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
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!
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.
The last few weeks have been a whirlwind of tests, diagnosis and treatments. Working in the medical field and being someone that reads continually about all types of things, especially the ones effecting me, I was not planning on being surprised by my reactions to treatment of my breast cancer. I knew the terms, the side effects, when and what was going to happen, but somehow it did not prepare me one little bit. Perhaps it was the changing diagnosis, perhaps my sometimes too happy go lucky look at life, I guess I will never know. No matter the reason, I have found this is going to be a much harder journey than I thought.
The last several nights I wake every hour to hour and a half having a huge hot flash. My lips are continually tingling. I’m always nauseous and extremely tired. I really and truly feel terrible. Now my understanding is that these feelings are cumulative, meaning to me that it’s only going to get worse. I woke this morning feeling so mad, angry, kicking myself for thinking I was strong enough to handle this like every other tough thing that has come along in my life before this. I mean people all over the world are having the same thing done and I don’t hear a bunch of whining about it. So what’s my issue? I woke feeling bad and decided I had to force myself to act alive so I would start feeling alive again. I dressed, took the dog for a walk, (big yellow gloves on my hands since I’m not supposed to pick up dog feces now) and just forced myself to walk around the block with Voldie. Well we did it and nothing terrible happened. So then I straightened up the kitchen a little and sliced strawberries for the strawberry shortcake I was making for my son John’s birthday today. As you know it ended up being an extremely hot day and I called my son John to come over and put in my window unit AC. I can’t even think about how I’d manage to sleep if I was hot and feeling this crappy. So after getting that all taken care of we walked down to the lake and sat under a tree for a little while and I breathed in the fresh air. I was tired, but it felt like a real tired…not a foggy tired the way I’ve been feeling the last few days. It felt good to actually feel tired from doing something instead of from just breathing.
I had to admit a few things to myself today and that too was harder than I thought. I have to admit I’m afraid, I’m very afraid that I’m not going to come through this like I originally thought. I’m afraid I won’t ever be the same person I was before. I’m afraid this will kill me. I’m afraid to die. That is something I never thought I would feel and I think accepting it is just what I need to start my next steps forward. When I woke this morning I was thinking this was just the first thing. I still have seven more chemo treatments. I still have surgery. I still have radiation and even then I may still have more chemo. How in the world will I make it through this? I pouted, cried, kicked a few things on the floor and then I put one foot in front of the other and walked out the door into the world.
I have metastatic invasive ductal carcinoma, I have breast cancer. I’m going through chemotherapy treatment with surgery and radiation to follow. It is going to be a long year with many battles and I’m going to have to tighten my belt and hold up my head and keep moving forward. I no longer think I’m a rock that can take whatever is thrown at me. I think I understand that I am just a woman who is fighting for her life. I have so many people on my side, pulling for me and giving me all kinds of positive energy that I need so very much. I have the ability to get this done and see it through, but I have to accept that there is the possibility that I won’t and be okay with that as well. I’m working on my health and working to fight this thing back, but I’m also going to work on my inner self. I am going to allow myself the bad days and enjoy the good days. I don’t know where all this is leading and I can only just go through the motions while I find out. This is my journey and it’s not going to be like his or hers or theirs, it’s going to be mine and what comes, will come.
Tomorrow is a new day and more steps for me. I will take them as I can and accept when I can’t. At least that is where I am at this moment. I have a loving family and I am so very blessed to have had the life I have had thus far. I am humbled and perhaps that will be my path into the future.
We left out of the house and it was raining and dreary out, matching my mood to a T. We were running a tad behind and I truly hate being late to anything. There was not much traffic and we were right on time. First we went up to see Dr. Mauer and get my PET scan results. It’s for sure, I do have metastasis in several lymph nodes, and either a out of place lymph node or an outer portion of my right upper lung, just below the tumor. She said the only way to know for sure would be to take it out and she didn’t want to do that. So the plan for now is 7 more treatments with chemo, every 2 weeks. Then another PET scan and probably labs and echo’s and stuff in between. Then if things have gone right the mastectomy, then radiation to those spots they can’t get to, then possibly more chemo. It’s going to be a long road, but one I’m feeling better prepared for day by day. Talking to my family, friends and partner Telle keeps me in focus and on track.
