Notice the lower case big c in the title and throughout this journal. I AM THE BIGGER MORE POWERFUL ONE AND I HAVE TOTAL CONTROL OVER THIS big c. I WILL USE ALL MY POWER, ALL MY STRENGTH, ALL MY MEDITATION AND MEDICATION to beat you down. REMEMBER big c you will NEVER WIN.
I can’t even begin this journal without first acknowledging those people who have and are playing a critical part in this big c journey with me. I’m not very tech savy and have never journaled before online so please bear with me. For all I know this entire thing may be in vane because it may never be able to be found by those of you who may want or need to read it. You know lost forever in the world wide web. However being aware that this may be seen by countless the world over and beyond (think ISS International Space Station) I want to protect the identity and only use first names and/or simply initials of those involved in this journey with me. This also includes my health care team who I will simply refer to by their health care system. Also being a former teacher spelling has been a huge issue with me. Hey my dear friends I will try my best here but spell check is not going to play any role here so bear with any typos as they aren’t intentional.
First I want to dedicate this to my neighbor who is currently fighting her own battle with the big c. Through all of this my goal is to strive to handle this journey half as eloquently as she has and still does. Thank you Louise for being my inspiration. I know you are always there for me and I always hope I can be there for you.
To my truly amazing health care team and their staff out of the Washington Health Care System and the UPMC Cancer Center. Know that I totally trust your decisions and have faith that you will always do what you feel is the best for me. I promise to try to always hold my chin up and to try to make your job less stressful. If you ever have to give me bad news throughout this, please know that I hold nothing against anything that you have done. I do believe that God is the real major player in all of this and you are his messenger.
To my husband and son. You are the ones who see me daily. You see my good and bad and put up with both without too many complaints. It is you who make sure I always have whatever I need. It will be you who will be holding my hand and rubbing my back and sitting through all those countless hours of chemo treatments, helping get me through the dreaded “shot” day, sitting in all those hospital waiting rooms (hey I think we finally managed to conquer the in’s and out’s of the parking garage), and getting me through whatever side effects this nightmare might have me endure. Let’s hope there aren’t many. My son, I am so glad you have Buddy to keep you busy. I’ve given you plenty of haircuts now I think you may be returning the favor soon. I hope we can get to Kennywood many times this summer. You have your season pass but I still have to get mine. I will. I just hope you won’t mind riding with an old bald mother. You know the trick, my sunglasses go in one cowboy boot and this year my hat will go in the other. I know that I will be riding with a son who I am even more proud of than I was last year. Everything will work out for you, I have faith. To my daughter, please understand that I just can’t take on any more stress right now. I can’t straighten out your life. It is something only you can do. To Arielle all I can say is don’t worry and thank you for everything.
As of this writing which is on the eve of my very first chemo treatment (March 1, 2016) I still haven’t told my two brothers. I think it will be very hard, probably the hardest reveal of all. After all it’s been less than 4 years since our dad died of liver cancer. He handled it all with such amazing grace. Don’t worry my friends. I have absolutely no plans on going anywhere. I believe you have much control over that final decision and I have way too much left to do right here.
To my friends at work. Robin, you were in on this from the beginning. You were the first to know. You wiped away my tears, helped me get through my fears, got me my loa and disability and alleviated the greatly dreaded health insurance question. Thank you.
Angela, I know you went through this on a personal basis. Thank you for your support, information and helping me with my schedule and everything else you will do.
Okay on to my big list and I hope I don’t leave any major player out. I apologize to anyone I have overlooked. Sorry for any misspelled names. Blame it on my brain overload right now. Cathy, Danka, Lynnsey, Deb, Joyce, Sandy, Cheryl (thank you for the lottery tickets. I actually won $15 and a free ticket and that has NEVER happened to me before so maybe you are right and my luck is finally turning around) Maryann, Terri, Paula Renee, Jess, John, Jenn, Sue, JoAnn, Barb, Autumn, Ciara, Donea, Melissa, Marcella, Know your kind words, hugs, and yes Danka your tears all mean a lot. I don’t know what the future will bring but know that I will be counting on each of you to continue your patience and understanding with all the things that I just may not be able to do the way I have done previously. My strength may not be what it once was but believe me I will try to do the best I can during this fight with the big c. Know that I appreciate all of you, all your concerns and kind words. They really mean a lot. Keep them up, please. I’m sure there will be days that I want to talk and days that I won’t. Know that it is nothing that you said or did. Your support is all I ask.
