I did a monthly self exam every month and had my annual... well... annually. I had a clear base-line mammogram when I was 35. I was supposed to go in for my first annual mammo about two weeks prior to turning 36, but a nurse from my doctor's office called and told me the mobile imaging machine broke down... so I rescheduled for the next available appointment. It was June and they couldn't see me until August. My first thought was, "No problem... I've just have my annual and got a clean bill of health. No biggie."
So life was pretty normal through that summer. Dave moved in while he was working in Everett, I was working for VoiceStream, we were getting ready for Dad and Linda to come out... things couldn't have been going any better!
So here's the story: I'm adopted. In my early 20s I contacted the Barker Foundation to obtain my non-identifying information. When the packet came several months later I learned that my maternal grandmother had been "surgically treated for breast cancer" at the age of 42. My gut inclination was if she had developed breast cancer by 42, then I was going to start my screening at 35. It was a gut feeling that saved my life.
On August 24, 2001 there was a message waiting for me at work. There was something suspicious on my films and they'd like to re-test me... an appointment was set for September 24. I can't begin to explain the gamut of emotions I experienced daily... and unless you've taken the journey, you couldn't understand. FEAR was the biggest. I knew I had breast cancer, something inside told me I did. Dave, my parents, my friends, and co-workers all kept saying "it's nothing" and I put up a good front.
My co-worker (Laryn) went with me. The whole procedure took about 15 minutes. Then came the worst part... waiting for the results. They promised I would have them no later than Friday... and Dave's birthday was Saturday, I was taking him to Pacific Beach. He called me on my desk phone about 12:30 PM to ask if I'd heard anything... and my cell phone rang. It was Dr. Thomas. He waited while I took the call. When I heard "you have cancer" whatever she said to me for the 10 to 15 seconds immediately following just washed over me. How could I have cancer at 36? Why? I'm a good person! I asked her if we shouldn't go away for the weekend. "No, don't let this rule your life." At the same time she gave me the name of a surgeon to call and make an appointment with.
I picked up my cell phone and told Dave. I was trying to not shake and not cry... without hesitation he said, "We're going to beat this." Not you, we... it was the best thing he could've said. My boss was a little shocked with my reaction. We went into a conference room and I cried for about 3 minutes... they I told him I was going to beat this...
Perhaps the hardest thing I had to do was tell my parents. My maternal grandmother died from breast cancer several years prior to my birth, so this was a touchy subject. My dad immediately began doing research; mom was stoic and supportive.
We met with Dr. Richmond early the following week. I was swinging from highs to lows but was relieved when she referred to my dime-size IDC (invasive ductal carcinoma) as "curable" and my surgery was set for Halloween. The doctors didn't seem in any great rush to remove the cancer, so I lit a fire under them by saying, "My boyfriend has a very sharp pocket knife... I'll have a few drams and take it out myself if you don't." I think I got my point across... My surgery options were: mastectomy or lumpectomy. The doctors felt I was a perfect candidate for the breast-conserving surgery, so that's what we decided on. The procedure would be done as "same day surgery" and I'd go home the same afternoon.
The next weeks were a blur. I phoned the Barker Foundation (my adoption agency) and asked them to contact my birthmother. On the chance that I had a half-sister out there, she was at high risk to develop early-onset breast cancer, too. I had to let them know...
For anyone getting ready for this surgery remember this: FEAR IS NORMAL! Here's the course of events I underwent: checked in at 0700, IV in at 0745, radioactive tracer injected at 0930 (this is so they can locate the sentinel lymphnode... the node is removed and put thru a battery of tests to determine if the cancer has possibly spread), wire locator inserted at 1000 and additional mammos taken (let me tell you... having a mammogram done with a wire inserted in your breast is a truly "interesting" experience), nuclear medicine for tracer location pictures at 1015 (at this point we're now running about 30 minutes behind), waiting for surgery at 1130... walk into operating theatre at 1145... nervous as hell whole time...
I don't know how spiritual people are... and as I said I was terrified... I'm in the process of going under and I hear (clear as a bell) a woman's voice say: "Honey, you're going to be just fine... do you think I'd let anything happen to you?" I remember smiling and then waking up with tears running down my cheeks in the recovery area (I don't know why my eyes were watering). At first I thought it was my grandmother coming to reassure me, but I knew the voice to be my great aunt Imogene. Imogene had also been diagnosed with breast cancer, and she lived to be 94! And it was such an Imogene thing to do and something she would have said!
