Do you want the good news or the bad news first? I’m usually one to take the bad news first. You know, rip the bandaid off and save the best for last. How about you? Well, if you’ve happened upon this blog, it’s likely that you or someone you love has heard the word CANCER come out of the mouth of a highly educated person in a white coat. If that’s the case, am I safe in saying that you’ve already heard the bad news? I guess that means I get to share some good news. Lucky me!
I’m Anne Tobin and I have the sincere privilege of knowing one of your strong and beautiful bloggers, Becky Gehringer. Through our insanely similar experiences with Sarcoma, we have shared a lot of ups and downs along the way. I’m honored that she asked me to share my story but before I do so, I’m just going to frontload it with the ending because if you’re “cancering on the internet” (is that a saying? I think I just made that up), you likely need some good news by now…Right? SO – here it is! I have been breast cancer free for 14 years and Sarcoma free for 7 years and all that before the ripe age of 40! So – there you have it! If you just want to stop at the good news, I don’t blame you one bit! But – if you want some more detail, feel free to read on.
My husband Chris, and I got engaged in March 2008 – HURRAY! One night about a month later, we were watching tv and I happened upon a lump on the top part of my left breast. It felt different, new and kind of like it came out of nowhere. My mom had battled breast cancer too. First diagnosed at 46, her cancer was not properly eradicated but thank God we moved to a larger town a few years later and although it had spread, it didn’t take her life. She is healthy and happy and just got a clear biopsy today at 75 years old – GO MOM! I knew it might happen to me, but I was only 25 so each tech, nurse and doctor assured me that it was likely fibrous tissue. I fought for the biopsy anyway, followed by a lumpectomy which found me back in the office for results one week later (alone) because “I’ll just go in, they’ll tell me it’s nothing and I’ll go home so we can enjoy our weekend.” Well – this might be a familiar part for you. That’s not exactly what happened. “You have cancer.” “You’re joking right?” “No, I don’t joke about things this serious.” Silence, followed by a lot of information about BRCA testing and treatment options and not a lot of information about how BAD it was. One horrible LOONG weekend later and I found out I had a 99.9% chance to live. WOAH. Ok, sort of out of the woods. So – 6 weeks of radiation sunburns later and I was ready to go on Tamoxifen for 5 years. I was feeling rocked but definitely not knocked out. Two years later during a routine MRI and mammogram the doctor found another suspicious spot in the image. This time, I fought to get rid of them both. Sorry girls but you gotta go!! The doctors agreed. There is not much that prepares you for the recovery after a complete bilateral mastectomy. It is no cake walk but may I just say that now at 40, I still have some pretty perky looking boobs with or without a bra?! And no more nipping out?! I mean, I’ll take the upside there. Ok – trust me, I’m not trying to make light of cancer or losing your woman-hood but I have learned to process the trauma and then focus on the upside.
Soo moving on. While taking tamoxifen you are not to get pregnant. Upside again, lots of fun married Chicago living, traveling, working on our careers etc. Fast-forward to Tamoxifen day 1,825. HURRAY! Let’s try and have a baby. Ok, month after month of nothing. Why is it so hard to get pregnant? Seriously, so hard! Ok, take clomid. Nope! Ok, take letrozole. BINGO – pregnancy number 1 has begun! Beaming and glowing and ready to enter right into happy, suburban, family living. Except, NOT. Right around week 9 I went for a run and almost had an asthma attack running up a very, VERY small hill two blocks from my house. Ok, don’t run while pregnant, Check! But then, the rib pain started. Fast and furious, breath stealing kind of pain, on and off throughout the day, until it finally got so bad that I went to the ER. Pregnancy isn’t great for ER folks because they can’t run any good or meaningful tests on you unless you’re having, say, a heart attack. No CT, no XRAY and also no eating (did I mention I was pregnant) and I got sent home after about a day in the ER with unidentified chest pain. Finally 2 weeks later the pain was so consistently acute and I was so out of breath we had to go into the ER again. This time, I could barely make it from the parking lot into the front door and yet, “Are sure you want a CT?” “YES! Something is wrong, please figure it out.” So – they wheel me into the CT, take my pic, then wheel me back out. Ten minutes later, they wheel me back into the CT again and wheel me back out. This time – “We need to admit you. We aren’t exactly sure what it is but your lung is collapsed and your chest is completely filled with fluid. We need to put a chest tube in to drain it and try and figure out what it is.”