I have stage 4 breast c. The first time I heard the stage words was when I came out and asked my c doctor. I was ready to hear it, deep down I knew it but needed to hear it to sort of make it real. I truly hope that each of you NEVER has to hear those words but heck this is MY JOURNAL so I am going to share things that you may or may not want to hear but like I said it is MY JOURNAL so here goes.
First and foremost I DO NOT exaggerate when I talk or in this case write. If something hurts you will know it and if it doesn’t, well you will know that too. I always heard things from people that turned out to be SO UNTRUE. Yet their comments and stories remained with me, frequently frightening me, often uncontrollably. Only later after my own experience did I realize how silly all my stress and worries were. Well so far this is no different.
In one day I went from dr. appointment to having 2 mamograms and no they don’t hurt well what mostly hurts is the pulling of your skin and sometimes the uncomfortable position of your arm on the bar. OK hold your breath. Click. Now on to the next position. Two biopsies. Again I was worried while I was waiting. I had a great doctor and she let me hear the clicking noise I would be hearing so that I wouldn’t be jolted by it during the ‘real thing.’ Numbing shot slight pinch and here we go. No it wasn’t bad. Honest. I forgot to mention I have a huge no now make that HUGE visible c lump on my side. Yes my friends, visible c is UGLY. But hey believe it or not it doesn’t hurt. Only a rare itch an even rarer sting. But UGLY hey I won’t even touch it. OK. I’m chicken to touch it. Don’t worry you can still come around me. When I shower I wash over it with a wash cloth. Hey that’s supposed to be funny so go ahead and laugh. I even use soap. In between was an ultrasound. No pain whatsoever. Alice was there to really offer support. I try to keep her up to date on the latest c happenings. Alice you are great. Oh did I forget to say that during the biopsies they put markers in to mark the cancer areas. These will remain in place I guess forever unless they remove them during a future surgery. You don’t feel them and they assured me that they won’t set off metal detectors.
Back to another quick appointment with Dr. who quickly got her amazing staff to schedule an MRI and PET CT scan helped me pick a surgeon and scheduled that appointment too. These scans were on two separate days. First the MRI at Washington Hospital. Went to lab for blood draw then off to MRI lab where you put on the cute but impossible to figure out hospital gown. I call it the “strings to nowhere. Next they insert a thingy in your arm (sorry friends but I went brain dead on the name and just don’t feel like looking it up right now or maybe never will but I think you get what I mean. Anyway the guy who did it was really good. Hardly felt a thing. AND it is very important that you assure them that you will be there at the right time because the stuff they inject you with has to be delivered from Pittsburgh and it has a limited shelf life. OK so I’ll be there. Extra early. I enter the room to see a BIG tube and table. I’m given my instructions lay on your stomach and well you can figure out the holes. We will leave the room so you can have some privacy to get ready. GEE THANKS. OK guys you can come on in. You will hear a lot of loud noise so here are some headphones what kind of music do you like. Some old country will work for me. Wish I had my cowboy hat here but I’m afraid it wouldn’t fit in the tube. Arms over your head for the whole time (this I must admit is the most painful part) and stay still breath normal but we may tell you to hold your breath occasionally and oh yes here is a little squeezy thing. Squeeze it if your need us and remember we can see you and you will be able to hear us and we will be able to hear you. OK ready here we go. But first a few practice moves. Hey whatever I’m not going to see anything cause my eyes will be shut the entire time. And they were. Loud noises yes they drowned out my music so the headphones were basically a waste. Well what can I think about while I’m in here forever to pass the time. The fun times spent with my son at Kennywood. Been there so many times that my mind can go from ride to ride entrance to exit and I’ve ridden them all. Perfect timing. Goodnight Kennywood and I’m done. See ya MRI but I have feeling we are going to meet up again.
Another day and another appointment with a PET CT scan. Another new experience. This time I got to skip the blood lab and went straight to the nuclear lab. I had the most fantastic tech ever. Felt NOTHING when he inserted the IV in my arm. IV yes that is the word that I tried to remember in the above paragraph. By the way I forgot to mention that you feel nothing when they start the actual stuff into the IV. Another cute gown to put on and this time a locker with a key. Believe me mister nobody is going to want my going to doctor and hospital clothes but I will appease you and use the key. I guess I really wouldn’t want to have to walk out in that cute hospital gown with the strings to nowhere flashing everybody on my way. This time I got to be on my back, arms over my head (the absolute worst part). A couple of practice pass throughs and here we go. Well this machine is much more open than the MRI but my eyes were closed anyway. It wasn’t nearly as long as the MRI and again felt nothing. When I got back to the locker with the key I couldn’t get it to work. Had to call the tech. He opened it and I said goodbye to my cute hospital gown with the strings to nowhere certain we would meet up again. There is one thing I forgot that happens when you are done. After they pull out the IV they put a piece of cotton over it and tape it down with like 3 pieces of tape. This is ok until you get home and try to remove the tape. This is another thing that I don’t handle well. Long story short I had a c-section and my doctor bless his soul used steri strips with a large tape over them. The girl in the next bed had a staple doctor and so understandably I was quite relieved to have what I had UNTIL he came in one night and grabbed it and pulled. Let’s just say they heard me on Bower Hill Road. Well simply pulling this tape off my arm can literally take up to 2 days. A little pull here and a little pull there until well you get it.
Yes another day and another appointment. An 11:00 am echocardiogram. Start work at 2:00. More stress will I make it. The lady was super nice and took my extremely high blood pressure at my wrist. I said “Oh you can do that?” Then why the hell don’t they. On the arm makes my blood pressure even higher because when it squeezes the living life out of your arm it feels like your fingers are going to explode right off your hand. Well the wrist gave another high reading but it was a good 30 points lower. Which reminds me Call Dr about maybe needing to up my bp meds. At home blood pressure cuff means new job for my son. Check my blood pressure every morning. Ok pain level of this echo test was occasionally high only when she pressed the thingy (brain freeze here) using a high level of pressure into my rib bones. Of course this was a baseline echo because chemo can affect the heart muscle so it was extra long. When she was done she asked if she could pray with me. Hey maybe she has a connection with the man upstairs. We held hands and she said her thing I said Amen and left.
Next off to the c doctor. Heard she was real nice and she is. Made me feel comfortable as she explained things to me and answered my questions. I told her I totally trusted her. Next I talked with someone who also later called me about clinical trials. I agreed because anything that I can do that may help someone else in this battle I will do. I have the folder on my desk but can’t say I have gone through it in much depth yet. A little too much info for my fragile brain to deal with right now. I will get to it eventually, I promise. My stack of folders is getting pretty high though. Have to remember to talk to my tax accountant about these medical bills for next year’s tax return. Next met with Candace who helped me with my scheduling told me about side effects and finally gave me a tour of the place. Sign in when you come in they will call you and give you a paper and you will put it in the treatment box if you are here for treatment or the lab box if you are here for lab work. We have snacks and drinks here. Here are the two rooms with 8 recliners and a chair beside each one and tv’s and where you sit will be determined by where your nurse sits so she can monitor and watch you. Hey ok. This place is near the Meadows and there is a Wendy’s, Burger King, McDonald’s and Primanti’s. Well let’s see how this chemo goes first. Six hours you say. Starts at 9 am. If my math is correct that is 3 pm HOWEVER, Louise told me maybe I’ll be out at 7 pm. Time will tell. First is a blood test that has to be read before the 4 drug chemo fun even starts. Drip, drip, drip according to Louise. I forgot to mention, I made this trip myself. Not the best idea when you are dealing with this but the husband got sick right before I had to leave so what could I do. Thank you son for braving it up and staying with him. Side effects, Nausea which they can control, constipation/diahrea (spell check please) (I’m taking a stack of towels cause I don’t need an accident in my jeep) weakened heart muscle which is monitored with an echo I guess, weakness, and extreme fatigue, dizziness and hair loss. Those of you who know me know that my hair has needed some desperate help lately. For some reason I kept putting it off. Now I’m glad I did. They give you a brochure with scarves, hats, turbans and wigs. I have it narrowed down and plan on ordering in the next few days. I’ll start with a hat, scarf and wig but my work friends probably can figure why no turban. Hey maybe it will grow back with some improvement. I can hope right after all it is MY JOURNAL.
