer to where we had just moved. I took a coupon out of the Welcome Wagon basket that promised free exams for new patients. Without dental insurance–that was like winning the lottery for me and my family because those new patient exams are soooo outrageously priced. My family has been with this dentist for about four years, but we haven’t liked it. Even so, I just can’t justify spending over a thousand dollars to get everyone in for new patient exams, x-rays and cleanings somewhere else. So, we’ve stayed.

The dentist at the time was someone I personally didn’t care for. He was patronizing and I just couldn’t stand that about him. He actually laughed when I told him I didn’t know if I could take having any major dental work done and that I have been known to take more than 2 or 3 novacaine shots in the past because I could feel the work being done despite the anesthetic. He would look at me incredulously and then laugh. It made my blood boil. I felt as though he really couldn’t care less and to him you were just a meal ticket. The women in the office infuriated me as well and would pad the bill each time I went in for myself or my kids. I’m always VERY SPECIFIC when it comes to dental bills because it is such a HUGE outlay of cash each 6 months that I have to budget very carefully. The last time I went in for me I told them I needed x-rays and an exam–no cleaning, no sealant, no flouride, no extras whatsoever because I was just checking on a specific tooth (the root canal one). I’ve learned with these women to repeat myself and make sure they have made notations on my account so when I actually do come in, there is no mistaking what I want or don’t want done. With all the computerization that is in that office and with the prior knowledge all these women have of me and that I can get very bitchy when someone is trying to screw me out of money–you would think that there were red flags waving signaling my arrival that day. Nope.

When I went back to the examining room the hygenist took the x-ray and then proceeded to clean my teeth. I stopped her, asked her what she was doing, and she looked at me like she had no idea what I was talking about. I got up, walked out to the office and really got into the ladies business that is in charge of scheduling. I remember her telling me, “Well, if she started the cleaning, then we have to charge you for the whole cleaning and so you may as well get it done”. OH MY GOD–ARE YOU KIDDING ME? I went nuts. I even reminded her when I signed in that day. Do you think she could have transferred that information to the hygenist? I cancelled all other appointments for the rest of the year for the kids and myself–went ahead and said ENOUGH IS ENOUGH (actually, that was the nice version of what I said) and I walked out. Before I left, I did demand all the x-rays, afterall, I paid for them over the years–why shouldn’t they give them to me?

Months go by and I hadn’t found a new dental home. I knew that wherever I landed, I wanted it to be the last one. I wanted to feel like the people in the office and the doctors themselves didn’t just see me as a walking $$ sign. I knew I needed to start looking, but I knew I was going to have to have work done to that upper tooth that gave me such problems. It wasn’t until that trip out to see my grandmother in Virginia one year ago that I passed by a billboard sign in Kentucky that promoted a local dentist and said something about sedation dentistry. I thought about it the whole way out and when I got home I started looking over the yellow pages. There aren’t too many places that provide that service here where I live. I would have to either travel or call an office that I always thought was geared more for patients needing dentures and dental implants. I took a shot on the denture office and it turned out they do all sorts of tooth restoration work. They also carried the ZOOM teeth whitening machine and I had been dying to have that done for a few years. I remember when I first called for information and prices (before I was even diagnosed) finding out that it was in my best interest to be a patient–it would be cheaper. Sigh. That meant I was going to have to start shelling out some big bucks to have all that new patient work done before I could even start any work.

It wasn’t long after Christmas last year that I had that fateful mammogram where I was diagnosed with breast cancer. When that happened, everything else took a back seat and months went by before I was again faced with the need to see a dentist. Back in April, I was told by my first oncologist that any dental work that I needed to have done would need to be done prior to starting treatment because the risk of any infection developing while my immune system was being destroyed would not be a good thing. I knew I had one cavity and it was a bad one, so I went ahead and called this denture office to see about coming in. I explained my situation and they got me in–no problem–no waiting. The doctor that came in to talk to me was hands down the nicest dentist I’ve ever met. He and I talked at length about my nerves and then discussed the x-rays and the fact that I had not one but FOUR cavities! One was so bad it needed a root canal (that was the one in question for 6 months). He told me the price of everything and I think I stopped breathing.

Where in the world was I going to come up with about $2800 in a week (I had to have it done before my first chemo on May 7, 2009)? I don’t carry credit cards–I figure if I don’t have the money for something, I shouldn’t be buying it, but now was one of those times I wished I had an emergency card. To tell you the truth–I’d just be paying interest and minimum payments for God knows how long and that’s not how I operate. I hate being “payment-ed” to death. I was really going to have to fanagle this one. That’s when he told me he could spread the payments out and give me 90 days same as cash. Still a freaking lot of money, but I had to have it done AND I know of no other dentist office that will let you do that. It included the extra $500 to put me to sleep–totally worth it in my mind and the date was set. I had to have someone drive me out to the surgical facility and hang around nearby for a few hours because I would be loopy to drive myself home. I wasn’t completely knocked out, and I can only remember bits and pieces of that afternoon.

Taken 5-4-09 right before being put under for my root canal.

I remember the nurse putting the IV in my arm and turning on the medicine that would make me fall asleep.

I remember Dr. Leppo coming in and telling me everything would be ok.

I remember him giving me a warm blanket and turning on the TV.

I remember several times opening up my eyes and seeing him hovering over me with a lot of bright lights and he was wearing micro-surgeon’s binoculars. He would ask me reassuringly each time if I was ok.

I remember my jaw aching.

I remember when it was over, he got up and he walked around holding onto his back because he had been in such an awkward position for over three and a half hours.

I remember telling him that I really appreciated his kind nature.

I remember him smiling at me very warmly and saying, “That’s what I’m here for”. He told me I would need a crown on that tooth, but because of the placement of the cavity on that particular tooth, I would be lucky not to lose the tooth sometime in the near future. He said it was a 50/50 shot and he made the decision to see if the root canal would do the trick. He said it was just too bad and that the cancer was really beginning to do some damage to my teeth. He said the tooth itself was packed full of antibiotics before being sealed. He also told me to come back with any problems and to hang tough through the chemo.

I looked at him dead on and said, “I want you to know, that if I don’t make it out of this this year, that you were one of the nicest doctors I had ever met and I was very glad to have him as part of my medical team.” He thanked me and told me it was quite alright.

It was just a couple days later when I had that encounter with the woman in the wig shop (Just Own It) and that is when I made the decision to get my tattoo. I knew that would also need to be done prior to chemo and my white cells getting killed off and I knew that all the antibiotics from the root canal would help kill off any kind of infection a tattoo might inflict. Right before going in for my first round of chemo, I went back to Dr. Leppo. I hadn’t been able to eat anything in a few days. My mouth was so sore from being clamped open for so long. I knew the other teeth he had fixed would take some getting used to chewing on again, but the side of my mouth that really had the work done was in a lot of pain. I couldn’t take the Vicadin because I transport kids during the day and the Ibuprofen just wasn’t doing the trick. He filed some stuff down and I went home. It wouldn’t matter whether I had eaten or not, the day came for my first chemo and after that I wasn’t really that hungry for a while. After about three weeks, things calmed down and I have been good since then–until a couple weeks ago.

I started experiencing pain on both sides of my upper jaw again. It got to the point where I just knew I had to get it looked at. I was worked in right away and from the initial x-rays, Dr. Leppo’s partner couldn’t tell if I had cracked the root canal tooth (with all the stress over Jasmine this summer, I had forgotten to go back for the crown), or if the tooth had two roots and one wasn’t all the way tied off or whatever they do to it. I kept saying there was something else. On the tooth right beside it. It was causing me A LOT of pain. He told me to come back on Wednesday and together, Dr. Prudent and Dr. Leppo would take a look and try to determine what was going on. Sitting in the dentist’s chair on Wednesday, I started getting nervous. What if the tooth has to come out. Then I’m going to need a fake tooth. Geez, I already have a fake boob, my face tells a nasty story with all the worry lines of what our family went through this past year, and now I am losing my teeth. I’m just so sick of falling apart.

As I waited for the doctor to come in, I mulled over a lot of stuff. “It’s detail work now, smoothing out the kinks–ya know?” I said to myself as convincingly as possible. I began to think about it more along those lines and after a few moments, I made yet another decision regarding my aftercare. As I sat there and stared at the posters for teeth whitening, I decided I would be more specific with my New Year’s resolutions and I was going to be doubly specific with what I meant by “This year I’m going to work on Me” (my resolution last year–and way to generic and vague). As far as my teeth were concerned, I was going to fix my teeth and get them back into a stable state and then I was going to ZOOM them. A little cosmetic pick me up for the new year. If my smile were to dazzle everyone, perhaps they wouldn’t see the wrinkles that were forming, the gray hair that was just beginning to grow in, the extra 30 pounds I was sporting, or the cyclops boob that was expanding on my chest.

I know its all superficial–it’s not what truly counts–but dammit, I need a makeover in the worst way. I decided that…

I would go and get my hair re-colored–I’ve tried my new natural color for six months now and it’s just not happening. I’ve tried rocking the lesbian chic look and I’m not sure I’m pulling it off. LOL.

