I haven’t been writing at all while going through my radiation treatments. At first it was because I was busy recovering from surgery, enjoying the attention of my parents while they were here to help me along and then the daily radiation treatments really wore me down. I went back to work. Started work around 7:30-7:45, off at 2:00pm, jump in the car, my Dad picked me up a lot of the time, race to the hospital and get zapped. Trudge through traffic to get out of the city and back home…plop on the couch and wonder if it was too early to go to bed.
At first the radiation didn’t bother me too much. I did start to get a little sore throat and was concerned about getting sick. After a while it didn’t go away so I mentioned it to my doctor who said everything looked normal. I let my radiation oncologist know about it and found out that since my esophagus is deviated due to my enlarged thyroid the radiation was hitting down deep in my throat and burning me a tad. After a while it was hard to swallow and I was given liquid Vicodin. Okay, that worked but I mostly drooled on myself when I took it…yeah, not going to work. I did finally get a lower dose pill form that I can function with. I did 25 treatments on four spots – my armpit, clavicle, over the (missing) breast area and my chest wall near my sternum.
A few days before the 25th radiation visit I mentioned how glad I was that I was almost done as the burns were getting pretty bad on my skin. Then they told me I actually was going to do 28 cycles…so okay, three more. Not sure why it changed, but okay. Let my boss know about it and went to the next three sessions. Then the oncologist tells me that I have five more “boost” treatments. I said okay, whatever it takes. I have to admit I ended up getting upset about it though. I was wondering why. Did something show on my last CT? Was it not working? What was going on? So I put in a call to my regular oncologist and let her know my concerns. Turns out it’s pretty much a normal procedure to do these boost treatments and it was mostly planned since the beginning. I guess someone just forgot to tell me. I have learned that I don’t like change very much these days. I’m almost always staying positive about all this as long as nothing changes…changes just freak me out. I did do some research on the boost treatments and liked what I read so I’m actually glad they did them.
I had my last radiation treatment Tuesday, December 21, 2011!
I’m having a little extra burning going on from the last treatments, but the other areas are healing up nicely. I figure in another few days the major burns should start healing up. I have an ultrasound of my Thyroid on December 30th, just to make sure it’s just big for the heck of it and I’m not having a problem. Then I follow up in one month with the radiation oncologist and in three months with my regular oncologist.
My mother, father, sister and I are doing a half marathon in February in Florida http://donate.breastcancermarathon.com/2012Marathon/thefarkelfamily . We are really excited about doing this together. It’s something my sister Della has been doing for a while now – I’m so glad to be here to be able to join her this time.
Pain, nausea and confusion, those feelings overwhelmed me when I started waking up in the recovery room. It took me more than a few minutes to remember where I was and why I was there. I groaned a little and a nurse came over and put a button in my hand and told me to push it whenever I was in pain…I pushed it several times. The nurse told me it would only work every ten minutes…”so I can’t off myself” I say…a few people giggled and I opened my eyes a little. There were several people standing around me, checking my vitals, pushing and moving me around and then I threw up. Two or three people went into action and cleaned me up and told me everything was okay. I fell back asleep or passed out…not sure, but things went dark. I opened my eyes again and immediately pushed the lovely little button in my hand. Ahh, that felt better and then I threw up…sheeh. The nurse said that it would get better, it was just the anesthesia. After a bit they decided to take me up to my room. I was glad because I wanted to see Telle and my family. I saw a clock on the wall and it was after 9:00pm. I was a little concerned since I thought it wasn’t supposed to be that long of a surgery, I watched the elevator doors open and they pushed my gurney out into the hall, I said, “I think I’m going to be sick”, and then I threw up. Okay, this was getting gross. Things went dark again.
I woke up in my bed in my room. Telle was there telling me everything was okay, I was really glad to see her. I said hi to her, pushed the little button again and the pain backed off a bit, you might be able to guess what happened next…you’re right…I threw up. By now they have put a little container near my neck so I can just turn and let it flow. It was like transmission fluid..bright green. I have to give Telle a lot of credit helping me with that. She has a really hard time with anything gross like that. Thanks so much Telle! The nurse asked me my name, I told her it was Kelly, but they could call me princess. LOL, I have no idea where that came from. I’m guessing the meds were making me goofy. When Telle went home for the night I told her to take my phone with her. Now I know that’s not like me!