What IT was, was a 12 cm Synovial Cell Sarcoma tumor growing out of my left diaphragm and into my left lung. It’s a 3 in a million cancer made even rarer by the fact that it was in my chest and not on my arms or legs and even rarer because I was also 14 weeks pregnant. Would you believe that Becky had the exact same thing? Pregnant too?? We are literally 2 in a million SPECIAL! But I digress….
Six Rounds of pretty unbearable chemo followed. Ifosfamide (just UGH!) and Adriamycin (AKA the RED DEVIL) double UGH. I truly don’t know which one was worse and I hope I never again have the chance to figure it out. Five and a half weeks of proton therapy followed – little laser beams pointed at very specific areas to target just the tumor. Science is so rad! The radiation was honestly kind of a mini-vacation between the super awful (chemo) and the double awful (surgery). But by God’s grace the chemo and radiation did its job and shrunk the tumor quite dramatically so surgery was a go. I had a super awesome Thoracotomy to remove the tumor which I must admit is WAAAAY more painful than a mastectomy!! Then because, as I mentioned before, I’m super special, I got a BONUS second thoracotomy surgery because my wet tissue-paper like lung tissue became unstapled and opened up to my empty fluid-filled chest cavity. So this time I got more chest tubes to drain my fluid-filled chest cavity while I waited for my surgeon to return from being out of the country – double awesome. They took more of my left lung (1 have ⅓ left on one side) and sewed my left latissimus muscle to the healthy lung tissue in an effort to make a secure attachment. More Science awesomeness! Then ONE MORE BONUS trip back to the hospital because my take home morphine pills backed me up so bad that I could no longer expel food the natural way and it was coming right back up at every meal. Let’s just say that my husband and parents are saints. They have seen it all and THANK GOD they still love me anyway! If you’re wondering what happened to my pregnancy – well – he is in heaven now. My doctor has told me multiple times that our baby saved my life. He is not wrong. He is an angel and was never meant to walk this earth and I thank God for the beautiful raw way that He sent our angel into our lives at a time we needed it the most.
So…that seemed like a lot of bad news written in a funny, sort of sarcastic, upbeat way. Is that like wrapping a piece of crap in beautiful wrapping paper to fool people from the fact that it’s actually just a piece of crap? It might seem like that to you but I assure you it is not. People say that cancer is a gift. Although I wouldn’t exactly say that cancer itself is a gift, I will tell you this: What I have gained from my experience with this level of awfulness FAR outweighs that which has been taken from me. I wish I had more time to go into this with you. In fact, I would love to sit down with you over a cup of coffee or just water maybe if you can’t stomach coffee because of the stupid chemo you’re getting and just talk. I would love to hear you tell me about your story, about your aches and your missed opportunities. Tell me what angers you and scares you but also what you might have found amazingly beautiful. What is your faith like? What are your relationships like? How have your priorities shifted? This journey you are embarking on was not of your own choosing, because who in their right mind would choose it? But it’s not exactly what it seems either. In fact, cancer is much more than the sum of its awful parts. So hang in there and try your best to find the upside when you can. Lord knows, there will be days you can’t and on those days I always found it best to just go to bed at like 7 pm preferably with an ativan. But as my dad said the moment I told him I was diagnosed. “Anne, you have two ways to handle this, you can go around moping and get angry at the world or you can take two steps forward, decide what needs to be done and do it to the best of your ability and trust God with the rest. At the end of the day, whichever road you choose, you still have cancer.” Well – I chose the upside. How about you?