I’m going to take myself over to the little nail salon by my house and get a much needed mani/pedi.

I am going to commit to my nutrition program and stop talking about the extra 30 pounds–instead–I’m going to do something about them. I’m going to work my ass off–literally. I want to sign up to learn how to dance salsa. That should burn a few calories.

I’m going to get ready for my next surgery where the expander will be taken out of my chest and an implant will be inserted and I will have the other side lifted. I will contemplate a matching implant for the left side and a nipple reconstruction for the right side–something I’ve not been sold on yet.

I am going to go get a spray tan–for the hell of it. I always feel better with a little color in my skin and since I’m terrified of burning my chest in a tanning bed and not feeling it because all the nerves have been severed–I am going to go get airbrushed–just because. Period. Maybe they can spray on a six pack for me–haha–afterall, I’ve often heard that you should post a picture of your goal on the fridge to remind you of what your working for. I’ll just post my pic on my gut.

Lastly, I’m getting a massage. I need one. I’ve been terrified of getting one after what I was told back in February (that massage helps the drain the lymphatic system and that getting a massage when you have invasive cancer could possible send any free radicals bee-lining for a new host location to set up shop). I need one though–not want one–NEED ONE! Too much stress buildup over this year.

I need to stop pouring so much of me into everyone else all the time and carve out time to pour back into me. I just have to be a little selfish. Period. I’ve neglected me for too long. I had been expanding my mind, but forgot about all the other stuff and as you get older it’s important to look at the whole picture–or pieces of the picture start to get torn and that’s what was happening to me.

All of a sudden, Dr. Leppo walked in beaming. He was genuinely happy to see me. He said to me, “You made it!–That deserves a hug!” He came over and hugged me and then sat down to talk to me. I said, “I’m alive”! and we spent a few minutes catching up on how the year has gone. It was like talking to an old friend I hadn’t seen in years. Our attention turned to my teeth and we came to the conclusion that I really needed a whole new set of x-rays to see the damage that the chemo has done to my teeth.

“What kind of damage does chemo do to your teeth?” I asked.

“Well, it’s not really the chemo as much as it is the fact that chemo dries your mouth out and as a result of an extremely dry mouth, you don’t have the saliva needed to keep your gum tissue healthy which can also contribute to dental carries. Without saliva, there’s nothing to wash the sugars away” he said. Thankfully, I didn’t really experience any major side effects except having my hair fall out and going into respiratory arrest–nothing major–yeah, right–so, a few cavities is nothing in comparison, right? It still didn’t explain the pain, though.

I told him I had tried to schedule a new patient cleaning, exam, and x-rays, but was told the first appointment wouldn’t be until the end of March. He and his assistant looked through everything and because we had been hit with such a snow storm the previous week, there were many cancellations from people not wanting to drive into town. I was scheduled for the next day and as I left, I was told that there was no charge for my office visit for the second time that week. I couldn’t help but think that I had found my new dental home.

The next day brought a lot of anxiety for me. I was going to have to go through all the poking with that sharp little instrument I hate so much. All the scraping on my silver fillings that sends shivers through my spine and sounds like nails on a chalkboard. I was going to have to pray my new hygenist would be mindful of the exposed roots on the upper back molars and I would have to really hold on to the hope that I hadn’t cracked my tooth and the underlying problem was, in fact, due to something else. I couldn’t have been more put at ease. The two girls that worked on me were soooo nice! They answered all my questions about water picks, sonic toothbrushes, and teeth whitening. One talked to me about my cancer and asked quite frankly what I was thinking when I realized that I was really going to have to have my boob cut off (she’s young). It didn’t shock me, and I’d rather someone just come out and ask me those kinds of questions then just whisper behind my back. She asked if I was contemplating reconstruction and I had to laugh inwardly–did she not see this huge cyclops boob on my chest? Did she just think that was the silhouette of my real boob and since it overshadowed the actual real one that the left side must be the side I had cut off because it really looks pathetic over there now. Then she told me she just had an augmentation and that’s when I asked her a bunch of questions–especially–silicone or saline? That’s the question that weighs heavily on my mind these days.

Dr. Leppo came in again and looked through all the x-rays. Turns out I have two old silver fillings that are lifting up and causing me great pain since stuff is getting in there. They’ll need to be dug out and replaced. I hate the thought of it, but am secretly glad to get rid of all the silver in my mouth. It turns the color of my teeth gray and I hate it. So, I’ll get them replaced with enamel colored fillings and that should help the discoloration on that side. We’ll start working on replacing all of them since they seem to be really wearing out–but we’ll do it slowly and as I can afford to do so and about that root canal tooth–well, it’s still too hard to determine just what is going on with it, but I do have a cavity butted right up beside it and it could just be pain radiating throughout that entire area.

We talked about the possibility that once the cavity is filled, I find out that I’m still having pain and that it really is the root canal tooth. We talked about extracting it and having an implant put in. I freaked. I don’t know a lot about that–my parents always had partials–these things that they put into their mouths in the morning and took out at night to brush and soak. On their website their is a tiny flash video of how they use a screw to anchor in the implant–it acts like a metal root. “God, I totally do not want to do this”, I prayed and then quickly proceeded to put it into context–“Chris, you had your boob cut off this year. If you can do that, then you can handle a tooth implant screwed into your jaw”. Dr. Leppo reminded me it may not come to that. I was worried about how much that was going to cost. We never did get specifics, but he did say he would apply all the money I had paid for the root canal toward the implant. He told me he would stand behind his work and if it didn’t work, then he would reimburse me. Have I mentioned lately, that I love him? He knows just what to say to help get me through all this and for me it all boils down to pain and money. How much pain do I have to endure and how much is that pain going to cost me.

We talked about doing all the work at once and again I started to panic. We came to the agreement that I would get the middle sedation treatment–a pill that would make me super relaxed–and if I needed laughing gas–he’d give me that as needed. I’ve spent almost my entire adult life not relying on drugs or meds for things and this year, I have decided–they really come in handy! I wasn’t going to do it all at once, but it sure beats having to get super freaked more than one time. I also can’t stand to take off 2 or 3 afternoons to get it all done. So, we scheduled it for over a naptime where I could feed the kids and have a sub come in to help–mostly just to make sure they nap soundly. The effects of the meds should wear off farely quickly after the procedure and thankfully, my daughters will be home to help me out should I need it with the rest of the afternoon. The 29th of December is the day and I am not looking forward to it. I paid for half the visit (which was supposed to be $350 and they only charged me $219–another score in my book) and I made arrangements to put the balance with the total from the 29th (about $700) on a 3-pay again. Hard to come up with all that during Christmas, but I just have to keep plowing ahead. I can’t think about it or I’ll get stressed. It just bites because I just registered for school to retake a couple classes. These are on my dime. I just got that bill and now I realize why I signed onto that scholarship program (note to self–never let another class slide). Sigh. It’s always something. Anyway, here’s my super nice dentist and if any of you are wanting to make a switch to their office in Moline, make sure you tell them I sent you. They have an incentive program for referrals and one of them is a massage–I mentioned earlier how much I needed one, right?

Dr. Leppo

Sick and Tired

I have been under the weather for almost two weeks now. This past weekend I spent almost all of it in bed sleeping off this crud. I don’t know what it is and it tends to worry me. As much as I hate to see other family members ill, I’m really glad they all have what I have–it means, in a way, that this is probably not cancer related. It is just kicking me in the butt much harder than everyone else. Then Justin came home with a letter from his school saying that there was a confirmed case of H1N1 Flu present in his school. It really wigged me out. Lots of disinfecting, sanitizing, and handwashing going on here.

I had my yearly physical last night. I sat face to face with the woman who didn’t listen to my moans and groans for a year and just thought I was in need of Xanax or Prozac or both. I know she felt bad, but instead of rubbing it in, I just filled her in on how the year has gone. I wish I wouldn’t have been overtired and wiped out from my huge cold. It makes me more emotional and when she was asking me big questions, I just couldn’t help it, I started crying. God, I wish I wouldn’t have done that. Then, she thought she was right in her initial assessment of what kinds of medications I should be taking. That made me even more upset because why can’t someone just cry anymore without someone thinking they need to be in a doped up state just to relate to what’s going on in their lives. She has put me off to the nurse practitioner all year–since my diagnosis. I’ve been mad at this doctor for a year. Last night I was just too tired and feeling like crud to tell her how I felt about that. The one thing I was really hoping she would help me out on was my request to have an ultrasound done. She wouldn’t. I cried. Again.

Do I think I need an ultrasound? I don’t know. Do I want an ultrasound. Yes. I worry constantly about this metastasizing to my ovaries or my uterus. Pap smears only detect cervical cancer and I will admit–that as unpleasant as those exams are, there are worse things and usually they never bothered me much. Last night–my first one since all this has happened to me–was more anxiety-ridden than any other I had ever had. I had to sit on my hands so she wouldn’t see them shaking. What if? What if something comes back on that? It’s been 7 months since my initial diagnosis–what could happen in that time frame? I know the tumor that was found was said to be a grade three–most severe–even for as tiny as it was and that it was multiplying very rapidly. Could other radicals have found a host by now and be multiplying elsewhere?

