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…



15 Comments (+add yours?)

  1. kelsomom
    Jun 06, 2009 @ 23:08:54

    You have a Dr that doesn’t see you as a person, just a chart. Find someone else! It might help you in making an informed decision. Positive thoughts your way.


    • specificallyspeaking
      Jun 07, 2009 @ 08:03:58

      I was actually thinking about your last comment and your grandmother as I drove home that night. I was telling my husband about it over dinner. I also told him he can’t –not–go with me to these appointments anymore. I have appreciated your comments and I have been so emotionally drained that it has been all I can do to keep up with the day to day and nothing extra. I miss the extra. I do want to se someone else just to see if they tell me the same thing. If they do, then I’ll realize it’s just me? But, quite honestly, I don’t think so. Thanks so much for all the prayers and advice. I’m sorry you’ve also had loved ones that have had to face this. It affects everyone and it really is life changing. I hope to hear from you again. CJ


      • Teresa
        Jun 07, 2009 @ 12:40:30

        My experience with oncologists (and I saw two) was pretty much the same–they really don’t see you as a person. I’ve had other doctors tell me that’s the nature of oncologists. I’m sure there are some out there that break that “stereotype.” I just didn’t find one. I got lucky though and my surgeon is one of the most compassionate and caring people I’ve ever met. He’s always available to answer my questions and speaks very directly and yet in a caring manner. I hope you get similarly lucky in finding your next doctor.


        • specificallyspeaking
          Jun 07, 2009 @ 18:01:10

          Me too. I just dropped my little boy off to vacation bible school and spoke with a woman who is the PR/Marketing director for our local Race for the Cure event. She is younger than me and was diagnosed with lymphoma. She went to University of Iowa’s Hospitals and started over from scratch after she received the same results from area doctors here. I’ve toyed with that idea of Mayo Clinic in Minnesota. I will start calling tomorrow morning. I was also told that the chemo/radiation usually sends you into early menopause. This woman has gone on to have two more kids who are doing great and so is she. She had to go, but I look forward to talking to her each day this week as we drop off/pick up our kids from VBS. I am curious what her follow up care is with U of I and even though her cancer is different, I wonder if going there would prove more successful. I’m looking forward to reading more of your story!


  2. Margi
    Jun 07, 2009 @ 15:55:36

    I got so angry I could hardly read the last third of that. How CAN he tell you to relax and get on with your life? What a bastard. You absolutely need to see another oncologist. Try to write out what you want to say and know so that you have a bit more control over your feelings and aren’t crying or angry, they should be trained to deal with distraught people (as well as having natural sense and compassion) but all too often they react negatively and get irritated and the patient gets nowhere.

    I don’t think it’s unreasonable to consider oophorectomy. It protects you by taking away the ER tumor’s fuel and done laparoscopically that is NOT major surgery, it is daycase (also they can remove the uterus through the vagina now in many cases and, again, that is not major compared to the cutting and anaesthesia involved in trad hysterectomy). If they do the oopherectomy and leave the uterus they should also do a D&C and remove the uterine lining at that point which means any, any at all, unexpected bleeding would mean you were immediately checked out for uterine cancer – it gives you a baseline as it were (acc to my onco-gynae because I nearly had an oophorectomy – and might yet). And remember you can get pelvic ultrasounds done to detect thickening of the womb lining – I had one when I was losing the plot after breast diagnosis and I paid cash for it, would have been the equivalent of $140, and I fully intend to have them regularly to observe my endometrium during tamoxifen treatment. It will also show up anything on your ovaries if you keep them – mine showed a 2cm cyst of ‘mixed echoity’ ie, with solid parts, I nearly went crazy but the ca125 (blood test specific to ovarian cancer, not totally reliable but, again, worth having) was neg and the Dr convinced me to wait a bit and I was lucky, it is now dissolving. Still it scares me stupid that I did wait. If you possibly can pay for pelvic US (if your insurance won’t – I don’t have any and the NHS won’t pay for peace of mind) it will measure the endometrium, detect polyps, fibroids, anything on your ovaries and free fluid, if there is any, and unlike MRI and PET it can’t throw up red herrings.

    I can’t say anything about chemo as I didn’t have it. Mine was 1cm, stage 1, grade 1 with no lymph node involvement. I had a lumpectomy, sentinal node biopsy and 5 weeks of radiotherapy plus now 5 years of tamoxifen. My follow up will be back to yearly mammos which I was having because my mum died of it. But I will be arranging my own pelvic and also breast US as that is one of the few things within my control, not that any medical person has suggested or offered it, btw. I may also opt for oopherectomy too – it was a definite before I knew the cyst was dissolving and I may still do it, the connections between breast and ovarian cancer are a bit worrying.

