Prologue

I guess first I should explain the title. I have had cancer twice before and now I may have it again. On the seventeenth anniversary of the day I started chemotherapy for Non-Hodgkin’s Lymphoma, I was having a mammogram for a lump I found in my breast.

I kind of feel like a giant cancer cell with legs and arms. But then I think that this cancer thing is happening to the shell in which my being resides. In other words, my being is not affected by what happens to my body (the shell). How I handle this is what determines who I am and who I choose to be.

I remember when I was told I had Lymphoma. My husband was in the Air Force and we were stationed in Alaska. We had to fly to Seattle to go to a larger hospital. I was in a blur, so I pretty much did whatever I was told to do. Have this biopsy, take this test, see this doctor, attend this class, and talk to these people. I did all that. Everything that was done to my body helped, but there was one thing that made me understand that my body isn’t who I am. I walked into a waiting room shortly after my arrival to Seattle and saw a woman with no hair who was wearing a Levi, floppy hat with a huge daisy holding up the front of the brim. She was smiling. I thought at first, What does she have to smile about? But then, I got it. Her body may be ravaged by the disease, but her spirit was alive and well. I decided then that I would also be that kind of patient. It was the best decision I ever made. (I also found a hat like hers and wore it a lot.)

Eight chemo treatments, two biopsies, one insertion of a Groshan catheter, countless blood tests and CT Scans, two blood transfusions, and self injections of a drug to keep my white blood count up and I became a survivor instead of a patient.

Two years ago, I was told I had Endometrial Cancer. Age and experience gave me enough wisdom to say “Just take out everything. I don’t need it anymore.” One CT Scan, one surgery, one small infection, and I was good to go.

And now this……

I am writing this in a day to day format, because I don’t want to forget what happened when and also because my readers (whoever you are) will understand how long it actually takes to get on the road to treatment and, hopefully, remission.

Peace,

Tracy

Days One Through Five

Day One - Friday

I actually didn’t find the lump, my husband did. We were taking a shower together and as he was washing me, he raised my arms. He started to soap up my boobs and suddenly stopped. “This wasn’t here before,” he said. The whole day changed. He got out of the shower, leaving me soapy and doing a self exam. I looked at him through the fogged shower doors; he just put his head down and left the room.

I was more hurt by his reaction than I was by the discovery, so I turned off the shower dried off and followed him to the bedroom. “Why? Why did you walk away?” I said.

“Because I’m scared. I’m so scared.”

You see, cancer doesn’t affect just your body and spirit. It affects all who love you and their spirits. My husband’s spirit was crushed and I felt that it was my fault. Which was stupid! I have no more control of the fact that I may or may not have cancer than I have control over whether the sun rises or not. And yet, guilt was there.

I promised him I would call my doctor on Monday and get in as soon as possible.

We continued our day with a huge new visitor. Nothing felt right anymore.

Day Two and Three – Saturday and Sunday

We were busy. We spent Saturday in Phoenix. I went shopping and Randy tried to help put his new (well, new to him) semi in good working order. I told my sister-in-law because I knew she had had a lump that turned out to be nothing. She told me to get it checked out and call her.

No more talk about the lump or the doctor or what may or may not be growing inside me again.

Day Four - Monday

Got a much needed pedicure with my friend Joanie. She’s so cute and always seems to be happy. It’s kinda contagious. Didn’t say anything to her about the lump. So far, I’ve only told Randy, Kat, my dad, Boneda and Jennifer. If it’s nothing, I don’t want to worry too many people. I’ll let everyone else know when I get the results of the biopsy.

I called my OB/GYN who couldn’t squeeze me in until the end of the month. That didn’t make Randy happy, so I called my Family Practice doctor and her nurse squeezed me in that afternoon.

My doctor is always late, but always takes lots of time with each patient. I guess that’s why I’m willing to wait for an hour to see her. She walked into the room and said, “So, you’ve grown a lump.” She did the exam and she recommended a mammogram. I asked loads of questions. She gave me a few answers and a referral.

I went to my car and called the Radiology office to set up an appointment. They had one for Wednesday. I took it and then called one of my oldest and dearest friends. “Could you come with me on Wednesday? I’m having a mammogram to check out a lump.” She didn’t hesitate in saying “yes”.