My Mom and Dad were there, my son John and his girlfriend Judy came by too. My legs were in these airbag type massage things that were very comforting. I was thinking about how I might get a set to go home with. Now the pain was coming and going depending on when I was able to push the button, and so was the nausea. When the nurse came in next I told here I was beginning to think it was the pain medicine that was making me nauseated. The pain would come, I’d think I don’t want to get sick again, but after a minute or two I would just push it anyway, what’s a little green puke anyway?
During the night they came in and out, checking on me, drawing blood, and finally bringing me a bed pan. Now I have never used a bed pan and wasn’t sure how that was going to work. I couldn’t roll to one side or the other, both my arms really only seemed to work from the elbows down. I was able to lift my butt a little though so things worked out. I have to say that was something that made me giggle.
I wrote this part a while back as I have been really busy with work and radiation. May family has been here to help me out and well things have just been crazy. I have access to my laptop again so I’m going to update you all on what has been happening since I came home from the hospital in the next few days. Thank you for being patient.
Thank you again, I can never say it enough, to all my family and friends for their constant support and help. I love you all. – Kelly
I tried to stay up late the night before surgery since I could have nothing after midnight, no food, no water, no anything..so I, of course, promptly fell asleep around 9:30pm…hmm. I woke up around 5:50am and the thirst began. I tried not to fret because I knew I’d be getting an I.V. set up as soon as I got checked in and set up at the hospital. You see I had already forgotten that my hospital tends to like to dehydrate you.
We head out around 10:00am and arrive all ready about 10:30am. We check in, get my arm band, Telle and I are sent back to the surgery prep room and we began the dehydration process. There was confusion as to where to start my I.V. as Dr. Salti (my surgeon) had mentioned that if my port was in the way at all he would have to take it out. No one wanted to make any decisions as to where to start the I.V., I’m guessing since no one started one at all. A few hours later they called me back to the radiologists. I’m nervous and thirsty but at least things are getting started. Telle is with me and the nurse explains that they are going to inject radioactive fluid into my breasts above and below each nipple. I blinked a few times absorbing this information and then asked if it would hurt. She frowned a little and said I’m afraid so. Telle can hold your hand while we do the process she says. Now I’ve had my share of pain since starting this journey, I’m a big girl and how bad could it be anyway?
They lay me on this long table that retracts into a big machine…a gamaraywhatchamacallit, that will then scan my breasts and lymph nodes to see where the radioactive stuff travels to. This helps them know which lymph nodes to take out during the surgery. I climb onto the table, my arms over my head, hands together and Telle gently holding them. In walks the radiologist with his “devil tools” (that’s how I think of them now). He says good morning, how are you, blah blah. They give me the first injection in my areola just over my right nipple, I think that may have been when the main bruising on Telles fingers happened. It was exactly like someone took a white-hot poker and pressed it into my nipple and down into my armpit. I hear from somewhere far off, “you’re doing well”, then a second poker in the same nipple. I’m pretty sure I’ve now damaged Telles fingers, but I try not to move and they jam the torture device into my left breast twice as well. I’m thinking “I’ll tell you anything..yes I did it, it was me, I give up”. And then about 30 seconds later the pain let up. The table was moving sliding me along with it. My eyes were closed and I couldn’t seem to open them. The nurse asks if I’m claustrophobic and I answer no. I’m breathing slowly and starting to come back from what ever safe place my brain had taken me. I guess tears were rolling out of my eyes and into my ears as the nurse kept wiping something from my face and telling me it was okay. I opened my eyes a little and found out that I might be “a tiny bit” claustrophobic…wow that machine I was in was touching my nose. I think I giggled a little and they asked again if I was alright.
They put me back in my wheel chair and rolled me back to the surgery prep room to wait some more. I think it might have been around 1:00pm. We sit and watch some T.V., I ask about my I.V., they are checking on it I’m told and then this man comes in with gloves, not doctor type gloves, but those gloves from those shows where the hazmat team comes in to clean up a spill, puts on a mask and vest to match and brings out an actual Geiger counter. He waves it over my breasts and it’s making those sounds you hear on TV when you are supposed to run…he waves it over my armpits, makes little marks on my skin and says thank you and good luck. I’m pretty sure I giggled again. I’m dehydrated pretty good by now, so maybe that was it.
