Full Moon Rising…

Full Moon Rising

I’m in the middle of working on 2008 AND 2009 taxes–ugh. A bazillion receipts that need to be poured over and a mountain of 2009 medical bills is now growing exponentially and is beginning to resemble a full-scale replica of Mt. Kilamanjaro. I hate doing this. I have software programs that should simplify this part of my life and great paper systems that claim to do the same thing, but what I want to do is anything but taxes so, I put it off. I absolutely hate bean counting. It takes me forever to catch up and granted, it’s my fault I’m now in a state of freak out, but I’ll get it done somehow–I’ll just be a lot more worse for wear over the next couple weeks. Hopefully I’ll make some headway soon and this mountain of paper will get under control in time for the holidays or at least by the time Jasmine comes home. Yep, you heard me…she’s coming home…soon.

As thrilled as I am, I am extremely nervous. I don’t want for old habits to rise back up to the surface, but I have to pray that she has learned a great deal of coping skills and she will rise above all the triggers that she will be faced with daily. We had the pleasure of spending our Thanksgiving with her while she earned a 4-day pass. It was filled with love, laughter, good food, and family–just what Thanksgivings are about.

Together for Thanksgiving '09

It was our biggest blessing–to see her alive and doing well and clean and sober and genuinely happy to be with us. That blessing could only compare to our family’s other biggest blessing–me–and the fact that I am still alive 10 months after being diagnosed with breast cancer. We built fires and roasted marshmallows. We stayed up all night long and watched movies. We laughed until we cried, lost our voices, and acted completely crazy as Jasmine joined Jordan and I on our psycho shopping sprees where we waited for hours in the freezing weather just to be pushed and shoved through the stores and become so discombobulated that we were standing in the wrong lines to check out more than once. She had never shared in the Black Friday tradition before and was absolutely shocked to see the chaos.

She wanted to surprise everyone for Thanksgiving dinner and so we dropped her off a block away from Jeff’s sister’s house and as we all loaded into the house without her, she snuck up several minutes later and burst in on the crowd. Tears flowed, cameras flashed and a young girl was reminded while she was sober how much she was loved. She met up with an on again off again boy who proceeded to stay with us over the course of the next few days. He’s leaving for the navy boot camp in just a few days and I knew they both wanted to see each other. I was reminded watching the two of them that out of all the boyfriends she’s ever had–I liked him the most. I also liked the fact that when he messed up he took my motherly bitching and came back apologetic and sincere. No matter what went down between them or whose fault it was–I couldn’t help but think I’d be pretty lucky to someday have a son-in-law that nice and down to earth. They are both still young and I don’t expect anything, but I can dream and I can always hope that whoever my daughter is lucky enough to find–will treat her with as much loving kindness as Dylan has. He was also instrumental in helping me find her in Ohio after she had been taken. That alone, in my book, earns him oodles of brownie points.

Jasmine & Dylan Thanksgiving Eve '09

Jasmine made it a point to find meetings near here that will help keep her on track and we set up necessary services that will help her deal with her lifelong struggles that she will face. Before we knew it, the 3 full days flew by and it was time for another day long trip in the car to get her back. She’s been doing well and pulling straight A’s once again, but I do worry that when she comes home, it won’t be as easy for her to stay focused. I guess all I can do is pray about it. If all goes well, she’ll finish up one more class–hopefully two–and then be able to come home in time for Christmas.

Jordan, Jasmine, and I loaded up the car last Sunday and we set out (late) across the state. We went out to eat for breakfast with Jeff and Justin beforehand so we wouldn’t have to worry about eating junk food the whole way out. What usually takes us between 5.5 and 6 hrs. took us almost 7.5 just to get across the state. We followed every holiday traveller out of Iowa in bumper to bumper traffic–both lanes–never making it over 60mph. Torturous for speed demons like me. I kept reminding myself that patience is a virtue and I needed to channel all the patience I endure daily with the children I work with every day. Easier said than done when your in that much traffic.

We stopped by a rest stop for a break and Jasmine came out looking for a woman that had left her purse on the back of the toilet. I saw the woman came out and thought, “cute haircut” when I saw her and then she left quickly. We peeked inside the purse and found her phone. Going through her contacts we found a Steve and called him to explain everything to him. He was able to contact her and her sons so they were able to turn around and come back for her purse. It was an expensive Kate Spade purse and it was filled with cash and expensive perfume and credit cards. It would have been so easy for someone to steal it and go shopping. I was so proud of my daughter wanting to do the right thing. We agreed to wait and I told her that this woman was so lucky it was us and not some crook.