My body was tired, but my spirit was lifted.

Day Five - Tuesday

Honestly, I just wanted to get in my car and drive to anywhere but here. I always feel that way when I’m uberstressed. I just want to drive. Just head for the coast, sit on the sand, and breathe in the salt air. It doesn’t do a thing for my shell, but it renews my spirit and I really needed that. But finances being what they are, I didn’t go. I just worked on some things around my house and waited for Wednesday.

Randy left this morning for work and I don’t know when I’ll see him again.I feel very alone.

From the Mammogram to the Biopsy

Day Six - Wednesday

At this point, I have not said a thing to my children. I don’t want them to worry about things that may or may not be. Even though they are in their thirties, they are still my babies and I try to protect them all I can. Which is stupid, but I do. I will tell them when I get the results and know what it is. Good or bad. Then we can all get our spirits together and help each other. Right now, I would just be asking them to wait and worry and worrying wears down the soul. We’ll save the worrying for later, if we have to.

My appointment for my first mammogram EVER was at 10:40, so I was about ½ an hour early and Kat was about 5 minutes late. We’re funny that way; each of us with our own little quirks that kind of meld together.

The mammogram went better than I had expected. I had visions of torture chambers in my head, but it was alright and there was even a teddy bear I could hold. After a glimpse of the mammogram, they did a sonogram. My FIRST sonogram. (Just one big day of firsts.) The radiologist reminded me of a 50’s version of a Yale graduate and it was all I could do to keep from laughing.

After a review of all the pics, they wanted me to come back and do a biopsy. Actually two biopsies – the normal one and one to check out some calcified spots. All this is on my left breast; nothing shows up other than the lump and the calcifications, so I take that as a good sign. I make the appointment for the biopsies for the following Monday. Change back into my clothes and Kat and I go to have coffee.

Day Seven, Eight, and Nine – Thursday, Friday, and Saturday

Not much going on. Normal stuff, like housework and grocery shopping. I talk to Randy a lot on the phone and decide that I want to get my genealogy caught up and work on the journal I’m making for Amy. All of a sudden, my brain is saying I need to get these things caught up. I went through this before and I’m trying to think if it’s just something everyone does after they find a lump or if I truly know that something is wrong. All this time, I’ve thought only that I had a lump, but all of a sudden I think it could actually be Cancer again and I begin getting “my affairs” in order. Seemed like the natural thing to do. I also wrote out a new “bills to be paid list” and finished the squares for my granny square afghan. I guess, if nothing else, the lump has made me finish projects all over the house.

Day Ten - Sunday

I went to church with Boneda and Robert at 7:40 am. Didn’t like it. It felt more like a production number for a little theater than a church service. I won’t go again, but I would like to test out a couple more churches on Sundays when Randy isn’t home. He hates church. Something that happened to us a long time ago he just can’t drop, but that’s him – not me.

I spent the rest of the day with the Andersons watching football and shopping. I laughed a lot, which is exactly what I needed.

At Kohl’s, I spotted a necklace with the pink crystal cancer ribbon on it and told myself not to buy it. No need for that now. Don’t even know what this is yet.

Day Eleven - Monday

Biopsy day! I spent the morning cleaning the kitchen and such. Kat came out to pick me up. We had a fast lunch and headed back into town. I popped a Xanax in the parking lot. As soon as I walked into the building my blood pressure went through the roof, my face was all red and the nurse was surprised at how high it was. After talking to me for a long time about exactly what they were going to be doing, my blood pressure dropped and my Xanax kicked in. I was in a happy place.

First procedure, I felt like a 1955 Buick that was lifted up so they could work on it. My left boob was sticking through a hole in the table and I had to lie still while they probed and poked and stuck needles in me. It wasn’t much fun, but way better than the other biopsies I had endured.

After this one, I was whisked away to another room for the next one. Much easier, much less time.

The radiologist who performed both biopsies was great; caring, concerned, calm. She told me she wouldn’t have the results until Thursday and I should call my doctor then.

I was sent home with an ice pack on my breast and instructions not to do anything tonight and most of tomorrow. Kind of hard to do when you basically live alone. I made some tomato soup and a really good grilled cheese sandwich for dinner and settled in with my ice pack to spend the evening watching TV.

