I Run for Life…

It’s that time of the year. Race for the Cure. I have been looking forward to it for a year now. When I walked my first race last year, I had just undergone my first chemo treatment and the start of my second; I had suffered respiratory arrest due to the severe allergic reaction I had to the chemo drugs; and I had lost all my hair. Slowly, but surely, though, I walked that route surrounded by a sea of pink. Overwhelmed by the shear magnitude of the event (my first ever), I walked proudly with tears streaming down my cheeks and told myself I would be back again in 2010. When I crossed that finish line, I pulled my signature Superstar move and although I felt like a winner, there was a small seed of doubt. Would I make it?

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Superstar!

It has been a whirlwind year–at times moving at warp speed and at others, creeping along at a snails pace. For months now, I have looked forward to walking this race once more, crossing the finish line, and pulling my Superstar–only this time with the assured confidence that I had/have beaten this disease. Is there any doubt? Yes, a smidgeon. Enough to pull me down every once in a while, especially when I get sick and my mind starts to race through the “what if’s”. I came across a few pics from right after the race last year. Pictures I was too embarrassed by to put into my Flikr photos with the rest. When the pictures were taken, I was sitting on the front porch. Jordan came along and snapped a couple pics of me. It seems like yesterday when I think back. I was caught up in my anger then and it’s written all over my face. My eyes look sooo tired and expressionless. The worry lines had been chiselled deep into my brow by fear. My chest was non-existent and my hair–well, see for yourself.

Lost in Self-Doubt

She told me to smile. “Just Fake It”, I remember her saying. So, I tried. I really did.

“C’mon, Mom…you just Raced for a Cure…you should be happy!” I was. I smiled. I guess it wasn’t convincing enough. So, I tried again…

It was no use. That earlier feeling of euphoria while walking had been replaced with the weight of the world. I attempted one last try at a decent picture–one full of hope and determination–hell my before and during pictures in my Flikr photos are absolutely night and day compare to just a few hours later. (click on “more photos” in the sidebar to view last year’s 2009 Race for the Cure pics), but it just falls short.

I remember thinking how badly I needed a nap. Right after the race last year I worked at the Arsenal for several hours and then went on to piano lessons. When those pics were taken, I was exhausted and you can see it in my eyes. For the most part, these days, my head is in a completely different place than it was a year ago. Thank God.

I really wanted to go this year. I planned on going. I was all set to assemble Team Superstar and proudly walk with my fellow sisters. Then, I got a call, from someone that gave me some news. Nothing bad, in fact, very humbling news. I am being awarded something (I can’t say anything more until afterward). My presence was being requested in Iowa City to accept the award–on the same day. Of course, I felt honored, and after the surprise of the call began to wear off, I realized the event was on this Saturday, June 12, 2010–the same day as our local Race for the Cure. I wondered if I could actually swing both, but it really didn’t take long to make up my mind. I would probably only get this honor once in my life and the race will be here next year. So, I’m going to Iowa City on Saturday. My family will meet me up there to video. I’ll upload over the weekend so you can all share in the news.

For all those planning to walk or run in this year’s Race for the Cure–do me a favor and keep me in mind–even scribble my name into a corner of your memorial badge if you feel inclined to do so. I’ll be there walking in spirit and to show my support–I dyed my hair this past week–platinum with fuschia tips in the back. It has been cut in a way that shows off the tattoo I got last year, and as I promised, I will be going back really soon to have the word “Survivor” added underneath.

Showing My Support

I also found a video this past year that has gives me the chills each time I hear it. I have made the song my ringtone on my cell phone and I thought I’d share it here for all of you to enjoy as well. For all my sisters who are fighting this fight, have won their fight or have lost their fight, I will be running for you…soon.

Race For the Cure

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Throughout this past year, with all the ups and downs and major family crisis, there is one event that really sticks out in my mind–a moment where we ALL came together (including Jasmine)–The Race For the Cure. I am going to be completely honest here, I had always heard of it, but had never participated before. I had always read about it in the paper, but had never witnessed it. I had always seen news clips of our local race, but I had never been touched personally by breast cancer up until this year. I take that back, as I’ve stated before in my post Strapped In Tight , my oldest daughter’s daycare provider was affected by the disease and yet, after she got remarried and moved, we lost touch. We weren’t thinking about it daily anymore and therefore, details and extra curricular activities once again busied our lives.

