Wednesday, September 29, 2010

Day 146: I've got heart

Be forewarned: this is going to be a long one. I have a lot to get off my chest. I can't believe I wrote that last blog on Friday. Who knew what the weekend would entail?

I spent what might be the last pretty, warm, sunny weekend of the year in the hospital, getting a battery of tests for my heart.

Last time I wrote about the crazy weight gain and loss that I had after taxol. With the gain, I had sausage fingers, though my ankles and face looked fine. This was "normal" water retention from the chemo, I was told. Seems abnormal to me, but hey. After my hell day on Wednesday, I felt really out of breath and my heart was pounding, starting on Thursday. I didn't even think to mention it in the blog, because I figured I had just had chemo, I was bound to feel lousy, and I had been doing some extra things like water aerobics so maybe that was the problem. But on Saturday morning when I felt like my heart would leap out of my chest and the most exciting thing I had done was make pancakes for my family, I thought I should call a doctor.

Whoever was on call at Northwestern told me to go to the ER. I was annoyed at that advice, since I wanted to go apple picking that day. But I did it anyway, and it all spiraled from there. I went to a hospital here on the south side that is also a trauma center, so everyone and their mother who gets shot, stabbed, or in a car accident ends up there. This happens a lot on the south side, so I was on hold for a while, sitting in a wheelchair in the hall, waiting for a room to open up. I should have realized that if they were willing to spare a room for me at all, there must have been a reason. Cops were everywhere, there was mad drama around me, and I looked comaritively robust in health compared to everyone else. I sat there reading a book, and no one else seemed to be able to move or breathe. I was not expecting to be there for more than a few hours. In fact, I drove myself there. I figured Gabe had the kids and if something crazy happened and I couldn't come home, we would figure it out. But I really didn't think that would happen.

They found me a room finally and I had multiple EKGs and two blood tests. The on call doc was very concerned. My heart rate was up, above 100 most of the time I was there, up to 115, and my EKGs were abnormal. The blood tests showed elevated troponin, a cardiac marker that if elevated means it is leaking from the heart. The three most likely reasons for that are a heart attack, blood clot or damage to the heart muscle. So the doctor said I couldn't go home--they were going to keep me there, probably overnight, and try to figure out what was happening.

I couldn't believe it. I actually asked her to repeat what she said. I just turned 35, I said. Is it the chemo? Well, we don't know. You will need a CT scan to see if it's a blood clot. People with cancer are much more susceptible to bloot clots. This makes no sense to me, even now, but I said ok--let me call to see if it's ok to get a CT scan while I'm doing chemo. I called Northwestern, talked to the on-call doc again, who said that the possibility of a clot superceded all other concerns and I should do it.

Up until that point I had avoided an IV, even though they wanted to put a precautionary one in "just in case." I told them I was saving my veins for chemo. For the rest of my life, I can never have a blood test, shot, IV or even blood pressure done on my left arm since my lymph nodes were removed. That leaves me with two good veins for IVs. Well, no such luck, I was heading for a CT scan, and I needed the IV.

The last time I had one was the dreaded one that happened when I was six and they diagnosed me with epilepsy. That was a traumatic test, as I've noted before in this blog. This time I was terrified something was wrong with my heart or lungs, but I wasn't afraid of the test itself. When the nurse told me the dye injection would burn and feel very hot, I thought, ok, what's scarier is that one of these three minute tests is like getting 250 xrays. But when the dye went in, I thought, holy shit. There is a fire in my body, starting at my head and moving down to my toes. I actually thought I had wet my pants but it was the heat in my groin. Then just like that it was gone, they took the pictures, and I was done. Modern medicine is truly bizarre.

I eventually saw a doctor in my new home at the hospital in the "Critical Decisions Unit" which should be some kind of law and order spinoff title. He was an extraordinarily nice man. Youngish, big smile, charming. He was listening to my heart and needed to move my gown. He got embarassed and said he was sorry for undressing me like that. I wanted to laugh, but he was so serious about it that I didn't. Does this guy know how many breast exams I have had in the last few months? For all I know everyone who has read this blog has given me a breast exam. Anyway, I had this heart monitor attached to me via a special gown that allowed me to walk around with it, and I had EKG stickers all over me in addition to the monitor stickers, and I generally wasn't feeling too sexy or modest.

His bedside manner was both concerned and committed. He was drawing pictures of my heart, giving me some short Heart Muscle 101 class, going on and on about what could be happening. He said that they needed to find out if the muscle of my heart was damaged. For that, I would need an echocardiogram and I would need to see the cardiologist the next day. Unfortunately I would need to spend the night.