While in to see Dr. Mauer I explained to her that I sometimes get hives for no particular reason, but normally under high stress or when something irritates my skin. I can write my name on my arm with my fingernail and a Kelly hive will appear…lol. Well they said no one ever gets hives so nothing to worry about. They brought in a bunch of medical supplies and I asked if they were for my brand new port. Why yes they are the nurse tells me. I quickly ask about the numbing cream I have recently heard about. We will be sending that home with you she says, for next time. But none for this time I ask – almost whining. No, sorry it has to be put on for a while before hand I guess. Anyway, she stuck the needle device into my chest and into the port. It stung, but it was more the pressure on the new port that still aches as they just cut open my chest and stuck it in there 2 days before. Over all not so bad at all. They draw blood out of the port for a pre-chemo lab test and then walk us back to the chemo area. There are several other people there having chemo treatment for several different reasons and again I was reminded how lucky I have actually been. I settle back in my comfy chair, turn the tv on and get ready to chat and play games on my phone with Telle.
The nurse comes in with the first part of the chemo. It’s in these ominous red vials. She inserts the first one and starts to inject. She asks if I’m having any unusual symptoms. I immediately felt a hot pressure under my breast bone and a unbelievable need to vomit. I sat up and asked for a bag or something and they brought in something for me. I coughed a few times and sat back. She asked if everything was okay and I said yes except for the tingling in my gums over my two front teeth…how very strange. Then the nurse puts my face in her hands and turns my head from side to side looking concerned. I thought she was looking at my red chin…I have rosacea and let her know that was common. She said no, that wasn’t what she was looking at. Hives were breaking out on my face. Then my stomach started itching and I looked down to see several more popping up.
Next thing I know there are machines hooked up all over me and she is asking if I can take benadryl. Yes I say, no problems ever. She brings in a huge vial of liquid IV benadryl and asks if I have a ride home. Telle is driving us I say, will it make me tir…….that’s all I got out. I was falling back onto a fluffy white cloud and drifting to fantasy land. I know I was trying to talk but I don’t know if anything was coming out. Some time later they brought me some soup and I was actually hunger so started eating. I fell back asleep part way through and Telle rescued me from burning my lap. Some time later Telle asks me who are you waving at Kelly. I’m like, I’m waving at Zoey here in my lap. I pry open my heavy eyes and come to the understanding that I am hallucinating. I covered up my face with a pillow and went back to sleep. They second bag of chemo stuff didn’t seem to bother me, but how could anything bother me when I was flying high on benadryl. By the time we were ready to leave I was still sloppy drunk and leaning on Telle to get out. We picked up my Neulasta injection at the specialty pharmacy and headed home so I could crawl into bed.
I took all my med with breakfast and lounged around most of the morning. They called from the hospital to remind me to take my Neulasta injection and just happened to mention that I would be having bone pain, chest, hips, knees etc..because it causes white cells to increase that come from bone marrow, so I would feel it. Take some Tylenol or Advil they told me…nice. Telle helped me with my shot and about 30 minutes later I got up to use the bathroom and my knees where very unhappy. A few Advil later I was good.
I took a small walk with my son John wanting to go down to the lake. I made it about half way and we stopped for hot cocoa and coffee. It was a little cool out but very nice to get the fresh air. I came home and enjoyed some more online time talking to my family and am looking forward to a long nights sleep. Crossing my fingers and taking my medications and so far only a tiny bit of nausea. Drinking water like it’s going out of style, I’m very, very thirsty. And of course peeing all the freaking time. One down, 7 to go. Should be a breeze!
Thanks for reading and sending me all your good thoughts. – Kelly
We had a little get together with a few close friends yesterday and it turned out really nice. It was pretty nice not to be thinking about all the upcoming treatments for a few hours. This is my week for everything to get started and even though I know about each thing, what it’s for, what might happen etc etc…I still find myself getting a little nervous. Will I get sick, will I feel like puking all the time, will the port they are inserting hurt, will they find out after the PET scan that it is much worse than they originally thought…so many thoughts run through my mind when I wake up at night with these silly hot flashes.
I know enough to understand that I’ll just have to wait and see like every other person before me. Does it stop me from reading everything I can online? No. I guess that, like everything else, is just the way it is. I’m looking forward to a nice Chicago Summer with lots of festivals and activities to attend. I plan on getting out there no matter how I feel and at least try to keep myself going. My oncologist, well her nurse, actually said one of the best things for the fatigue of chemo was exercise. I’m starting my yoga routine today and an evening walk is now on my daily plan. Had a few drinks for my little party last night, so may have a few today, then that’s going to be it for alcohol for me for a few months it seems. Not that I ever really drink anyway…well once in a while I’ve had a few too many Long Islands…LOL (already gave them up the last time that happened).
