It’s harder than I thought.

 

 

 

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.

PET scan results and first chemo treatment.

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

 

Saturday was a good day.

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

Saturday, May 21st, Rapture Day

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.

A change in plans.

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!!!!

8 days until surgery.

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 have Breast Cancer.

I have said it a thousand times in my head in the last few weeks. I even said it out loud several times in a row one day, just to see if it would make it feel more real. My surgery is still 11 days away. I’m going to have my 46th birthday in 4 days, with this “Cancer” still inside me. I talk about it every day with my partner, co-workers, patients, family and friends and it still feels like I will wake up any moment screaming but relieved to be awake and cancer free.

I was diagnosed with Invasive Ductal Carcinoma on April 27, 2011. That was the first day of my new life with cancer.