When the woman showed up in her fancy Lexus SUV she got out and was totally snobbish. She wasn’t overly appreciative and she didn’t even offer Jasmine $5 for returning it. I know we did the right thing, and yes we did it for that reason and not for any monetary reward–but let’s be honest–some munchie money for the trip would have been nice. We were travelling in comfortable clothes and she sized us up and down and figured we were below her class and couldn’t be bothered with us. I could read it all in her eyes. I just hate snobs. This setback cost us another 45 min. and I just had to tell myself and the girls that it was 45 min. more we had with each other that day and it was a test to see if Jasmine would do the right thing. She passed.

Working our way westward, I knew that I had one more stop in store for us. There is a tower that sits on top of a scenic overlook along I-680W in Iowa close to the I-29N exit. I’ve always wanted to stop each time we have gone to visit, but the first couple times I missed the exit. Each time after that, Jeff was with and driving and couldn’t be bothered with such trivial memory makers. On this day, though, I was in charge. We arrived just as the sun was setting. The air was crisp and cold and even though we weren’t going to stay long, I wanted to take the girls up. I wanted them to look out over a very large area and see where states of Iowa, Nebraska, and South Dakota converge. I secretly hoped that as Jasmine and Jordan looked out across the countryside that they would see that the keys to their success are in her hands. I wanted Jasmine to see that her possibilities were endless and that she was lucky to be alive after what happened to her this summer. I hoped that she would see that her destiny was out there in this world and that with God’s grace she would find her way.

The back of the tower appears dark because of the setting sun.

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The front of the tower was illuminated with deep golds and just beyond the tower, I saw a full moon rising pictured above).

When I saw my daughters up on top of that tower–I couldn’t help but think quickly over the past year about how far each of us had come.

Jasmine looks out

Jordan joins her sister at the top

Holding on for dear life

We had all battled demons and even though we weren’t completely free of their grips, we were still standing. We were still surviving. We were still breathing. I joined my girls at the top of the tower and looked out. I needed to practice what I preached and I needed to grab onto life again–a life I never imagined would turn out the way it had, but never-the-less still grateful to be alive to see my children grow.

The air was biting and the wind caused my stomach to flip flop. I looked out over the meandering interstate that had carried my family members back and forth for months as we visited our very ill daughter over 6 hours away.

I-29N

I-680W

I never knew what the end of this part of the journey would look like, but with a crimson sky I couldn’t help but think it was amazing and better yet, it was almost finished. I looked at my girls and told them I loved them and then we took a picture of all of us.

Freezing our butts off

A gust came whipping through the tower and scared all of us. I began to descend but got really scared and had to sit down and scooch down on my butt while my daughters laughed at their “chicken” mom.

Me--realizing how I hate heights

Stop laughing at me!

With the last burst of sunshine, I took a little video of my girls playing. When I see the opening picture of the video–before I even click play, I am reminded that they are still little girls. In the grand scheme of life and for how fast they are trying to get on with their lives or grow up before they are ready–it just reminds me that right now, this very instant, whether they like it or not–they are still little. It also reminds me of a more peaceful time in our lives. A time without the drama and crisis and heartache and devastating health issues that plagued our family this year. I can see my LITTLE girls in this picture–I can see the glimmer of hope that tomorrow holds limitless possibilities. The video is just pure silliness–and also gave me a shot of my second full moon that day.

This parting shot of Jasmine with me is priceless. I don’t think I’ll ever forget how hard she was pulling me toward her. I won’t forget her telling me sincerely and unsolicited–“I Love You”–over and over–something I hadn’t heard in years. I was glad that Jordan took the picture. I’ll treasure the moment always.

I Love You, Mom!

Jordan slept almost all the way home and the trip back was easy and much quicker–5.10 hrs. to be exact. I had never made the trip that quickly. There was noone on the road for miles and miles as I’m sure everyone was already home and tucked into bed awaiting work the next morning. I drove home listening to Christmas carols and thanking God for letting me live so that I may see to it that Jasmine would get the help she needed. I thanked him for not taking her home before me (at least this past summer this summer). I prayed for no more whammies. I told him that I thought I had managed the year as best I could and that I truly believed that I needed a break. I also wondered what lied in store for me and my family this next year.

Honestly, I need things to look up in 2010. I need time without crisis so that I can try to rebuild my faith, my relationship with my daughter and all of my family for that matter, my finances, my businesses, my educational aspirations, my professional endeavors, etc. As bleak as it looked several times this year I know I’m not ready to throw in the towel yet. I’m just ready to start snapping it again. –Watch out!

Formal shoutout to Dylan here–God bless you and keep you safe. Don’t forget our address and when you get out of boot camp–make sure to call. You are loved and you will be in our prayers.

P.S. I took my own advice and re-registered for the upcoming spring semester. I am going to re-take the two classes I let go. I couldn’t focus last year with the bombarding information coming at me and I also reached a point where I felt I’d rather be spending time with my family instead of having my nose in a book all the time. I was worried I was going to die and I worried about it all the time. I no longer think that way. I believe I’m going to be around here for a while and I may as well get my degree finished. I just won’t try to attain it at warp speed. Third reason–my scholarship people are getting ancy for me to fulfill my contract. I really don’t want to pay back all of the thousands they’ve given me because I’m in breach of my contract with them. I’ve hashed out an extension plan with the TEACH program and I am grateful they are understanding and accommodating to my requests. Now if I could just peel myself away from all the reality TV I’ve become addicted to…:)

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R.I.P. Cheyenne

Cheyenne Heald

Cheyenne Heald

My family is grieving something aweful today. We had to put our family pet to sleep yesterday. She was part of our family for close to 12 years. She was approximately 13 years. old. This photo was taken in our backyard yesterday just a few hours before she passed away. She was deeply loved and will be terribly missed. I may post more to this later, but for now–I’m just too sad. Seeing my children’s faces and holding them as they cried was excruciating for me. It just never gets easy. Life is so hard sometimes.

Need a Good Laugh?

Justin Heald’s first baseball game was Monday, June 8, 2009. He has such a good time playing the game, but if it gets a little boring, he’s very good at entertaining himself! I think he would actually make a very funny mascot! Watch how he the coach from the rival team tells him to concentrate on the game and watch the ball. He’ll shake his head in agreement and then go on to what he was doing. Also, funny is when he pretends to knock himself out with a right hook. He was oblivious to me shooting and despite the low resolution, the wind shaking the camera, my body shivering from the cold, and my laughing which shook the camera–you still can’t help but laugh at that funny little 5 year old!

***BTW–I see that after viewing it pops up 15 videos underneath–not sure how to take that off or if I even can and I haven’t had time to check their content. If I could just embed his video alone–I would, but I’m not sure how to do that yet. I just learned how to do this. See, you can teach an old dog new tricks. 🙂

P.S. I just watched one of the clips underneath Justin’s–use caution.

Call For Action…

Ok. I finally figured out how to post polls and have been so excited to see what everyone would choose. I tried to put a post about it in the Random Thoughts (sidebar), but not sure anyone is checking that? I know there are lots of people popping in and most don’t comment. That’s ok. Gotta be honest, wish you would, but that’s ok. For those that don’t want to comment but would like something more anonymous, I will have polls from time to time and would love to see your responses. Its a way to just click a button–that’s it. Its been a few days and I’ve watched the blog stats grow in terms of traffic and no one has voted! So, I did it myself–thought I’d start the ball rolling. I keep checking that thing now–and still no clicks. Many polls I see on other sites have an ending date when the poll will close. I’m not sure how long to keep mine open or put a deadline on it. ??

I’m playing with the site so from time to time I will be adding or deleting things. I’m working on tagging things and trying to figure out how to hyperlink back to previous posts so I can reference something I have posted earlier–for those coming in that haven’t been there from the beginning. I have lots of pictures to upload but have forgotten my Flickr username and password because its been so long. I also have Youtube videos of me shaving my head that will be uploaded sometime in the near future as I near completion on that post. I do want to remind you that I created this blog to chronicle my journey. It will include pictures or video or content that you may not agree with or like. For those of you that this involves, feel free to click out of the site. I have been torn between self-censoring in an attempt not to offend anyone, and staying true to myself and to the purpose of which this blog was intended in the first place. I appreciate the feedback, encouragement, and prayers, and sincerely hope that those of you who come back regularly or just find my blog randomly will continue to come back. My journey is raw. It is real. It is filled with emotion–the good, the bad, and the ugly. It is personal. I am asking you to come along with me–but only if you want to.

Never in my life have I felt so inspired to write. Never in my life have I been so fueled to spread the word and encourage others to get their yearly mammograms. In order for me to make sense of it, it needs to be complete. I have been sporadic in my publishing, but my thoughts and my writing have not stopped. The constant juggle of family, work, responsibilities, doctors, treatments, etc. consumes my days. I write when I can find a small pocket of time. It sometimes takes me days and weeks of those pockets before my post is ready to publish. I hope that changes soon, but for now, know that there are a lot of posts to come. So, please stop back.

I also think I’ve figured out the chat box. I really wish I had a calendar option that I could post times on certain dates that you could find me working in the blog if you’d like to chat. That feature is not part of my calendar–that is just to remind me when things happened and give you a visual of that as well. I do think that would be a good feature and will suggest that to WordPress. If your Pink Tank shows me online–click in the lower box to edit your nickname and please put something in there I can recognize–username, personal name if I know you, etc. I’m going to try for Thursday evenings 10pm CST if you want to stop by.