Going forward today with a smile on my face, and happiness in my heart. Thank you to my dear friends and family that have shown me such love and support over these last few weeks. I do have one thing I wanted to say about friends and family. When someone is sick, or someone close to a friend or family member has died, we often don’t know what to say or do, so sometimes we just say or do nothing, rather than offend this friend or family member. The worst thing you can do, is say nothing. People that are going through grief or sickness WANT you to talk to them. You can feel them out about whether they want to specifically talk about that particular thing, but they defiantly want you to talk to them, come over, and just be the you that you’ve always been to them. I remember when my boyfriend died when I was 16 years old. It was a huge shock to me and I was just so amazed that the world just kept on moving along like nothing at all had happened. But the biggest thing to me was that people backed away from me for fear of not knowing what to say. Just say “hi Kelly, how are you…wanna hang out sometime”. I think loneliness is sometimes a problem when you’re having something like this going on in your life. I won’t go on and on about “My Issues” – I have this lovely blog to do that…heh. So call me up, send me a text, or just send me some funny jokes. Nothing…absolutely nothing offends me about this retarded cancer in my body. I like cancer jokes, boobie jokes, bald jokes…I’m a laugh or it’s not worth living kind of girl. Okay – Off my soap box.
Much love to you all for reading my ramblings – Kelly
It’s 4:18am and I’m still here, so maybe the Rapture is happening some time this afternoon..heh. I’m up as sleep is something that eludes me more often than not lately. I did have a good day yesterday. My actual only real phobia is “The Dentist”. I had a few bad experiences at the dentist as a child and even 30-40 years later they still haunt me. Since my chemo treatment is coming up in a few days I decided I better at least get a cleaning and one or two little cavities taken care of so they wouldn’t crop up into something else while on my chemo treatment. All the books said to get my teeth taken care of now and I finally just jumped in the deep end. Someone is watching over me and directed me to the kindest, most efficient dentist in Evanston.
I went in hoping for a little temporary work to hold me over for the next 4 months while doing my treatments and once I explained to her that this visit was pretty much my only chance before they started she went strait to work. She took a look, saw what needed to be done and asked if anything one thing was most important. I started to explain and she said “Nevermind..we don’t have time to talk…let’s get to work” and away we went. The process was a blur, but I remember she kept gently plying my tightly closed fists open and telling me to relax and before I knew it she had given me a whole new smile. She said she had a few little more things to do, like remove any silver from old fillings and change everything to white and make sure everything was perfect and since chemo was Thursday, could I come back Tuesday. I said of course. They checked their appointments and there were none. She moved someone immediately and I’m going back at Noon on Tuesday.
She wiped a tear from my cheek and asked if she was hurting me…I told her not one little bit, that she had given me something so special that I just couldn’t keep it in. The little things DO matter. I’m bringing her flowers on Tuesday!
We are having a little get together this afternoon, for all us left behind on Rapture Day and kind of a last weekend before treatment social then it’s full steam ahead. It’s my son Christopher’s birthday today. He just graduated with a Bachelor’s in Mechanical Engineering and is headed to Officer Training School for the Air Force in a week or so. I couldn’t be more proud of him. “Happy Birthday Chris!”
Both of my boys Johnathan and Christopher have shaved their heads to show their support for me…silly but so very sweet. So I’ll have to have my picture taken with them while we are all bald soon (Now that’ll be a fun picture).
My schedule for the week is.. Monday – wig fitting. Tuesday – PET Scan and having a port put in and return to dentist. Wednesday – Possible makeover at Macy’s. Thursday – First Chemo treatment. Friday – Hopefully chilling at home with no side effects watching movies on TV all day. I’m a little nervous about the PET Scan as I don’t know how much this stuff has spread and waiting for that news is a tad frightening, but information is power and you can’t fight what you can’t see. If I didn’t say before, I’ve given up soda and now have a new outlook on my health all together. I understand exercise is actually good for the tiredness from chemo so look out world…here I come. Look for me on Sport’s Magazine in the next Marathon…hehe.