WIN, WIN, WIN

Day Thirty-eight – Sunday

You never really know how fast you can clean your house until someone calls and says “Are you home? We were thinking about dropping by.” We were sitting in the living room watching the football game in our jammies (JAMMIE DAY!) when we received the call. I heard Randy say, “Sure, we’re just sittin’ around watching the game.”

Panic! Folded clothes were on the dining room table, dirty clothes were on the floor, the beds were not made and we looked like we had just rolled out of bed at 2:00 in the afternoon. So, here’s how the mad dash went – Randy vacuumed the floors, I put the clean clothes in a basket and put it in the bedroom, I put the dirty clothes back in the clothes hamper, then I got dressed, then he got dressed, I dusted, we put the dog out, made one quick look around the house, closed the bedroom door, and sat back down on the couch. The work that normally takes me most of the morning to do was accomplished in about 20 minutes.

We had a lovely visit with Randy’s parents and thanked God for telephones.

Day Thirty-nine – Monday

We were both dreading this day. Randy was going back to workplace that he quit 6 weeks before and was not real happy about it. I was going to see the Oncologist for the first time and felt anxious.

But the day started on a good note – PEDI DAY! Joanie and I got pedicures and talked. She always makes me smile.

Randy went to work to fill our paperwork. He told his boss that my needs were his utmost priority right now and his boss said that they would work around my appointments. I must go kiss that man. At least give him a hug.

As Randy was doing this, I was at my doctor’s office having my stitches removed from the Pillsbury Dough Boy incident of January 1. Everything looks fine. You can’t even see a scar.

We then met at Arizona Oncology to meet with Dr. Swart who was going to give us the results of the HER2/NEU which would determine the future course of action. She is great. She explains things so that we can understand, she asks questions to get a better picture of where I am, and she gave me some pretty great news. The HER2 was negative, which means no chemotherapy! I wanted to do a happy dance right there, but I abstained.

She drew a little flowchart for us – so I’ll share it with you.

I have an early stage breast cancer because my tumor is less than 2 cm and I have no palpable lymph nodes. It is a ductal cancer, which means it starts in the ducts of my breast. My estrogen receptor is positive (good) and my progesterone receptor is positive (good). My HER2/NEU is negative (good).

After my surgery, they will biopsy the tumor to see if the Oncotype (genetic test) is low, intermediate, or high. If it is low to low intermediate, I am done – no chemo. If it is high intermediate to high – chemo.

She is going to put me on an Anomatase Inhibitor for 5 years so that the estrogen that is still being produced in my body will stop. Where does the estrogen come from since I have no ovaries – my liver and my fat cells. Who knew? This medication will cause me to go through yet another menopause with joint pain, vaginal dryness and bone loss. Randy’s eyes were rolling around in his head. Damn, I’ve already been through menopause twice with her. Again? Geez! He didn’t really say it, but I knew what he was thinking and we laughed about it later.

She wants me to get a baseline Dexa Scan, but no CT Scan or PET Scan. I hear the Dexa Scan is a piece of cake. She drew some blood to test for Vitamin D and I may have to go on a Vitamin D supplement to help with the bone loss.

She was amazed that I have had cancer 3 times with no family history and she says it’s just bad luck. But she is determined to make it the last time I have cancer and I believe she will. As I’ve learned through experience, we cannot predict the future; we can only adjust our lives to what it brings.

It was a very good day. I am so very happy that Randy found the lump when he did, that he changed jobs so he could be closer to home, that he loves me and wants to live through this again. I am happy I have friends who will take me to doctor’s appointments and family who cares enough to take me to the emergency room. My angels are all around me and we are ready for the next step.

Plus, I get a breast enhancement out of the whole thing and I am going one cup size bigger.

It Cannot Conquer the Spirit

June 19, 2014 – Day 195

I look at the number of days since Randy found the lump in my right breast and I can’t believe it’s been such a short amount of time.

In that 195 days:  I’ve had my first (and last) mammogram, I’ve had my first sonogram, I’ve had two breast biopsies, I’ve had a double mastectomy, and I am now on my way to having my breasts reconstructed. And that’s just what has happened with my breasts. It seems like a lot to happen in less than a year.

