Category Archives: Kiddos

Shopping for my head

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Today I tried on “head accessories” – scarves (untied and pre-tied), turbans, and sleep caps. There were two other women in the shop, both had been through chemo – one of them preparing for her third time fighting cancer.

The women were super helpful with what I would need and not need. They talked about the importance of super soft materials and showed me what to look for in the placement of the seams in a turban and pre-tied scarf. They shared how to wash and care for these accessories. They showed some tricks for handling an accessorizing the “tails” of the scarves.

We talked about skin care (probably get really dry) and nail care (could lose my nails but I can still paint them using special polishes, albeit with limited color options – I’m going to miss regular manis-pedis).

I bought several things, and I gained quite a bit of confidence in figuring out how to rock this inevitable bald-thing. It was actually kind of fun trying on stuff. I look pretty damn good in a few of the turbans and scarves… Best estimate, I have 7-21 days after my first treatment before I start losing my hair.

I also got the contact information for the wig fitter/cosmetologist. She has limited hours at the hospital retail shop, but she runs a salon not far from my mom’s. I hope to get an appointment with her this week/early next to help me navigate the world of wigs and how to draw (hopefully) natural-looking eyebrows.

Shopping included looking for somewhere to store all the new stuff for my head. Some assembly required, but this ended up perfect.

Shopping included looking for something to store all the new stuff for my head. Some assembly required, but this ended up perfect.

Tomorrow, I have a heart test (some of the chemo meds can damage the heart so I need baseline results so I can be evaluated over the next few months) and the installation of the mediport (to administer the chemo and have blood drawn through this process).

It’ll be a long day.

Fun story: I tried on one of the pre-tied scarves this afternoon to show the kids. Lauren’s reaction: “Why are you the only one who gets to be a pirate? I want one, too!”

Genetic testing and other news

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(Don’t miss the biggest breakthrough at the end of this post…)

On Friday, I met with a genetic counselor to determine whether or not it made sense to undergo testing. I filled out paperwork prior to the appointment, but I was not prepared for the in-depth examination of my family tree.

The counselor was much younger than I expected, probably in her 20s/early 30s. We went through each person in my family, their medical history, current age (or age and cause of death), through my grandparents’ generation. The counselor was looking for any patterns of certain cancers, of which there weren’t any in order to justify testing (even through she said up front that my age at diagnosis was enough to qualify me for testing).

Next came a slide show reviewing basic biology stuff – what’s a cell, where genetic information comes from, likelihood of sharing traits from one generation to the next.

Finally, we got to the reason I was there, discussion of the BRCA 1/2 genes and the testing. There is a significant increase in the likelihood of a person with the BRCA gene to get breast cancer. I’ve seen different stats through my research, but the ones used by the counselor indicated that a woman in the general population (no BRCA link) has a 7-9 percent chance of getting breast cancer. If she carries one of the BRCA genes, that risk increases to 56-83 percent. (Similarly, a man in the general population has less than 1 percent chance of breast cancer, but if he has the gene, that risk increases to 7 percent.)

We talked about how my medical decisions would change based on the knowledge of my BRCA status (I’d have both breasts removed), and how that would affect my future chances of breast cancer. The GREAT news is that I didn’t cry – the first appointment since my abnormal mammogram in which tears were not shed. Most of my tears have been around telling the kids, but now that it’s done, I’m okay.

Then we talked about testing options. Genetic testing is still really new, and there have been significant advances in the last few years. The test can be really expensive ($5,000+) but once someone in the family has it done, if he/she shows any abnormalities in the genes, other family members can get tested for just a few hundred dollars. Their tests would not be as comprehensive, but would only scan the area of the gene with the defect, i.e., if there was a problem with the 1,568th part of my gene, other family members would just have that position examined for a similar problem. So if my test shows a genetic tie to breast cancer, my sister could be screened, and based on her results, my niece could undergo testing as well. (Interestingly, the genetic test cannot be performed on anyone under the age of 18. An individual must decide for him/herself whether or not he/she wants the knowledge. So my kids will have to wait to learn their genetic risks.)

I could opt to JUST know my BRCA 1 and BRCA 2 status. Or, I could opt to know that plus the status of a half-dozen other genes with a cancer influence. With the second option, everything tested has recommended medical guidelines for future monitoring, so if I was positive for a gene that could cause thyroid cancer, I could have proactive screenings and tests to monitor the organ’s health.

There was also a third option: knowledge of just about every cancer-causing gene known. Many of these genes and their cancer-causing links are REALLY new, and there are no established guidelines for monitoring (and therefore, no insurance will cover the cost of proactive care).

I opted for the second test – BRCA status plus a handful of other “known” genes with recognized screening/treatment protocols. After a simple blood draw and two small tubes of blood, I wait for two to four weeks for the result.

 

In the meantime:

  • Ethan continues to handle the news of my diagnosis and treatment REALLY well. He’s decided he’s going to take a photo a day of me to chronicle this journey. If it helps him cope, I’m in! More than anything I think he’s focused on his own medical news – we learned Friday that he would need surgery to correct a foreskin issue. I was in genetic counseling during his appointment, so my mom went with him. Apparently, when the doc told him the treatment wasn’t working and he’d need surgery, his response was “no.” Ethan and I are looking at two options, and both of us agree that the least invasive one (small incisions versus full circumcision) is worth exploring. I’ve assured him that taking care of this now is for the best and that this will be one of his favorite body parts in the near future. That got us WAY close to, but just shy of, “the” talk.
  • I bought four new hats this weekend. (Yay for winter hat clearance sales!) I’ve watched several tutorials on scarf tying. I’m heading to the hospital wellness center today to talk about wig fitting and other chemo necessities. I can’t believe that treatment starts at the end of the week. I’m ready, but it’s happening so soon. I keep telling myself that there has to be a beginning in order for there to be an end.
  • Major good work news: I was granted a course reduction for the semester, meaning I’ll teach three (instead of four) courses this spring. The rest of my time will be dedicated to student advising, which gives me the flexibility I need for doctor appointments and much-needed rest. (One class on Mondays and Wednesdays, two classes on Tuesday and Thursdays, no classes on Friday.) I had to jump over a couple of pretty big hurdles to get this, but it’s a REALLY big deal. Classes start next week.
  • And I’m saving the biggest news for last… I’ve had three milkshakes since my diagnosis in December. For those who know me, you know this is a GIANT shift in my long-held belief that there’s a frozen treat season, and one should absolutely not consume frozen treats (milkshakes, ice cream/custard/fro yo, frappes, etc.) from Labor Day through Memorial Day. Turns out, milkshakes taste pretty freaking great any time of year. Who knew?!?

Oncology and telling Ethan: things are moving FAST

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After the MRI fail this morning, I waited around for one more appointment: the oncologist. Several survivors have told me that the oncologist is a super important part of the medical team, so it’s important to have confidence in the doc.

I checked in (the girls at the desk already know me by name – ugh) and sat in the same seat as last time. Again, I was the youngest by far. And again, the elderly patients were enamored by the TV (“The Chew” this time, not Kelly Ripa).

Suddenly three shrill bells sounded, followed by a message, “Medical emergency in the cancer center, infusion room. Medical emergency in the cancer center, infusion room. Medical emergency in the cancer center, infusion room.” All hell broke loose as 13 (by my count) medical people ran down the hall from all directions. It was about 30 minutes before an old man was taken down the hall to the hospital by gurney.

Soon after I was called by the nurse. We went through my medical history and the same series of questions I answered with the surgeon’s nurse earlier this week. I mentioned that I didn’t make it through the MRI this morning, and she said to make sure to mention that to the doc. The nurse took my vitals (blood pressure was a little elevated, but still within the normal range). When she went to take my temperature via my ear, she gently moved away my hair and said, “Oh, your hair is so pretty!” (I started to tear up.) She explained some of the things I could expect from chemotherapy and some of the recommendations this oncologist usually makes to his patients.

I waited for the doctor after the nurse left. “Fuck, this is an oncologist’s office. I have CANCER,” I thought. This was feeling really REAL. This was the toughest wait I’ve had so far. Oncology is SERIOUS. Surgery I get – cut it off, but chemo is scary.

The doctor came in, and I instantly liked him. He made me feel really comfortable. He asked the basics, then he said, “Do you want to just jump right into this?”

He explained the basics of chemo and how it’s changed over the years. Side effects, like vomiting and nausea, are manageable. He encouraged me to think of chemo as “medicine for cancer” not “poison.” His plan includes two phases prior to surgery: phase one will include Adriamycin (aka “Red Devil”) and Cytoxin (with neulasta to help grow cells lost from the two other meds), one treatment every two weeks (4 treatments total), and phase two will include Taxol and Carboplatin (second one only if my body can tolerate it without dropping my cell counts too low), one treatment each week (12 treatments total). With this schedule, I’m done with chemo by the end of May.