Could it be that this is the reason why I am soooooo exhausted anymore? I just can’t believe that a few months ago I had been working and studying 20 hours a day and getting 4 hours of sleep–if I was lucky–every night for three years. Now I can barely see straight come 7pm.

Is my body once again growing and feeding some dragon inside me? Without anyone willing to let me have an ultrasound or pet scan–how will I ever know? I would just like ONE of each–a baseline–to know where I started and that way if I was feeling symptoms of something they would have a marker of where it has come from. Especially now–when Jeff may be losing his job and that will result in a loss of insurance benefits–which makes me pre-existing almost everywhere else. While I have the insurance–just let me do it! Why can’t the doctors code it so it doesn’t look like it was routine? Why does it have to be assumed to be–especially when the initial cancer diagnosis is the underlying reason for wanting one in the first place. I just don’t get it. It makes me so angry. It makes me cry, because I just don’t feel like I’m being heard or that I am just another cancer patient. Trying to “live my life” as my first oncologist told me to do is nearly impossible at times. Its not the same. I don’t think it ever will be no matter how hard I try to carry on with a smile on my face. It just masks the deep pain I feel over the unknown.

Then again–would I really want to know? What if the scans came back and I was glowing like a fire cracker? Would I really want to see that? Would that make me even more overemotional? Probably. But–why wait until you have symptoms–then it’s too late. Wouldn’t you want to know if you have a huge brain tumor or spots on your lungs, or tentacles wrapped around your ovaries? The quicker you can have surgery and cut it out–the better your chances–right? I know it all sounds irratic, but these are the thoughts that keep me awake at night. It’s hard at times to forget, and I make it harder on myself when I don’t follow my nutrition regimine that my nutritionist has worked with me on all summer. Or when I forget to take my Tamoxifin. Major guilt trip. I feel like I have some sort of control with those things or with the exercising, but I am still partly in denial and not being consistent. I have not fully jumped on the bandwagon–I did early on, but now I am falling off and being drug by the cart. I know I need to recommit. I know.

Could it be the Tamoxifin that’s wiping me out? I know it has played a part in my early menopause and with that–could that be making me so tired? Speaking of the Tamoxifin, I tried to see if I could have the doctor’s office prescribe all 5 yrs. worth of meds. in advance. I am terrified that we won’t have insurance and I will not be able to even afford the cost of my prescriptions each month. I have no idea what the cost is, but it doesn’t hurt to ask, right? So, I called there and I didn’t even think about the shelf life factor until the nurse pointed it out. She also really sounded odd and then she told me that they could only refill the Rx monthly so that individuals would be less inclined to sell the drugs elsewhere. Oh my gosh, great, now my oncologist’s office thinks I’m a pill pusher on the black market somewhere and I will be watched for that. It made me laugh in a way and then I realized that there are probably thousands of women in just the same boat I’m in–if not worse. Think about all the women in third world countries who don’t get the Tamoxifin. Then, I think about how I live in America and I will be considered pre-existing here pretty soon–unless an insurance miracle happens and Jeff gets a new job without a pre-existing condition clause.

Is it that it takes a very long time for your body to recover from chemo–(even though I only had one full treatment before becoming severely allergic and going into respiratory arrest)? how long does it take before your energy levels return? Do they?

Is my body fighting against something or just trying to still heal? I know 6 months later, my body is still not draining the lymphatic fluid correctly. Only two lymph nodes were taken out in surgery and my body should have, by now, compensated and learned how to move the fluid through my body. But it still pools under the scar tissue in my chest and it is painful. Weirdly–the whole top of my chest is numb–all the nerves severed, but deeper–around the muscle–it’s still terribly painful. How long will that last? Will it last forever? Is it my body trying to tell me to lay down and get vertical so the fluid can move better? Is my body just working overtime? I do worry about that lymphedema every day and knowing how its pooling in my chest doesn’t help my worries. The surgeon doesn’t seem too worried although in my 2nd followup with him two weeks ago, he was concerned about the continued pain factor I’m having. He didn’t suggest anything, though–so I guess I just live with it.

Will I ever feel the same?

Will my psoriasis ever go away? It seems to be worse these days and that was one of the first indications that I found that alerted me to something being wrong. I know stress exacerbates psoriasis and I am truly amazed I am not covered head to toe in the stuff. Be thankful its just on my elbows, right?

Is the constant stress of the cancer, my self-image, my oldest daughter, how everything is affecting my younger children, my husband’s impending job loss, the uncertainty that will bring to us financially, the loss of benefits, the mounting medical bills for me and for Jasmine, the stress on our marriage and all of our relationships just taking its toll and no amount of counseling can really fix ALL the triggers at this point?

Once this metastasizes–it is really hard to detect if it goes to the ovaries or to the uterus. Why can’t we just schedule a hysterectomy at this point. I’m really inwardly wigging out about this and even though my new oncologist doesn’t want to start “butchering” for no good reason especially when the genetic tests have all come back fairly positive–I can’t help but think–Isn’t cancer a good enough reason? I suppose if I wanted it done badly enough and threw a big enough temper tantrum–I’d get my way–but am I just being over reactional about it? If I’m no longer using the stuff–take it out. That’s three less places for this to land and I will know that I am not going to die from those associated cancers.

Sigh. Sometimes my brain gets so ramped up with these thoughts that they just spew out onto the page. I have to keep coming back to my bible to try to help quiet myself. My goal of self-quieting has been a hard one to tackle this year. I think it also gets revved up as my doctor visits start coming. I will go see the plastic surgeon tomorrow to talk about reconstruction–something I totally didn’t think I was ready for, but with the possibility of losing insurance and the fact that they will now pay for a boob job–I’m going to talk about the options. It may not even be an option, but I have to go and check it out or I will be mad at myself if I let the opportunity slip away. Next week, I see my oncologist for a 3 month check up. I hope we will look at bloodwork and see if anything shows up there. I don’t know what I should be asking him at this point because I just feel like everyone wants me to “live my life”. If any of you have any questions I should be mulling over for him, please let me know. I would welcome them whole heartedly.

I received my long awaited call from NAFCC (National Assoc. for Family Child Care) that my long overdue national accreditation observation is about to happen. I have been working on it for two years. I applied for the observation the end of December 2008. Normally, you should get a call between 4-6 weeks to schedule the observation. Here we are 9 months later and I will finally undergo this on October 6, 2009. They have been swamped since revising their re-accreditation standards and since I am a newbie, I guess, I was not a priority. I often think of what that would have been like should I have gotten that call within the normal time period. I was just getting diagnosed with breast cancer. I would not have been ready for that at all. Looking back, I really am surprised I made it through the summer and really glad that this observation is coming while the house is quieter. I guess I should be grateful that it is happening after my mastectomy, after all the big rowdy boys went off to school, after a regular naptime had been re-established for the little ones, and after my head came back from Bizarro World.

Since this call came through, I haven’t been able to think about too much else in the past week–including the cancer stuff and I have truly welcomed the break. It makes me realize that when I am working on something I’m passionate about, I get a lot accomplished————(Why can’t I get truly passionate about my cancer?)———- I’ve been going through all my checklists making sure all my T’s have been crossed and my i’s have been dotted. I have a book that takes me a few hours to get through each time because I am really focusing on doing my best. I have been through it several times and plan on several more read throughs. I spent all last week working on my parent teacher conferences and getting those in order. I was glad to get them all done so I could move on to more paperwork that has been lagging. I screwed up my classes this year, but I am not going to screw up this. I have worked too hard. I want to be able to look back on 2009 and know that despite the huge setback, I was able to accomplish this major accomplishment. Usually centers or schools or colleges are accredited. It isn’t that often that in-home providers become accredited. So, I am working day in and day out right now and everyone in my family has their very own honey-do lists. I’ll get there slowly, but surely and quite honestly, I’m ready–its just the details I’m going back for. Tons of details, but it will all come together.

I’ve also been allowing several college students studying at St. Ambrose Univ. to come tour my environment. This is good practice for me as they are able to give me fresh eyes. They are students studying to be teachers–how I wish I could go back to school–but I am not ready yet. Maybe next year. Maybe this is why I was supposed to ultimately take the break from my college courses this year. To ready myself for accreditation. To make sure my head was still in the game. I can honestly say that I was in a perfect position to give up on everything I had worked for professionally. Just chuck it and spend my days playing with my family. It was a summer where I was re-evaluating everything in my life and trying to figure out if things were still working or if they needed changing in some way or another. When I look at my chosen profession, I can’t imagine doing anything else. I love working with kids. I love where I work. I love the tools I get to work with! Some people provide child care as a means to an end, a temporary job while their own kids are young, but me–it really drives me. I absolutely love what I do and when I had really looked at all the reasons why I do what I do, I realized my head was ready to take on the observer that would come spend the day with me. If I could just shake this illness now…

We celebrated my son’s 6th birthday this past week. Time flies. I asked him what the best present he got was and he looked at me and told me it was me and that he was super happy I wasn’t dead. “Gee, thanks, babe–I love you too” is what I responded with. ­čÖé I’m grateful I got to see him turn 6 and I am glad I’m not dead yet. Lord knows how I’ve worried over that all summer. So, I’m grateful I’m alive. I’ve survived my diagnosis for 7 months now. Almost a year. That’s an accomplishment in and of itself.