We wait some more and I think they came to get me around 3:00pm. They took me to the final surgery prep room where you are just behind curtains. I can hear the man next to me, think he was having some kind of knee surgery. He was being so grumpy and uncooperative. I kept thinking why would you piss off the people who are about to cut you with a knife? I guess you can’t please some people.
The anesthesiologist, the nurse, the 3rd year medical school student, the surgeons assistant and finally my surgeon all came by to say hi. They asked if I had any questions, asked where my I.V. was…I shrugged, no one knows where to start it I answer, they say they will find out. The student came back and was very nice. I was joking about something and she laughed a little, then started to hiccup. Ut OH she says. I asked what was wrong. She said she got the hiccups in the last surgery and the surgeon was very displeased. I can imagine that might be distracting so I tell the assistant to maybe scare the student…not while they are working on me though I say. Everyone laughs. I just want my surgeon to be as comfortable as possible while he’s working on me. Finally another sleepy time doctor comes in and asks, where’s your I.V.? Oh never mind he says, I’ll just start it. They finally get an I.V. in my left hand and before I know it we are rolling down the hall.
I look up and watch the lights roll by, say a little good-bye to my two breasts and we burst into the operating room. They have me slide over onto the table and start putting leads on my chest. One of the people, the student, the assistant, the sleepy time doctor, I’m not sure says something and they sit me up and take off the leads from my chest and put them on my back…I’m thinking I’m glad someone figured that out before Dr. Salti walked in, wouldn’t want him to be displeased.
Two more nights before my surgery. Two more nights with breasts. Two more nights before I move. Two more nights with breasts. Oh, I think I might have said that twice. I’ve been as upbeat as I can about this whole thing and believe me I’m anxious to get this over and done with asap, but there is still some part of me that morns for the loss of these two breasts. They seem to know something is up and are rebelling by getting cysts all in them, making them achy and sore…well for two more nights anyway.
I ordered these camisoles that have pockets in them for the drainage tubes and bags a while back. (Drainage tubes…yuck) They only had one in stock in my size (medium is so hard to come by) and had to order the other one. I’ve tried several times to meet up with them to pick up my second one but they kept insisting I needed an appointment to pick them up as I needed to have a fitting for some prosthesis. I finally had my appointment today and guess what…they couldn’t do a fitting because you have to have had your surgery first…sheesh…you think they would have figured that out when I said to them I needed to see them on Wednesday because my surgery was Friday. Anyway, I go back to them once the tubes come out.
I’m also in the process of moving. Thank goodness my parents are here to help me out with all of this. They actually drove their car back down to Florida to pick up their van and drove it back to help with the move. I couldn’t ask for better people in my family. There are times in your life when family is the most important thing, this is one of them. I have to say that things could be so much more stressful, but because of them I’m making the most of every single day. I wouldn’t have it any other way.
All of this has put an added stress on my family and Telle and I’m sorry you guys are having to go through this. Thank you for all your support and continued tolerance for the ups and downs. I couldn’t do this without you.
Two more nights.
Well the last of the chemo is done, thank goodness, and now I have surgery next Friday. It’s been a whirlwind of ups and downs the last few weeks. My son Christopher graduated from Officer Training School in the US Air Force. It was a moving ceremony and my heart was filled with pride for him and his beautiful family. I had such a lovely time visiting with my grandchildren Amy and Lilly and daughter-in-law Kallie. The trip down and back with my parents was fun and distracting and I really enjoyed every moment.
I thought I had managed to make it through my whole chemotherapy treatment and not lose my eyelashes, but this last one seems to have pushed them over the edge. They didn’t fall out completely but the most of them have abandoned ship. I don’t actually look in the mirror very often lately, because some strange bald woman keeps looking back at me so I just try and avoid her. But once in a while I forget, see a mirror and take a moment to look in. I kind of giggled a little when I saw my eye lids without lashes. It was kind of a crazy giggle, I’m hoping no one heard me.
I came back from the trip to Alabama and had my CT. I had an appointment with my oncologist and surgeon on Wednesday and got the news that everything looks good and we are moving forward. My oncologist stayed in the room with me a little longer than usual and took time to tell me she was glad I was so positive, however it might not be as easy as I thought to heal up from this surgery. My mother was there with me and offered up that I try to do too much. I do get a little hyper and overly bubbly when I’m nervous so I’m going to take a chill pill and listen to my doctors and parents and take it down a notch. I was kind of hoping I could get back to work in two weeks, but it’s looking more like four at this point. I guess I’ll take it one day at a time, do everything I’m supposed to and I’ll heal up when my body is ready.
After my surgery I’m scheduled for six weeks of radiation. they are going after the lymph nodes under my right arm, near my collar bone on the right side and on my chest wall under my right breast. I’m told I will have fatigue and some skin irritation. All I know at this point is it has to be better than chemotherapy. So far things are going well. My tests are coming back better and better, I’ve changed my diet completely and I’m working on getting rid of all unnecessary stress in my life.
I have the most wonderful family anyone could ever wish for and that is what is keeping me in such great spirits. No matter how things turn out I know I’m loved and knowing that makes everything okay.
Thank you Mom and Dad for being here and taking such great care of me, for making me smile, making me eat right, making me rest when I need it and just being the great parents you are. I love you.
Thank you Della for being the bestest sister in the whole wide world. Thank you for all the time you spend texting me, calling me, flying in to see me again and again, for all the packages and cards and for making me feel so special. I love you.
Thank you Johnathan for running to the store for me at all hours of the day and night, for putting in and taking out and putting in my air conditioner, for setting my computer up near my bed so I can reach it and for all the cool stuff you put on it, for cooking for me, for carrying everything up and down the stairs for me, for being a wonderful son, and for all the little things you do to make things easier for me. I love you.
Thank you Christopher for checking on me always, even when you were going through such intense training, for bringing your beautiful family to see me, for having me be a part of your “moment” (pinning on your bars was very emotional for me), and for being a wonderful son. I love you.
Thank you Telle for dealing with my ups and downs, hot flashes and chills, for making me eat when I just don’t want to, for letting me cry and yell and listening to my silliness and taking care of me through all of this. I love you.
Thank you to all my friends and family for letting me know how much love there is in the world, for keeping me smiling and keeping my spirits up. You are the reason I live and breathe every day. I love you!
Loving and being loved is the only thing that is really important and I’m lucky to have so much of both.
It’s hard to believe I’m saying I’m about to have my last chemotherapy session next Thursday. Looking forward from the first it seemed such long away and now I’m almost done….with that part at least. I have to say Taxol has been a little easier on my body than the “Red Devil” chemo I had to endure the first four sessions, but they each come with their own side effects. The muscle cramps and headaches are the worst part for me anyway. My mouth has pretty much recovered and I can eat most anything I’m craving. I’m still only eating a little at a time and I’m staying way on the healthy side. I have totally given up soda and am eating all kinds of vegetables I never thought I’d be able to stand much less enjoy. The best part is that my whole family is in on the whole healthy food thing and it keeps us all in line.
My last chemotherapy treatment is next Thursday, September 1st. A few days later my parents and I are driving down to Alabama for my son Christopher’s graduation from the Air Force Officer Training School. My other son John is flying down a few days later to meet up with us. My son John and father are giving my son Chris his first official salute as an officer. My granddaughters Amy and Lily along with their mother Kallie will be there as well. It’ll be a small family reunion and a huge boost to my healing process I’m sure. I’ll have a few weeks off from treatment to allow my body to rest up then my surgery will be my next hurdle. It looks like my double mastectomy will take place the last week of September or the first week of October. We are moving to a quieter area just before that, something that I don’t have to walk up three flights of stairs to reach…whew. I’ll get a few weeks to recover from that then it’s six weeks of radiation (5 days a week)…now that will be interesting.