Dr. Richmond delivered great news... my margins were completely clean and there was no sign of cancer cells in the lymphnode. Her words to me were: "You're cancer-free!" The whole procedure had taken about 2.5 hours and I was ready to go home!
On 15 November I went to see an oncologist and his assistant who will remain nameless. I'll call them doctors Josef and Josefine Mengele. Chemotherapy had never even been mentioned as part of a follow-up treatment... I'm cornered by these two (literally) and told that I have a 30% chance of dying, and that if the cancer were to go anywhere else all they could do is make me comfortable in my last days. That, by the way, is a direct quote. I was told that my fears were insignificant...
Let me make one thing clear to ANYONE going thru any sort of medical crisis. MAKE SURE YOU FEEL COMFORTABLE AND CONFIDENT WITH YOUR DOCTORS. I have medical and physiological reasons I did not want a port-o-cath... I was told by these two that you I felt was irrelevant. I went back to my surgeon and GP and they found me Dr. Ellis... a wonderful, caring, straight-forward oncologist who told me the decision was mine. And I decided to go the chemo route. If I had a rogue cell somewhere I wanted it dead... and I opted for the most brutal (and quickest) path through chemo... AC (Adriamycin & Cyclophosphamide)... and then I heard from the Barker Foundation...
Dr. Ellis agreed that I needed the support of my mother... and Dave moved me over to Port Orchard so he could be there for me. Mom flew into SEATAC on 18 December and the following day at 1000 I went in for my first chemo.
It's really anti-climatic. They put an IV in the back of my hand (if you look at the picture above you'll see a dark line on my right hand from a vein that took on 3 chemos before saying "no more"), they drip fluid into you for about 1.5 hours. The drug that makes people sick is the Adriamycin. It's a red "Kool-Aid" color that the nurse has to put into you slowly. They want to know if there's any burning, discomfort, etc... because this is the stuff that kills everything. Lance Armstrong is one of my heros and I used a variation of a creative visualization he mentioned in his bio... I love ice hockey, and my favorite player is Tie Domi. He's a bully on the ice and I visualized millions of little Tie Domis skating into my veins and hunting down any rogue cells and... up against the boards! Into the penalty box with any bad cells! Ejected from the game! Go Tie! Go Tie! Whatever works for you... do it... and here are a few helpful hints...
1. Take Milk-of-Magnesia the night prior to your treatment. There's no nice way to say this: the meds will make you wonder when the last time you ate concrete was. Continue to take this vile fluid in the sickening blue bottle at least twice a day for the next 2 to 3 days.
2. Make sure whatever goes in counts. This translates into protein, protein, protein. I ate lots of eggs, no fast food, and drank lots of skim milk. My counts never "bottomed out" and I stayed healthy (only one bout with an URI)
3. Things are going to taste bad for about 4 to 5 days after your treatment. Anything sugary tasted awful to me... a lot of people talk about a metallic taste... I never got that. Things just tasted bad.
4. Keep on top of the nausea, don't let it get on top of you. I started taking my anti-nausea meds as soon as I got home from a treatment and I never got ill!
5. Have your treatments on a Wednesday or Thursday... and plan to be out of action for about 4 to 5 days. My treatments were on Wednesdays, my worst days were Saturday and Sunday.
6. Get your hair cut as short as you can stand it and cut your nails down. If you're going thru AC you ARE going to lose your hair... there's no avoiding it. I lost everything from the knee up. It does start to grow back as soon as you don't have another treatment on day 21. I HIGHLY recommend NIOXIN for anyone coming out of chemo. You can find it at salons and salon supply stores. Get the shampoo and scalp therapy and start using them on day 22 after your last treatment. These products were initially designed for people going thru chemo. Note: if you're opting to go thru CMF chemo NIOXIN might help you keep more of your hair.
7. Don't fool yourself into believing you're prepared to lose your hair (unless you've been bald before). NOTHING prepares you for losing all your hair in about 36 hours. And honey, you're gonna lose more than just the hair on your head... I lost everything from the knee up!
8. Don't push yourself. When my oncologist told me I would feel fatigued, I thought she meant tired... I didn't realize she meant muscle fatigue. I had to walk 6+ blocks from the ferry to the bus and by block 4 I was crying because my legs hurt so much.