I have begun a Wellness class at the YMCA. It is 12 weeks of free personal training–2X/wk. for 1 1/2 hrs. each eve. The best part–its free! I get to work with a personal trainer for free for 12 weeks! I missed the first class because I was sick two weeks ago. I went to both classes last week and thought I was going to die each night. I began working on my WII fit on the off nights, but this cold/flu is really pulling me down. I am so happy for the outlet and MAKING ME a priority. I have met a handful of other breast cancer survivors that are in various stages of their disease or treatment and I just know that will be instrumental in my mental comeback. I think being able to dedicate time to working out will also help me release those endorphins I haven’t seen in a very long time which will help relax me, help me sleep better, make me feel like WANTING to recommit to my nutrition plan again, making me WANT to be more consistent with my med taking, and maybe inthe process, I will lose the 30 pounds I’ve tacked on. UUUGGGHHH! I am bigger than I was when I was pregnant with Jordan (she was the biggest baby)! Could it be the Tamoxifin that is helping me pack on the weight? I know that stress will pack on the weight also and I am surprised I’m not morbidly obese. The added weight make me more sluggish so, I have to lose it.

My other major concern is that I’ve been told that estrogen is stored in fat and since I’m sporting my own personal flotation device around my mid section these days–I need to find something to help me deflate it. I have to lose the weight–I worry every day that the hormone that is feeding my cancer is setting up shop and getting comfy in my fat. Ok–who am I kidding–I also want to lose the weight before my next class reunion next summer–I was so worried what everyone was going to think about my hair–now I just want to walk in and have everyone think, “wow, she looks great for having cancer”. I know. I know. Completely immature and shallow, but who wants to come back after 25 years looking like crap? Yes, I know all the stuff about the inner beauty, outer beauty, lasting beauty stuff, but when it comes right down to it, I really just hope that all my beauties are playing on a level field by then (and I really hope I drop 30 pounds!) :). I’ve run into a few friends from high school, they all happen to be nurses. They have all said I look good–my color is good and since they work with sick people all the time, they can tell when a person is sick. I guess I’ve got that going for me. Problem with that is–I’d rather have hair and a boob–omg–I just did it–I said something very generically–I take that back–let me be specific…

I’d rather have a headful of healthy, blonde, soft, stylishly coiffed hair that I could seductively whip around should I be in the mood for some lovin’, be able to pull it back when I’m feeling playful, and be able to run my fingers through it to tousle it and have that wind blown look that most women dream of. And–I’d rather have two boobs–the same size–preferably a little lifted and energized looking with a natural looking nipple tattooed on the new one. I used to wonder about having bigger boobs and although I wouldn’t mind them a tad larger, I’d now just be happy to look like I did. So a perky 34B would be great. Afterall, it’s not the size–it’s how you package them! I think that’s it–have I forgotten anything? Please feel free to let me know if that wish needs a little more something something. I will be checking out the silicone stockroom tomorrow. Wish me luck!

How the Hell am I Supposed to Know?

Have you ever thought about what you would want to say and to whom if you were drawing your last breath on Earth? I had an opportunity to find out just exactly what would filter through my mind almost a week ago Thursday, May 28,2009. I went in for my chemo treatment and ended up having such a severe allergic reaction to the drugs that I came close to checking out–for good. I’ve spent the past several days reviewing in my mind what happened and it makes me more and more frustrated. The doctor also seems to be giving very vague and watered down information to me which insults my intelligence and leaves me feeling even more like I just can’t trust anyone anymore.

On this particular day, I worked until 12:45 pm and then raced off to place my own child at a friend’s home so I could go get treatment. I almost forgot that I needed to do something with him. Jeff didn’t go with me this time because I really didn’t see the necessity. He’d be bored sitting around for hours and I would either nap or chat with the other ladies I usually got paired up with. I wasn’t nervous about anything or stressed out about anything except that my daughter who had been home for two and a half weeks had taken off again. I was actually curious to see if I would have the same reaction as the last time.

Three weeks ago, it was so hard for me to differentiate whether the excruciating migraines (which lasted 9 days) were a result of the chemo, or because of the fact that three days prior to that treatment, I had all my dental work done–5 cavities filled and a root canal. It was so intense that I had to be put under for three and a half hours while the dentist hovered over me wearing his microsurgeon’s binoculars. When I tell people that they wonder, “Gee, when was the last time you saw a dentist” and my reply is “6 months ago”. This particular example of where my body was in a heightened state of deterioration may or may not be contributed to the fact that I have cancer, and I don’t know whether or not research has been done on this, but if you ask me personally-I do believe this was a telltale sign. It could very well have been a combination of both.

I had been told I wouldn’t have much of an appetite afterward and that food would taste different. Due to the pain and throbbing in my mouth, I wasn’t able to eat or sleep for 5 days straight. Everything did taste different, too. It had no taste, actually. My mouth seemed dead. There were no flavors and even when I tried to eat, I was forced to suck on everything because there was just too much sensitivity. I was also extremely wiped out once that shot of Neupogen hit my system the next day. After 9 days of these horrific headaches, I finally called the oncologist’s office and told them what was going on. It truly felt like there was something happening to my brain. I could only visualize the worst–possible bleeding, blood flow being severely restricted, something getting ready to burst, and so on and so forth. They talked to me like I was an idiot. Their response was “well, why in the world didn’t you take any Ibuprofen?” “Gee, I don’t know, because I’m a masochist, I guess–DUH…I was told I shouldn’t take it because it thins the blood. I wasn’t told I COULD take it–at some point–and when is that point?” I mean really, it’s not like I’ve ever done this before so–HOW THE HELL AM I SUPPOSED TO KNOW???

In all, it has taken close to three weeks to be able to chew anything. There were several days where I called my new dentist up and asked about the problem. I even took all the children with me one day so I could have my bite filed down a bit in an attempt to lessen the skull piercing pain. I was told it may not take and we may need to pull the two teeth in question. I just prayed that wouldn’t happen and kept taking my antibiotics faithfully. I was desperate for some pain meds, but working with children during the day and transporting them to and from various activities–I knew that wouldn’t be an option–I’d be under the influence. I just stuck to Tylenol even though it didn’t work and so, I suffered through it.

Mother’s Day weekend I was wiped out. I was also emotionally drained because that was the weekend we found our daughter. I was stressed and worried and sick to my stomach about what was going on with her. Through it all, I managed to take her to the doctor to get her the medicines she needed for a host of illnesses. I also ran kids to birthday parties and coffee house meetings so I could get to the bottom of some girl drama with my young daughter, her friend, and her friend’s mother. I couldn’t sleep, I couldn’t eat, I couldn’t do anything but cry. I had reached an all-time low. Not about the poison that was filtering through my veins, not about the constant questioning that I submitted myself to everyday, but for my daughter and for my best friend who was losing her dad to stage 4 lung cancer. While in Virginia over the holidays, she received her news. Just a few weeks later, I received mine. Together we have cried and bitched and moaned and occassionally laughed. We have been there for each other and had it not been for each of us–the other wouldn’t have been able to get through these life changing events. I was at the visitation this past Tuesday where they said goodbye to her dad. She and I were just becoming close when my dad died exactly one month shy of two years ago. We’ve been through a lot–her and I–we both have teens that have pushed every limit possible and thankfully we have been able to lean on one another and vent our frustrations. We are both childcare providers and we both are going to school together. We are both at the same point on the wheel at the moment. As it happens, life has thrown a huge crow bar into our wheels and we have both come to a screeching halt. On that Mother’s Day weekend, I cried for my friend. I knew what it was like to lose a father. I knew it wouldn’t be long and I prayed he went in peace. I’m glad he did.

Here it is now four weeks later and I just can’t believe it’s been one week since this life-threatening episode happened to me. I really didn’t expect anything to happen. I walked into the place and had a seat after checking in. I was called into the examining room where the Dr. came in to talk to me and see how I was doing. I really didn’t have much to report and I had told myself not to forget talking to him about the Ibuprofen, but I did. From that room, I was taken to the other side of the building where the chemo rooms are. I’ve never been given a private room, they’ve always been communal. I don’t mind that because there are other women there in various stages of their cancers and I have gotten a lot of information from the ladies in those rooms.

The first time I went, Jeff took me. I remember it being a gorgeous day outside. My spirits were up and I was totally packed and ready for a long day. One of my daycare moms, Tracy, gave me a care package that morning. It had trashy magazines to read, lemon heads (supposed to take away the metallic taste you might get in your mouth), gum, a little personal fan (in case I got a hot flash), and a new water bottle (pink–just for the occasion). I was so touched by that gesture and I realized I had not thought of taking any of that stuff, but she also has family members who have gone through this and so she knew more of what to expect than I.