I found out something just recently that hit me really hard. If you’ve been reading my blog at all you know that when this all started I did not have insurance and started getting help through the Howard Brown Center and The Illinois Breast and Cervical Cancer Program from day one. They put me in a special program, got me insured through Medicaid and straight out saved my life. Christina Santiago was one of the women that put me on the life saving path I’m on today. Christina Santiago, a well-known LGBT advocate and the manager of programming for Howard Brown Health Center’s Lesbian Community Care Project ( LCCP ) , died Aug. 13 when strong winds toppled a concert stage at the Indiana State Fair, killing five. It was shocking to hear this news and I have to admit it made me feel a little guilty. Who am I to be here, what lives have I touched so greatly that I should be here and she should not. It’s grounding to say the least and I can tell you I find it very hard to complain about anything happening in my life at this point. I’m here, I’m alive, I have this time with my family and friends and I owe that in part to Christina. http://howardbrown.org/hb_donate.asp?id=1900
I keep seeing signs, if you will, of just what this short life we have here on this earth should and could mean to each of us. We should love and care for one another. We should be grateful, even joyful for every single moment we have. We should stop rushing around, pushing others out of the way to get to that next whatever it is we need to do and we need to (silly as it sounds) stop and smell the roses. My mother and father have driven up from Florida to give me a hand through this next part of my journey. The make sure my every moment is safe, healthy and happy. They are the best parents anyone could ever wish for. My wonderful sister Della has come twice already and plans to come again. She continues to call, text and send me little gifts to keep my spirits up. My girlfriend Telle checks on me constantly granting my every wish and need. She has now found out that she needs to make sure I have my ID, purse, etc..as my “chemo brain” has gotten a little worse. My friends email, text, call, and facebook all the time. My son John fetches and carries anything heavy, comes and plays the guitar for me and generally tries to keep me entertained. My son Chris calls all the time to check on me and keeps my spirits up with such fun stories of the training he’s going through now. My co-workers and boss go way above and beyond to make my life easier at work and are always making sure I don’t over do it. I have absolutely nothing what-so-ever to be unhappy about. I’m the happiest, luckiest, and soon to be healthiest girl in the whole wide world!
I started my new round of chemo on Thursday. No more “Red Devil”, now I’m on Taxol. I went for my normal visit ahead of time with Dr. Mauer and she let me know my CT scan came out good. I was a little disappointed as I wanted to hear her say how wonderful it was, however she’s a reserved oncologist and I guess they just don’t get too excited about these things. I however did have a chance to see my results and found them to be fantastic. The CT of my chest doesn’t even mention the spots on my chest wall that they had seen before. My tumor is way, way smaller and I feel very positive about the way my treatment is going. They did my normal labs before hand to make sure my blood was stable enough for the chemo and we headed back to the “Chemo Room”.
They drug you up pretty good before the infusion as Taxol tends to cause allergic reactions, so I ended up sleeping a lot through the three hour infusion. I didn’t have any hives this time and felt pretty good when we walked out. We stopped by and picked up my Neulasta injection from the specialty pharmacy and headed home. I think it was about an hour later that the power went out…uggg. It was 95 out, the sun was boiling eggs on the sidewalk and we had no power. I called the power company and was told they knew we had a problem and it would be two hours before they could get out there. It was a weird power outage as we had one overhead ceiling light that was working and the power in the hallway worked. My son lives one floor below me and his kitchen had power, so his refrigerator was working, giving us a place to take our food. I found a power outlet that worked in the hallway, ran a long extension cord down and at least got my little window unit air conditioner working. Every two hours I called the power company and it was always going to be another two hours. It never did come back on that night.
After chemo I’m supposed to be away from people as my white cell count drops leaving me open for infection. However my room was the only one with any air so everyone ended up sleeping in our room that night. I prayed I wouldn’t get some nasty infection from a cough or sneeze. The next morning I called again to let them know it was a medical imperative that they get someone out here, not only was a cancer patient here but an eight month old baby…we needed our power on. Some time after 4pm they arrived, did some work outside and then told us there was nothing else to do, it was a building problem. So then we started calling the building owner. I took my Neulasta shot like a good girl, ate several small meals and waited for the power to come on. They ended up getting it repaired sometime around 9pm Friday night. It was then my headache started.
It started as an annoying headache which I attributed to the heat and frustration. I took Tylenol and went to sleep. The headache woke me a few times during the night but I didn’t think too much about it until Saturday morning when the light started shining in the room and my eyes and head really started hurting. Of course these things happen on the weekend…always. I took more Tylenol, then after a few hours Advil. I took my temp and it was 100.6. You are supposed to call the doctor if your temp is over 100.5, but I gave it a little more time and a little more Tylenol and it started dropping. Then I got a terrible case of diarrhea which I thought could be the Taxol. I stayed in bed the rest of the weekend and tried not to take too much medicine and called Dr. Mauer first thing Monday morning as even walking was causing my head to pound and my eyes to ache. I really only wanted something a little stronger for the headache, but she sent me to the hospital…joy.