Next appointment was with the surgeon aka heart throb. Good Looking, Young, Rich, Married I think. Oh well let me dream ok. MY JOURNAL remember. Appointment went good. He is positive. One word no make that two words – COLD HANDS. He is going to put in a medi-port. This is so I won’t have to endure any more needle jabs to find a vein. Don’t believe it. The medi-port is placed entirely UNDER your skin and is connected to a large artery and is accessed with none other than a NEEDLE. So I say what’s the point. But I am now the proud owner of one that lives on my right side beneath my shoulder. This will be done as outpatient surgery. Hospital calls to ask questions and another girl calls wanting none other than money. Yes if you bring in a check for XXXX.XX you will receive a 10% discount. Sounds good. Park here and go there be here at 6:30 am. And so I show up with my check at 6:30 am (actually earlier, make that much earlier) only to find out that the amount written on the check was WRONG. Not my fault. They gave me the wrong amount. The correct amount was much less only XXXX.XX. One started with a 37 and the other started with a 22. Of course I didn’t come with any checkbook or charge card so the poor husband had to drive all the way back home to get another check from the checkbook. He still wasn’t back when they called me back to prep area. That of course made me nervous, After all he could wreck, break down or have any of many kinds of problems. I was relieved when he finally did show up. Many people came in to see me and ask many questions. Hook up the little monitors, connect the IV midway on my forearm. Maybe these designs can go in the Warhol. I’m getting quite the collection of bruises. Oh I almost forgot. With the port no more hunting for a vein even for drawing blood. Well there goes my infamous piece of art. Finally Dr. Hunk comes in. Shakes my hand. Warmer this time. Shakes my husband’s hand. Says see you in a bit. Left and I said “Isn’t he so cute.” This didn’t faze the husband I don’t know why. They wheeled me to the OR and damn I was out before I had the chance to see Dr. Hunk again. When it was over he went to meet with my husband to tell him the outcome but I didn’t get to see him again. Woke up in recovery and went to the final staging area and got released. Husband came in. All the tubes got removed. I sat up to make sure I wasn’t dizzy, Got dressed and waited for a wheelchair ride. Hey I was hungry. First stop Burger King for a Whopper, fries, and a sprite. And no this girl isn’t going small cause I didn’t eat since before midnight. It was after noon so my hunger bell was going off. Went home and CRASHED.
The big day. First chemo. Had to take 2 pills at breakfast and 2 pills at dinner the day before, the day of and the day after. The husband is going to sit with me, bless his soul. Got to remember to call the main doc to tell her I stopped the pain med. Feeling better. Have learned to work with my knee and the husband got me a gift. Are you ready. A toilet seat extender. It really helps. I don’t have to bend my knees at such a severe angle anymore. I also learned to sit in the jeep so the pain is a lot less. I still don’t think you will see me sitting at work though. Can’t write about chemo until after chemo so let me end this session with some dates.
1-26-16 – dr apt, mammogram, ultrasound, 2 biopsies where markers were put in to mark area. These will stay in though maybe they come out at a future surgery but didn’t ask so I don’t know.
2-1-16 – met with dr again. 4 positive areas left breast, right breast, liver, sternum, make that 5 areas lymph nodes. Fast growing – move quickly. But first more tests.
2-9-16 – MRI
2-11-16 – Dr.apt
2-16-16 PET CT scan
2-23-16 – Surgeon apt., Went for pre-hospital testing, EKG, blood work, x-ray.
2-24-16 – Cancer doctor
2-29-16 – Port Surgery
3-1-16- Take pills
3-2-16 Take pills, first chemo
3-3-16 Take pills, get shot. Rest for 2 weeks.
Well I’m ending this first writing at 2:43 am. Chemo at 9. Do you think I will make it. Will try to get a little sleep – MAYBE. It’s windy and power flickered. Have to reset the alarm clock. Hopefully no trees are down. Oh the things that can stress me. Good Night.
3-2-16 – Big day. First chemo. Arrive early, sign in, get paper, put in correct box and am hearing my name and am shown to a recliner. Want a warm blanket? Yes that would be nice. Hey maybe I can get some sleep during this ordeal. Yeah right. More like FAT CHANCE. Hey would it be possible for the husband to have his own recliner? I guess not since the empty ones say “Just Cleaned.” Meet my nurse. She is extremely nice, comforting well let’s just say the perfect nurse for the occasion. She explains things on my level of understanding and happily answers my questions. Ready let’s get this started. Full name and birthdate. You better know this information off by heart because you will be asked it over and over and over again. First we need to get a blood sample out of the port. Step one remove bandage. Handled that well. Clean area. Now I need to locate the port. She squeezes with much less pressure than you would use to squeeze a pimple. Gross I know but I needed something relatable. Ok it’s in and done. WHAT?? Didn’t feel a thing. Do you mean that you got the blood. Yep. Now to hook up the saline, followed by benedryl, and some other stuff. These drips take quite a while. Later here comes my nurse dressed in hospital gear I would assume as required by OSHA. Name, birthdate. Oh wait while I get someone to verify this. OK name, birthdate. And a bunch of jibberish about the poison that will soon be entering my body. Hook up the bag, click, click no make that drip, drip. I’m ready for you poison. Come on big man do your thing. Kill, kill KILL just go easy on this poor body. Leave the good stuff alone. Oops gotta go to the bathroom. I get unhooked well simply unplugged and me and my dance partner make our way to the bathroom. With relief under my belt I head back to my reserved seat in the dance hall. Occasionally my dance partner leaves off some audible beeps. I don’t know. Maybe it’s some mysterious conversation with the other dance partners in the room. In comes my nurse, pushes some buttons and quiets the savage beast. Well this poison feels just like all the other bags I have had. I feel nothing. Have some snacks and the husband makes me a hot chocolate. Maybe not such a good idea but it did taste good. I almost forgot to mention all the things that if they happen be sure to notify your nurse IMMEDIATELY. I got these upside down blue M’s on the back of each of my hands and it’s grossing me out. My guess as to what they were was correct. The drips of liquid slowly entering my body through a large artery were now entering the veins on the backs of my hands enlarging the veins. Couldn’t it form my name and birthdate to identify me as the prisoner of this disease so all I would have to do is hold them up for you to read. Alright forget I asked. I kept some of you informed of my progress through text messages. Hope it helped relieve some of your worries. Come on dance partner let’s meet with a nice lady who is going to help us get some wig help here. Here is a nice one. No that just isn’t me. Here is another nice one. Well you can take it to your hairdresser to fix it. Oh wait it is real human hair. No thanks. After she goes through all the boxes she finally agrees to get the brochure I had at home. She offers her suggestion when I show her the ones I thought might work out for me. We both agreed on the first one and she helped me choose a color. Hey guys do you like the new me? Well even if you don’t how about appeasing me for once. Also getting a pretty scarf, and two new hats. Plan on registering for a makeup class. Hey you get some free stuff. That works for me. Come on dance partner, let’s make our way back except first let me make a “pit stop” aka bathroom break. What’s that you say. I’m all done. Yeah. Okay now to answer that all important question. Pain level through this most stressful day. ZERO my friends. Yes nothing hurt. Not even a little bit. Next I listen about the possible side effects and what I should do if any of them occur. There are lots of them but I feel GREAT. Off to celebrate. Primanti’s for a cheesesteak. Okay so there is a downfall to all this. The chemo can affect your tastebuds. But Primanti’s did overcome. Lots of appointments to remember like I need this added stress. Now I can worry about missing something else. On my weeks off I have to get blood tests each week. I can deal with that EXCEPT where I want to go they won’t be able to use my new port which means needle sticks. Well remember that piece of artwork I told you about. I can handle it. Remember I’m strong. Well tomorrow will tell the true story of that little lie. And did I forget to mention my new piece of jewelry on my arm. A lovely shade of purple bracelet that denotes I am the proud owner of a medi-port, only in case of an emergency you must NOT utilize it unless you are a certified, qualified registered nurse. Oh well simply add to my artwork. My next dilemma. How to get this out in the www so you my supportive friends can read it. That is if you want to follow along on this journey. Well I tried, sorry but this old person suffers from a huge technological deficit. Please bear with me. One last thought before I close out for the night. I am finding out that my cats are very receptive to the new addition growing in my body. Whiskers a black cat will curl up next to me sniffing the questionable area. This goes on until LilGirl whose space this is moves right on in and chases Whiskers reluctantly back to the foot of the bed. She then takes her turn at sniffing me up one side and down the other and curls around several times before leaning herself right up against me. And so goodnight all the dreaded “S” day is only hours away. I am wearing my “I don’t give a rat’s ass” shirt tomorrow. Will I beat the shot. Only tomorrow will tell.
3-3-16 – Woke up with quite a case of bad nerves but they have since settled down. Ate a bagel and small glass of oj. Tastebuds have been affected. Didn’t taste too good. Need to eat. Must stay strong. Hope these steroids don’t add weight. 11:12 says the clock. Shot is at 3:15. Help me get through it – PLEASE.