Last Thursday, however, I was in a rush. I hadn’t packed anything and really didn’t worry about it since there was a TV in each chemo room, a small fridge, snacks, blankets and lazyboys to recline in. I did pray that something more positive would be on the TV this time. The first time I was there the ladies and myself were glued to Elizabeth Edward’s interview with Oprah where they discussed her husband’s affair and her battle with breast cancer. Hers is terminal. I wondered if that was a sign that first day. On this day, there was only one other gal in the room. Her husband was with her and she was sending him off to poke around Home Depot for a couple hours. We started to chat and it turned out she was past staging. Totally terminal. She told me that, at first, she had had stage 2 with no node involvement. She had gone through a mastectomy, chemo, remission for a year, and now it was back–widespread throughout her bones and brain. She was now undergoing chemo again–heavier duty stuff, radiation to the brain–resulting in hearing loss, and the cancer had deteriorated her vertebrae up where it meets the skull and she could no longer hold her head up. This resulted in spinal surgery where rods and metal plates were fused to her upper spine. How depressing is that. I know. Totally. Yet, I keep getting paired up with patients with stories like this. It is doing nothing for my emotional stability. It doesn’t give me encouragement or hope and I am not sure if its just a random draw as to what room I am put in, or if Iam put in there to boost THEIR faith and hope.

The last time I had treatment I made it through the whole bag of Taxotere and it wasn’t until the last half hour of it that I started to feel some weird stuff–my eyes were burning and watering, my throat was on fire, my chest felt really tight and it was hard to breathe–but it was somewhat tolerable. I didn’t say anything at first because I figured this was what having chemotherapy felt like–afterall it is poison that’s being infused into your veins. I remember really trying hard to withstand the drug, but with 10 minutes left of the bag, I had to tell the nurse. She said to me, “well, honey, you’re having an allergic reaction–why didn’t you tell us sooner?”

My response to her–“HOW THE HELL WAS I SUPPOSED TO KNOW?”

Geez, I’ve never done this before, I don’t know what is normal. I’ve never had an allergic reaction of this kind before–and I’m allergic to a lot of stuff. Nothing was explained to me beforehand. I wasn’t prepped on what signs to watch for. It really felt like she was considering me an idiot–like–“Duh”. She then turned the meds off and switched me to Prednisone, Benadryl, and Saline before turning the Taxotere back on to finish out the drug. I thought it was odd that if I was having an allergic reaction to the Taxotere–of any magnitude–they would stop that drug–I mean–I was almost done with it–why not just stop that and switch to the Cytoxin at that point? I don’t have the medical knowledge or training when it comes to this stuff and so as I watched the drip start again, I paused and thought…

HOW THE HELL AM I SUPPOSED TO KNOW…

So, as I sat in my Lazyboy recliner chatting away with the terminal gal, I apprehensively watched the different drips of liquid oozing from their bags and traveling down toward my vein. For the first hour and half everything was fine. Through my IV, I was given 2 bags of Prednisone (because I fell asleep early the night before and forgot to take my pills), one bag of Benadryl (just in case I started to have an allergic reaction like last time), and a bag of saline to wash it all out of the line before the Taxotere drug started. A woman from Gilda’s Club came in and we were all laughing when I got this familiar feeling. The same feeling as the last time only this time it came on with such ferocity and within the first couple of minutes after the Taxotere started that I had only a moment to react. My eyes flew up to the bag hanging above me and through burning and watering eyes I noticed that I was at the very beginning of the bag.

“Shit–I have to get through the whole bag ‘, I thought in an instant. Then I felt my throat begin to swell. What a strange feeling that is–but it was just like the first time only it was rushing in like an F4 tornado. I struggled to gasp for air and my arm went up to wave to the two ladies that I was in distress. I could tell my face was getting red. My lungs felt as though someone had taken a rope and wrapped it around both of them, tying and overhand knot, and pulling tight. Initially, I began to panic, but somewhere I remembered not to expend my energy by flailing. I never saw the woman from Gilda’s jump up and race down the hallway in search of help. I did hear her screaming, though. I felt someone thrust a bedpan in my left hand that was clenched tight into a fist. I remember thinking–“oh, God, I hope I am not going to start foaming at the mouth or vomit in front of all these people that have just run into the room. Then, my mouth filled with cortisol–that stress hormone. I was just talking to my nutritionist about that last week. He told me that in a fight or flight mode your body produces this and in extreme cases your mouth will fill with something that tastes like copper metal. Sure enough, the most rancid mouthful of copper was now trying to make its way out of my mouth. Is that what the bedpan was for? I remember my body slumping over. It was as if I was in a coma–unable to move, speak, or breathe, but fully awake and aware of what was going on around me. I know at least a minute and a half had to have gone by by the time the doctor came running in the room. I had been curled up on the Lazyboy with my legs tucked underneath me and he straightened me out, but I was still slumped over. I couldn’t move. He got down on the floor and looked into my eyes and asked, “Can you breathe?”

Mind you, by now I was purple and the pressure in my head was so great that I thought something would surely explode. So, when he said that to me I wanted desperately to say sarcastically, “Does it look like I’m breathing?” but I couldn’t. I looked hard into his eyes as I felt more and more like darkness was approaching. With my eyes I told him…

“Please find my daughter, Jasmine, and tell her I love her.”

“Please get my cell phone and call my husband and let him know what’s happening–and tell him I love him.”

“Please find my other children and tell them that I love them.”

and then I thought…

“This is it. I’m going to be staring into the eyes of a man I don’t trust as I leave this world. I’m holding the hand of a strange woman.”

I remember him telling a nurse to go get the epinephrine. I thought–“oh, shit, that’s gonna hurt when they jab that needle in my leg”. I remember her returning. I saw her standing there, not with the epi-pen, but with a syringe. They were going to put it into my IV which had been turned off and replaced with more benadryl. But she never came. It was never put in. I remember pretending I was diving into an olympic sized swimming pool. I was swimming the length of it underwater very slowly. I kept telling myself…

“When I get to the other side, I’ll come up for air”.
“When I get to the other side, I’ll come up for air”.
“When I get to the other side, I’ll come up for air”.

Then the lights went out. When I opened my eyes, I was covered with a blanket, my breathing was very shallow, and I had oxygen up my nose. I don’t know how much time had passed or what happened, but I knew I was going to have to stay for a long time while they watched me. I was so tired. Everyone was gone and every once in a while someone came back to check on me. I reached for my phone and tried to call Jeff several times, but he never picked up. I tried to text Jasmine when my new friend, Denise, from down the street texted me inquiring when my chemo was. I was still pretty out of it and I sporadically told her what happened and that I was alone and couldn’t get ahold of Jeff. This woman that I had really just started talking to in the past couple months came to be with me. I was really touched. She drove me home and helped me pick up Justin. I will always remember and be grateful for her texting at just that moment. A sign. God is putting new and old friends in my life to help me when I need help.

I was told to come back on Monday of this week and the doctor and I would discuss options. I was able to go to my appointment through the help of my dear friend, Becky, who was off from childcare and making arrangements for her dad’s funeral the next day. She watched a few of my daycare kids for an hour so I could make that appointment. Jeff met me there and together we went in to listen to what the onco man had to say. Remember back when I said I had decided to like the guy? I take that back, now. I’ve been getting increasingly annoyed with this man. I truly feel that he gives me information in a very watered down fashion. He talks vaguely and I need specifics. I’m a big girl, I can handle it, just give it to me straight–BE SPECIFIC. But he’s not and I start getting upset and so once again, our visit ended in a deadlock between us. It went like this…

He comes in and shakes my hand and acknowledges Jeff. We exchange salutations and he says, “So, Thursday didn’t go so well”.

CJ: “No, it didn’t”
Dr.: “I don’t think it would be in your best interest to pursue any further treatment–do you?”

HOW THE HELL AM I SUPPOSED TO KNOW?

CJ: “I don’t know, are there any other options?”
Dr.: “Well, yes, but we can no longer give you anything in that whole class of drugs now because the first time you had a mild reaction and this past Thursday was very severe. The next time would have grave consequences”

I’m thinking…..”DUH”

CJ: “I’m curious why you didn’t do anything–call 911, administer the epinephrine, etc”
Dr.: “Well it looked like you were going to come out of it’

Was that before or after I blacked out? Really–what was the guy waiting for–my heart to stop beating? I went over two minutes without oxygen. I don’t know about any of you–but it’s stuff like that that makes me not trust the people I’m paying unbelievable amounts of money to help KEEP ME ALIVE. ???

Dr.: “We could continue with another course of treatment that consists of 3 drugs and would need to be taken 5 more times. Usually it’s 6 treatments, but since you’ve already had one, you’ll need only 5 more. The drugs are Cytoxin–which you already have had, Methotrexate, and 5FU”

“Well, that last one is appropriately named”, I thought.