I was more prepared this time with my med list, my medical history list and a no you’re not going to touch my port attitude. They were quick, efficient and seemed very concerned. I had blood tests and a CT scan of my brain…the only part of me that hadn’t been scanned so far. Everything looked mostly okay, except my white cell count was high. They didn’t know if it was an infection or from the Neulasta shot so they admitted me. I was going to have an MRI a few more labs and a night on the oncology floor.
Now I have to say everyone was extremely nice, ever so professional and did everything possible to make me happy. I was starting to wonder if there was a flag on my chart because I had called the hospital to let them know about my last visit and how concerned some of the events had made me. I was treated very well. It was the next morning before I had my MRI as the ER was very busy that night with emergencies. They kept me comfortable with Morphine for the pain and Zofram for the nausea. They fed me and kept me hydrated. By Tuesday morning my headache wasn’t so bad and I had been examined by dozens of physicians, new and old and they each had their own idea what might be causing my headaches. They came to get me for my MRI. Now this was my first MRI of my brain and although I new it would be loud I had no idea how that would effect my headache. By the time I was done, about 45 mins in this banging machine with bright lights shining in your eyes I was in terrible pain. More morphine and zofram and I slept for a few hours.
Eventually I got my results and my MRI was normal, so it is either the Taxol, the Neulasta shot, or new onset migraines. They sent me home with a prescription for Imetrex after an EKG to make sure my heart could take it. I was very glad to see my bed and be at home. I’m happy to say my headache is gone today and my only issue is constipation from all that morphine…heh if it isn’t one thing it’s another.
I only have three more chemotherapy visits and then a few weeks off for good behavior and then my surgery. My wonderful sister is coming back to do chemo number 7 with me and my lovely parents are driving up to do the last one with me before driving me down to my sons graduation from Officer Training School. I’m feeling very positive and extremely lucky to have such a great support system in my family, friends, coworkers and my steadfast partner Telle. So many people do not have this kind of great support and love from so many people and I honestly feel this is what is going to push me over the top and lead me to a cancer free life.
I know my family worries about me with all these little events that keep happening and the wonderful thing about that is that I have someone there to worry about me. I love you all so very much and I have to say that all your support has made this cancer an actual blessing instead of a curse. I have never felt so loved, so cared about and so important. Thank you for being there for me, thank you from the very depth of my heart. No matter what happens in the end, I feel like the luckiest girl in the whole wide world!
The last several weeks have been a whirlwind of chemotherapy, dealing with the side effects, working and trying to continue somewhat of a normal life in between. I had such a nice week last week as my sister Della came to visit. She came to see me from Arizona on Sunday and stayed through Saturday. She wanted to experience my week with me from the good while my energy was up to the bad after chemo. We had such a great time going to the pier, the Shedd Aquarium, shopping at Macy’s downtown Chicago and fun stops at all kinds of restaurants to grab breakfast, lunch and dinner. I have the sweetest sister in the whole world and her sweetness truly shined while she was here. She made sure I wanted for nothing and kept me smiling the whole time. She took public transportation with me to work, just to see what my commute was like and kept herself busy during the day while I worked. We met up with my boss/friend Dr. Karam and had a late lunch the next day and everyone enjoyed her stories of adventure as a ranger in the Grand Canyon. It’s impossible to put into words how much her visit meant to me, suffice it to say she is a special person and deserves every good thing that could ever come her way. I love you Della!
Della and I showed up for my fourth chemotherapy, the last of the “Red Devil” on Thursday. My regular oncologist was on vacation so the other physicians were taking up the slack. So far my visits have always gone smoothly, since this one didn’t seem to be heading that direction I was even more grateful for my sisters positive attitude as she kept me smiling through the whole thing. Not only were they incredibly behind, the waiting room was under construction so they directed us to the hallway to wait. All the chairs were taken so we plopped ourselves on the floor. I’m pretty sure I was the youngest person there and I was feeling pretty good that day so we made a good time of it and chatted and giggled the whole time. When we finally got back to my chemo session things went pretty much as normal. Della is a Ranger as I said before so she deals with all kinds of crazy medical situations and was very interested in the whole procedure. I think my oncology nurse was even more interested in my sisters adventures. I had my usual hives, benedryl treatment and Della drove me home. I couldn’t have had a more perfect week. I was very sad to see her go home.
