Tag Archives: Family

Fatigue, Brows, Oxygen, Kiddos – Updates

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I’m tired. Really, really tired. I need – nope, I require – a nap every day, and bedtime is definitely before 10 p.m. (usually closer to 9, really). The oncologist says this is because of the cumulative effects of the chemo. Including this week, only five more rounds (11 rounds DONE!). Thank goodness. Fridays at the cancer center are starting to wear me out.

I met with the surgeon on Monday. I still have the choice of lumpectomy or mastectomy, and I’m thankful to have options since many women don’t. As I expected, there are more doctors to see (radiology oncologist tomorrow and plastic surgeon TBD) and more test to schedule (mammogram and ultrasound) before surgery. I reiterated my desire to have surgery done and recovery complete before next semester (Labor Day). Right now, that looks do-able.

Other updates:

– Classes are done, and I’ve never been happier to get to the end of the semester. I’m almost done with grading, and since I’m teaching the same three classes in the fall, prep time for fall will be minimal. I’m looking forward to resting and just taking it easy. (And naps whenever I want – yay!)

– Drawing eyebrows is hard. My eyebrows and eyelashes are nonexistent these days, and without any hair on my head, I look… like a cancer patient. I’ve tried eyebrow gels and pencils and powders and crèmes… I’ve tried freehanding the brows and using a variety of stencils. I usually get one dark brow, one lighter, one with a nice arch, one flat across, one super wide, one a little too narrow. Basically, if you see me IRL, please only look at my right brow – it’s the better one most days. And forget lashes – I’ve glued my eyelids together more than once with my “eyelash wigs” (Lauren’s term for false lashes).

– My oxygen levels are still not always where they need to be. I continue monitoring myself with a pulse ox meter I bought at Walgreens. Walking from my car to the office causes my levels to get in the low 90s/high 80s. And even though the levels climb to the high 90s pretty quickly, I find myself short of breath with a really rapid heart rate for a while. After talking to the doc, I think some of this is related to not having much stamina – it’s been about two months since before the fever and the pneumonia and even feeling blah before that. So almost two months since I’ve done much. I’ve started walking on the days when I can (Fridays, Saturdays, Wednesdays, Thursdays – the other days, I’m zapped). It’s slow going, but Ethan usually walks with me and cheers me on. I’ll get the stamina back – it’ll just take time. And I really hope that’s the answer to getting oxygen levels more stable, more often.

– I’ve coined a new phrase – “free balding” – which amuses me to no end. “Free balding” means going out in public without a turban or scarf or wig or anything on my bald head – basically, it’s going cranially commando. Used in a sentence: “It’s crazy hot so I’m going to free bald it to the grocery store.”

– Ethan has REALLY stepped up in the last few weeks. Reports from his teachers and the principal are that he’s really maturing this year, and his behavior is much better than at the beginning of the year. He’s been just amazing through this whole cancer thing. He looks out for me – if I’m chilled, he’ll bring me the thermometer and insist I make sure I’m not running a fever. He’ll proactively do things around the house, like clean bathrooms and take out the garbage. He’s been helping with Lauren, and he’s been very cuddly. He’s a great kid.

– Lauren turned five on Monday, and I almost forgot her birthday. Blame it on end of the semester craziness or chemo brain or just being a bad mom, but her birthday slipped my mind until late Saturday. It was a mad scramble to order cupcakes for school, bake cupcakes for home, figure out birthday presents (and shop and wrap), pull together decorations. Sundays and Mondays are my “worst” days – basically, I just don’t want to do anything – and those were the days I had to take to pull off all-things birthday. It happened. She was thrilled. And now she’s five. (Hot damn, my baby is five…)

When asked what she wanted for her birthday, Lauren replied, "Cupcakes!"

When asked what she wanted for her birthday, Lauren replied, “Cupcakes!” (She also got her first “big girl” bike, ballet classes, and some toys.) 

Going backward with grief: Ethan update (also genetic results are back)

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While Ethan has handled the news of my diagnosis well at home, apparently he’s not doing as well at school.

His teacher emailed last night about problems staying focused and being disruptive in class. He told his teacher that he “wasn’t allowed” to talk about my cancer. He was also in trouble for saying “Paul Revere rode like hell to warn the Colonial militia about the British.” (OK, he shouldn’t have said “hell.” I get it. Also, thanks, History Channel documentary for putting that phrase in his mind.)

I went out for drinks with colleague friends last night, so I didn’t get home until nearly kiddo bedtime. My mom took Lauren upstairs for a bath, and I sat down with Ethan. “What’s going on?” I asked. “Do you know why your teacher would have emailed me today?”

He started to rub his eyes. He admitted that he has too much on his mind: my diagnosis trigger thoughts of my health, my mom’s health, and the deaths of his dad and grandpa. He also feels completely abandoned by Mike’s parents, who remain MIA (despite having multiple ways to contact us).

He’s afraid to say anything to the kids at school because he thinks a few of them will make fun of them or laugh about my hair loss. “Ethan, most of the moms know,” I told him. “And if anyone makes fun of you because I have cancer, I’ll call their parents directly and take care of it. Or I can take the kid out on the playground and kick their ass. Your choice.” (Wisely, he opted for me not to kick any kids’ asses.) I also assured him that I am fine, and I’m going to remain fine.

I assured him my mom is doing well. Her health issues seem to have disappeared, and other than arthritic pain from passing weather fronts, she’s doing really well.

We talked about Mike, and he cried because he can’t remember many of the good things about his dad anymore. I told some stories, and we laughed.

Overall, I think we’ve lost traction in the grieving process. We’re back to Ethan blaming himself for his dad’s drinking (“I should have stopped him. I should have told you.”), and Ethan worrying about what happens to him and Lauren if something happens to my mom or me.

The solution is just time. Time and talking. Time and talking and the generous understanding of those around him.

Good God, this kid’s been through a lot in his 9 years.

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Unrelatedly, genetic testing is back and… of all the genes tested, all are negative for mutations. My genes are normal! This means genetics did not cause the cancer, and I don’t have an increase (compared to the average population) of getting breast cancer again or any of the other cancers examined in the test (brain, thyroid, ovarian). What it doesn’t answer, though, is why I did get cancer. It could be environmental. It could be a mutation on some other gene yet to be discovered. It could be that science just doesn’t have the technology to “find” the mutation yet in the genes examined.

I really don’t need the answer for “why me,” and I’m taking this as very good news. The information will help me and the medical team finalize surgery plans. It also means the kids do not need genetic screening for these cancers. However, Lauren will need to talk to her doctors when she’s in her early 30s about starting mammograms sooner than traditionally recommended.

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)).