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.

A Work In Progress

“Get your shoes on–you need to come with me” I stated matter of factly as I walked in the house. My husband, who was playing the new Tiger Woods WII golf game I gave him for Father’s Day looked up and wondered what was going on. I moved directly toward the cupboard above the kitchen sink where I kept all my meds and as I opened the door, I knew exactly what I was going to need–Vicadin and Ibuprofen–And a lot of it. I figured with what I was about to do, I needed to get a jumpstart on curbing the pain factor.

I have never been a big “taker” of things. I am a lightweight. I admit it. I never liked that feeling of the room spinning, dry heaving from drinking too much, or the next day’s hangover. I hated not being in control–(there we go again). However, after my mastectomy, I found that my pain tolerance was off the charts. I was also in extreme emotional distress and I was very glad for those pills which helped keep me out of it for two weeks straight. I had a few Vicadin pills left over from my mastectomy and decided I was going to take advantage of them on this evening. I popped two of them and 4 Ibuprofen, grabbed my debit card, my camera, my hubby and away we went.

I wasn’t nervous at all as we drove. Jeff asked, “what’s going on?”.

I simply stated, “I’m going to get a tattoo”. He couldn’t believe it. Me. The pain wimp.

“You’re joking, right?” he said.

“Nope”, I replied.

“Where are you putting it?” he came back with.

“On the nape of my neck”, I said.

“Geez, that’s gonna hurt like Hell. I’ve heard that’s a really painful place to put it”, Jeff said.

“I’m not worried about it.” I smiled.

“You’re never gonna go through with it”, he looked at me smirking.

“Watch me”, I retorted.

We drove into the parking lot of the Scorpion’s Den, a local tattoo parlor. Ironically, the building that houses the business actually used to be my husband’s late grandmother’s house. He can remember playing in the house when he was a little boy. He was amazed at the changes and began to talk to the owner about which room used to be used for what. The owner asked him to bring in a picture of the house or the rooms and he was very interested in framing them and hanging them in his business.

While the men were talking, I went over to the scariest looking guy there that night. I struck up a conversation with him and showed him on the computer the image I wanted. As he sized up the image and traced it out on the transfer paper, I took a few minutes to look through some of the artwork. I couldn’t believe I was about to do this. I had always been against tattoos–personally. I am all for freedom of expression and didn’t care what anyone else did, but for me–it wasn’t a statement I wanted to make. I had never felt like “owning” anything like that before, but what that girl said to me in the wig boutique changed my mind. I was also beginning to think that maybe, just maybe, I had grown up a little too much. Its hard for me to explain because anyone that knows me–knows I live in a kid’s wonderland–literally. I play with kids, teach kids, hang with kids, laugh with kids, chase kids, swing with kids, paint with kids, etc. How could I be ‘too’ grown up?

Since I am entrusted with kids each day, I maintain a very high quality childcare in my home–one of the top in Scott County, IA. Since my business is kids, I’m not just asked to play with the kids, I am also obligated to teach them and to guide them in making good choices. I have to be an example to them–a good role model. So, in almost 14 years of providing care and having a ball doing it–had I essentially grown up and forgotten what it was like to really just have fun and let loose–lose control–personally–on a leisurely level? Maybe if I did drink a small glass of wine each evening I wouldn’t be wound so tight. Maybe if I made it a point to spend time laughing with girlfriends instead of pouring myself into my classes I would remember how it feels to loosen up. Maybe if I just went and got a tattoo, I could say to myself that I hadn’t forgotten the rebel inside of me.

There were a few other justifications, as well, for getting the tattoo.

1. It was a symbolic outward representation of the disease I was fighting.

2. It was a daily reminder that I needed to live life fully because we never know what is going to be thrown in our path.

3. It was my acceptance into the club–the one I had been fighting against for months. My VIP stamp of sorts that bound me to other women that had gone before me and would come after me.

4. It was going to be in a place that would be out of sight when my hair grew back so it wouldn’t be a nuisance should I ever be interviewed for something that might affect future endeavors.