The next couple of days were a little harder than before, I was a little more tired and just felt pretty yucky. I’m off on Wednesdays so I ended up sleeping almost the whole day away. I got up on Thursday to walk our dog and had an especially hard time making it around the block. After coming up the stairs to our apartment I pretty much collapsed on the bed with my heart beating like crazy. After a bit it calmed down and I finished getting ready for work. The walk to the car was harder by the moment and I started panting like a dog. I slept most of the drive to work and once there my coworker suggested I call my oncologist. I talked to Barbara, my oncology nurse and she said it wasn’t normal for me to feel like this and to head over the the office. I worked until lunch and then Telle came to get me and drove me over the the office.
After getting into a room Barbara had me walk a few laps around the office to check my O2 sat, check my blood pressure and temperature. Dr Mauer came in and let me know again that it wasn’t normal for me to feel like this and I needed to have a CT to check for blood clots. To save me from having the test, then heading home, then calling me back for treatment they just sent me over the the ER to speed things up. I’m a medical assistant so this made perfect since to me. We walked over and got right in…I felt like things were going to be pretty smooth from there…ha.
We checked in at the ER, they took me right back to triage, plopped a mask on my face and put me in reverse isolation.Right away they came to give me a chest x-ray then a nurse come in to start an IV line. The nurse asked me if my port is deep or shallow. Now no one has ever asked me that before so I told her I had no idea. She was able to put the needle into my port but then started trying to draw blood from it with vaccutubes. Of course she couldn’t get any blood as there just isn’t enough vacuum in those tubes to draw from the port, but I figured she must know what she was doing. Then she wrote the wrong date on the the patch over my port so I started having doubts. I corrected her on the date and she drew blood from my arm instead. I’m a very easy blood draw so I was kind of surprised when she managed to hurt me with a butterfly needle. Again since I work in the field I try very hard to never complain and didn’t say anything. They moved me to a different, more isolated room as my neutrophils were extremely low (my infection fighting cells) and thus started my long night in the ER.
I didn’t know it was a full moon and I didn’t know July is the worst time to go to the ER in a teaching hospital as that is when all the new interns start their training. I was ignorant of why they just kind of left me in the room for hours on end. I finally had to push the “call nurse” button as I really needed to pee. They came in told me what to do and gave me a urine cup to additional tests. A young female doctor came in and I have to admit I thought she was a nurse because of her youth, but again I didn’t know about the July intern thing. She tells me I’m going to spend the night, have IV antibiotics and a CT. I asked about some Zofram for my nausea and they brought it and some potassium IV as that was very low as well. So two hours later after my potassium bags run out and I finished watching the “Bucket List” I send Telle home. No reason for us both to be uncomfortable.
Someone comes in to see if any guests want sandwiches, snacks or juice. I ask for water…they are going to ask my doctor. Another hour or so passes and a new nurse comes in. He checks my blood pressure and O2 sat and I ask for water. He will check to see and bring me ice chips, which didn’t happen. Another hour goes by and he comes back to ask for another urine sample. My pregnancy test came back inconclusive! LOL. I’m a 46 year old woman who had a partial hysterectomy at 21 (I have no uterus) I’ve been on chemotherapy for two months so my ovaries are pretty much dead and I’m a lesbian. Talk about immaculate conception. I tell him it will be hard to pee as I haven’t had any water for five hours and I didn’t even have and IV to keep me hydrated. He said he would check to see if I could have ice chips…grrr. An hour or so later Dr. Karam calls to ask what time visiting hours end and I let him know I’m still in the ER. He says he’ll be right over.
By now my throat is starting to hurt as I’m getting dehydrated, but again I figure they MUST know what they are doing. An orderly comes in and takes me down for my CT which takes all of ten minutes. Then back to my room to continue my thirst regiment. I’m starting to wonder if this is some new treatment…heh. Then Dr. Karam shows up with magazines, puzzles, pens and Werther’s candies…again I am very, very lucky to have such wonderful people in my life. After another hour or so they come around with sandwiches for the guests and again and I ask for water…you guessed it, they’ll ask my doctor. After a bit this 12 year old comes in…heh ok maybe he was 17 and tells me he’s my doctor. They are waiting for my CT results he says and I ask him for water. He asks me if I’m PO or NPO. Lucky for me I know what this means, whether I can have anything by mouth or not. I’m thinking maybe HE should know this, but I tell him I don’t know but I’m really thirsty. They finally bring me a cup of water. Pure ecstasy going down my throat…it wasn’t nearly enough.
