1 in 8

After months without posting, I dived into my blog once again this past week. The peace writing brings me along with the tinkering of widgets, layouts and uploading pictures is so meditational for me and that is huge in terms of quieting my brain. This was originally intended to be an outlet for me. A way to express myself. A way to come to terms with how my life had been flung into a different trajectory almost mid-course. It was a visual way for me to organize my thoughts, fears, dreams, hopes, goals, and somehow compartmentalize them in such a way that I could manage them all without losing my mind. Cancer has a way of doing that to a person. It is an insidious snake that wraps itself into every crevice of your being and makes you doubt everything you ever thought to be safe or predictable or comfortable.

What I found through this cyberjournaling is that I was not the only one feeling this way. I was not the only one going through this. I was not going to be the last. I made online acquaintances that stretched out their arms across thousands of miles, oceans, and continents to befriend me, to lift me up, to support me, to walk in spirit with me. I found friends near me that were willing to do the same. In this past year, I have become one of those spirit friends myself to many women both locally and far away. I have tirelessly advocated for early detection with my growing number of friends on facebook. I have reminded both the women and men in my life and those I randomly run into weekly, if not daily, to take care of their boobs. I have passed out self-check breast exam flyers to random strangers. I have done things in the name of breast cancer awareness and I have made it known to all that if you EVER feel you are having a scare, or you need information or you want to talk or you just need someone to pray for you or with you–I will be there for you.

I have had women I barely know and many I do contact me this past year. I have talked into the wee hours of the morning with strangers across the country. I have facebooked and I have messaged and I have emailed back and forth with others who are in the middle of a scare. I have begged and pleaded for everyone to get a mammogram–and to NEVER blow it off, and I have just sat and listened and cried with some who have been diagnosed. I never really thought in the beginning that I would later go on to become someone that would be a source of comfort to another that was fearing her worst nightmare coming true. I never thought that there might be a former high school enemy that would be inspired to go get checked for the first time because of me or become someone I actually appreciate now that we have grown up. I never thought that people would really read this blog. But, all those things have happened and continue to happen.

When I submitted my post a few days ago after a 5 month hiatus, I was astounded by the irony of what happened later that night. I was reminded once again that because of me putting out there the good, bad, and ugly, a woman somewhere would also be reminded that they could call me–to talk, to cry, to vent, to plan, to question, and to ask questions. I never thought I’d get a call anytime soon. But I did.

A long-time friend of mine messaged me through facebook. The urgency in her tone led me to believe that something was very wrong. This same woman began reading my blog from the onset and two weeks after I launched it about a year and a half ago, she found herself thousands of miles away going through a similar scare. She found me then on facebook and we talked and talked and talked. Her scare was just that at the time. I have learned that if you are a woman and you have a scare that is in need of biopsy or MRI imaging or you are told you have dense breasts or there are just a few “normal” looking calcifications showing up on a mammogram, you should be diligent in your self-care. My friend has done just that. However, her followup mammograms have been proving to be more questionable. Without telling many people, she went in for the suggested biopsy last week. She thought nothing of it because she had been told since that first scare she was fine. She wasn’t nervous at all.

She has just received the news. She listened to the woman over the phone tell her those words that change everyone’s life when they hear them. “You have breast cancer”. It wasn’t 24hrs. after posting my blog that here again was my friend–now facing the same form of cancer I did–DCIS–Ductal Carcinoma In Situ. I stopped everything, didn’t care if I was an hour late to a meeting, because I knew I was the person she wanted to talk to. I listened to her and I shared with her–the tears silently streaming down my face. She will be seeing her surgeon tomorrow. I am asking for prayers please.

Yesterday–I couldn’t help but feel a heartwrenching ache in my gut. I was mad. Mad that a cure hasn’t been found. Yes, early detection is the key and there are many pieces of health news always swirling around puporting to be something for you to do in order to decrease your risk of getting the disease. But ya know, I did most of those things and I still got it. Sometimes, no matter how you live your life, manage your stress, what you eat, or drink, or how much you exercise–sometimes you still get cancer. Sometimes it’s just predisposed in your genes and you don’t know when that snake will raise it’s head to strike, but it doesn’t make it any easier for me to swallow. That pill still gets lodged in my throat and it makes me really mad. My status updates since finding out have been filled with angst. Many of them reminding everyone that 1 in 8 women (or men) will be diagnosed. Let me rephrase that–1 IN EVERY 8 INDIVIDUALS WILL HEAR THE WORDS–“YOU HAVE CANCER”.