I lost it. I wanted to go home to see my kids. I wanted to go pick apples, play catch, watch football from my couch. Hell, I felt good enough to want to make a pot roast. Now I was terrified that I had traded early stage breast cancer for a permanent heart condition, and that it was my fault, having "chosen" the adriamycin. I started to cry, which should make a person feel better but always makes me feel worse because I think it is a sign of weakness (for me, not for other people). I thought the doctor would cry too. He was holding my hand, asking me about my kids, telling me I would be ok, even if something had happened to my heart they could treat me, and then he said something I couldn't believe. He said "This sucks. It's terrible to have a chronic medical condition. We can treat this, but it does suck and I know you want to get out of here and go home."

Did a doctor just admit to me that something that was happening was not good, and agree that positivity wasn't the right course of action? Unbelievable. And I wanted to congratulate the guy for being such a human being, but all I could think was, man, you will never last here. Not in the CDU, where so many people probably never make it out. Not in the trauma center, where there are little kids coming in from accidents, where you see so much domestic violence, shootings, burn victims. Did I affect him so much because I'm young, my kids are little, and having both cancer and a heart problem seems insane? Does everyone affect him like that? How does he get through the day?

Once I stopped thinking about him I wondered how I would get through the day. I was so upset. I was just sobbing, thinking about my choice to do ACT rather than TC chemo. I would have been done already, only 4 infusions, it isn't worth the heart condition just to avoid the permanent hair loss. I cried so much talking to my mom and Gabe on the phone and I felt so alone. I missed my kids. Through two surgeries and all this chemo I have never spent a night in the hospital, not in 5 months. I just couldn't believe yet another damn thing was happening that shouldn't happen to me.

When talking to Gabe I told him to start thinking about what we haven't talked about yet: what to do if I'm not around. At that point I just didn't think it would end well for me. The odds seemed so against me, as I am always on the bum end of the statistics. I figured I should update my will, write those letters to the kids, make sure Gabe looked into some nanny options. He said, Kate, we can't afford that. I said sure you could, with my life insurance. He started crying and I realized that conversation was less than fair to him, and yet I just felt so defeated I figured I should stop thinking about myself and worry about the little people for a change.

When talking to her on the phone, my mom reminded me that I had many reasons to choose ACT, not the least of which was that the fertility counselors at Northwestern told me that ACT left me with a less than 20% chance of permanent menopause, compared to up to 70% for TC. They advised me that at my age, menopause would be bad because of how it would leave me susceptible to osteoperosis and ovarian cancer. My chemo nurse told me that while some people are allergic to the solution they use to dissolve taxol, on the other hand, some people are allergic to taxotere itself. Since I know I would probably be one of those people, I feel like I did make a good choice.

Especially since I don't think adriamycin has anything to do with my heart problem. I stayed in the hospital and my echocardiogram was normal, meaning the heart muscle hasn't been damaged, which is what adriamycin can do. Both the oncall doctor and the cardiologist said that you don't see those AC affects right away--it would happen much later usually. They thought it might be taxol. The second oncall doc from Northwestern who talked to me said that people can get a very fast heart rate from taxol. The warning information on the drug manufacturer's website lists heart palpitations or fast heartrate as a rare side effect; it warns that in very rare cases pacemakers can be needed for taxol patients.

No one--no one! ever mentioned this to me. The fact that I had an allergic reaction might make me more susceptible. That water retention was another clue. Regardless, the upshot was that my heart seems generally ok, but I was put on beta blockers. I should take these through chemo, and maybe afterwards, but I might not need them when I'm done. At one point on Sunday morning I was bored out of my mind, lying in my tiny basement room in the hospital, reading the paper. My heart was leaping again, and I asked to have the monitor screen turned on so I could see the rate. My hear rate was 118 while I was lying down. I hadn't gone anywhere in a day. They found that alarming, to say the least. It went down again, but stayed down once I took the beta blocker. These drugs are annoying--I have a very dry mouth and throat from them, and they can cause hair loss! I wouldn't worry about that except my hair is starting to grow back. It's not obvious, I know, but trust me.

I had a few comforts in the hospital that made the whole damn ordeal a little easier. Once I got over my fear of a heart attack, I could enjoy Gabe and Lenny visiting on Saturday night. She brought me Nancy, my stuffed turtle that she picked out for me at the aquarium. Nancy was to keep me company. Lenny brought me two books she made, complete with picures and storylines. The whole family visited on Sunday and the entire staff gushed over the kids, their red hair, and their general cuteness. Augie alternated between trying to escape and trying to trash the room. And the sensitive doctor came back, for some unknown reason. I had seen the cardiologist and knew what I needed to do. He just seemed to want to see me, to see if I was all right. He said a bunch of reassuring things, held my hand again, stayed too long. He told me he knew what it was like, that he had been in the hospital, he had heart trouble at one point and was on medication, and he was young and healthy. It was scary. Yes, yes, it is.