We talked about other chemo side effects like menopause (being in my 40s, instant menopause is very likely), when I’ll lose my hair (about 7-10 days after first treatment) and what I can/can’t do (no birth control pills).

Then he said, “You’ll start chemo next week.”

Back the bus up…WHAT?! (Tears. “Shit’s getting real,” I thought.)

We compared schedules – my class schedule versus his breast clinic schedules at two hospitals. We settled on Friday mornings. I don’t teach on Fridays and that gives me the weekend to recover.

He typed some notes in the computer, placed some orders for necessary pre-chemo stuff (a heart test, installation of a mediport in my chest) and wrote a prescription for lorazapam (to help me get through another attempt at the MRI). And he called the nurse to have a “chemo education session” with me.

“You’re young and healthy. I have no concerns about you in this process. I’m confident you’ll do fine with this,” he said.

The nurse came back in with a book to take home (so much casual cancer reading) and several documents detailing the various medications I’ll receive during chemo and those to manage side effects. We spent another 40 minutes talking about my fears and concerns. She printed a prescription for a wig (that’s weird to type!), we hugged, and I left the cancer center.

 

First thought when I got in the car: I can’t hide this from Ethan any more. He’ll notice when I start losing hair… I planned the conversation in my head on the drive home. I’ll tell him tomorrow – Ethan and I are spending tomorrow together (he has a doctor appointment so I’m keeping him home from school).

I got home. Mom had already picked up the kids, and Ethan was working on homework in the dining room.

I briefed my mom and told her I had to tell E. A few minutes later, Ethan said he was ready to review his work. I walked into the dining room. “Hey, pal, we need to talk tomorrow,” I said.

“Is it about your boob?” he asked.

“Yeah.”

“Yeah, I know something’s going on. But I don’t want to talk about it tomorrow.”

“Now then?”

I went back to the beginning. I found a lump, went to the doctor, had some images done. “The doctor told me the pictures looked funny,” I explained.

“Funny haha or funny strange?” he asked.

I made a face with my fingers in my ears and my tongue out. “Well, not funny haha. The lumps weren’t doing this. It was more like this,” I said as I made a sad face.

“It would have been funny if the lumps were making the funny face,” he said. Yeah, that would have been funny.

I continued with my explanation: they took samples from the lump with a needle on Christmas Eve, and they called with the results saying it’s cancer. “The good news,” I said, “is that it’s caught super early.”

“It can be cured?” he asked.

“Yep,” I said. “But the doctors need to do a lot to treat it.”

I explained chemo (“medicine for cancer that attacks fast growing cells. Know what other cells besides cancer grow fast? Hair. I’m going to be bald!” He laughed and studied me for a minute. “That’s going to be funny! I’m going to take pictures of you everyday bald!” Sure, kid, whatever floats your boat.)

I explained surgery. He asked, “You’re going to have ONE BOOB?!”

“Maybe,” I said. “They can rebuild it, though.”

“Will it be removable?”

“Maybe. I haven’t decided yet.”

“Wait… Do they rebuild your boob with metal? Will you have metal boobs? Oh! Wait! Super Mom! You’ll have metal boobs that shoot toxic milk!” he said.

He seemed really disappointed to find out my boobs will not be metal. Nor will I shoot toxic milk from my nipples.

“You’re handling this really well,” I said.

“You said that when you told me you were going to start dating. No big deal. You’re going to live another 60 years,” he said.

Nailed it, kiddo. Nailed it. (Well, not the metal boob part… Where that visual came from makes me a little nervous.)

Tomorrow: genetic testing

Needles in my boob, the meaning of positive, and so much damn cancer information

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Didn’t mean to leave anyone hanging, but I’ve spent a ton of time with the kids and B during the holiday break. From Christmas (and so much playing!) to a New Years (kid-free!) getaway with B, it was a great week. In between the fun, I was researching and reading and plotting all the potential scenarios, but as much as possible, I tried to focus on the kids and B. But now I’ve reached the point at which I need to write this out, to get these thoughts and feelings out of my head. As I’ve said before, this blog helps me process, and I’m going to need to process a LOT during this process…

So the update, starting with the Christmas Eve biopsy.

Biopsy

I don’t think I ever want to spend Christmas Eve morning at the breast imaging center again.

The results of my mammogram and ultrasound were suspicious, so the biopsy was the next course of action. Again, not feeling like I had much to fear, I was in good spirits – looking forward to the next day with the family and the start of a week with B.

I changed into a surgical gown and was escorted back to the ultrasound room. The radiologist who would perform the procedure came in. He was really nice, to the point, and very socially awkward (which I appreciate and kind of adore in people). He explained the procedure and looked at the images from my last visit. In a few minutes, I was warned that the local anesthesia would sting a bit. It did, but it wasn’t bad.

A few minutes later, the first incision was made. I watched on the ultrasound as the first mass was found. I could see the radiologist’s needle approaching the mass.

“One. Two. Three,” he counted. Click! I watched as the needle pierced the mass and retracted back. This went on for six or seven times. Count to three. Click sound. Needle in and out. No pain, but I could feel blood dripping down my side.

Then he made a second incision for the next mass. Same procedure, except he forgot to count. “I’m so sorry,” he said with a little under-the-breath laugh. “I forgot to count. Are you okay?”

I assured him I was fine. Since I was watching the whole thing on the monitor, I could see the needle approach and anticipated the click and needle in-out thing. Besides, I couldn’t feel anything with the local anesthesia.

The nurses laughed as I explained that I figured it out and didn’t need the countdown. “Everyone is different,” Nurse Gina said. “Some people ask a ton of questions. Some want to bury their face in a pillow and not look at all.”

The whole thing lasted about an hour. During that time, the nurses, radiologist and I talked about our Christmas plans, recipes for cooking a tenderloin (two of us were making one for dinner the next day), and recipes for our themed holiday drinks. (We would have Cranberry Margarita Martinis, while Nurse Gina was preparing Frozen Grasshoppers.)

When it was over, Nurse Gina applied pressure to the two incisions for about 10 minutes. That was probably the most painful part. It was SERIOUS pressure. Then steri-strips and a gauze/adhesive dressing. The incisions were so small, Nurse Gina had a hard time finding them.

I had to change the dressing a few times that night because I kept bleeding through. It turned a beautiful purple color. (I joked that it matched the dress I was going to wear on New Years.) And there was a lump where the biopsies originated. But there was very little pain.

The worse thing was the flu that I was coming down with and would battle for the next week and a half.

Then waiting… Having B and my mom around, and the kids of course, kept my mind occupied (somewhat), but there was still the WAITING…

Positive Doesn’t Mean “Good”

Friday at 9 a.m., B and my mom were getting ready to leave, after they both spent two nights with the kids and me. My cell phone rang.

“I just got off the phone with the pathologist,” said the socially-awkward radiologist. “It’s positive for breast cancer. Both areas. Wait, sorry. I should have started with asking how you’re feeling since the biopsy…”

I laughed. I’m good, I assured him. Surprised at the results, but the biopsy area was fine.

“I really suspected it was cancer when I saw it,” he said, “but I had to wait for the results to be sure.”

He told me a nurse would call soon to schedule a meeting with a surgeon.

Tears. I walked out of my office and into the kitchen. I looked at my mom and said, “It’s positive.”

She put her arms around me and buried her head in my neck.

“Positive is good, right?” said Ethan, who I didn’t even realize was in the room. Until this point, I hadn’t said anything to the kids.

“Usually, yes,” I said. “But not usually when it comes to medical stuff.”

I explained that I had a test that showed a lump in my breast and had another test to determine what it was. It was the second test that was positive for something and that meant I’d have to see more doctors to find the best way to fix it. That satisfied him and so far, I haven’t said anything else to him.

(I’ve thought a lot about this. Until I have a plan and more information on my particular kind of cancer, talking about it to a kid who’s been through so much would do more harm than good. I really want to be able to say “here’s what’s up, here’s how we fix it, and everything will be okay.” I just don’t have enough information yet to do that.)

About that time, the surgical nurse called. I had already reviewed the surgeon profiles at the cancer center so I knew which surgeon I wanted to see. I had three options: two general surgeons and one breast-only surgeon. I’m going with the breast-only doc. Of course, she’s out of the country until January 12, so things are kind of on hold until then. She’ll be the one to refer me to the oncologist and radiation doc, and order additional testing necessary before surgery.

Information Overload

In the waiting time, I had an “education session” with Nurse Gina. I brought my mom for two reasons: 1) the cancer people kept asking if I had a support system (since I’d been alone during the mammogram and biopsy) and I wasn’t sure they believed that I did have support, and 2) I thought it would help my mom. (It did make her feel more comfortable.)