My son and his girlfriend came by and everyone kept me entertained, especially since they all had to wear masks..again…I am a lucky girl. Then this man comes in…he says he’s a assistant nurse manager and I’m thinking I’m going to get some answers. He says my doctor has called for my results and I should be in a room soon. Then he starts going over what reverse isolation means. Now I’ve been in reverse isolation for about 8 hours and he keeps going on and on about how he can’t touch me as he walks all around the room touching everything. He must have said either everyone has to wear and mask or I have to wear a mask at least 10 times. I’m like I got it. Then I ask him when I might go to a room. He asks me what my name is….WHAT. He didn’t even know who I was and he’s telling me my doctor is asking for results? Then he checks the computer and says no room has been requested. What a waste of hospital resources to pay this person. He knew nothing, gave me no information and came in a contaminated my whole room while telling me over and over he couldn’t touch me. I was starting to get annoyed. We all tried to joke about what was going on but it was becoming more difficult. Just when I didn’t think I could take it another minute my 12 year old doctor comes into the room…JOY!
So, he tells me I don’t have a PE (pulmonary embolism/blood clot) then Dr. Karam lets him know he is my friend but he is also my primary care physician. I think a little color drained out of my 12 year old doctor’s face. He says he’s sorry for my long wait and Dr. Karam asks him about the CT results. The young doctor walks over to the computer and reads the radiology report word for word. The very good and exciting news is they didn’t see anything on my chest wall where before there were nodules before…no matter what else happened this night that really made my day. The chemo has been working, things are getting under control and although it’s early yet I really feel more hopeful. Then the young doctor says I can go home, there is no more medical treatment I need at the moment and I should see my oncologist in the morning. It is now 11:30pm, I’m dehydrated, hungry and my ride went home hours ago when they told me I was staying overnight. Again Dr. Karam comes to the rescue and says he’ll be right back with the car. I figure it’ll be an hour or three before they get me signed out, but checking out is obviously a different matter. It took all of two minutes for a new nurse to come in with papers for me to sign to go home. She says okay, you are all set. Then I ask her if someone was going to take out the IV line that’s attacked to my port? She says okay, we normally leave them in three days, but I can do it. I smile and say thank you…keeping the vision of no spots on my chest wall in my mind and dreaming of all the water I will drink when I get home.
They never did tell me if I was pregnant…so you never know!
The second chemo treatment went much better. They were prepared ahead of time and premedicated me so only a few hives and no scary heart pains. I’ve been eating frequent small meals and that seems to have helped as well. Now the hot flashes have improved, at least they are further apart after starting 800mg of Vitamin E a day. The crazy hygiene schedule is funny getting used to. Wash your hands before and after doing pretty much anything. I’ve never been too crazy a lotion person, but now twice a day like clockwork, lotion everywhere. I have to say I’m enjoying the added massages from Telle.
The evening after my second chemo treatment was weird. My hair, or I guess scalp started hurting…like when you’ve had your hair up in ponytails or something all day and then you take it down and it aches. It was like that all over my scalp. I was highly irritated and couldn’t get comfortable with my head on my pillow. The hot flashes every 20 minutes or so came back as well. The next morning I climbed in the shower and as I shampooed my hair it was rolling down my back, shoulders and chest. It just kept sliding off with the shampoo. I have some thin patches as you can see here that I suppose will come out in the next day or two.
Thank goodness my son John talked me into heading over to a wig shop near by the day before. He kept encouraging me and we headed out. I kept trying on fun wigs, he kept looking for practical wigs and then the owner of the shop walked over and said “No, no, no…this is the one for you. Lightweight, a good color for me and easy to care for.” Sold John says and then even gets me a head to keep it on. Well it was perfect timing as my hair fell out the next morning…Thank you John!
I proudly wore my wig to Telle’s football game and everyone said how nice I looked. Her team, “Raw Energy” even took up a collection for me, for necessitates. Thank you so much ladies, it is coming in very handy for my new styles I’m still coming up with for my head! Thank you, thank you, thank you. You lifted my spirits and improved my life, you are my heroes.