Saturday, November 05, 2011


My last chemotherapy treatment was four and a half weeks ago and while my body has been slowly recovering little bits at a time, I am nowhere close to feeling recovered. Which means now the real mental test has started. Of course I had some concerns heading into surgery but I coped with that the same way I have coped with all of this, by researching lumpectomies - the procedure and recovery. On the surface I had convinced myself the surgery was no big deal - just like my surgeon told me. But early this week, as my surgery date grew closer, I stopped sleeping. It started to occur to me that maybe it isn't the actual surgery I was anxious about, it was what the surgeon might discover once he opened me up. I've also started realizing that recovery from months of chemotherapy takes longer than four weeks. Much longer. I don't have a lot of significant side effects but there are a number of lingering oddities, more specifically, and most frustrating, is the fatigue. A word I don't think I ever actually understood until now. Fatigue is not a synonym of tired. My fatigue is teamed up with gravity to just pull me into the earth with dragging feeling that can lead to dizziness and almost total shut down if I overexert myself. I can rest up enough to get out of the house and the energy of being around friends or co-workers will boost me up for a while but when the crash comes I have to retreat to my bed. A half a day at the office wears me out more than working a week of late nights and back to back all nighters. I want so much to bounce back and get past the fatigue but it does not work that way. I guess when the three phases of chemotherapy, surgery and radiation were outlined for me I just assumed the four weeks I was allotted between my last chemo treatment and surgery for "recovery" meant RECOVERY! When in fact, it was just enough recovery to give me the strength for surgery, that is not the same as my 100% normal self. To be honest, I'm probably operating at about 50% of normal. I can give a big push for certain events but I have no stamina and when I crash - I crash pretty hard. I still need to work on patience with myself. I tell you all of this to give some background on my mental state leading up to surgery and also to give you a preview of my recovery which I think will be more chemo recovery than surgery recovery.

My mom and sister arrived on Wednesday night and Thursday I felt like we had to fill the day with fun things because I was afraid of being wiped out even more for the rest of their stay (which is kind of the purpose of their stay to begin with!). We managed the important things - we went to a bakery on the Upper West Side with the greatest cookies ever (Levain Bakery if you are interested), went to the hospital for my isotope injection, did a little shopping, picked up some soup for dinner and I was beyond worn out. No stamina. No endurance.

The isotope injection was mostly uneventful. My surgeon had explained I would need to report to the Nuclear Medicine department of the hospital to get this injection of isotopes so he could locate the sentinel lymph node for removal. What I should have realized, or perhaps I should have asked, is where they would be giving me this injection . . . since the purpose was to follow the path the cancer would take out of the breast I suppose it is implied that the isotopes would be injected into the breast. I just wasn't focused on this part. And as it turned out it was kind of awkward and a little painful. At this point I really don't have any shyness about all the doctors and nurses who need to poke, prod and inspect my breast but this particular doctor happened to be the voice doppelganger of a male friend of mine. They don't necessarily look alike but lying on an MRI table with my arms over my head and the doctor standing behind me, I wasn't looking at him as he talked me through each step he was taking and I giggled and felt a little mortified inside my head (and no, I am not saying who this male friend is). The injection hurt since it was directly into my breast but it wasn't just the needle that hurt - the isotopes stung as they were slowly plunged through the needle. But I've been through worse and it was over quickly so I can’t complain. I had to wait thirty minutes for it all to seep in or whatever and then they did a brief scan to make sure it was working. This particular MRI-like machine had a plate that lowered over my chest and head and as it got closer and closer to my nose I kept picturing that trash compactor scene in Star Wars and worried that the technician would accidentally lower it too far and squish my face. Happily she performed her job well and stopped it a few millimeters from my nose. 

I was scheduled to report for surgery at 7:45 am so Thursday night I took an ambien at 10 pm to get plenty of sleep and not have my nerves take over. But I underestimated my nerves and despite the sleeping pill, I did not sleep at all. And I don't mean I would sleep for a bit and wake up, I mean I never fell asleep. Actually, I did finally fall asleep – sometime between 530 and 6 am when I had to get up at 7, so I probably slept just over an hour. It was terrible. And it also meant I felt rotten walking out the door for surgery. When I don't get enough sleep my eyes get especially sensitive and do this weird thing where I cannot keep them open and I get these waves of pain trying to force all light out like I’m on the verge of a migraine but I don’t actually get the headache. I don’t know how to explain it but it is really awful. And without eyelashes my eyes tear a lot more than usual so I was a mess, dabbing a tissue at my eyes and trying to keep them open.

The surgery did not take place at the hospital, but across the street in the same building as my surgeon's office and the radiology clinic. On Thursday, as we sat in the Nuclear Medicine waiting area I created a bit of an expectation with my mom and sister when I told them how beautiful and comfortable my surgeon’s office is – not like the sterility of the hospital. They never got to see the surgeon’s waiting area. Instead, at 7:45 am we reported to the 4th floor Ambulatory Surgery office as instructed. When I opened the door I thought I must be in the wrong room. Or building. Or perhaps I had unwittingly walked into the movie Joe Versus the Volcano somehow – the scene at the beginning where Tom Hanks sits in that terrible little office with the flickering lamp. Instead of a hospital, we appeared to have walked into the waiting room of an auto repair shop. The woman at the metal desk to my right was immediately abrasive and before I had a chance to tell her why I was there or even figure out for myself why I was there she asked if we were all together and as we nodded she informed me “you only get one person.” I was already a wreck physically and emotionally from not sleeping and was not prepared for this level of surliness. I was also unprepared to send either of them home after they flew across the country to be with me for the purpose of waiting there with me and for me.

The room was uncomfortably small with the utilitarian desk filling the space to my right and six chairs with stained cushions in a small u-shape crowding the rest of the room to my left. There was barely room for the three of us to stand at the desk but I wasn’t sending either my mom or my sister home. I think I asked where they were supposed to go and she begrudgingly allowed them to both stay since there were three empty seats. Actually, there were two open seats and one seat piled with someone’s stuff. My mom and I sat in the two open seats and a man with long red hair that appeared to have been permed slowly moved the piles and piles of stuff he had out of the chair next to him. I just wanted to close my eyes and fall asleep. Or better yet, I wanted to skip ahead to the part where the anesthesiologist knocked me out. Instead the surly woman at the desk kept making me get up and down to hand over my credit card or sign something or just to annoy me. The room was uncomfortably quiet with the other two women waiting sitting in what felt like a shamed silence. At one point one of them answered her phone and the other tried to shush her up (I think they were afraid of being ejected by the woman behind the desk).

A very nice nurse rescued me from the tiny room to ask me a few more admission questions and she told me I could just keep my eyes closed. She then had me go in another awkwardly small room with a few lockers and two doors and told me to change only from the waist up. This puzzled me as I was wearing jeans and I couldn’t imagine I would be keeping them on for the surgery. She explained I would be taking the elevator so I would change out of the rest of my clothes later. The lack of sleep made me very foggy and I wasn’t clear on the fact that I would be returning to this same little room and I kept thinking I would be leaving my jeans and shoes in some other locker on another floor and apparently I muttered something about this to my sister at some point causing yet more confusion.

Once in my two hospital gowns – one with the opening to the back and the other worn over it like a robe with the opening to the front – I was introduced to an orderly who got me a warm blanket and draped it over my shoulders and together we walked back through the strange miniature waiting room and collected my mom and sister and took the elevator upstairs to the radiology clinic where I had that first mammogram that changed my life. A technician named Anna, introduced herself and took me into a room while my mom and sister waited in the very normal waiting. Once in the room I realized I was getting another mammogram. In all my research and questions this part was never disclosed. Or maybe I glossed over it or assumed when it said “mammogram or ultrasound” I was getting an ultrasound, but that was probably just wishful thinking. This was the worst part of the whole surgery.

Back when I had my biopsy in April, they inserted a tiny little “clip” into the tumor to aid in monitoring the tumor or in finding the location of it should it disappear. Anna explained the whole process and I think I almost passed out. She moved the mammogram machine this way and that and then had me sit in a chair (because I was clearly not capable of standing on my own) and she manipulated my breast into the machine and flattened it out. I then had to sit there, with it squished, waiting for the doctor to get the image in another room!! I was told not to move. I just squeezed my eyes shut and wished it all away. But this was just the beginning. Once the radiologist joined us in the small room (where I was still not moving or really breathing with my breast squeezed in the vise) he gave me a shot to numb my breast locally, then, once the area was mostly numb (more waiting with the squished boob), he injected a thick needle into my breast. With the needle still poking into me, they squeezed everything even more and took another picture and told me to hold still. I could glance down and see this needle sticking out of my breast and suddenly I was no longer tired and my eyes were not feeling so awful and I had this vision of them squeezing that machine too far and causing the needle to pop out and fly across the room. More fidgeting with the machine and the radiologist adjusted the needle once or twice to get it lined up with the clip and then he somehow used the needle that was already there to insert a long metal wire which was significantly thicker than the fishing line I was envisioning but smaller than the cable wire I initially thought of when my surgeon first explained the process. I thought I was done but the machine was once again moved around and converted and I was shifted into another possession for a couple more pictures to make sure everything was in the right spot – meaning a few more vice grip looks and then the wire was wound up a few times and taped into place with gauze and I was sent back to the waiting room.

After a short wait I was handed the films and we waited a bit longer for the orderly to come back and collect us. My mom especially liked this woman not just because her warmth was such a sharp contrast against the receptionist downstairs but because she sincerely told my mom she looked like our sister, not our mother. My mom does look young but doesn’t always believe it when we tell her. We were returned to the original waiting room where all of the seats were now empty but the red-haired guy was still there only now he was standing and talking very animatedly with the receptionist. Now that I could keep my eyes open I looked around the room some more and was even more shocked by how dingy, dark and bizarre it was. There were some Monet prints hung a little too high on a couple of the walls along with signs about patient rights. My surgeon is listed in New York Magazine as one of the top breast surgeons in the city and his office has photos of celebrities, is this where the fabulous people of New York have surgery? It is hard to imagine. Or maybe this is just one of those great equalizers. I just would have thought the great equalizer could have been nicer than the waiting area when one gets an oil change.

The surgery was the most uneventful part of the whole day – probably because I don’t remember most of it. The anesthesiologist explained that she would give me a sedative and that I would probably go to sleep but I wouldn’t necessarily be out completely. I told her I would prefer not to be awake and she said not to worry about it since I wouldn’t feel anything. She was right. After saying goodbye to my mom and sister, I was escorted into the operating room and the surgeon helped me onto the table while what seemed to me a large number of people bustled around the room. They put an oxygen mask on me and I was out. Except I have some strange memories about trying to talk during the surgery so I was clearly not out completely. Who knows what I said but I think I tried to tell them I knew they were cutting me open . . . or I was trying to ask them questions about what they were doing. I don’t know. But I did have a blue drape thing over my face because I remember opening my eyes at one point. Or maybe I didn’t since how could I have been talking with the oxygen thing on my face? At least I didn’t feel anything, I just worry what I may have said with all those drugs in me.

I woke up annoyed by the little oxygen tube in my nose but feeling fine otherwise. By the time I was completely awake my mom and sister were there with me and I was given apple juice and graham crackers and slowly sitting up. We didn’t wait too long before they told me I could change to go home. After I had changed my surgeon came to see me and told me how well the surgery went – no cancer, just normal breast tissue. He removed the tissue around the clip and my sentinel node but none of it appeared to be cancerous. It takes a week or so to get the final, definitive results from pathology but ultimately this is the best news we could get. He also commented that he thinks it will become standard to have chemotherapy before surgery because it is so successful. He also said (and I don’t think I realized this before) that I would have had a mastectomy had I chosen to have surgery instead of chemo back in May. I remembered him telling me surgery would be easier if I did chemo first but I don’t think I ever equated that with having a mastectomy. Ultimately, I’m happy with the result and pleased with the care I received – despite the weird waiting room.

We walked home after the surgery but I should probably clarify that the walk was very short and completely down hill. I live one long avenue block and two short blocks from the hospital and we walked very slowly with my mom holding one arm and my sister holding the other. I was home around noon and spent the rest of the day watching tv, sleeping and being taken care of by my mom and sister who fetched me food, water and timed my 30 minutes of icing altered with 30 minutes of non-icing. I didn’t have much pain as I took a Tylenol 3 and the ice and compression of a sports bra make it feel better as well.

Today I am still tired but I feel like that is just my normal state of being these days. The good news is I did manage to sleep all night last night which was a relief. I have a little bit of soreness today but nothing warranting pain medication since it is relieved by an ice pack. I am looking forward to tomorrow when I can remove the gauze and shower. I’m also one of those people who likes to look at what has been done to me so I am looking forward to removing the gauze to see how big the two incisions are.

I am also looking forward to watching the New York Marathon tomorrow with my sister to cheer on other people overcoming physical obstacles for a little inspiration. I still have a pretty long road ahead of me for physical recovery and I still have the final step of six weeks of radiation to complete so while I’m ready to celebrate having two out of three steps behind me, please be aware I still have a long way to go before I’m back to my self. I have high hopes for myself but I’m also having to remember to temper those expectations a bit with the reality that months of chemotherapy doesn’t disappear in a few weeks. As always, I appreciate everyone’s love and support and will continue to be a bit needy in that area for a few more months before we can definitively say it is behind us.


Mary said...

As I read this post I kept saying, "oh my goodness. Oh my goodness." Over and over. I hope hope hope for you to be done with all of this so soon. I can't believe that receptionist! Your details are such an eye opener, too, about what goes on.

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