Try to tell that to my oncologist, who seems impervious to human emotion. I don't even know if I should go into that drama, it pisses me off so much. I emailed my chemo nurse and the physician's assistant because I was so upset on Saturday, and I didn't know if I could continue chemo or what the hell was going on. I wrote a long email, followed by another shorter one with more info, knowing they wouldn't get it until Monday. But I had to document what I was being told before I forgot, and they are impossible to reach on the phone when they are "in clinic." I followed up with voicemails on Monday, saying I didn't know what to do, the cardiologist suggested that if I continued with chemo I see another cardiologist at Northwestern or see him--what was the plan? They set me up for an appointment with my oncologist today.

If it is possible for two doctors to be more polar opposites than my oncologist and the oncall guy at the hospital, I would be surprised. I saw a resident and went through the whole saga with her. Then my doc comes in and made me feel like I was annoying because I had contacted so many people about this. Well, imagine how annoyed you would be if you were 35, had two small kids, and breast cancer and a heart problem to boot. He told me I was fine, that it didn't appeair that I have anything wrong with my heart (based on the reports I gave him, not on records). He implied that I didn't need beta blockers and they just kept me in the hospital because that's what happens when you complain of heart issues. I said no, that's what happens when they FIND heart issues. Then he indicated I wasn't following his recommendation by doing ACT instead of TC. But the clinical trial he wanted me to do was ACT chemo for 6 months with avastin thrown in the mix. I asked outright about three times back on June 14: "are there any major side effect differences?" and was told there were not. I was left to make the difficult decision on my own with very little information, though I did contact the chemo nurse and get some information from her before I had to decide. I never received an explicit recommendation; I remember blogging about how frustrating that was!

But anyway, I said, that doesn't matter now. I wanted to say, where the hell do you get off trying to tell a young woman with cancer she did the wrong thing? Are you going to thumb your nose at me next and say nyah na nyah na? He went on to indicate that taxol doesn't cause heart problems, end of story. I didn't even bother mentioning the fact that someone else at Northwestern told me it did, or that the manufacturer says it can. I realized that I have talked to many people like him before, and they never change their minds because they are never wrong. He said "many things" can cause a fast heartrate, including allergic reactions, anxiety...wait, allergic reactions? Is that what this was? A delayed allergic response? I knew he couldn't deny I had an allergic response since the chemo nurse saw it with her own eyes. He said it was rare to have the response be delayed. I said, well, is it normal to have the allergy on the 2nd infusion rather than the first? No, he admitted, that is very rare. And that's what happened to me right? Right.

But I'm fine, I look fine, that hospital visit was unnecessary, I will continue chemo, and he would refer me to a cardiologist AFTER chemo. Well, ok then. I will do chemo on Monday if my counts are ok, see if the allergic reaction is too bad, take the beta blockers, see what happens with my heart rate and breathing, and go to the other hospital and see a cardiologist without my chemo people knowing I did it. If I can get through all 8 chemos, great. Then we'll see what else I can do.

I would like to go to someone who is not totally dismissive of my concerns, who will not be unavailable for months to talk to me or give me confusing information. I asked if there was anything else to treat hot flashes besides the antidepressant they had prescribed me. No, nothing but estrogen. Oh please, I wanted to say. There are a million things. Remember when I worried I would have seizures due to my extreme insomina? I feel like everyone thought I was just nuts. Just like people on AC don't have diarrhea or lose weight. Just like no one throws up on chemo anymore, no one has WBC issues on taxol, no one feels bone pain from neupogen, there are no side effect differences for these chemos. I wanted to say, you can't tell me there are no differences and then blame me for choosing one over the other.

I feel like he wants to fight me, to test me. I just don't have the energy for that crap. Moreover, just because I have had a thousand breast exams doesn't mean I appreciate having one where the doctor just removes my gown himself, moves me around into different positions and feels my boobs ALL WITHOUT SAYING A THING. It's creepy.

I have had almost 30 years of knowing my body better than any damn doctor, and I'm not going to stop now just because he thinks cancer should scare the shit out of me. I am NOT just grateful to be alive, because other things matter too, and I do NOT believe this chemo is saving me right this minute. I was told, 85% chance of this never coming back if I only did surgery. Chemo was to bring me up to 95%, radiation would cover the rest. I agreed to it because I love my life and my family. But the thing that saved me was not his poison, it was me, feeling a lump that three doctors thought was nothing, and dealing with it.