I didn’t realize up until this past week that there was some goofy looking box that showed up on your end–a big white one with Box.net written in it. ?? I have figured out what that was and also figured out that I had no intention of that being in the sidebar. I don’t always look at the blog the same way you do because I am constantly in an edit mode and don’t see it in reader mode. So, if you ever see something that looks totally goofy–please let me know so I can check into it. I am also beginning to go back and reply to older comments. I’ve been in too much of a freak out to really respond. I am now in a more interactive state and ready to take on a more participatory role–not just for my blog–but in many areas of my life. I am tweeting short status statements that may lead to larger posts and may just be for those wanting to know a quick update without reading the entirety.

You can follow those on Twitter (cjheald), or Facebook (Christina DePauw Heald), MySpace (not ready at all yet) or you can subscribe to this post through this post, RSS, or Networked Blogs if you like. I’m just trying to connect with all of you and keep you connected. I’d love to change my layout, but can’t find something that accommodates the things I want on WordPress. I’ve checked into Blogger because I’ve been finding some of the most beautiful layouts over there on other’s blogs. I’m not sure if I want to move everything over there, though. I’m always wishing I had more time to read or write and there are always things that I HAVE to do. I’ve got a big post getting ready to be published this weekend. It will have pictures, I hope–can’t post without that this week. One last thing, please tell your friends about my blog–maybe they’d be interested, want to offer some advice, words of encouragement or prayers–I’m accepting them in all denominations and really trying to get the word out. I’m hoping to have a worldwide network going on someday!

My mission today during naptime–reconfigure my Flickr account, register for Race for the Cure, check into swimming lessons for the kids, upload some video to Youtube to get ready for a future post, download some information on the Susan G. Komen’s website I found that I want to discuss with the 2nd oncologist for Monday’s appointment, work on my lengthy list of questions for that Dr., and fill out my paperwork for this Sunday’s dedication ceremony where I will finally join my new church. A lot to do in an hour and a half. I also have been called into work at the Arsenal this week for a child of a fallen warrior. I’ve never done that before. It reminds me how fragile life is and that we need to drink in each day because there may not be a tomorrow.

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.

Problems….

In a nutshell, been having problems with my internet and I’m typing from my phone. Aaaaaarrrrrgggg….

I am also trying so desperately to keep up with what is happening to me…profound revelations about myself that I want to share but I just can’t possibly text it all.

My hair started to fall out two days ago. I’m trying not to freak out because it’s just small handfuls right now…but my anxiety is building.

I need to finish two classes up still and work on taxes. I want to run the Race For The Cure in a couple weeks but after my next round of chemo, I’m not sure if I’ll be up to it. All I want to do is write and I haven’t even been able to do that. I just want my old life back where I could accomplish a million things each day. I’m so sick of all this. The stories I have to tell…consume me. Since I can’t seem to get them down–I dictate them into a voice recorder so I don’t forget.

I spent 9 hours today in seminars for the Rock Island Arsenal–one of my jobs. It was mostly interesting, quite hysterical at times, and left me wanting more from the keynote speaker. His thoughts on child psychology were hillarious and since that is one of the classes I need to finish up, I’m hoping my notetaking will be useful.

I found myself relating to much of what was being discussed on many personal levels. I was given a couple quote to think about and I thought I would share them with you:

“And in the end it’s not the years in your life that count. It’s the life in your years.”–Abraham Lincoln

“When it’s dark enough–you can see the stars”–Charles Beard

The sun is shining today…

Fierce and FabulousChemo.

Today.

Lots of news to report.

Other more immediate needs to take care of–lots of dental work–5 cavities a crown and a root canal all this past Monday–3 and half hours of having my mouth clamped open.

Had to be sedated–thought I was in a SAW movie.

Now still having major problems.

Can’t take anymore pain pills because of the drugs today.

Suffering through the throbs that shoot through my skull.

Will be back real soon. I promise.

Weirdly, I’m not scared today. The sun is shining.

Just when I think my determination to slay this dragon has come back, I get sick again and my spirits take a nose dive.

Dealing.

Trying to breathe.

It’s hard.

I’m trying but to some it’s not good enough. I wish I could trade places with those people.

I shaved my legs for today????? hahaha. Blew out my hair and put makeup on. I want everyone to see me for the superstar I am. Speaking of Superstar–I need all of you to rent it, watch it, find it. I have a very funny post coming up, but that’s your homework. Starring Sister Mary Katherine Gallagher from Saturday Night Live. If you’ve watched it but havent seen it in a while–RENT IT again! I was going to put a video in the Boob Tube, but the whole thing pretty much makes me cry with side splitting laughter. I can relate to that girl on so many levels. If your in need of a really good laugh–I beg you to watch it this weekend. I’ll post my hilarity next week.

Right now, I’m gearing up for another weekend sick–great–Mother’s Day.

I’d settle for a phone call from my daughter.

Still gone.

The sun is shining today and I’m getting ready to go kick some dragon ass!

Wish me luck!

Also…

I am also looking for SPECIFIC questions to ask the oncologist on Friday. If you’ve been through this and can help me please comment. Please…

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?

*FYI*

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