CJ: “What is the difference between the two courses”
Dr.: “This course was used a long time ago–like 20 years back. It’s side effects are severe diarrhea and mouth sores”.

That’s just great. That’s just what I need. I’m so sick of all this crap (no pun intended) and I just want my old life back.

Dr.: “It seems to be tolerated pretty well, but you need to decide whether you are interested in pursuing chemotherapy at all or if you just want to stop. Do the benefits outweigh the risks?”

HOW THE HELL AM I SUPPOSED TO KNOW?

CJ: “I don’t know what the benefits or risks are of these drugs. I don’t have any information on them. Is taking them going to increase my chances for any other major problems–heartattack, stroke, anneurism, other cancers?”

CJ: “If I don’t do the chemotherapy at all, then what? What happens then? How do you monitor me? Are you going to give me a whole body scan at some point? How do you tell if its coming back? How do you tell where its coming back? How do we proceed from there and for the rest of my life?”

I was so upset. Here I was back at square one again–needing to make this decision all over. It was just so overwhelming. Is it good enough that I’ve already had one treatment? Am I settling with just one treatment? Was that enough to eradicate all the free radicals that could be swimming around my lymphatic system just lying in wait for a new host site? Or do I go for the new course of treatment. Afterall, I already chose chemotherapy the last time foregoing the study. That was my huge gamble, my roll of the dice. I made that decision once and then I stuck with it. Should I do that again–I mean–if I lost all my hair for just one treatment–I’m gonna be pissed.

Dr.: “It just seems like you want to be in control of everything”.

Again, I wanted to say to him…”Duh”.

CJ: “Of course I want to be in control. I have very valid concerns about my care and the people I have entrusted with my life. I don’t feel that my questions are being answered. I feel that you want me to make a decision rashly and without the information I need to make an INFORMED decision”.

Dr.: “What is it I haven’t explained over and over? I cannot tell you if its going to come back. There is no guarantee with chemotherapy”.

CJ: “I want to know how you can tell if its coming back”

Dr: “I can’t”

CJ: “That doesn’t make sense–how can others get PET scans that let them know if they have anything growing somewhere else. Why can’t we do that?”

I’m sorry, but there just seems to be a few links missing in the chain. There is specific information that is not being told to me. Just tell me, dammit, is it an insurance thing? Is there a protocol for these types of things? Do you have to do X,Y,and Z before I get the PET scan? Am I even thinking of the right type of scans? Am I using the right terminology?

HOW THE HELL AM I SUPPOSED TO KNOW?

Jeff: “I think you’re worried about the end of this process and not focused on the here and now”

CJ: “No, in order for me to make the decisions I need to make here and now, I need to know the timeline of events. It’s how I process things. Tell me everything from start to finish so I can process all the steps in the process. So I can wrap my brain around what is happening and I can choose to deal or not deal with it’.

Dr.: “I will not give you this PET scan. We just don’t use this as a way of diagnosing. You would just become a victim of technology because we all have cancer cells and you may see something that may not be something we need to worry about.’

CJ: “I understand that, but you may be able to detect new tumors forming on major organs and how are you going to know if something is coming back if you don’t do scans and at that point–will it be too late? And if you catch it in the early stages then we have a better chance of getting rid of it.”

Dr.: (fully exasperated) “Listen, just go live your life and don’t be so consumed with this”

CJ: “WHAT?? I would love to. Do you think I want to have poison pumped into me? Do you think I wanted to wake up to this diagnosis? Do you think I wanted to have my breast cut off? Do you think I wouldn’t love to just have my old life back? Do you think I wouldn’t love to be sitting somewhere other than here in this office? I would LOVE to go live my life. But, my life is forever changed by this. No, it doesn’t need to define me, but you tell me one person that doesn’t worry about whether or not there cancer is going to come back–and where it will come back–and how severe it will be when it does. Maybe survivors or patients that are in remission are able to sleep a little easier the further out from their surgery and treatment they get, but when you are still in the thick of it–how can you not be consumed by it? This cancer has not only invaded my body, but it has invaded my sleep patterns, my dreams, my thoughts, my fears, my hopes, my family, my jobs, and all the little details that make up me. It has affected my appearance to the point that I am reminded every minute of every day that I have cancer. I have a 10 inch scar across my concaved chest where all the nerves have been severed and I can no longer feel anything. I have lost all my hair, gained 20 pounds, and watched the bags under my eyes get darker. You don’t have this. You are not emotionally invested in me, but the people around me are and this has affected their lives also. They would love for things to be back to normal also. My normal is so far removed from what it used to be that I can only dream about my old life now. It will never be like that again.”

I wasn’t crying, but my eyes were filled with tears. I was pissed. And you know what he said to me?

Dr.: “It seems like your on the verge of a mental meltdown and you really need to relax because that is half the battle”.

I had to suck in my breath. A mental meltdown? Are you freaking kidding me? I wasn’t–until he said that and then I was so angry that my eyes turned into slits–I knew at that moment, I looked like my mother on one of her good days. I was completely insulted. Even if I was going to have a meltdown–who is he to judge? Just because I don’t roll over when he tells me to and just because I come in there armed with questions and I am expecting specific answers to those questions–to him–that makes me a control freak. If I show a tear or two out of frustration–well, then, I’m on the verge of a mental meltdown. Maybe most patients worship their doctors. Maybe they will do anything that doctor says without questioning it. Maybe they don’t have the courage enough to stand up for their own bodies and their own health–but that’s not me. I’m trying to be proactive about my life, my health, my options. I can’t control the unknown, but I can try to control some of the knowns and how do you find out about those? All I wanted to know was basically–How are you going to monitor me if I don’t do the chemo? And in return, I get tactless, sexist remarks.

CJ: “Tell me this, how do you define remission? How do I get there? How do you know when you are no longer in remission?”

Dr.: “Remission is when your cancer hasn’t come back in a while”

Geez, I feel like I’m playing word games with my teenagers. Why can’t he be SPECIFIC?

CJ: “You’re idea of ‘a while’ and my idea may be totally different–what’s you’re definition”

Dr.: “Listen, you probably already are in remission”

CJ: “How do you know that? How can you tell? To me, there’s a wide disparity between ‘Probably” and definitely.”

Dr: “You’ll know.”

CJ: “How can you say that? What if I don’t? I didn’t know I had breast cancer.”

Dr.: “You’ll feel it.”

CJ: “What if I don’t? My own doctor didn’t feel anything–it was only detected through imaging. I just want to know how you are going to be able to tell if I’m getting this somewhere else. Are there blood tests you do that alert you to increased elevations in certain counts? Something that would make you say–‘oohh, we need to look into that further’ and then you order some scans? And why don’t we just go ahead and do the hysterectomy and even an ooferectomy (removal of ovaries) since the Tamoxifin (hormone blocking drug given for 5 yrs.) is known to cause uterine cancer.”

Dr: “That is major surgery and we don’t just do that without reason.”

How many more reasons does he need? Should I see a gynocological surgeon to talk to him/her about it? Has he forgotten the massive surgery I just underwent? If I am ok with it, why can’t we discuss it? Hysterectomies are done every day? Two less places for this cancer to land. I know I won’t die of ovarian, uterine or cervical cancer then.

Maybe I was not expressing myself or my concerns in a way that he understood. I knew he wasn’t giving me the answers I needed in a way that I needed them in order to process them and make a decision. I know he just wanted me to shit or get off the pot. Chemo or no chemo so we could go from there. I was hung up on what would happen if I chose no chemo. I know, to him, it must seem that my inability to make a quick decision was really indecisiveness or in essence inaction–procrastination. The look in his eyes and on his face spoke volumes of this. I tried to convey to him that this wasn’t like picking out my nail polish color for the week. We were at a standstill and I was keeping him from lunch. He got up to leave and he said,

“Why don’t you think about it for 24 hours and then call the office and tell me what you would like to do–if you decide on the chemo we’ll see you tomorrow”.

With that, he left. Well, that is impossible. I simply will not come in tomorrow on such short notice–I have other families that rely on me being there and they already took off Thursday and Friday of last week. I can’t wammie them like that. I simply won’t even think about that as an option until next week. I don’t know if that throws things off in the cycle or not. I don’t know if they HAVE to stay within a certain time frame. Maybe not doing it until next week kicks me out of the 5 cycle treatment and back into the 6 cycle treatment all over again. I just felt like there were too many things I wanted answers to and I wasn’t getting those answers. I needed to talk to other people and get their thoughts. I talked to Denise for a long time about what her follow up care is like. I wondered why I just couldn’t forego on the chemo for now and if it turns up somewhere else–start it then–or is it too late at that point? If all these women that are in these rooms have already been through it before and they are back again–then it really didn’t do them any good in the first place–did it? I needed to take a break from thinking about it.

I didn’t call them back the next day. I called my Aunt Pam. I talked to other survivors. I really talked to Becky and Denise. I called the nurse this past Wednesday and for 40 minutes we talked. She pretty much reiterated what he said and I felt myself frustrated all over again. We hung up with her promising to get specific answers and call me back during naptime. When she called later that day, I did get a couple nuggets out of her. I was told that the shot of Neupogen would no longer be part of the regimine and I was glad because it carries a risk of future Leukemia. She told me specifically that one treatment isn’t “good enough” because studies have shown that 4 treatments (or more) depending on the type and stage is the magic number. FINALLY, something a little specific–one question down. I was told that I would have regular 6 month checkups where I would have a mammogram and we’d discuss how I was feeling.

That’s it? How is it that everyone else I talk to has regular CT scans of their bones, brain, full body, and chest x-rays. I was originally told the likelihood of it coming into the other breast was minimal and that this type of cancer usually travels to ovaries, bones, brain, lungs, and/or liver–major organs. You can’t even detect ovarian cancer through yearly pap smears. By the time its found–its usually too late. I watched Farrah’s Story the other night on TV and she was getting all her scans done each time she went in. Is this something just for the uber rich?

I know he’s not God–he can’t tell me whether I’ll get it back anytime in my lifetime again. He can’t “cure” me, but there has to be a way that he can tell if I’m growing a tumor somewhere else. I know in my gut there’s an answer to this somewhere. I went onto the Cancer Treatment Center’s website and looked at the list of things you would have to bring with you to your initial consultation. In that list–all your CT scans. I’m to the point where I just need to talk to another oncologist to see what the protocol is. I cannot afford to take off a week for the initial visit at these Centers, but I will try to get in with Denise’s oncologist. I’m really not trying not to pick fights with my surgeon or my oncologist, but dammit, I know there are answers out there. I’ve realized that it’s not so much the cancer I’m fighting as it is the fight I am battling each day with the insurance company and the doctors that are supposed to be looking out for me. I just don’t trust anyone. Not one doctor I have has given me reason to do that yet. Am I just being a bitch? I hope so. Babe In Total Control of Herself. I am trying to look out for me.

I’m in need of advice. I need SPECIFIC advice that deals with these drugs and also the types of follow up care I should expect to receive at each future visit. I’ve researched the drugs and its all so worrisome. I think back on this past week and all the conversations I’ve had with friends, survivors, terminally ill patients, and medical professionals. I’m taking all this information in and trying to come up with an informed decision. If you can help me–please leave comments because…

HOW THE HELL AM I SUPPOSED TO KNOW.

What Would You Do…

April 20, 2009

Well here it is. The moment of truth. One more day I have been waiting for. This time its been 3 weeks of agonizing waiting. Waiting for my insurance company to decide whether or not they will pick up the tab on the $3,700 blood test that will tell me whether or not I’ll need chemotherapy. Waiting to see what category I fall into–low risk, intermediate risk, or high risk. Waiting to see what the score on my tumor cells will be: 0-17 = low risk; 18-24 is intermediate; 25-100 is high risk. The tumor cells are tested to see how fast they multiply and divide and the rate at which they travel. The test will predict the likelihood of this cancer recurring somewhere else in my body and an estimated time in which that will happen.

Oncotype DX. That’s the name of the test. I had read about it so quickly on some website prior to actually needing to see an oncologist. I was going to remember that name and ask if that would be something I could benefit from. I completely forgot, though, until my oncologist brought it up at my last appointment. I quickly said, “I heard about that! I want that!” Of course, I was reminded of the test’s price tag. I was reminded that it was a fairly new genetic test and not all insurance companies would pay for it. I am just so sick and tired of insurance companies. I am so tired of waiting for others to determine whether I am worthy or not–financially or otherwise. I am so fed up with having no control over this. Whenever I try to take some sort of control–I am knocked down back into place. Heaven forbid a strong woman should try to take charge of her own life.

I took the 4 boys to school, passed the baton to my mother-in-law who stayed with 2 little ones, and I stepped out into the rain. Driving to the doctor’s office, I couldn’t help but think how many appointments I went to actually involved a rainy day.

“Look at these clouds”, I thought.
“Where in the Hell is my silver lining?”
“Where is my rainbow?”
“Why can’t I see past the rain?”
“Why”

I reached for my iphone and clicked it on. I scrolled through my favorite youtube videos until I came to one of my all time favorite songs. I love so many versions of “Somewhere Over the Rainbow”, but this one by American Idol contestant Katherine McPhee–really nails it for me (I’ve included it in my boob tube on the sidebar). I listened to it all the way through even after pulling into the parking lot and turning off the van. When it finished, I took a deep breath and headed inside. This was it…

“Please let my score be less than 17…”

“Please let my score be less than 17…”

“Please, God, please let my score be less than 17.”

I was quickly escorted to my examining room where my blood pressure was taken–98 over 70–not bad for as stressed as I was. Pulse and temperature were taken as well and then I was left to wait. Jeff didn’t come with me this time and so I checked to see if anything came through my facebook feed on Jasmine. I can’t even begin to describe the heartache I have over the choices she is making. The stress of that situation rivals the stress of cancer. The two combined render me completely useless at times. The door opened and my oncologist walked in. I have decided to like him– a little bit.

His manner is kind. He is not fluffed up and arrogant like my surgeon. He allows me to cry and always brings a box of tissues in the room with him. He explains things to me over and over again and he draws me diagrams on the white board in simple preschool fashion when my overloaded brain cannot process any more technical jargon. He goes over the reports with me and makes me copies so I can try to digest them on my own. He is knowledgeable and takes his time. However, he does at times irritate me–just little things. I have to try to overlook those things, though, because I desperately want to trust someone on my medical team. I want to feel like my life is in good hands. I want to know that I can count on him to make the best decision for my future treatment and obtain the best results possible.

He came in and smiled at me, sat down and opened up his file which was already thick with documentation on my case.

“How are you doing, today” he asked.

“Anxious”, I replied.

“Well, let’s take a look at the results…”

My heart felt like it was ready to explode. Everything seemed to be going in slow motion and in that split second I prayed one last time–“Please, God, let it be less than 17–don’t let it be a number like 72 or something”.

“It looks like you’re overall score was 16–a very good prognosis for node negative, estrogen receptor positive patients”.

My hands flew to my face as I burst into tears. I was sobbing. “Oh God, thank you. Thank you…Thank you…Thank you…Thank you…Thank you”. “I’m so happy…I’m so happy…I’m so very happy”. I looked up at my oncologist. He smiled and handed me a tissue. There was something odd about his smile, though. I didn’t want to believe I had picked up on that nuance, but I did. “Are you ok?” he asked. “Why don’t you take a minute to gather your wits” he followed with.

Have you ever been having the time of your life–perhaps cruising around with some friends in a car when you were in high school and you felt invincible. Have you ever looked up in your rear view mirror only to be staring at cherry red lights. Have you ever had the wind knocked out of you–the wind taken right out of your sails? Do you know that feeling–stomach in your throat–like the moment your car reaches the top of the rollercoaster ride and it pauses for a split second before careening down the track? That feeling for me is now labeled: dread–and I was feeling it right at that moment. I sat up straight, swallowed the last sob, gulped, and looked hard at him. He knew, too. He knew there was more news. The pregnant pause between us was broken when he said, “I don’t want you to get your hopes up just yet”.

“Here we go again. What now? NO!–NO…NO…NO…NO…NO!” I inwardly screamed at him.

He got up and walked to the white board where he proceeded to write out what he was about to say. “I want you to keep in mind the parameters for the risk groups. In terms of testing the tumor that was found during the final analysis, we know that your recurrence score is 16. This puts you in the low risk group and normally you would not need chemo. We know that you are hormone positive so it will be critical to shut down your hormone production with a drug called Tamoxifin. This is a pill and you will need to take it every day for the next five years”.

“Great–I wonder if he realizes that Jasmine was conceived because I couldn’t remember to take a pill everyday” I thought.

He went on…

“Now, there is a study that is taking place that I want you to consider. If you were 65 or older, we wouldn’t be having this conversation. I wouldn’t truly recommend chemo for you…”

“Why not?” I thought…”isn’t a woman considered a viable candidate for treatment or for getting better or for kicking this beast in the ass?” I understand that the older you are, the more inclined you are to die anyway–duh—but why would someone say that–really–it instantly pissed me off. What if I were 65? What–am I no longer eligible for treatment–I should just be written off and left to die? (This is one of those moments when I can honestly say my doctor irritated me”.

“…but your young and you still have a long life ahead of you so I want you to consider this. Now, if we just look at the likelihood of recurrence based on your score and Tamoxifin treatment–your chance of recurrence
is about 10% in the next 10 years. That’s 90% chance you won’t get anything at all. But if we add chemo. to the plan, then your chance of your cancer NOT recurring will go up to 94%.”

4%–That’s it? He’s actually asking me to consider pumping my body full of toxic chemicals for a measely 4%? If I knew I was guaranteed a life without worry or regret-then I might consider it. Was 4% like in an oncologist’s opinion a significant percentage and worth the suffering? Or is it just a matter of a few points. Is it like when you buy a house and the points that you pay can actually amount to a large amount of money? Or is it just a matter of moving the needle on the dial of the scale in your bathroom when you want to fudge the number a little bit. I wondered. I’ve never been a gambling woman. I don’t know if those odds are good or not. When it comes down to it–does it matter? Should it?