I took stock of just the people on my facebook friends list and realized that many of these women had already had scares. A few had already been through their cancers. I wondered how many more in just that list alone would have to go through that. I put out a request for everyone to stop and go through their own lists and to take a moment and pause for a prayer for each person on their list. I might seem melodramatic to some and that’s ok. I get it. They just have never had to go through what I did and there is power in prayer, I do believe that. 1 in 8. That is too large of a pill for me to swallow. I sometimes don’t know what else I can do though. I have wondered what else I was meant to do. Maybe I’m doing enough. Maybe I could do more.

Maybe we could all do more. Maybe we could all just take the blinders off and stop trying to pretend its not one of the leading killers for women. Maybe those that are scared of having the pancake masher hurt them will be reminded that having your boob CUT OFF hurts more–emotionally, psychologically, physically, etc. All I can do is put it out to the cyber world now and scream!! GO GET YOUR MAMMOGRAMS!!!!! Maybe we’ll find a cure. Maybe…Maybe…Hopefully…I do hope. For now, “L”, you are in my heart and prayers as you embark on this road. Good luck tomorrow, dearheart. I am with you in spirit.

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

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.

Heartfelt Thanks…

I am overwhelmed.  I can’t think straight.  My world seems to be spinning into outer space.  I have so much to write.  So little time.  I have so many demands on me right now, I can’t breathe.  I can’t sleep.  I can’t eat.  I have so much to say, so much to purge, so much to vomit up onto my computer screen, but the countdown is on.  I want so badly to catch up and make sense of what is happening to me and around me.  I want to wake up from this nightmare and know that this is not really happening.  But that will never happen.

What I want to do more than anything is thank everyone for all their prayers.  All the kind words, the encouraging remarks, the laughter, the hugs, the hand holding-in spirit and in person.  I have wanted to respond to each and everyone one of you that has posted comments.  If I make it out of this, I will–I promise.  I can’t tell you how much it has meant in my darkest moments to come back and know that there is goodness and kindness in this world that will come from complete strangers and those that have been there the whole way with me.  I want you all to know that I am deeply humbled and grateful to have this outlet to release my frustration, fears, newfound wisdom, and if for some reason, someone out there should find it helpful in anyway, or can relate to my story in any way, or it provokes someone out there to go get a mammogram–then it was worth the hours of writing through blurred and tear filled eyes to get my thoughts out. 

The story has continued, it is still compelling, it is still heartwrenching, it is still worth me telling.  However, my life has become filled with distractions along the way and has caused me even greater heartache.  My oldest daughter has run away from home again.  This time, I fear for good.  The subject is so intertwined with what is happening to me, I have not been able to seperate one from the other and since this was a blog about my journey with cancer, I have found it difficult to concentrate on even this because all my energy has been going to her.  It has torn my family apart, it has caused so much sorrow and I have had deep flashbacks to my childhood when my own sister ran away.  Those feelings are much a part of me all over again, and the pain is raw and real.  I force through my days right now, carrying out my cheery duties of  “Tina”, daycare provider and Mom–of a runaway, a daughter who will turn 13 (a teenager) on this Wed., March 18, 2009, and a 5 yr. old that is having trouble dealing with what is happening to his mommy.  I have a limited relationship with my husband at the moment, and have decided it was time for me to grab the life raft my pastor has thrown out to me.  I have joined a bible study, bought a new bible, and have been overwhelmed at the messages and signs that have been coming at me lately.