I have spent a great deal of time flip-flopping between being on the outside looking in (even though I was very “IN”) or “owning it”. I have said openly–“I DON’T WANT TO BELONG TO THIS CLUB”! I don’t. A big part of me really just doesn’t want to ever have to worry about cancer, statistics, prosthesis, chemotherapy, metastasis, reconstruction, wigs, mastectomy swimwear, etc. etc. etc. It’s like this…when you are pregnant for the first time, you are hyper tuned to all the strollers you see passing you in the mall, all the laughter of a preschooler playing in a park, a toddler crying for a piece of candy in the checkout lanes of the grocery store, or a baby and its mother conveying their love for each other through their eyes. If you aren’t pregnant or trying to conceive, you are busy with many other routines of life. Same goes for cancer. I am now, on alert when I read things in the newspaper regarding cancer treatments. I am more aware of (young and old alike) women that have lost their hair and whether they are wearing a head covering of some sort. I am more aware of the anguish some women are feeling as they are sitting in the Center for Breast Health. I know what they are feeling now. I have been there. I have walked a mile in their shoes. I have deep compassion and respect for these individuals who are facing their own mortality.

So, it goes without too much saying that when all the buzz about our local Susan G. Komen’s Race For the Cure was getting underway, that I found myself drawn to signing up. What an experience that was! I couldn’t believe how many people were at the sign up. I couldn’t believe how much pink was being proudly worn. I couldn’t believe how huge this was. The signup happened on a weekday and since I provide childcare during the day, I thought I’d just take them down with me–no big deal–we’d sign up–they would be my sign up supporters and we’d high five a good job done for Tina and we’d go grab a pizza somewhere. Little did I know that it would turn into a huge nightmare.

It was COLD and windy that day. The parking lot was jam packed and we had to park all the way to the back of the lot and run up. Once inside the convention center, I had to navigate through lines of women all the while continuously counting heads even though the kids are all knowledgeable about the rules I have while in public–hands on the stroller at all times, listen carefully for instructions, etc. We made it to the line where the applicants who hadn’t pre-registered were asked to stand. I waited approximately 20 minutes only to get to the front of the line when I remembered I left my debit card in the van. We turned around and headed back out into the cold to retrieve it. Once we returned the line had grown. We waited again for approximately another 30 minutes and once I reached the head of the row, the lady explained that they do not accept debit cards. I couldn’t believe it. I was so angry! She knew that was what I was going to get. It was the same lady. She heard me! Couldn’t she have told me then and saved me the trouble? Yes–but she didn’t. I turned everyone around and out we went to the van yet again. I loaded all the children, the double stroller and away we went looking for an ATM.

We ended up at a bank and after getting the exact amount of money we would need–plus a little extra to spend at the mini pink ribbon store that was there–we went back for a third time to the convention center. Pulling into the parking lot, I pulled out the snacks and had everyone finish up those before going in. I knew if I attempted it again, I would ultimately hear, “I’m hungry”. So, I crossed that one off the chesklist, first, and made my way through the throngs of women who were now standing in long lines. I found the same lady’s line that I had already stood in twice before. I know, you’re all probably wondering why I chose her again, afterall, she had already failed to give me pertinent information that would have made my life easier given the fact that I was trying to get through this process with 6 children by my side. It was a matter of principle at that point. I was going to prove to her that I was not easily deterred. That I was determined to sign up for this event–and really, if I left now without signing up after going through all the hassle, I would have been more mad at myself!

I thought that if we went and looked through the store, killed some time while picking out some bumper stickers, the lines would diminish some. I kept my eyes on their status and when I realized they were only getting longer, I figured I better go and grab a place. As we stood there, we played Simon Says and amused all the women around us. We also played I Spy until I was sick of it. I was getting hot and so were the kids. I started to peel coats off and pray the line would move faster. I finally get to the front after another 40 minutes only to have her smile sickeningly at me and ask me where all the registration forms were. That was it! I was about to blow and I knew I couldn’t because I’d have 6 children watching me. It’s moments like these when you know they are watching you. This is a teachable moment in patience, tolerance, and keeping my mouth shut firmly. I tried. I really did. I couldn’t help it, though and so I leaned over the table and got very close to her and as I smiled sweetly to her I told her through clenched teeth that this was my first time here. I had no knowledge of the process, the order to get that process done, or that I needed to bring cash or check. I told her that it was her duty as a volunteer to be trained adequately so that when someone shows up and looks lost, they are given ALL the information they need to produce the items necessary to register”. I then asked her where in the hell are the forms. She pointed to the back of the line where a table was set up. AAAAGGGGHHHH!!!!!!!!