The nurse who did my second injection was very good. She was a breast cancer survivor and was very conscious of my feelings. The needle was not so painful and when I complained about the pressure, she slowed down the rush of saline into the expanders. She said she would pass this knowledge onto the other nurses, but I hope I get her again when I go tomorrow.

I’ve gotten into a schedule with my saline injections (as far as level of pain and ability to do anything). I get the injection on Friday and am just starting to feel the muscles stretch by the end of the day. Friday night is rough because I can’t find a comfortable setting on my bed and the muscles are starting to burn. Saturday is wasted because all I want to do is not move, not go anywhere, not cause any stress on my muscles. By Sunday, I feel like I can do some things, but not overdo. On Monday, I’m doing a little more without pain. Tuesday is better. By Wednesday, I’m back to my old self and I have a tendency to overdo. Thursday is my wonder day. I actually feel well and rested and doing things around the house doesn’t bother me. But, then comes Friday, and the cycle begins again. But only for a few more weeks.

I have a grand total of 450 cc’s of saline (on each side) in my expanders now. I tried on my bra the other day and, if I had a nipple, it would have fit. So, I figure I am about a size B right now. One of the people I know had a total of 450 cc’s of saline and is now a size D. It depends on your overall body size and proportion as to how many cc’s equals what cup size. Plus, all manufacturers of bras use different measurements for their cup size. So, in all actuality, I have no idea what cup size I will be. I will stop the injections when I look in the mirror and say “Yep, this looks right.” I have 3 more appointments scheduled. If I stay at 100 cc’s for each appointment, I’ll have a total of 750 cc’s of saline in my expanders.

The reason it hurts is because my muscles and my skin are being expanded with every injection. If you have ever run a marathon or done about 5,000 push-ups, you’ll understand what my muscles feel like. If you haven’t, just know it’s not fun. It’s a burning, achy, crampy feeling and it’s not real fun. Muscle relaxers help, but I rely more on Advil.

On a different subject, I stopped taking my Anastrozole. This was the pill the oncologist gave me as an estrogen inhibitor because my breast cancer was caused by estrogen. Anyway, I was having mood swings that were terrible, but a couple of days ago, I scared myself. I was violent and after I calmed down, I had a very bad panic attack and felt so very embarrassed. I called my doctor the next day because one of the rare side effects of this drug is dramatic mood swings and depression. She was out of the office, but a colleague called me back and said to stop taking the pill. He also said, “Bad things happen when we mess with a woman’s hormones.” I’m going to speak with my oncologist next week, but she will have to do a lot of talking to get me back on those pills. I have read many studies and the chance of recurrence of primary breast cancer is only lessened by 14% if I continue to take them. I didn’t find any studies about the chance of recurrence of secondary breast cancer. I’ve had cancer three times and I know from experience that the quality of my life – right now – is more important than the possibility of 14% in the future.

Randy told me that he wouldn’t talk anymore about getting nipples surgically done. Perhaps I will just have them tattooed on with some other beautiful decoration also. I was hoping he would come around, but I didn’t want to push the subject. I was more than willing to give the nipples a try, but I’m so tired of surgeries and being poked at and being in pain. He knows that and understands and I love him for that. It’s not that I needed his permission to not get the nipples, but I wanted him to be okay with it and he had to get there on his own.

It’s hot here in the desert and I don’t go outside at all unless I’m in an air conditioned car. I hate summers here. Randy’s job is slowing down, so his paychecks are way less and I can’t go looking for a job right now (like anyone would hire me anyway – been down that road before I got breast cancer). We are thinking about moving yet again.  I may send him off to find a job without me and I will remain here to sell the house and get all our stuff loaded up, but that can’t be done until after the reconstruction is finished and I’m healed from my final surgery, so it won’t be until late this year or early next year. We are taking a vacation this fall to Texas to see if it will be our forever home. I’m tired of moving, but I know I don’t belong here. It doesn’t feel right.

My sister-in-law’s dearest friend has a nasty form of cancer and is losing the battle. I think of her often and hope that a miracle happens for her and her family and my sister-in-law. I also hope that if that miracle doesn’t happen, her pain will be over quickly and she will be able to rest quietly.

I hate Cancer. It robs so many people of so much. However, this poem tells us what it CAN’T do.

Cancer is so limited that:
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit