Recovery

Well, it´s been over two weeks since my surgery and a lot has happened since then. Right now I am back at Clinica Alemana receiving my usual anti-body treatments. Luckily, this time I didn´t have to go through the hassle of actually checking into the hospital for treatment and was allowed to go to the outpatient oncology section of the clinic. So much easier and nicer! I´m seated in a comfy lounge chair with my mom and we both have a delightful view of the Andes covered in snow from last night´s rainstorm. I´ve only been here for 30 minutes and already the nurses have checked me in, hooked my port up to the IV drip and started my pre-medicines. I am hopeful that I will be out by early afternoon, which is encouraging since I would like to streamline this process as much as possible, seeing as that it will take place every three weeks for the rest of my life, or until the drugs can be administered in pill form… Since a lot has happened recently, I guess I should first take you back to the day of my operation: Tuesday, April 16th.
Besides my treatment today, my surgery was the first thing I have had done at the clinic that actually happened on time. The doctors told me to check into the hospital at 11:00, so after packing up all my entertainment goodies, off I went to the hospital with my entourage in tow. This time my Team Eli entourage consisted of Jon, mom, and my childhood friend, Jen. Jen arrived on Thursday night and we had a great weekend together reminiscing about the 22 years that we have been friends. Although the visit was brief, it was such a good time to catch up and talk about all the changes that have happened in our lives during that time period. Our discussions made me realize that even if I hadn´t been diagnosed with cancer, I already have had plenty of life experiences to add to my novel. Jen´s trip was filled with gossip and laughter and was such a great way to keep my mind off things, that I didn´t really even think about the surgery until the morning of.
My mom´s flight arrived from Miami on Tuesday morning and Jon took the day off from school so that he could pick her up and be present for the surgery. Luckily her flight landed on time and the two of them met us at the house just in time to leave for the clinic. When we arrived at the hospital admissions room, the four of us were shepherded into an underground hallway that ventured under the highway to the new wing of the hospital located on Manquehue Oriente. I wasn´t even aware that this new building existed, so it was kind of a treat to know my surgery was going to take place in brand new facilities. Even Jen was impressed with the new part of the clinic: giant windows and an open interior allow the rooms and hallways to be filled with natural sunlight, so it doesn´t feel dark and stuffy like many hospitals do. My room, itself, was very large and spacious with hotel-like touches and decorations. In fact, if my bed hadn´t had a pillow with the familiar green logo of Clinica Alemana written on it, I might have thought I was in some sort of Holiday Inn. I know that at the beginning of my treatment many people in my family were worried about what kind of medical care I would receive outside of the United States, but I am 100% sure that the Clinica Alemana rooms are much nicer than any I would have stayed in had I received my treatment back home. Being in such nice surroundings definitely helped calm me down a bit. However, I was still EXTREMELY nervous about my surgery.
The only time I had ever been operated on was when they put in my chemo port a few months ago, so I was very frightened about the actual surgery itself. Even though I know that mastectomies are a common procedure, I have watched enough medical TV shows (The E channel´s Dr. 90210 comes to mind) to have an unfortunate graphic image of my skin being spliced open, revealing veins, blood, and fatty tissue. I also know that any time a patient goes under anesthesia there is some risk involved. “What if I never wake up? What if I wake up and something went wrong during the surgery and I will forever be physically maimed??” Doctors are humans, too, and humans can make mistakes. Anyone who undergoes an operation has to put a lot of faith in the surgeons to trust that everything goes well, that no mistakes are made, and that if an emergency arises, they will be able to take care of it. For these reasons I was glad that it was Dr. Buhler that was going to be performing my surgery. I always feel at ease when he squeezes my hand and tells me not to worry.
As the time on the clock drew near, my hands were sweating, my heart was pounding, and I couldn´t speak from fear. It was a terrible, terrible thing having to say goodbye to my family in the room. There I was, sans make-up and wig, small, bald-headed and frightened, being wheeled out to the elevators in my giant hospital bed. I am so glad my mom was there to tell me to be a brave girl and that she would be there when I woke up. But at the same time it made me also hope that I never have to be a mother, waving goodbye to my daughter being wheeled out for breast cancer surgery at the age of 31… Anyway, as soon as I was loaded on to the elevators I tried to breath deeply, act normally, and forget what was about to happen. I think I even managed to feign a smile. The O.R. was brand new and humming with doctors and nurses, hooking me up to this machine and that. I felt like a piece of meat being splayed open on the operating table and hoped that I would not have to be awake for too long. The most pressing image I remember was a team of three nurses attempting to yank these hideously uncomfortable compression socks over my soccer calves and thighs. “Good luck!” I thought, knowing full well that my legs refuse to be encompassed in any article of clothing containing the words, knee-high. Luckily, the anesthesiologist finally found a vein in my hand and the drugs were administered promptly. I saw Dr. Buhler pull on his surgical mask and it didn´t take but about 2 seconds for the lights to go out and for me to awake, two hours later, in the surgery recovery room.
When I awoke I felt a sharp pain in my armpit, and my throat was tremendously sore and scratchy. When I drowsily told the nurses about the pain in my throat they responded that it was probably because of the tube that had been put in to help me breath. “Yikes! Do they always do that? I´m glad I was asleep”, I thought. The nurses then loaded me up with morphine and I spent the next hour or so in a daze, watching the room fill up with more recovering patients. Unfortunately the scratchy tickle in my throat persisted and I had to cough, which in turn really hurt the side where I´d had the operation. In addition, I felt extremely nauseous and hoped that I would soon be allowed to go up to my room where I could vomit in private. Listening to the woman moan and groan beside me while I attempted to keep down my stomach and prevent myself from coughing was extremely irritating. “Shut up!” I thought. “We´re all in pain, here. Geez… Give her some more morphine or a muzzle!” Fortunately I dozed off again and was back in my hospital room in no time.
By that time it was about 6 in the evening and Jen had left for the airport. My mom and Jon were in the room waiting for me and began to bombard me with information about my surgery. The only thing I was interested in asking was, “Was he able to save my nipple?” Buhler had said, going into the surgery, that if the tumor was too close to the nipple tissue that he would have to remove it. From research I knew that pretty much all parts of the breast can be reconstructed, except the nipple, so I was hopeful that they would be able to save it. Luckily they had. In fact, they didn´t even have to make as large an incision as previously thought. So when I am all healed I will only have a scar on my nipple tissue and one under my arm where they removed the lymph nodes. Both scars should be relatively unnoticeable, unless you look very closely.
The first three days in the hospital recovering from the surgery were quite an emotional roller coaster. I was pleased that I wasn´t in too much pain, but anyone who has had surgery knows that the first sight of yourself post-operation is an unpleasant shock. I remember writing, in a previous blog, that watching my hair fall out was the most disgusting physical thing that has happened to me. I take that back… hauling around the bloody, puss-filled, wound drainage compartments attached to my body by two long tubes was definitely more disgusting. Having to empty them and measure the liquid with a syringe after they sent me home from the hospital was worse… just ask my mom! I have a lot more respect for nurses after this experience, and often wonder why anyone would want to have that job. But I am grateful that some people don´t mind dressing wounds, helping people shower, or emptying chamber pots. I certainly was not a fan of needing someone help me to do these things. In fact, the first time I cried was after my first assisted shower. I felt like such a baby, and I also didn´t want anyone to look at my hideous, Frankenstein-like body.
My second emotional set-back happened after my first visit from the physical therapist who came in every day to teach me some arm exercises I can do to rebuild sensitivity and movement in my left arm. Before the operation took place I don´t remember the doctors telling me a whole lot about the side-effects involved with my surgery, but I gather, from what the therapist said, it might be awhile before I am able to do regular activities that involve heavy use of my left arm. According to various people, full recovery of arm movement may take a few months, a year, or I may never be able to move it quite the same. In addition my entire underarm and side of my torso feels completely numb. It´s a very strange sensation. I can touch my arm and know that I am touching my arm, but I can´t really feel anything. When I walk and try to hold my arm still against my side it feels like there is some sort of apple or tennis ball in between me and my body. The best way I can try to explain the feeling so you might understand is that it feels like the heaviness of your gums and tongue following a mouth procedure involving Novocaine. In order to help me get feeling back in the underarm the nurses have suggested I rub the skin with a towel or sponge (something with texture but not too harsh). The first time I tried, I honestly felt nothing, but now, two weeks later, the nerves seem to be recovering somewhat. Looking back, I guess it´s probably better that they don´t tell patients all the details about recovery time until after the surgery, because it doesn´t really matter. It´s not like hearing about the side effects would have prevented me from getting the procedure done. In fact, it probably would have made me dread the event even more, so for that I am thankful.
The most interesting thing I learned from the therapist´s visits was that because my mastectomy involved the removal of the lymph nodes from my left armpit, the recovery from the surgery is going to be a little bit more difficult. In case you know nothing about lymph nodes, like me, they are a vital part of the immune system. They help to detect attacks on the body from foreign substances and are essential to ensuring a proper response of the immune system. Cancer cells spread when they invade your lymphatic system, and since mine had been compromised, they needed to be removed. This means that my left arm is now exposed to infections until the rest of the lymph nodes in my body have learned how to compensate for the loss of the ones on my left side. Until then I am not allowed to wear tight clothing or rings on my left fingers as it may impede circulation in my arm. I also have to be careful to avoid cuts, bruises, or bug bites on that arm. Nurses are not allowed to check my blood pressure on that side and I am not allowed to lift anything heavy with my left arm. I don´t know how long it´s going to take for my body to compensate for those lymph nodes, but so far I haven´t had any problems. It is really frustrating to think I may never recover full arm movement because, as I have since realized, most physical exercises and activities require the use of both arms. About the only thing I can do is walk, which I do enjoy, but I am sad that I may never be the active person I once was. What if I can never ride a bike, swim, do kickboxing, lift weights, etc? I know that eventually I will probably be able to do all these things, but I hate feeling like an invalid. Sometimes I feel like this whole thing has aged me about 10-15 years. I don´t feel like a thirty year old anymore, but more like someone in their late 40´s or 50´s. Things that I never thought I would have to experience until much later in life are rearing their ugly head. Sometimes I look at pictures of me taken two or three years ago and I get very sad and wistful. What I wouldn´t give to have my long, blonde, hair back, perky chest, or tan, toned arms and legs… sigh. Hopefully one day… although I know that it may be unrealistic to expect that. Our physical appearance changes as we get older, this I know, but I just didn´t think it would happen when I was so young.
