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?

Advertisements

Started Tracking on 12-1-09

KVphotobug

It's about the lens.

GreatBigBeautifulTomorrow

Just a nerdy History major and Cosmetologist with a love of all things vintage and a passion for books

bodyandsoulnourishmentblog

Welcome to my site to find inspiration and nourishment for the body and soul

my alaskan odyssey

when you don't know where you're going, any road will take you there.

Go Circa Mundi

Every Exit is an Entry

andymcoaching

Canoe, kayak and paddleboard coaching for the aspiring paddlesport enthusiast

A wee walk

brian and martina's outdoor hiking blog

Exit Booted

a travel blog by tokyoaaron

The Paddler ezine

Magazine for white water, sea and expedition kayaking and canoeing paddlers

Kayakwriter's Blog

Writing and photography on the outdoors, sea kayaking, camping and dogs.

souzzchef

Adventures in food, travel, and backcountry kitchens

The Impatient Traveler

Impatiently awaiting the next adventure

travailsonatandemwithboo

Father and daughter cycling duo swapping pedals for paddles to kayak the length of the longest lakes of Wales, England and Scotland.

from victory road

a journey of faith, art, and life

Ticket to Adventures

Travel blog from around the world, near and far.

The Wallflower Wanderer

The true adventures of a timid world traveler

%d bloggers like this: