Questions for the Doctors

When the cancer diagnosis comes, it brings with it several truck loads of fear and another of questions. I have shared the following lists several times (too many, because cancer is a jerk who just won't go away), and I realized today that it's probably easier to make a post for it so I can just send people the link.

Questions on this list came from several sources: others who walked the path before me, questions I found in searches online, and questions that relate to my specific circumstances. They're good as a starting point for your own list. 

I strongly recommend writing your list down. You may have an excellent memory, but with everything going on right now, it's not a good idea to depend on it. Your brain is overloaded and stressed and scared, and that affects your memory. It sucks to be walking to your car and remember something you wanted to ask your doctor. You think you'll remember it; you know you'll remember it...but you won't. Don't believe me?

Picture it: Baltimore, February, 2016. Probably around 9 pm. Kevin's reading Harry Potter to me; yes, we're adorable. We finally finished the series and the accompanying books a couple of months ago, and now we're reading the His Dark Materials series. It's one of my favorite things we do together. Anyway. I realized I didn't know the last time I had checked my breasts. I don't know why I thought of it. I just did. Divine intervention, I suppose. I decided to check them then, while he read. Almost immediately, I felt it: a huge lump on my right breast. I kept feeling it, trying to figure out how big it was. I finally interrupted Kevin and told him to feel it. Weird, I thought; I'll have to ask Dr. K about it next week. I reached over to my bedside table, opened my notes app to the Dr. K page, and typed: "weird lump". 

I checked the spot a couple more times over the next few days, even outlined it with a pen, because I wasn't sure if it was getting smaller...or bigger.

Kevin came to my appointment with me, as he usually did. I had my exam, which always went quickly, and then I got dressed again and headed into Dr. K's office. He checked my blood sugar chart, and then he asked what questions I had for him. I reached for my phone and pulled out my list. I always had a list. I don't remember the questions any more, but then I got to the bottom of the list. Oh yeah! That weird lump. I told him; he asked if I could still feel it. I tried, and I could. He said let's watch it and check it again in two weeks. 

I'd forgotten to ask about my lump. Granted, I wasn't too worried about it at that point, but still. I'd forgotten to ask. Always write your questions down. Two weeks later, I still had the lump, and I was sent for an ultrasound, which led to the biopsy, which led to my diagnosis.

You can copy and paste these questions into a Word document or a notes app on your phone. Then delete the ones that don't apply to you, and add any other questions that you have. Print the list before your appointment, if you can, or email it to yourself so you have it. Put some space between each question so you can write down the responses, or bring a notebook and a couple pens or pencils. You can also jot down other questions that come to you during your appointment, because surely they will. Again, don't depend on your poor, overworked brain to remember everything. Actually, have a buddy come to your appointment and take notes for you. That's even better, especially in the beginning stages. My mother-in-law came to my early appointments with us and took notes so Kevin and I could just focus on what the doctors were saying. 

I now have a separate note page for questions for each doctor I see (including my son's pediatrician and cleft team), so that I can jot thoughts down as soon as I think of them, instead of having to rely on my very unreliable memory. This system works very well for me, and I feel much more confident and prepared for appointments. 

Here's the list of questions I brought to my first oncology appointments. Many of the questions may not apply to you at this time, but I left them in because they might spark another question for your circumstances. 

Surgical Oncology Questions:

• I would like to know everything possible. Please be open and honest with me.
• Have you ever had a pregnant patient with breast cancer?
• Please explain the pathology report. May I have a copy?
• Are further tests needed? When will they be scheduled? How long to get those results?
• Surgery? What is involved, how long is procedure? How long is the wait for surgery, when will it be scheduled? Lumpectomy? Mastectomy? Is it safer to remove both breasts?
• How long will it take to get the pathology report?
• How long is recovery time? How long will I need to be out of work? What should I tell my supervisor? Can I get a medical leave of absence form filled out from you, if needed?
• Genetic testing: do I need it? When would I schedule it? How does it factor into treatment? How will that change the surgery and or timeline?
• When will I know about chemotherapy, radiation, and other non-surgical treatments?
• Will I see an oncologist? When?
• What are the treatments for my type of cancer? Timeline for each?
• How will this treatment affect my life? Side effects?
• When will I have a treatment plan?
• What can I do differently right now to improve anything?
• How does my diabetes factor in?
• Will the baby need additional tests and monitoring because of this?
• Could breastfeeding still be an option?
• Can you recommend anyone for a second opinion?
• What would you do in my shoes? Or what would you recommend if you had a family member facing this?
• Can you point me in the right direction for figuring out insurance questions and coverage vs out of pocket costs?
• Do you have any handouts with information?

Medical Oncology Questions:

• When do I start?
• How often will I receive treatments?
• What type of treatment will I receive (pills, IV, etc.)? Names of medications that will be used?
• Will I have a port (also called a portacath)?
• Should I bring someone to my treatment sessions? Will I be able to drive afterwards?
  Is treatment on an outpatient basis?
• How long does each treatment last?
• Can I schedule treatments for after work?
• How can I expect to feel following treatments? Will I be out of commission following each treatment? If so, for how long?
• What medications will I have for side effects like nausea/vomiting, fevers, etc? What are the options, and how will my pregnancy and diabetes play into that?
• Can I expect to lose my hair? When?
• Other side effects I haven't considered?
• Is radiation definitely going to be required after surgery, or will that be determined based on how thoroughly the chemotherapy works? Would I receive it before surgery?
• Since surgery won't occur until after chemotherapy, when will my cancer be staged?
• What is my prognosis?
• Are clinical trials appropriate for my case?
• How soon after the delivery of the baby will I start back on chemo?
• Could breastfeeding be an option, even if just for the period of time before I restart?
• How will insurance and co-pays work? Who is the best person to ask about it?
• Do you recommend I see a geneticist? If so, what do I need to do to set that up? Should my close family members be doing anything special at this time?

Scanxiety

Has it really been ten-ish months since I posted? Oh well. Hi, nice to see you again.

I saw my oncologist today, after one of the longest weeks of my life. Last Tuesday, I had a bone scan. It's a fancy imaging procedure where the technician injects a radioactive tracer into you and then does a whole body scan a few hours later to look for areas of concern...in my case, for metastasis.

I've had a bad hip for years. Five years ago this May, I had surgery to repair a torn labrum. It's a ring of cartilage in the hip joint that helps protect it. I tore mine back in the days when I was able to run. The tear wasn't repairable though, so the surgeon just cleaned it up and smoothed things out so I could move more easily. It helped, but I've continued to have difficulty with it, and I've had several more cortisone injections since the surgery. They usually help for a few months before it wears off. No biggie...it's a pain in the ass (literally, even--the pain can radiate), but I can deal with it.

But now...well, now I've had cancer. That changes everything. The fear of recurrence is real, and it is strong. It's bad enough when everything is normal. I have cancer dreams regularly. I sing Finn to sleep and at least a couple of nights a week I find myself crying, praying I'll be able to sing to him when he's five, when he's eight, when he's seventeen and yelling at me to get out of his room for crying out loud!

I had my quarterly follow up with my oncologist in mid-March. As usual, he answered my questions with remarkable patience and a reassuring cache of journal articles and study results to back him up. He pulled up the guidelines from somebody or other about when scans like an MRI or a PET is indicated, and he explained why I do not need them, despite what many doctors in other institutions may order. He also mentioned the risk of unnecessary radiation and the cost-benefit analysis. Okay. I'm good with that. No scans.

Then we talked about my neuropathy, which has improved significantly in recent months, to the point where I stopped taking Gabapentin and found my brain was much, much happier. I can focus better! I can see my entire case load in a week! I feel far more like myself again! I have noticed some of the neuropathy symptoms creeping back in, especially in my feet, but it definitely is not worth the brain fog. I also mentioned that my hip pain is a little worse and said I suspected the Gabapentin had been helping it as well.

The doctor asked how long I'd been having hip pain. This go-around, it's been since the fall. It's been getting worse again, and I'm starting to notice I limp more often. He said that even though he'd just talked about how some scans are unnecessary, there is a low threshold for when he will order them. My hip pain reached that threshold. He explained what the bone scan was and said he wanted to see me back once I had the scan--he always likes to see patients in person for test results.

I scheduled the scan for the following Tuesday. I went in at 10am, got an injection in my arm, laid on the exam bed while a giant X-ray machine of some sort moved around me and took pictures of my hips. I could watch them on a computer screen off to the side. It was cool to watch the scans, but every time something showed up brighter white, I said another prayer.

That part was done within half an hour, but I had to return at 1:30 for the second half of the scan, once my body had time to absorb the tracker. It was snowing by then, and schools were closing early due to the impending snow. I got back to school, saw one more client before the school closed, and then met a coworker for lunch to pass the time until I had to be back at the hospital.

The second part of the scan looked at my entire body. The machine started above my head, so close to my face it nearly touched my nose. I couldn't watch the screen this time. Instead, I alternated praying that it wasn't cancer and doing a yogic body scan to keep my mind from racing too much.

It took longer, and when it was done, I couldn't help but ask the tech what they found, even though I know they can't answer that question. He said he didn't know but the radiologist would read it and the results would be ready in 2-5 business days. The front desk gave me a code to sign into the online portal to retrieve my results.

What shocked me the most was how quickly and how intensely the anxiety set in. When I had talked to my family the Monday before to let them know I was going to have the scan, I told them I was confident it was the same pain I'd experienced pre-cancer and that it was just an extra precaution now because of my history. I believed it, too...mostly.

