Lost and Found

Sunset on the Mississippi

Sunset on the Mississippi

Written on August 14, 2009

I woke up yesterday with that dead feeling in the pit of my stomach. Something just didn’t feel right. “Maybe I just didn’t get enough sleep or maybe I was just really hungry”, I thought as I got up in the wee hours of the morning. I knew it was something else and I could feel the anxiety start even as I maneuvered through a dark house. Two weeks. It had been two weeks since Jasmine took off again. She had only been home for five days. Prior to that, I had dropped everything and raced out to Ohio where she was found in an emergency room. I know that most people could not begin to fathom the stress our family has been put under this particular year. Just the cancer alone was knocking us down, but to have a child that goes missing–repeatedly, being told repeatedly there’s nothing anyone can do to help us or her, and to watch your other children suffer as a result of both–well the monumental stress of that far surpasses the stress of cancer and I’m beginning to think that if the one won’t kill me–the stress of the other will.

I managed the day with a two-fer–field trip to the Children’s Museum in the morning, and a pool outing in the afternoon complete with a picnic in the park. One last big hurrah before the last of the 4 boys goes off to kindegarten. The weather was hot, the sun was shining, and I knew I desperately needed the calming effects of the water to wash over me. There’s nothing that can do it any better for me then a semi-empty pool on a hot day. I could have stayed there and played with the kids all day. I could have. I wanted to. I told myself that I was dropping everything and spending time at the pool with my kids this weekend. Everything else could wait. I needed to take care of my stress levels. So, with that self-made profession, I loaded the kids up at the end of a couple fantastic hours and we headed home to deliver them all to their folks. Once the last one was gone, I ran inside, changed clothes, and raced off to the Arsenal to work in the Child Development Home. Some question why I choose to work there or at my music studio for a couple hours each evening. They question as to whether it heightens my stress level. Quite the contrary, actually. At either place–its really quiet. I still get to work with kids–something I’m passionate about–and there’s no phone ringing, dog barking, etc. Last night was no exception. It was so peaceful out at the Cottage. I only had one little girl who was simply delightful and made me laugh as she jabbered about this and that on our walk.

I sat on the porch swing for a long time with her and I realized how much I missed the porch swing of my house in Davenport. It dawned on me that I had been seriously void of any swing therapy for myself in the past 4 years. When I left, the breeze was blowing in and the hazy sun was beginning to set. I decided to take the way off the Island that snakes you along the Mississippi. I was so taken aback by the peace and calm of the evening, the breeze blowing across the river, the sun giving off its final burst before setting into the horizon, and the sound of the waves lapping at the shore. I stopped the car, drank in the solitude for just a moment, then took my phone out and snapped a picture. I was so appreciative for the lull in my life at that moment. True to the forces that are governing my life right now, though, the moment was gone as quickly as it appeared and the ringtone on my phone interrupted the silence. I looked at who was calling in and my heart skipped a few beats. I sucked in my breath and quickly answered, “Hey Mitch, what’s up”. Mitch was the boy that left with Jasmine on that cross country trip which culminated into a quarantine unit of St. Anne’s Hospital in Westerville, Ohio.

I have found it extremely difficult to really be able to discern which of Jasmine’s friends are truly concerned for her safety. The numbers of kids who are more eager to pressure her into God knows what or to emotionally yank her down are staggering. I have only found a handful through the years that do not view me as the enemy–the adult who is just trying to put the cabosh on whatever good time may be going on. Yes, there are still times when I have to control myself from chewing those friends out as well, but I try very hard to remember that none of us in this world are perfect. We all make mistakes and kids just do them on a more regular basis until one day–the lightbulb turns on. This handful of true friends knows Jasmine’s problems and still love her. They are genuinely worried for her safety and well-being and have formed an alliance of sorts with me to do what it takes to see she gets the help she needs. Mitch is no different and if weren’t for him, I wouldn’t have half the clue I do about the circumstances revolving around her extensive roadtrip earlier this summer.

“Mrs. Heald, drop what your doing. Jasmine just called me and she is in a lot of trouble. She’s hurt and needs to go to the hospital.”

At the same time, my husband beeped in–“Jasmine just called–she wants to come home–she’s not doing well”.

I wanted to throw up. Right there on the banks of the Mississippi. How much worse can it be this time? Each time she took off and came back, she was in much more perilous physical condition then the time before. The ailments were at times life threatening. I cannot begin to describe the feelings you go through as a parent when you get these types of calls. Knowing that HIPPA laws were going to prevent any medical staff from relaying information to me since my child was 17 only increased my anxiety. I told Mitch he would probably reach her faster than I would and to go to her and don’t let her leave his sight. I told him to text me the exact location and I would contact 911.

A coordinated effort was quickly put into place between two neighboring communities and paramedics were called once the text message came through. I raced off to find the ambulance fearing the worst, but hoping for the best. I passed an ambulance going in the opposite direction. I wondered if that was hers. There are two hospitals close to where she was found. I wasn’t sure which one she would be taken to. When the 911 dispatcher called me back to tell me both hospitals were full and she was enroute to the West Campus, I knew I had just passed her. I turned around and raced down the side streets to avoid the lights. I arrived to see three squad cars and an ambulance. My heart stopped. I turned the car off and sat in there for just a few more moments so I could do some much needed praying.

“Dear God, please surround my daughter with your loving arms and help lift her up out of this Hell she has been suffering in. Help ease her afflictions and quietly whisper your word in her ear so she may be reminded you are there with her always”.

I ran into the emergency room and was buzzered in. I could hear her crying through the hallway. When I opened the door, my heart broke once again. I went to her and held her and told her I loved her just as I had done in Ohio, just as I had over Mother’s Day weekend when we stood in the rain under a streetlight behind a restaurant. Each time she has been lost and then found, I ask her if she has reached her bottom. Each time she says yes. Each time we are all amazed that she still has had further to sink. There is nothing so saddening then to see a young person who once used to be filled with laughter and love and life, gifted with musical talent and beauty, and graced with such intelligence that many colleges were lining up to grant scholarships to–and then within a period of one year–its gone–and all that remains is the shell of that person. A shell that has also been so badly wounded that you barely recognize the person standing before you.

The one thing that remains a constant in this whole nightmare is that I am her mother. I have not agreed with or respected the decisions she has made this past year, but I am and always will be her mother and I will love her just the same. She was given to me by God to raise and to guide in her journey through life. How could I forsake her now when she needs me the most. Even though I want to lecture her until my tongue falls out–what good would that do? She is in obvious deep, emotional and physical pain. Earlier this year, I would have had no problem giving her a piece of my mind. It wasn’t until I met a woman in our local wig boutique one day. She said something to me that day that has resounded through me all summer. I don’t remember her name, but I’ll never forget her face. The enlightenment that I received from that chance encounter helped open my eyes in a few if not many areas of my life. I will elaborate more in another post, but for now let me leave you with the wisdom she imparted—-“Just Own It”.

As I pondered that over the next several days, I realized it not only had to do with my life and what was happening to me in reference to my cancer treatment, my hair loss, or my emotional ups and downs–but it very well could take a place in my understanding how my relationship with my oldest daughter needed to be evaluated. It was very evident to everyone that I had become for quite some time completely against all of my daughter’s life choices. They were completely against everything and anything I had ever tried to instill in her. She was making choices that I knew would have life long consequences, and as any mother, I would never have chosen those decisions for her. I realize that they are her decisions. She’s going to have to learn the lessons that come from them. I just know–having already been young–that you can either go through life the easy way or the hard way. The way she was choosing is certainly NOT how I would have advised her, but some idividuals just need to learn the lessons on their own even if its a much harder row to hoe.

Looking back over this year, I saw myself completely disassociating myself from her. I was becoming indifferent toward her. I didn’t want to see her and the chaos that lied in her wake. I didn’t want others to see it. I didn’t want others to judge what kind of mother must she have had for her to be so out of control. I knew in my heart that we had always provided for our daughter and our other children the values and beliefs of our family and our church. I knew that we were good, honest, hard-working, nurturing, loving, playful parents who enjoyed spending time with our kids in and out of school. We have supported all their ideas and extra currirular endeavors and we have always had their back when it came to anything that they needed our help with. Then, they start growing up and making their own decisions–ones that could have devastating consequences and you are frustrated, infuriated that all you’ve taught them has gone in one ear and out the other, disappointed that the dreams you had for them are not the dreams they have for themselves, and in a way–embarrassed. People judge. They do. Just like they love to tear something apart. It’s human nature–not the best side of it, but it is.

It was easier to turn into one of those people at that point. It was easier for me to start tearing apart all her ideas and thoughts and actions. It was easier for me to DIS-OWN her than it was for me to accept her and all her baggage and all her bad choices. It was so much easier for me to not care because caring was tearing my heart into tiny little pieces. In a way, it was a self-preservation technique. I know that sounds messed up, but I had gotten to a place where I just couldn’t handle any more. I had just been diagnosed with cancer. I was trying to juggle jobs and family and house and school and here was this entitiy–this child I had given birth to–who was now very symbolically spitting in our face and giving us the bird to everything we had tried to teach her. It was more than I could bear. The centrifigal force of my world spinning out of control has been uncomparable to anything I’ve ever known. So, it really hit me in the face like a ton of bricks when this woman told me, “Just Own It”.

I realized, as I said before, that I had begun to dis-own my oldest child. I couldn’t take what others must be whispering behind my back about her upbringing or about my daughter for that matter. I knew they all didn’t have a clue–no real intimate knowledge of the workings of my family and I was clinging to those friends of mine who did understand. They have been my saving grace through this along with an intense amount of prayer. It was extremely difficult for me to admit that I had begun to disown her. It’s a common element that runs pretty prevalent through our family and I was also beginning to realize that the thing I feared the most–losing my child–was actually happening with my help. I was becoming much like my own mother and that caused me so much grief I began to suffer terrible anxiety attacks.

I knew that the only thing I could do to help ease the pain in my heart was to “Own It”. Own that I have a teen that is making really bad decisions. Own that I can’t control everything about her life. Own that I do and will always love her. Own that people will always talk, but it is me that has to look myself in the mirror and ask myself if I have done everything that I can for the children God has entrusted me to teach. Own that I am not perfect and I make mistakes also and I have to forgive her. In essence, I was going to have to OWN Jasmine, again. Despite the questionable opinions of others, the raised eyebrows, the tsk-tsk-tsk they say under their breath. I know that they have never had to experience what our family has and I would never wish our burdens of this past year on even my worst enemy. I know that unless they walk a mile in my shoes, they could never understand the place I am at right now and how monstrous the mountain I had to climb to get here was. So, to those that wonder why I would drop everything and go help a child that keeps messing up–go ahead and whisper. I no longer care what you may think–it’s my responsibility to my children to help them–at any age–without enabling them. I would travel to the ends of the Earth for them. I would lay down my own life for them. It’s my duty to them to “Own Them”.

Monday, August 17, 2009

I know you are all wondering how she is and what happened to her. Out of respect for her privacy, I will not elaborate any further other than to say, “It’s bad”. She is safe, though, and being treated for the time being. She was transported to a hospital about an hour and a half away. She is struggling with the consequences of her choices and we are all praying for her. We had an opportunity to travel up to see her yesterday. It was bittersweet. It was nice knowing where she was and knowing she was getting the help she needed, but hard knowing that she will be released soon, I think. Continued prayers for her are deeply appreciated. I have given her a journal. She is also a writer. I told her to write down her experiences–the good, bad, and ugly–from her perspective. Maybe, she could help another teen and offer them encouragement that there is a light at the end of the tunnel. I just pray after this, she will see the light herself.

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?”


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…


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?”


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?”


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?


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…


Started Tracking on 12-1-09