My third emotional setback, and sadly, probably the biggest, was when I got home from the hospital and tried to resume life as usual. First of all, cooking and carrying around pots and pans was difficult and required assistance. I was able to do it, it just was a little more tedious and painful. Secondly, I can´t help in many of the household chores like walking the dogs. If anyone has ever had the pleasure of taking my two doggie-dos on a walk, you would know how much arm strength it takes to control them. They both get so absurdly excited trying to sniff out cats and race each other to the park, that most of the time they seem like they are training to mush thousands of miles across snow and ice in the Alaskan Iditarod. So yeah, I guess dog walking will have to continue to be Jon´s task for a while. In addition, getting dressed and putting on socks and shoes is very difficult and usually requires assistance. Being a fiercely independent person I find this to be humiliating. The first day back from the hospital I stood in front of my closet for a good hour trying to figure out what to wear. Since they won´t start filling my expanders with saline for a few weeks I am currently completely lopsided. So I can´t wear anything that is too form fitting, or it just looks completely ridiculous. Oops- there goes about 4/5ths of my closet… Really, about the only thing I can wear are loose-fitting button down shirts or zip up hoodies and jackets. Anyone who knew me during my twenties would agree that those items of clothing are not really a staple in Eli´s closet. So, I immediately sent out a request to friends asking if they had any button down shirts. Yeah, I know- it´s not the grunge days of the early 90´s, so most people don´t own these items. But luckily, some people had some shirts I could borrow and I was able to find some others at the Gap, so I will at least have something to wear for a few months. Luckily it is winter and easier to hide my body under baggy clothes and not look completely unfashionable.
The other tricky thing was trying to figure out what to wear UNDER these baggy shirts and sweatshirts. During my meeting before the surgery I had asked the plastic surgeon for some information on bras I could wear with padding until after the reconstruction is complete. His secretary gave me exactly one number of a store to call. When I called that number, I explained that I was a patient of Dr. Schwember´s, had just had a mastectomy, and needed something to wear under my clothes for a few months until my breasts are matching sizes again. The lady answered, unhelpfully, that this was a prosthetics store, and that they don´t carry bras. “Really,” I said. “Do you know where I could find something like that here in Santiago?” Without even thinking about it, asking a colleague, or bothering to care, the store attendant responded shortly, “No. We don´t carry bras.” “Thanks for nothing,” I thought. You would think that someone who works in a store that carries supplies for women with mastectomies might know that information or want to help out someone who is trying to hide the physical loss of a body part, but sadly Chilean customer service is quite lacking. In my two years of living here, I would say that is the most frustrating thing about Chilean culture.
When living in a foreign country I usually don´t try to judge the culture or expect it to be exactly the same as my own. I usually try to adapt to their local traditions and customs as much as possible, because it´s not my country. Who am I to say what´s right and what´s wrong… But I just find this uncaring attitude regarding customer service to be downright rude. I feel the same way about the secretaries and receptionists in Dr. Majlis´s office. I can´t tell you how many times I´ve gone up to them with questions about scheduling appointments or making sure my insurance is covering my treatment, and have encountered three or more people completely unwilling to go out of their way an inch to help me. I´m sorry, but if I worked in the cancer section of a hospital, and if a young patient who clearly is not Chilean and is clearly being treated for cancer approached me with a question, I think I would try my very best to be sympathetic and help that person. Or at least smile at them and not look at them as if they were stupid, or an alien. But no… usually I end up going home frustrated, stressed, or in tears, and then have to figure it all out on my own…it´s not that the secretaries are unfriendly or rude, exactly; they just are completely unhelpful. Anyway, enough of my rant about customer service in Chile…. The long and short of it is, that I do not have a special mastectomy bra, have absolutely no idea where to find one, and will just have to be content wearing tank tops under my clothes for the time being. So for right now, I am mostly “free-boobing” it a la 1960´s, so to speak. Knowing that my strange physical appearance is only temporary and that I will eventually have an inflated boob again has been helpful, and has, for the time being, prevented me from going to pieces.
Alright, well, I think I have caught everyone up to date with the surgery and my recovery, so I will sign off now and promise to write again very soon with more information about my progress and also to share some other exciting news that I found out last week. Stay tuned!