Waiting for the Shit Storm

This morning I had my six month follow-up with my oncologist Dr. David Heyer. I was more anxious than usual, my panic attacks set in on Wednesday knowing this appointment was quickly approaching. I asked Matt to go with me for support.

Just walking into the office my body began shaking, I could feel myself swallowing continuously to encourage myself to keep my breakfast down. Please don’t throw up. My hand shook as I wrote my name on the sign-in sheet and handed my insurance card to the receptionist. I sat in the waiting room trying to slow my heart rate. I transitioned all the nerves to my foot and shook it violently. To anyone else sitting in the waiting room, I looked calm and collected. My fear was successfully masked, except Matt could see through it.

He gently placed a hand on my knee to calm my foot and then held my hand. He pulled out his phone and started reading me the morning news headlines … my focus shifted and the anxiety subsided.

Once back in the examination room, here are the topics I discussed with Dr. Heyer:

Tamoxifen under a microscope

Tamoxifen: Most people don’t realize this, but I am still receiving treatment for cancer. Just because my hair has grown back and I look healthier, doesn’t mean I’m cured. I am on a five-year therapy of Tamoxifen which suppresses the estrogen in my body to prevent the cancer from returning. As of this year, I only have one more year on this drug. It will be October 2013 that I will be considered “cured.”

Although this sounds like wonderful news, for me, it is a huge source of anxiety. Dr. Heyer explained that I am not alone. Most people think of Tamoxifen as a safety blanket … it has kept the cancer away and now my body will be exposed to having a recurrence. The good news is the side effects I have been experiencing on the medicine will finally end.

My side effects started during the third year of Tamoxifen and include:

• Night sweats 
• Insomnia 
• Inconsistent periods, which has now pretty much stopped 
• Deterioration of my tendons (specifically my Achilles tendon) 
• Weight gain 
• Nausea 
• Heighten anxiety 
• Tired and low energy 
• Low sex drive 
• Mood swings 
• Depression (some patients even experience suicidal thoughts) 
• Numbness and bad circulation in my hands and feet, which is progressively getting worse 
• And recently, piercing headaches

Hopefully my period will become constant again and Matt and I can try and have a baby. Dr. Heyer suggested I meet with my Women Physician Dr. Gloria Ivey-Crowe and find out from her the probability of my period returning and also how long I will need to wait once finishing the Tamoxifen (October 2013) before I can safely start trying to have a baby. (If I were to get pregnant while on the Tamoxifen, our baby would have severe birth defects.) Dr. Heyer seemed to think three months would be a safe window, but wants to speak with Dr. Ivey-Crowe as I get closer to that point. Dr. Heyer also suggested meeting with a fertility doctor when we are ready, so that we have all the resources we need to increase the chances of getting pregnant.

Fertility drugs and anything that alters my hormones will not be an option for us with my cancer being ER+. If it happens it happens and if it doesn’t, we are OK with that, too. Matt and I already have a name picked out for our sweet baby, regardless of whether I can physically have her or we adopt her. If we want a family, we will have one. There are so many babies that need a loving home and we will find her and love her unconditionally.

Post-Tamoxifen: The topic I was dreading talking about …

me:  “What is the plan once I finish the Tamoxifen therapy? Do we look at marks from my blood work? Or should we do imaging every six months to scan my body?”
Dr. Heyer:   “Blood marks don’t work well for breast cancer. If you were a 70-year-old woman I would not be averse to imaging, since you might not see the effects at the 15 year mark. But you were so young, Jennifer, when you had cancer. I would be afraid to image you that much and cause a recurrence much later in life. If you get cancer again, I will find it or, most likely, you will.”
me:  “How will I know? Will I just become a hypochondriac and call you every time I have a headache or ingrown hair!?”
Dr. Heyer:  “You can always call me. Something like a pimple on your nose or an ingrown toenail, we can easily identify as not being cancer. The most common secondary cancer after breast is lung, liver and bone. And because your cancer loves estrogen, add ovarian into that mix, too. Let’s say you move into your new home and do something to your back. The pain persists beyond three weeks … we would be conservative and go ahead and do a bone scan. Does that make sense?”
me:   “Yes, but I’m not quite sure where I find the balance between brushing off symptoms and thinking everything is cancer. That is something I will need to work on. I understand some of that is always normal after going through a trauma, but it is important for me to get a grasp on it.”

Dr. Heyer left the room and Matt could tell I was anxious.

Matt:  “Jen, I know this is hard to hear, but we’re all going to die. I could die tomorrow or in 50 years …”
I listened patiently wondering where this was going.
Matt:  “… It’s like pooping. You don’t walk around holding toilet paper all the time just in case you’re going to poop. When you have to go, you find some place and poop. No one walks around with a wad of toilet paper looking panicked in the streets thinking, ‘What if I have to poop?’ You can’t stop living and appreciating life because of something that you cannot control.”

And there it is … oh Lord, he has such weird analogies, but when it came down to it, he was absolutely right and made me giggle in the process. Little does he know, this is why I carry tissues in my purse. You can never be too prepared when poop strikes. Logically, I understand his point, but putting it into practice will be tricky. I know I have my work cut out for me.

BART:  Insurance will not cover me having the new genetic test, BRACAnalysis® Rearrangement Test™ (BART), because I need to meet two requirements: 1) young age when diagnosed with cancer (I meet this one) and 2) family history of cancer. Because I don’t meet the second requirement, insurance will not cover the cost of the test. My oncologist, Dr. Heyer said he isn’t worried about it because it would only be a one to two percent chance that I would test positive. Although the percentage of someone developing stage-III breast cancer at the age of 26 was less than those odds ... and I got it.

Having the test would help determine the probability of a secondary cancer, like ovarian. I could be proactive in my treatment if I tested positive and go ahead and shut my ovaries down. Also if I have the gene, I would be passing it to my child, which might determine whether or not Matt and I want to try to have a baby. I still want the test. I just need to figure out how to pay for it.

Removing My Ovaries:  In 2008 when I was diagnosed with stage-III breast cancer, Dr. Heyer said that by the age of 40 I needed to have my ovaries removed to prevent a secondary cancer. When I asked him about it again today he said he wanted to wait to have the discussion. He wants to see if my period returns after I am off the Tamoxifen and give Matt and I a chance to conceive.

Depending on all that, he may recommend removing my ovaries, giving me a shot that basically turns my ovaries off without having to have invasive surgery or something new that’s been created in the next ten years. There is a hormone therapy, much like Tamoxifen for women who are menopausal, which unlike Tamoxifen has NO bad side effects. Instead it has amazing properties that help the body. I will most likely go on that medication when I am menopausal.

I am still processing the appointment and feel like a crazy lady in the street panicked with my wad of toilet paper, waiting for the shit storm. I guess all I can do is trust my medical team and try to find some balance mentally and physically with it all. I desperately want a plan of action. I want it all mapped out and for someone to tell me I will be OK. However, these types of things don’t work that way. I have to look at the task at hand and put all my energy into staying well and managing the side effects while I finish my Tamoxifen treatment over the next year. I’ll see Dr. Heyer again in another six months.