5. The place I was going to put it–ahhh–the nape of the neck–during chemo–while I was bald or my hair was very short–it would serve as a sort of spiteful gesture to those that would look at me and question or whisper behind my back why I looked the way I did. Yes, this one is completely childish, but it also gives me the biggest laugh. It was a fact–I was going to lose my hair–something I was fiendishly upset about. The kicker–I would lose it right at the start of this summer’s pool season. I had counted up the days on the calendar. I had circled the day the pool opened. It was always circled each year–my family lives for that day. The thought that I was going to be a uniboob mom this summer was excruciating enough but to think I would also be bald was enough to leave me sobbing for days on end. I pictured in my mind people at the pool looking at me from the front and averting their eyes, or staring disgustingly at me. I pictured them pointing and whispering to their friends to look at me.

I also pictured turning around so they could see a large pink ribbon tattooed to the back of my neck and without having to turn around to see their expressions, I could see their faces melt into sorrow and then they would feel bad for pointing and staring or laughing at me. They would get it. Instant guilt trip. I win. 🙂 My childish mind had come up with the perfect solution to combat what was about to be my toughest summer on record and I loved the idea!

6. I knew that things were aligned perfectly for me to get the tattoo on that day. In two days, I would be sitting in my new dentist’s chair as he put me under for my root canal and to also fix the 5 cavities. I knew I would go home from that with a lot of antibiotics and so if the tattoo should become infected over the course of 48 hours, I would have enough penicillin to help put that back into submission. I also knew the antibiotics would help everything heal faster and so–if ever there was a time to get a tattoo–today was the day.

7. Most importantly, my chemo was going to start that upcoming Thursday. In 5 days I would be sitting in a chair while poison was being infused throughout my body. I knew my oncologist would not allow me to have a tattoo after I started treatment. My white cells would be shot from the drugs and if I developed an infection from the tattoo, then I would be in big trouble. So, it was now or never.

8. Last, but not least, I had been told that if I would ever consider a reconstruction, the new boob would have the areola tattooed on. That’s how they do it. Wow. I never knew that. I decided I certainly didn’t want my first tattoo to be that of a nipple!

When it was time to go back to my room with Jesse, I gave my hubby the camera and told him to take a ton of pictures. I wanted to remember this rite of passage. I never wanted to forget this moment in my life. I felt like it was a very visual way of me “owning it” and that it was also a way of me being able to move forward. Jesse’s appearance complete with tattoes and body piercings didn’t scare me. I was a bartender for 15 years and I was able to comfortably joke around with him. I think that surprised him from the woman he probably mistook for being conservative and sheltered.

We talked about the ribbon itself. I told him I didn’t want it to look perfect. I didn’t want it to have clean lines or neatly trimmed edges. I wanted it to look “Torn and Tattered”, “Worn and Weary”, and I also wanted it to look like a “Work in Progress”–because that’s exactly how I felt. I told him, “I’m a Work in Progress” also and I hoped someday in the future, when I truly feel in my heart that I have beaten this cancer that I would come back and write the word “Survivor” underneath the ribbon. Jesse looked at me and said, “Awesome”.

He shaved the back of my neck, placed the transfer on it, and gave me a mirror to check it out. I was so excited. He showed me where to sit and he went to work. With my head bent forward over a cushion I joked with him about life while Jeff captured it all on film. I listened to the buzzing of his tool and could feel the oddest sensations–some of which were slightly painful, but tolerable. I could visualize how he was outlining the ribbon and where he was filling it in. I could feel him going over certain areas repeatedly for extra shading. I could feel him trail off the ends of my ribbon to make them look frayed. It was so meditative for me and I won’t lie–I was so glad I took those Vicadin beforehand!

I knew we were getting to the end and I was glad because I was beginning to grit my teeth each time he rounded over the top of the ribbon. I was also making a low, gutteral sound each time the vibrating needle came close to the base of my skull. You know what it feels like if you put a massager on the top of your head? That’s what it felt like in a weird way only with pain involved. The vibrations from his needle would come up the back of my skull and travel all the way across the top. I couldn’t help but think what it must feel like for some people who get their whole skull tattooed–wait–I don’t want to know about that–I was ready to be done. And just like that–we were. I stood up and looked at it in the mirror. I couldn’t believe it. Jeff came and told me, “Good Job” and gave me a quick kiss. I was in awe. I loved it. I absolutely loved it. It was a part of me now. There was no escaping it. I was branded for life.

A Work In Progress

A Work In Progress

There are new pics over in Flickr Photos. I spent way too long trying to get them in chronological order–it just wouldn’t work. They are going from last to first?? Click on more pictures and you’ll see the album sitting to the right–that is in order. I am letting go of it so I can move forward. Enjoy.

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.

Started Tracking on 12-1-09