“Calm Down”, I told myself. “Breathe”. So, I did. The sound in the convention center was becoming deafening with all the chatter and women’s laughter. I was totally over stimulated. The kids, although satiated for the time being, were bored. What was supposed to take me 15 minutes had now taken me over two hours and I was still no closer to getting my race badges. Here is where the crucial mistake was made. Recall, I had given the children snacks in the van? What goes in must come out, right? Yeah–I never thought about that in all my frustration. So, after spending 10 minutes filling out all the information on front and back of 5 forms and standing in line for another 20 minutes, I hear that familiar sound, “Tiiinnnnaaa–I have to go potty!!!!!” That prompted the next one to grab themselves and start dancing–and the next one and the next one–etc. etc. etc. I looked at the front of the line–I was second in line. The women all behind me were secretly happy. I could tell. They were tired of listening to the umpteenth repetition of “Here We Go Round the Mulberry Bush”. “Can you hold it just a little longer?” I begged. “NOOOOOO! They all cried”. I should have pottied them when we were filling out the registrations. Hindsight. Crap. “I give up”, I dismally said out loud.

I took them all to the potty but the women’s line was out the door. Double crap. I can’t go in the men’s bathroom, especially with a double stroller so, I am going to let the 4 preschool boys go in as a buddy system and I would be standing right at the door listening for them. The first sign of trouble, I was coming in. Note to self: Never let 4 boys go into a public restroom with urinals hanging from the wall because 1.) they are not preschool sized or hung at a preschool height; 2). They can’t reach the sinks or the soap hanging from the wall; and 3.) the toilets are usually plugged and not flushed and no one will want to go. I could hear the laughter. I knew something was going on. It was just a matter of time, really. They all were bored and it was more fun to be playing in a big boys bathroom then to stand in a line waiting to be helped. I asked a man coming out how it was going in there. He was in there and I know not only had he heard me, but many, many women all around me heard the ongoing conversations I was having loudly with the boys. The man told me they were the only ones in there–noone else if I needed to go in and check on them. I thanked him and started maneuvering the stroller into the narrow opening.

What I saw was comical to say the least. On the one hand, it completely helped break the tension that had been building in me from our disastrous morning and on the other showed me how ingenuitive these boys really were. There they were–still buddied–only not hand in hand as I sent them in there. They had collectively figured out a way to use the urinals so they could all have a chance of peeing on the blue urinal cake. One buddy hoisted his partner up by holding onto his legs. Boy being hoisted was leaning with both hands on the wall on either side of the urinal and the forward lean was helping point the arc in the correct downward spiral. Once done, they switched spots and the hoisters now became the urinators. I do wish I could have taken a picture of that–although highly inappropriate–it was hysterical. My boy was heard throughout the immediate vicinity to say very loudly–“Just don’t pee in my mouth–ok?” I laughed and helped the boys all up to wash hands. I congratulated them on their use of logistical thinking skills and their cooperative teamwork, but asked them kindly to just use the normal potty from now on–even if it means you have to pee on someone’s poo (that was the overwhelming concern they all voiced).

As we emerged from the men’s room, I realized how odd that statement probably sounded coming from my son for those who had not witnessed what was going on. I couldn’t help but openly smile. I re-entered the line to register with all my applications and noticed the lady I had dealt with was now gone. “Probably out to lunch”, I thought. The lines were starting to dwindle and as I approached the front and got all the applications turned in and paid for, I mentioned to the lady as briefly as I could how unprofessional I felt the woman she replaced was. She asked me if the woman had shown or pointed to where the ATM machines were located there within the facility. I was horrified and speachless and as I turned around and looked down a dark corridor, I saw it. AAAAGGGGHHH!!! I turned and told her “Absolutely Not”. She shook her head and apologized. She finished up and told me to take my badges over to the T-shirt table to pick up our groups shirts. I thanked her and headed over there hoping we were close to being done. It was there that the gentleman helping me shorted me one shirt. He swore he had only received 4 vouchers. I swore I gave him 5. He went back through a giant stack of vouchers and began to check. I looked to see if I had dropped one somewhere. Then I saw it. One application that had gotten shoved down by the coats in the cargo bin of the stroller while I was in the restroom with the boys. It was Jasmine’s application. Triple Crap.

You know what that meant. I had to return to line to pay for hers and get her voucher. At that point I was wondering if I should just forget about it. I mean, she was, at that time, MIA and Lord knows when she was going to be back. I went with my gut and decided to wear her badge along with mine should she not show up. Knowing that if she were in her RIGHT mind, she would not miss this and if she did, she would walk in spirit with me. When I got to the front, the first lady was back. I glared at her. She asked me for the money and I handed it over. She said I was $5 dollars short. WHAT??!!!!! I was FURIOUS!!! I had no more money, time, or patience left. I began to replay the events of my entire morning to her including the part where she failed to tell me there was an ATM ON SITE!! Her supervisor came over and it was waived. I was not trying to get out of donating to a worthy cause, mind you, I had spent upwards of $100 that day and knew I would spend more at the race as I perused the vendors, so it’s not like the organization wasn’t going to be making any money off of me, that’s for sure. I snatched the voucher out of her hand, marched over to the T-shirt table and had the man bag up all my shirts. I was relieved to be done, finally. The kids were relieved to be done, finally. Finally, we were going home.