    This is a vile situation and you have to be your own best friend and your own best advocate. Yes, relax, but just long enough to regroup your thoughts and emotions. You need peace of mind although – and I’m a fine one to say it – sooner or later you do have to let go and live day to day but I don’t think you are at that place yet and it was so wrong of that doctor to tell you to basically fake being there. You need answers and information you can process and make sense of or else trying to get on with your life will be like walking over a cliff ever day and you just can’t live like that.
    With prayers.


    • specificallyspeaking
      Jun 07, 2009 @ 18:26:59

      OMG–Margi, this was a wealth of information for me and gave me a lot of food for thought. Thank you so much for your insight. Funny thing is that I usually go into my appointments very composed and ready to ask a lot of questions–sometimes I have them all listed so I stay focused. Through this process, I have felt like a two year old at times always asking, “Why? Why? Why did you do it that way? Why not do it this way? Why didn’t you do it this way or that way? Why do we have to do this at all? Why, why, why, why, why, why, why???????” It’s only when I feel that there is a logical explanation out there and I am being treated like a dumb blonde–what could she possibly understand about all of this–type of interaction that I find myself starting to get ruffled. Then, when the doctors keep talking to me in that way–those ruffled feathers turn into a full fledged peacock. I’m ready to give that person a piece of my mind. My thought is this–I don’t care if these doctors have to reiterate the same information a million times a week. They better tell me a million and TEN times. Tell me until they’re blue in the face. Better yet–if they would just answer my question–ONCE!–I would stop asking.

      I’ve wondered if it may be that I am just refusing to hear what they have to say. I wonder if I’m being an ostrich with my head stuck in the sand. Then, I ask my husband who comes with to most of these “informational” appointments. He is trying to buffer the information or lack thereof for me. He lets me ask him the questions until I wear him down, and he lets me cry and argue until I’m blue in the face. It always comes back to this–I know there is an answer to my question(s). I have to call that office in the morning–now that I’m thinking about it–I think I was told two different things about my staging now that I’m looking at yours. I’ll have to check into that. I’m going to call a gynecological surgeon also. I’ve got valid questions about how these drugs are going to affect my female organs.

      Before all the chemo stuff started and I was still working with the surgeon, I was able to live a little in between appointments. I would be told stuff like–“ok, now I’ll see you back in two or three weeks and we’ll go from there”. I could somewhat handle that. I couldn’t do anything else except wait. I had small pockets of time to absorp what was going on and there would be days or a few at a time where I refused to think about it because I couldn’t do anything until the next appointment and because I had too many other things I was juggling. I am one who needs a timeline of sorts so I can put things out of my mind for a while. If the guy would give me something to afford me the luxury of peace of mind–like a specific outline of follow up care for the rest of my life–then I would be more than happy to sit back and relax a bit. Right now, though, I am in the middle of it. I am not sure of the next step. I don’t know how to proceed if I choose not to do anymore chemo. If he would say–“Ok, for the first year I am going to have you come back every three months and then we’ll move to every 6 months for year two and if everything looks good–(for me that means bloodwork, mammo, chest x-ray, and some CT scans) then we’ll move to a yearly visit unless you feel something that isn’t right for you. I would totally consider a hysterictomy and some of these ultra sounds as well not to be a manic anxiety ridden mess, but to know that these are the things I can do and have to do for myself from here on out for the next 40 years +. No different than getting your teeth cleaned every 6 months. There are some people that will always have to maintain a different set of yearly tests than others if they want the peace that comes with living with cancer. I know there are certain anniversaries that are looked forward to by cancer patients–I want to do that. Right now, I need someone that will listen to me. I’m open to listening to them, I just hope they are ready for ME. I’m not going to roll over and play dead. I’m just not.


  3. Tracy
    Jun 07, 2009 @ 20:47:02

    You have to be an advocate for yourself. Get a second opinion (or a third if you need to). This is your body. Your life. This doctor, and my mother-in-law knows him well, gives the same speech to all of his patients. She told me this evening, “He was nice, but he didn’t seem to like it very much when I questioned him.” He sees cancer patients every day, but he’s not living with cancer himself. He’s not the one making the decisions and dealing with the side effects. You are. Do what’s right for you physically and emotionally because that’s what’s most important.


    • specificallyspeaking
      Jun 07, 2009 @ 21:31:07

      Tell your mother-in-law thanks. I am going to make a lot of phone calls during naptime tomorrow. I really wish I could find the perfect combination of empathy, wisdom, and intellect in a doctor. I hate feeling like I should be on a conveyor belt led off to slaughter and I’m just waiting for the giant mallet to strike me between the eyes. I’m not trying to hem-haw, I am trying to advocate for myself. That is supposed to be a good thing. Unfortunately, I’m made to feel the opposite way and then I leave deflated, dejected, and more determined than ever to get the information I need. Thanks for being there for me. CJ


  4. melanie
    Jun 08, 2009 @ 07:56:52

    Hi Christina,

    I have not been in your specific situation, but have been in other medical situations where I felt much of the same thing. This is why I work in alternative medicine for a homebirth midwife. Yes, it is a tough legal situation and yes, I can be punished, but doggone it if I didn’t get sick of being told by a dr. how to feel and encouraged very little (even discouraged) from investigating and being my own best advocate. Not all dr’s are like this, I realize, but I do think it is much, much easier for a dr. if they can ‘share’ their knowledge with you and you just go along with it. Less time, less effort, less emotions.