Most of what Nurse Gina covered, I knew from my hours of research, but there were two points that caused me to cry.

She explained that since I was pre-menopausal and under 50, I would most likely have to endure chemotherapy. As she went over the specifics and side effects of chemo, I couldn’t help but feel sorry for myself. Losing my hair, eyelashes, eyebrows – “fuckity fuck fuck,” was the only thing I could think as tears streamed down my face. As she continued with the services offered in the cancer center – head shaving, wig fitting, scarf tying, eyebrow makeup classes – more tears. Tears because, quite frankly, I can hide all of this from people, but not if I lose hair. Then I’ll get sympathy looks, which I hate. I also teared because it’s so ridiculously vain – and that pissed me off that I could be so damned vain about HAIR… And it cycled back through again.

The second thing that caused me to cry was when she asked if I told the kids yet. I said no, and explained why and what they did know. She gave me information on how to tell kids, which is somewhat helpful, but given our situation, it’s so much more complicated. I just tear whenever someone talks about or I think about how my kids have been affected (and in some cases, messed up) by so many things out of their control. And at such young ages. This is just one more thing for them to worry about.

Nurse Gina was fantastic during the education session. She made my mom feel completely at ease. She sent me home with an inch-thick book and a two-inch binder, plus a ton of pamphlets and brochures on information and resources locally and nationally. I like having as much info as possible, so I’ve already devoured everything except the book (which seems to be a lot of info I’ve found in my research). And last night, I started researching wigs and scarf tying and the god-awful bras and inserts made for women who’ve gone through breast surgeries.

That’s where things stand right now. Stay tuned… there are still a half-dozen topics I want to write about, and will write about, in the coming days/weeks.

Lump

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I was watching the season finale of Sons of Anarchy last week, when I found a lump in my breast. A big one (the lump, not my breast). Also, don’t judge about why I was doing a self exam while watching TV. (Very disappointed at the CGI at the end of that finale. Lame.)

I called my doctor the next day, and went in for a check up. She did an exam and said she was pretty confident it was no big deal. But advised that I get a mammogram anyway. Besides, I’m 41, and I should establish a boob-baseline.

Yesterday was the mammogram and ultrasound (ultrasound was necessary since I could feel the lump). I was joking with the techs, and watching on the screens. They took a lot of images, but since this was my first mammogram, I wasn’t sure what was normal. Honestly, I wasn’t worried. I’m healthy. There’s absolutely no cancer of any sort in my family. What could go wrong?

I knew it wasn’t good when the radiologist came in to give the results and asked if I wanted to have someone with me during the consult.

Um, I came alone. It’s just a test, right? Surely, she was going to tell me it was a cyst. Maybe it needed drained, but no biggie, right?

So, there are two rather large masses in my right breast. They’re solid, so they’re not cysts and unlikely to be menstrual-cycle related. They’re also not perfectly round. Good news: they’re not spider-webby, just a little pointy on each side. The radiologist was rating the area as a BIRAD 5. The scale only goes to 6, with 6 being a confirmed malignancy. The radiologist said I could wait until after the holiday to schedule a biopsy since there was unlikely going to be a change. Then she left the room so I could wipe the ultrasound goop from my chest.

I sat stunned as the tech ushered me back to the locker room to change into my clothes before meeting with the surgical nurse, who could answer questions.

I just stared at the tan and blue dressing room curtain. What the fuck does this mean?

Waiting for the nurse in her office, I did a quick google search for things to ask when your mammogram comes back suspicious. I never had a reason to pay attention to news articles or information about breast health. All I could think was “shit, I should have paid attention more to women’s health topics.” I felt completely uninformed.

The nurse was great. Straight forward, which I like and appreciate. I listened to information about the procedure, and then asked her my “what if” questions: what if it’s more than just a mass? What if it’s cancer? What are the options if it’s not cancer? What are the options if it is?

She answered everything, straight to the point, no-nonsense. Then sent me to scheduling.

I go in for a biopsy on Christmas eve at 8:45.

I spent last night researching. I’m a researcher, have to know my options. My head is like a flowchart: if this, then that. And I needed to fill in as many of those holes as possible. I like options, even if I never need them.

B called last night. He knew I was going in for tests. I broke down into tears when I was talking to him. It was the first time I cried since getting the news. I cried even more when I tried to go to sleep last night. It isn’t the procedure or even what it might show. It’s how this will impact the kids.

What if…

Then ((tears)).