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.
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 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 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.
This breast cancer diagnosis has become a little frustrating in that it just can’t make up it’s mind. In preparation for my upcoming surgery I’ve had to have several tests, which have come up with some incidental findings, which have led to other tests…bottom line it appears the cancer has indeed spread. At this point to some lymph nodes beneath my breasts and possibly to some cartilage or lung tissue as well. I have an Echo-cardiogram today, a PET scan Tuesday and I’m starting my first course of chemotherapy on Thursday. My surgery is being delayed until we get this other stuff under control.
It’s a little overwhelming all the prescriptions, orders for more tests, instructions on what to do when this or that symptom comes from the chemo treatment. Calling my parents and children to update them and change the plans that were already in the works was pretty difficult. I’d already accepted that I was having the mastectomy, that I was having chemo after that..but I was kind of in the mindset that I was getting rid of the cancer not actually getting ready for a battle. It feels a little like I went from a yellow alert to a red alert in a days time. Overall though, I think I’m working through it okay. I’m mostly staying pretty positive and my support groups in my friends and family is fantastic. I am going to a great hospital with amazing physicians and mostly not having to worry too much about money yet…so if it had to happen I’m very lucky in how it’s happening.
My Dad and I were talking a little about how strange it is when your own mortality comes into focus for you. I mean we are ALL going to die, but somehow knowing it could be coming sooner..or just knowing when it could be coming brings it to the forefront and changes how you look at yourself and everything else around you. At least I’m thinking about and doing the things that I know are truly important that I might have pushed to the side before (because I’ll be around forever..and I’ll get to that some other day). My family and friends have sent me such love and inspiration and I have to tell you I have never felt so loved. There is something so good about that, that I can’t be mad about all this. There is this part of me that feels like maybe it’s something that needed to happen to me – and my family – so that unsaid things or put off things could come back into prospective. I often say “Live for today, tomorrow may never come” and I do try to live by that…but I think I’m trying a little harder now to follow my own advice.
I want to hike the Grand Canyon with my sister Della, I want to see Niagara Falls, I want to spend time with my grandchildren, I want to go camping more often, and I want to spend more time with my loved ones. Each of us needs to figure out what it is we really want in our lives and go for it. It might not be cancer that gets you…it could be the 5:45 bus, a crack in the sidewalk, someone texting on a cell phone while driving down the road or a big ole bolder could roll off a mountain right on top of our heads. We are going to kick the bucket sooner or later – so Live for Today!
My battle has started and I’m going to be Xena the Warrior Princess….Towanda!!!!
There are eight days left until my surgery. Still have some organizing to do at home, which is good because I’m trying really hard to keep my mind busy. I just found out that there will be a full moon on my birthday this year (Tuesday) so I’m going to head down the the beach to the Full Moon Festival and dance under the full moon for my birthday. It’s funny who one day something means nothing in particular to you and then all of a sudden it has all this meaning behind it. I hear continuous commercials about breast cancer, breast cancer treatment, stories about breast cancer…sheesh…nothing but breast cancer on my mind. I’m off to work….namaste.
I was feeling a little helpless, in that I didn’t feel like I was doing anything to actually help myself. All the tests andappointments were keeping me busy, but again, it just didn’t feel like I was accomplishing anything. So yesterday I walked down the street to a neighbor hood salon and cut my hair. It’s all going to fall out anyway, so I got a short summer cut. Not sure why this made me feel better, but somehow it did.
Have my appointment with my oncologist, geneticist and surgeon this Wednesday to finalize surgery decisions, then surgery on May 24th. My parents are heading up from Florida to help with my recovery that week so I’m getting organized for their visit and to make my recovery less stressful.
I’m going to feel so much better once treatment actually starts. The waiting game is no fun. I’m going to work on laughing and doing fun things the next few days. Going to try that “laughter cure” thing…at least it sounds better than pouting.