9. Get ready to gain weight. You're going to be on steroids and I packed on 47 lbs. I've taken off half of that since I finished chemo. Another note: I'm a walker and my legs now look like a speed skaters. There are some pluses to this!
10. Don't spend a lot of money on wigs. I own two and I hardly ever wore them. I bought a few scalp protectors and pads thru TLC. I didn't have the energy to mess with a wig every morning... and frankly, going to Wal-Mart or Target and getting a few hats is a lot cheaper! If you do get a wig, go to a local store and then think about donating it to the American Cancer Society once you're done.
11. Keep a positive attitude. After my first treatment I told myself "I've 25% done" and so on... it really does go fast...
About a month after finishing chemo (when you'd be going in for another treatment), I started using NIOXIN and went to see my radiation oncologist, Dr. Badiozamani. The first thing you go through is this multi-hour "measurement" session (and I've got 3 little pin point tattoos). This is so they know WHERE to aim the rads. I went to the hospital every morning, 5 days a week, for 35 treatments. Honestly, it took longer to get undressed and redressed than to have the treatment. I was fine until the last 5 sessions... my skin started to break (like a bad sunburn). I used domboro compresses and everything was fine. A week after treatments ended you couldn't even tell I'd had them! Word of advice? I used Aquaphor (a gel-type ointment) after each treatment and at least twice during the day.
I went into a study program, because I firmly believe knowledge is power. I hope whatever can be learned from me and my experience will help other men and women in the fight and defeat of these diseases. And because my birthmother died from ovarian cancer... I knew that regardless of the outcome, I was going through an oopherectomy (removal of the ovaries).
As I said in the beginning... everyone's journey through cancer is personal... one's choices are personal and may not be right/comfortable to another. The choices I made, while they could be seen as drastic where what I felt I needed to do. I got the results on my birthday... and the lucky number was 1... and while others might have been frustrated or confused or any number of emotions, I was happy. I knew what to do. Remove my ovaries and breasts.
While I wanted kids, I knew adoption was always an option. The crux of the issue for me is: the gene stops here. I couldn't live with the chance that a son or daughter might have to endure what I did. Besides, I have three beautiful step kids through Dave, and through them, Nicole and John Allan!
The ovaries left in August 2002. I haven't missed them or the monthly reminder that I'm a woman since... and Dave likes the fact that he doesn't have to look forward to my going through menopause... I'm already there! The surgery was out-patient and mom came out to help me. Cake walk! I was going up and down stairs that same afternoon!
The bigger decision of the breast removal. For me it was a no-brainer. I didn't like the numbers for a chance of developing a new primary. But there's the hurdle of "how will he see me?" Dave summed it up with one statement: "I'd rather have you flat-chested and with me than the alternative." Dave's concern was for me... that this was going to impact my self-esteem or that I'd regret it.
I lost Dr. Richmond as a surgeon, but Dr. Miholov (the surgeon Dr. Richmond recommended for the ovary retrieval) set me up with Dr. Wechter, and I couldn't have asked for better!
I was ready to go home that night. They released me at 0830 the following morning, completely impressed with my ability to bounce back! The hardest part (most painful) was the four drains I had coming out of me. I felt like something out of "Monster Garage", but when I went into the bathroom and saw myself without breasts... I smiled at myself for the first time in a year and a half. I KNEW I'd made the right decision...
As I mentioned, I opted NOT to go through reconstruction. I don't wear my prosthetics when I go to the pool or the beach. If someone has a problem with me being flat-chested, that's their problem... not mine...
Strong family, strong friends, and strong beliefs helped me conquer cancer everyday. I don't know how religious or spiritual folks are... but my God does not hand me anything I can't cope with. My God, my family, my friends all stood by me and were my biggest cheering section. And I'm thankful each and everyday for the strength and for those who've come into my life... I couldn't have done this on my own!!!
Here's my plea: ladies... a mammogram saved my life. Surgery and pharmaceuticals saved my life. Please, please... if breast cancer runs in your family, start at 35! If you're diagnosed, please don't think that losing a breast is the end of the world! Listen to your doctors, feel comfortable with your surgeon! Chemo is livable... and I hate needles. And remember, the best revenge where cancer's concerned is not only to live well, but to LIVE!