I have been honored this past Wednesday at our state capitol for community excellence in my profession and I could not be more thrilled to be at the top of my game in that aspect.  The price of that is taking its toll, on my family, my education, and my health, however.  I am trying, but as hard as I try, more demands keep cropping up despite my attempts to delegate them off somewhere else.  I feel as though many are just as secretly terrified that something is going to go wrong and heaven forbid I don’t get everything all done before I should kick the bucket or be incapacitated for several weeks.  My accountant is one of those people.  She got really upset when I said I would need an extension for taxes.  I just don’t have the time or energy to put into it right now.  Isn’t there a joke about how there’s only two things you are guaranteed in life–taxes, and death…well, my accountant must swear by that rule of thumb and wants to make sure I pay mine, if necessary, just in case…

I also have a class I can’t keep up with no matter how hard I try and I think I just need to withdraw instead of screwing up my GPA.  I have one teacher who is also not friendly at all and is unsympathetic to the fact that I will be having surgery or that I will be unable to do anything for about a week.  I have checked into voice recognition software, but its EXPENSIVE and I just can’t afford it, so maybe I could get a friend to type while I dictate.  More than anything, I just want to sit and write.  I need to relieve myself of this burden I’ve been carrying.  I’ve been swamped with midterms, doctor appointments, and information overload.  Even though, I pray there will be more time in the future to really lay out my chronological account of events, what it all boils down to is this…

I am having a radical mastectomy on Thursday, March, 19, 2009. 

This has all come up as of today.  I knew it was a card on the table.  I prayed someone would call the surgeon’s bluff.  I prayed I would see some hint that his poker face was just a bunch of B.S.  I was wrong. I will have the full story I hope and pray soon.  Right now, I can’t think, I am emotionally spent and physically exhausted.  This is happening.  There is no ace up my sleeve.  There is no trump card.  I can’t throw my cards in and ask for all new ones.  I have to play this hand out.  I would rather be playing strip poker in front of thousands then have to undergo this process, though.  Maybe….that is what I am doing by writing this blog, now that I think about it.  I am stripping off the layers…that have covered up all sorts of yucky character traits…in a way that would leave me exposed to thousands…of strangers as well as friends…and strangers that may become my friends.  How I wish I could explore this concept fully in my mind and round out my thoughts right now.  I am just too scared and tired to do that right now.  I just can’t believe this is happening.

I don’t know if I will be able to check in for some time.  I don’t know what will happen on Thursday.  I don’t know if  things will all go well.  I pray it does.  I am asking for you to stop and say a prayer, for me and for my family–I’m not picky–any denomination will do.  If you would all say a prayer for my daughter, Jasmine, that she may see the light and run toward it and away from those that have pulled her down;  for my daughter, Jordan, who is terrified that she will lose her mom the day after her birthday; for my little boy, Justin, that he won’t be so scared and worried that God is coming to get me; and for Jeff, that he has the strength and stamina to keep up with these kids and sees to it they are well taken care of should something happen or while I am laid up.  If I don’t ever make it back on, thanks for listening, caring, praying, loving, and thinking of me and my family.  Thanks for stopping in–for a long time, or just for a peak.  Thanks for commenting–I’ll leave my husband the password to get in–maybe words of encouragement would help them all get through what lies ahead.  And if I do make it out of this, be sure to check back, you’ll be in for one hell of a read.  You’ll never believe what has transpired in the past couple weeks while I’ve been away.  I can’t believe it myself.

I pray that God will see me through this safely and that I shall be called truly, in time, Mrs. Heald.  How prophetic that seems now, looking back.  Little did I know 20 years ago, that my husband’s name would be my biggest sign.  Its funny, I have such a low voice that whenever someone would ask me my name over the phone, they would never be able to quite catch the pronunciation.  I would have to spell it out–“H as in Harry, E as in elephant, A as in Alice, L as in Larry, and D as in David–like I was HURT but now I am HEALD”  I have actually said that thousands of times.  What a huge misguided sign that was.  I have been hurt, but I haven’t been healed–YET.  I married a man that would be all I should ever hope to become, in body, mind, and spirit.  Jeff, I love you.  Jasmine, Jordan, Justin…I love you more than you will ever know, forever and ever, with all my heart and soul…Mommy

Started Tracking on 12-1-09