When I was 8 and the neurologist had me in the hospital for a week doing guinea pig tests on me, he finally conceded his defeat. He told us, I guess her body is smarter than her doctor. And he pronounced me "cured." Well, he was wrong on that too, but I had 2.5 years with no seizures and no poison. After my gallbladder surgery I ended up in the ER with heart palpitations and blood pressure that was about 200/120. I couldn't take the heavy painkillers, so all I had taken was tylenol. The doctor there told me "we give tylenol to babies" and tried in vain to find another reason. When my primary care physician called me, at home, from his house, that night, he said "why the hell were you in the ER?" I told him, and I told him what the doctor said, and he said, I quote, "That's bullshit. It was the tylenol, reacting with the anesthesia. You just can't take anything."

My current GP wants me to do a full allergy markup when I'm done with cancer treatment. She doesn't know what to do with me. I'm ok with that. Just admit it. I'm a tough case, fine. In the ER this time I found out I have a slight bladder infection (chemo, again) and I got the one antibiotic I can take. Well, maybe there are one or two others, but I am allergic to most of them. Remember the delayed allergy to the antibiotic after my 2nd breast surgery? Three days later it happened, and the breast center folks just thought I must have gone bra shopping and picked up some bad lace.

My body has resisted this chemo every step of the way, and I am not the only one. I recognize that I have not had everything happen that could have happened, and I'm glad for that. I have not needed a blood transfusion. I have my fingernails. I have no significant neuropathy, not yet. I have my eyebrows. My skin is a normal color. As the oncologist says, I look fine. I wanted to bust out my favorite cancer quote, that another triple negative breast cancer survivor told me she used when people kept telling her how great she looked:

Well, I don't have cancer of the FACE.

I will end this endless blog on two notes. One, I guess I can see it as my personal mission to prove that looks are deceiving. Did I "look" like a child who had 100 seizures a day? Do I look like a person who at one point was bound to a wheelchair and had to relearn how to walk? Do I look like a redhead? If I wasn't bald, what would I look like exactly? A 5'5", 115 pound 35 year old who likes fancy shoes, probably. What the hell does what you look like have to do with anything?

Second, I am damn glad, proud even, of one chemo side effect I don't have. I'm glad I don't have any chemo brain. They have made me change everything else about myself, but they haven't taken my brain or my personality, for what it's worth. I'm still pissed off a lot of the time and I still don't trust figures of authority. I still don't believe that these doctors are smarter than me, no matter how many degrees they have. My memories are intact, so when they tell me things, they should know that
I am paying attention and that I will remember. I'll throw it back at them if I need to, and I'll write about it, because I still can.


  1. It's nice to at least have someone "human" to contrast with this "as-WEEP-ay" oncologist you have to deal with. Maybe after every interaction with him, you can replay the whole scene in your mind where he instead acts like a concerned human being and he actually gives you helpful information. At least you know it's not you. He likely offends all his charges, not just his 35 y.o. mom of two. His B.S. isn't worth the energy of articulating at just how many levels it offends. You know, he's not the only oncologist in the world. Can you change after chemo and get a new one? It's one thing if a doctor is technically proficient and smart but with no sense of social skills, like your gynie, but this guy's full of bad info and bad advice too. He sounds like a tool of the pharmaceutical industry.

  2. I know--sometimes I feel like I'm losing my mind. He's extremely well-regarded as being the best person in this field in Chicago, which is why I chose him. It just makes me tired.

  3. Chiming in on the conversation you and Jennifer are having...

    ... maybe this guy is just regarded as the best because he's too much of an a-hole to ever admit what sounds like many mistakes he's making, so he comes across like a god to his colleagues. You made a good decision in choosing him in the first place based on the info you had at the time. But I'm with Jennifer - think about whether a change would be right for you, don't feel like you have to be stuck with this guy.

    Secondly, OH MY GOD. I am so sorry you went through all of this! So glad that the beta blockers seem to be helping! And yay, Martha, for reminding you how carefully you have been making decisions from the very beginning. Props too to the CDU (b.t.w. I was tearing up a bit but then the Law & Order crack made me laugh so hard I almost spit out my yogurt) doctor for having some decency - finally!

    We all deserve decency, Tay. You might have cancer, but you're still a living being and you DO deserve better during your treatment. Keep fighting back, let them know you are not to be trifled with.