    My advice? I know it’s tough now, but find another dr. or look into alternative medicine.

    I think you are great and I love that you are not rolling over and assuming an ‘appropriate’ position.

    Hope I didn’t overstep.



  5. Terri
    Jun 08, 2009 @ 14:10:45

    Chris, I agtree-you need to meet with another dr. This guy’s bedside manner stinks. Also, is there a support group at your hospital? I know, like you can fit that into your schedule. But look at all the info. you got from Margi & the VBS mom. A room full of people that are going through similar things could give you all sorts of info. & maybe help sort out the info you are getting from doctors.
    Love, Terri


    • specificallyspeaking
      Jun 08, 2009 @ 14:16:40

      Thanks, Terri–I’m looking into it as we speak. I have also made an appointment with another oncologist for next Monday. I also found something on the Susan G. Komen’s website that hit the nail on the head for me. I’ll post it later tonight for anyone else interested. It answered my biggest question of all. Love you too, CJ


  6. Leslie
    Jun 08, 2009 @ 17:03:38

    I have not had to deal with a cancer situation but my daughter has had some strange medical issues that we couldn’t get answers to. It was very frustrating and I was told more than once the I was overreacting and there was nothing wrong with her. We have tried 3 different Dr’s and finally got some answers. Lo and behold there is something wrong and we are on the right track to figuring it out. But we wouldn’t be if I hadn’t argued, asked a ton of questions and got a new Dr when the answers didn’t make sense. Thanks for sharing your very personal walk with everyone. Prayers, Leslie


    • specificallyspeaking
      Jun 08, 2009 @ 19:56:41

      I hope it was nothing serious with your daughter. I have found with the medical issues my daughter was dealing with that the new HIPPA laws prevented me from knowing anything at all about her condition. It didn’t matter if I asked a thousand times, I was asked to sit in the waiting room and I was responsible for the bill. I think this is just ridiculous in regard to children. It makes me furious. I have found the doctor to be advising her on issues that go directly against everything we have ever taught her or her years and years of Christian schooling taught her. I would understand it once a child turns 18. But as long as I am paying the bill, buying the medicine, and seeing to it that she is receiving the care she needs and as long as she is still under 18–I SHOULD HAVE SOME IDEA OF WHAT THE HECK IS WRONG!! I don’t know what the age is where this flips over and a parent or legal guardian is no longer privy to their child’s health or medical condition. This is a major soapbox for me, so before I get all riled up, I’ll let that one go. I don’t know how old your daughter is, or where your from and I don’t know if its different in other countries, but I do wish you a lot of luck.

      Sidenote: 2nd opinion is set for Monday, the 15th.


  7. Leslie
    Jun 09, 2009 @ 11:08:24

    My youngest daughter is only 6 so far no issues with me knowing what is going on. Bladder issues of some sort very high unexplainable bacteria count that isn’t treatable by antibiotics, weird! Not sure yet!!
    When I took my oldest daughter to our new pediatrician when we moved to California about 8 years ago I was shocked when he asked to speak with her alone. I didn’t allow this as I didn’t know him that well. Not sure I would have if I had known him well. I sent my daughter out to the waiting room and asked him why he would think that is necessary. He believed that at 12 she should be counseled in the area of sex education and given the chance away from me to ask questions. As I had never been to any pediatrician other than my own from when I was a kid and having just moved to California I initially thought it was just a strange California, city thing. Obviously that isn’t the case and it is nuts. Our oldest went off the deep end at 16 and lived apart from us from then on. It was the most difficult thing I have had to go through as a Mom. I have deep empathy for where you are at right now. We get medical explanation of benefits for who knows what the last one being thousands of dollars. It is mind boggling that we are responsible for these visit but have no knowledge of that they are for. There is no good way to deal with or accept these things there are times when the not knowing makes me want to come uncorked. I just keep coming back to God and He reminds me gently that He knows and that has to be enough for me for now. I may never get the whole story but He does!!! He lets me come uncorked at Him which I am so grateful for as I am fearful that my husband couldn’t handle my very deep and angry emotions. You are in my prayers more than you know.


  8. Auntie PM
    Jun 10, 2009 @ 17:26:59

    still with you. Love


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