“…This study is trying to determine whether chemotherapy benefits women in your age bracket with your type of cancer and with your same situation-negative nodes and hormone positive. It is not positive whether or not chemotherapy is helpful or if it unnecessarily subjects women to treatment that may or may not improve their odds of the cancer recurring. In this study, those participating will be randomly selected for one of two groups. One will receive Tamoxifin only. The other will receive Tamoxifin and chemo. If you are willing to be a part–you will be studied for over a 20 year period. This will help future women in your situation and will be helpful in the fight against breast cancer.”

Why did he have to do that? Why did he have to play on my instinct to help someone else avoid the shit I was going through? Could he see that I might be swayed to participate? Did he know I have daughters that I will forever worry about whether or not they get this?

“What if I don’t want to participate now, but decide to do it later” I asked.

“There is only a small window of opportunity from the time of your surgery to participate. If you decide not to do it, then you won’t be included”.

“Can I say yes, and back out later?” I asked.

“Yes, but then you will be responsible for the costs of the treatment” he replied.

“What if I forgo on the chemo…and let’s say the cancer comes back…can’t we just start chemo then?” I wondered.

“There is a 10% chance of your breast cancer recurring…” he came back with.

“Does that mean it will come back in the other breast?” I said.

“No, that means your breast cancer cells–when they became invasive–may or may not be looking for a host site. With this type of cancer-it usually metastasizes to the ovaries, liver, bones, or lungs. With the ovaries or uterus, if found early enough–you could have a hysterectomy. With the others–your considered stage 4 cancer and then your chances have drastically reduced and at that point you don’t recover.” He said.

Wait–my daughter’s first daycare provider had stage 4 breast cancer. She beat it with a double radical mastecomy, complete removal of all lymph nodes and a bone marrow transplant. She was alive and kicking many years afterward–of course–I haven’t seen Nancy in years and have no clue if it ever recurred. But I do know that she wasn’t written off for dead right from get go and she was an older gal. Still, I’m getting pretty fed up with the expiration dates these doctors put on people.

I started to cry again. Only this time it was because I was right back where I started. Should I or shouldn’t I? “What in your professional opinion would you suggest?” I asked.

“Really, I could go either way. Your score just based on the tumor itself is 16 and although it is at the high end of the low risk group, I would be comfortable just putting you on Tamoxifin. In terms of the study, however, their recurrence scores differ and a 16 is actually smack dab in the middle of the intermediate range. If you were in the intermediate range without the study–there would be really no way for us to tell definitively where you score. The genetic test determines specific low risk or high risk scores but when it comes to the intermediate range–its very vague. There isn’t a way to tell whether you fall closer to the low risk or the high risk and so for that reason its hard to determine a course of treatment. You really have to decide whether you want to be aggressive with this or not.”

I listened and cried. “Will I know for sure whether or not I’ll get chemo?”

“The test is randomized and so the computer will spit out names with their grouping. You may not even be in the chemo group” he replied.

“And if I do end up there-then what?” I said.

“Then, I would prescribe a plan of 4 treatments every 3 weeks. The drugs I would use would be Taxotere and Cytoxan. There pretty potent and you would lose your hair’.

I cried even more. “I just don’t know what to do. I just don’t know what to do.”

“Are you saying you are unable to make a decision yourself?” He said.

Again, an irritating moment. Did I say I that? I said I didn’t know what to do–not I can’t make this decision at all.

“Listen, the overall news for today is favorable. At least your not in the extreme high risk group where you don’t have any options. You HAVE options. You feel like you have not had an opportunity to take control over this, but here it is. Make a choice. You control your destiny. Do you need to talk to your husband?” he stated.

I just cried quietly. I looked at the doctor with tears blurring my vision and racing down my cheeks. He gave me a few tissues. I looked at him and said, “I just want you to tell me I’m going to be ok–that I’m not going to die from this. I want you to tell me I’m going to grow old and come to know my grandchildren. I want to trust you. I WANT to trust you, but I can’t. I’m not used to placing such heavy life and death decisions into someone else’s hands. Please don’t be offended, but as nice as you seem, you are not a person I ever wanted to meet. I had heard of you and was fine with only that association. I never wanted to sit in your office and look deep in your eyes and tell you that nothing in this world matters except living to see my children grow up. I never wanted to have extensive knowledge of this disease or the treatments associated with it. I never wanted to ever need a reason to see you for myself or another friend or family member”.

He was quiet. This Greek doctor with an accent was still. Then he excused himself and left the room. He came back a few minutes later with copies of the Oncotype DX paperwork and a packet of information on the study. He asked if we could meet again on Friday morning to come to a decision. He wanted to start me on treatment one way or another and we couldn’t put this off. He sat down and quietly said, “I know you didn’t want this to happen to you and you can’t figure out what you did wrong or why this is happening to you–no one knows–yet. I understand you have been given conflicting information throughout the past couple months and you don’t want to trust anyone. But it is what it is and you need to come to a decision.”

“I just feel like a guinea pig–a laboratory rat. I just do. I just do.” I whimpered. “Why can’t we just do regular PET scans to see if and where I light up like a fire cracker. Why can’t we do that?” I asked.

“There are certain times we do these types of tests. It depends on symptoms and visible signs. If we gave these types of tests to everybody for every ache and pain, many would become victims of technology–always worried about things the doctors see or don’t see. Many of the things that we see actually turn out to be nothing. If we performed surgery or chemo for every cancer cell that glowed, we would have a lot of patients that would undergo these treatments without just cause because everyone has cancer cells in their body. It’s just that some rear up and show their ugly heads in a few–not all. You yourself feel that you’re a victim of this phenomenon based on our last appointment’s conversation. Do you want to add that much more worry on yourself?” he said.

“I just want this out of me. I just want to be done. I just want to get on with my life and not ever have to think about this ever again.” I said and with that we shook hands and I left. I was overwhelmed all over again. I stepped out into the parking lot and noticed the clouds had lifted. No rainbow though. I looked–everywhere.

My dilemma is this now:

I have 3 days to decide whether to take part in this study. I may or may not be receiving chemo. It will only increase my chance of t NOT recurring by 4%. I don’t know what to do. I know I will always worry about this now–where have those radicals landed and are they taking up residence? What ache or pain is that and what’s the underlying reason? As much as time heals wounds and may produce a better attitude from me, I know that right now the glasses I own don’t have rose colored lenses. What if it does recur and I didn’t have chemo–would I regret that decision? I don’t know what the right decision for me is. Several in the past day have said, “you’ll know what’s right for you”–but I don’t. I can’t think straight.

I’ve spent just a little bit of time researching the hormone blocking drug and also the chemo drugs. What I have read makes me even more worried. The side effects and long term ramifications. At first, I was worried about the short term effects–hair loss (I just got it done–dammit), nausea, diarrhea, fatigue, possible uterine cancer (what? again–why don’t they just give me the hysterectomy and that would kill two birds with one stone?) but then I thought–well, maybe it would kill off any bad guys still swimming through my lymphatic system. Problem is–it kills the good guys too. I also don’t want to lose my hair–at all. It grows so slowly and summer is coming up and pool season and its bad enough that I have only one boob and need to buy a special swimming suit, but now this? Yes I could wear all sorts of cute hats and scarves and Jeff could pretend that he was having an affair with a red head if I bought some wigs, but its just hair right? It will grow back–I hope.

What it comes down to is–I’m in the gray. I’m in the gloomy, gray clouds. Nothing right now is black or white. As much as I want to take control of my destiny–make a decision of chemo or not–I’m terrified of either outcome. I know that this too shall pass, but Jesus, my 25th high school reunion is next year and I wanted to look great. Now I’ll only have one boob and if I’m lucky a few tufts of hair on my head. I know this is super shallow and none of that matters, but to me it does. I don’t want to look ugly. I don’t want to do this. I feel like a small child in the middle of a temper tantrum…

‘No…no…no…no…no…I don’t wanna…I don’t wanna…I don’t wanna do dat! NO!” I want my cake and I want to eat it too! I want to be free and clear and I don’t want to go through any of this to get that result.

So, then that choice is childish and not rational and not in my overall best interest. Is voluntarily allowing a stranger to pump poison in through my veins not knowing if it is going to be beneficial or not in my best interest? I don’t know what to do. Here I have the chance to make a decision–take control (afterall, that’s what I’ve been upset about all along–not having any control) and I’m now too terrified to make the decision. How much easier it would have been to just blame the doctors. I don’t want to mess up. I don’t want to make the wrong decision. I don’t want to have chemo unnecessarily, but how do you know? How do you ever know? Is there anybody out there that has been in this place?

I just want to be done. I thought I gave enough. I gave a body part. I only have three days to decide. Somewhere…I want to find a rainbow. What would you do?

Started Tracking on 12-1-09