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!

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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

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