But Tuesday morning, the day of the scan, I woke with a weight on my chest. It did not go away, and in fact, it got heavier as the days passed. I broke down crying to Kevin several times during the week. Thursday night, I told Kevin about the portal code and asked what he thought I should do. I expected him to say to wait until we saw the oncologist on Monday. He didn't. He said why wait? See if it's there. I waited until we'd completed our evening chores before I went and got the computer to log in. As I cleared the table and cleaned up Finn's toys, my heart was racing so fast I felt like I'd escaped a wild rabid animal chasing me for several miles. My hands were shaking so hard I had difficult grasping objects. Finally, I sat down and entered my information. My most recent procedure, the bone scan, was at the top of the list. I looked at Kevin, took a deep breath, and clicked the link. "Results are not available at this time. Most results take 4-5 business days. Results will not be released until reviewed by ordering physician." Oh. I closed the computer and took several more breaths. Kevin and I hugged, I wiped away my tears, and then I got up and took half an Ativan and went to bed.

For the rest of the week, we kept busy--an intentional move on my part. Saturday Kevin, Finn, and I went into Baltimore for the March for Our Lives. I had to keep yelling at my Anxiety Monster to stop reminding me that I could be marching with a cancer-eaten hip and that maybe this would be the last march of my life. My Anxiety Monster can be a real asshole. We headed out of town that evening to visit a dear friend who lives a couple of hours away and is dealing with her own health issues right now. We commiserated over vodka and grape juice (now known as the Damet Janet, and damn, it is good) and talked about everything from Tom Petty to people who Just Don't Get It to our kids to the ridiculousness of our government.

Sunday night, I was playing on Facebook and saw a post from someone about a Line A Day journal she has been writing in since her children were very small. She talked about how she loved looking back at previous entries and reliving memories. I decided I wanted one and jumped on Amazon to find it. All the ones I could find were five year journals. I broke down again. The Anxiety Monster reminded me that if my cancer had returned, if I was Stage IV, I almost certainly wouldn't be around to finish the journal. I'd be lucky to make it two years. I vented in a cancer support group I'm in, about the fear and how it has turned me into a basket case. I ordered the journal anyway, and then I went to bed, asking Kevin to read to me for a bit first to help calm my brain. He did (we're about halfway through reading Harry Potter and The Deathly Hallows...it's taken us several years to get through the series), but my mind was still racing. Lately, we've been listening to a yoga nidra podcast when we go to sleep, as it usually helps both of us fall asleep faster and sleep better. I also really love incorporating mindfulness into my daily routine. I knew I wouldn't be able to keep focused on the podcast, so I opted for a book that would keep my brain more engaged until sleep, so that I couldn't dwell in the fear. It worked, and I actually slept pretty well.

Today dragged on for what felt like forever. I kept myself occupied, seeing clients back to back--literally returning one to class and getting another all day. Finally, it was 1:10 and time to pack up...and I got a call from the guidance counselor asking me to stop by to talk about a client. That turned into a meeting with the principal of the school as well, and by the time I was finished, it was 1:31, and my 20 minute buffer had disappeared. I walked as fast as I could back to my office--no running in the halls, you know--grabbed my stuff, shut down my computer, and raced back out of the school--I did run that time because no kids were in that area of the building. Traffic was worse than usual. I got to the oncology center at 2:02 for a 2pm appointment. There were eight patients ahead of me waiting to check in. I have never seen it that crowded. Kevin met me at the hospital, having left work early as well. I got checked in and we walked back to the waiting area. We were called back within a couple of minutes, and the medical assistant started to check my vitals. I warned her that my blood pressure was going to be high. I was right. My pulse was high also. We only had to wait a couple of minutes, but even in just that short time, I couldn't keep my tears away. The oncologist came in and asked how I was doing. I told him I was feeling pretty anxious, and as he reached his hand out to shake mine, he said, "Well, I think I can do something about that in about six seconds." I breathed. "Your bone scan was clear. There is no evidence of metastatic disease."

I breathed again. The weight in my chest disappeared.

We talked more about the results and what they did see in the scans (degeneration in my right hip joint, some in my left knee and ankle--never had problems in those joints, so who knows, and some in my shoulders). No cause for alarm.

We talked about the relief I felt, and he mentioned how he remembered me using the term scanxiety before and how he liked it. I gave credit to my cancer support groups, since that's where I'd first heard it. I told him I was grateful he wasn't one of the doctors who orders a lot of scans. I didn't think I'd be able to handle the stress of it.

And then I went to get Finn from my in-laws, hugged him extra hard, and came home. I made dinner, played with Finn, read books, sang to him (yes, my eyes leaked), and then did some of my notes for work. It was life as usual. It's a relief to be back.

Also, Finn said 'pork' at dinner, and it was the most clear pronunciation of the f-word that I think I have ever heard. Later, when he saw his reflection in the chrome of the bathtub stopper, he said 'who's that?' over and over, and it sounded like he was saying 'oh shit.' I love that boy so hard.

Also also, I wore my hair in a ponytail all day on Monday, for the first time in more than two years. I shaved my head two years ago on Sunday. Not all of it wants to stay in the ponytail yet, but it's close enough.

The Titmonster can go suck a rotten egg. I love my life.

I couldn't pick a favorite.