We left the center and it was so nice to hear the quietness of that cold morning. We went to the van, loaded everyone up, loaded the stroller, and began to exit the parking lot. QUADRUPLE CRAP!!!! This sickening feeling washed over me as I looked in between the seats for the bag of shirts. “Oh God, please tell me I didn’t forget them all in there!” I kept muttering “Please, Please, Please” as I pulled over to check the cargo bin of the stroller. Not there. I looked up at the convention center and realized I had to make one more trip inside. I was about to say “Forget It” and take off without them, but I had paid for them. I wanted my family to all wear theirs with me. I pulled back into the parking lot and for the last time, I unloaded all the kids and walked into the center. Now–I just hope someone hasn’t stolen them. We waded through the sea of women and came to the table. There, all bagged up and sitting on top a pile of t-shirts were mine. I opened the bag, counted the shirts, made sure the sizes were all right, and left for the last time.

This would be my first Race For the Cure. I prayed that my children would walk it every year in memory of me and not because they had been affected themselves by the disease. I prayed that I would be a more willing participant of the “Club” once I could see visually how many people are affected by breast cancer. I prayed Jasmine would come home. I prayed that I would have the strength of an army to get through the rest of this year. I was just happy I had made it out of the damn convention center without killing someone!

The morning of, it was chilly and rainy. Not bad, very spitting conditions, yet not my ideal forcast for my first race. We didn’t let it get to us. We donned our shirts, our race badges, and peeled Jasmine out of bed–she had made it. I’m not sure how with us she really was, but she was physically there and she was willing to participate–so that spoke volumes to me at least. I was overwhelmed and found my eyes tearing up on more than one occassion. I had never seen so many people! I even knew some of them–more members of this club of women–some I had even remembered seeing in the Center for Breast Health’s waiting rooms. We walked that day–all 5 of us. Jasmine pretty much walked ahead of us and at times I wondered if she were looking for an escape route somewhere along the way. We posed for pictures and I secretly wondered if I would be around for next year’s. I began to notice the little patch on the survivor caps that delineated how many years cancer free they had been.

I didn’t wear a wig and I was trying to own my baldness on that day. I had a baseball cap and a smile and my family. That was all that mattered to me. We walked the long route. We saw all sorts of crazy and funny things from t-shirts to dogs decked out in pink ribbons and booties. We saw memorials emblazoned across the backs of countless idividuals walking for loved ones they had lost or were battling their dragons. It’s hard to explain, but the whole time I walked, I had a lump in my throat. It was hard to swallow. Just as it is hard to swallow the fact that 1 in 8 women will be diagnosed. Seeing that many women walking, and watching more intently to the chatter on Twitter regarding similar walks all around the country has prompted me to really think that statistic is not correct. “It just has to be lower than that”, I kept saying to myself as we walked.

One of my all time favorite movies is Superstar featuring Mary Katherine Gallagher, a clumsy parochial student who is just looking for acceptance. She always strikes a pose and cries, “Superstar” as an affirmation to her awesome-ness. When I passed the finish line I pulled my signature Superstar move. Everyone there laughed and cheered! The news crew came down and asked me to give my name so they could give a shout out to me on the radio. I told them I was Christina Heald, 3 month survivor so far, and I was a Superstar!

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Superstar!

Moral of the story: Always pre-register for the damn race!!!

How the Hell am I Supposed to Know?

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

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

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

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

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

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

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

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

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

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

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

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

HOW THE HELL AM I SUPPOSED TO KNOW…

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

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

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

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

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

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

and then I thought…

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

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

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

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

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

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

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

HOW THE HELL AM I SUPPOSED TO KNOW?

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

I’m thinking…..”DUH”

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

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

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

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

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

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

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

HOW THE HELL AM I SUPPOSED TO KNOW?

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

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

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

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

Again, I wanted to say to him…”Duh”.

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

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

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

Dr: “I can’t”

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

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

HOW THE HELL AM I SUPPOSED TO KNOW?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dr: “You’ll know.”

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

Dr.: “You’ll feel it.”

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

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

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

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

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

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

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

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

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

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

HOW THE HELL AM I SUPPOSED TO KNOW.

What Would You Do…

April 20, 2009

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

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

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

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

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

“Please let my score be less than 17…”

“Please let my score be less than 17…”

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

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

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

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

“How are you doing, today” he asked.

“Anxious”, I replied.

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

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

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

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

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

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

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

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

He went on…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My dilemma is this now:

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

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

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

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

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

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

Started Tracking on 12-1-09