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

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.


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.

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

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.


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.


It comes when you least expect it. You thought you were doing fine, maybe even doing well. But then, this darkness – a black hole – appears out of nowhere, right in the middle of your path. You’re drawn to it. It just seems so…right. Peaceful even. Calm maybe. It draws you closer and closer and closer. You want to go there, but at the same time…

You’ve been there before, in its depths. You know what’s in that darkness. It’s misleading – there’s no peace or calm. There’s just… nothingness. When you’re in the darkness, you don’t even want to move. Lifting an arm or leg is almost impossible, no matter how hard you will your limb to JUST MOVE, DAMMIT! You’re eyelids are heavy. Your ass feels weighted to the seat – you don’t want to get up for anyone or anything. You hear the voices of your loved ones, but you just don’t care. You hate being in the dark. You hate what the darkness does to you.

I know there’s complete nothingness in the darkness. I know going there will not be pleasant, and I’ll hate every second of being in its grasp. I’m trying to stay out. I’m trying to ignore it. I’m trying to stay in the light.

Light at the end of the funk

I’ve spent the last month or so in a sort of funk. Not really full-fledged depressed (I don’t think). Not really sad. Just sort of…detached. The semester has been eh (even though I had a great first semester evaluation). Family life has been eh (even though we’re turning corners on both Ethan and Lauren’s needs). Friends have been ignored. (Friends, I am so sorry for ignoring emails, FB messages, phone calls, etc. I love you all and appreciate you, really I do!) Anything extra in life has been nonexistent. And I’m kind of over feeling this way…starting now.

So, a few updates to hopefully kick-start me into more regular posts again. (Goodness, I feel so much better venting here, just getting stuff OUT, but I haven’t even felt like doing that lately.)

Ethan: new therapist is great. She’s actually asking about Mike and how E feels about his dad’s death and alcoholism. We’re kind of in a “things are going to get worse before they get better” kind of pattern, but improvements are starting to come. We’ve started a new discipline system at school, which has made a huge impact. In fact, several teachers stopped me on Friday while I was volunteering to tell me how well he’s doing since the new system has been in place.

Lauren: she’s being evaluated for the next phase of her speech therapy, and words and phrases are coming along more clearly every day. But, hot diggity, she’s hit the terrible twos in a BIG way. She’s also incredibly independent, to the point where it’s easy to forget she’s only two. She’s completely potty trained, picks out her own clothes and gets dressed on her own, puts herself down for bedtime (and she’ll go up to her room willingly for nap time, but actually sleeping during the afternoon is iffy), gets her own snacks.

Marathon: yeah, not happening. Combination of weather (wow, it snows here!) and my blah feelings, I just haven’t been training in any way, shape or form.

Loose ends with old job: Negotiated the amount owed to erase the relocation debt. It was still a HUGE amount, more than I’ve ever written a check for, but it’s done. Free-and-clear from old job.

I know from the online widow forums that setbacks like what I’ve been going through are common. I just need to force myself out of it. I’ve done it before, I can do it again. I went out with friends last weekend (and had a great time) and I have plans next weekend (OMG do I have plans! LOL! More to come on that…) I’ve emailed a few friends from old job about getting together for dinner. I just need to get out, focus on LIFE, and recharge so I can be a mom. Ethan and Lauren deserve that.

Finding help – I hope

I met with the new therapist last night. (Man, it was a cold night with -25 degree wind chills… If this wasn’t for Ethan’s benefit, I would have stayed home in my sweat pants under a down blanket!)

New therapist (D) is awesome.

Her office was filled with kid stuff, toys and books and games. It was very different from Ethan’s previous therapist’s office, which was cold and not kid-friendly with its diplomas on the wall and mismatched dorm-like furniture. I was also relieved to see two other kids coming out of another office – the boy was about Ethan’s age and the girl was maybe a year younger. Proof that this place GETS kids and knows how to work with them. (Never really saw kids at the old therapy place – no one under teen years.)

We sat down and she asked me to go over the timeline of events starting with Mike’s death last year.

“Actually, I think it started before that,” I said.

I recounted for her what’s happened in two years – Lauren’s birth (Ethan was no longer the only child), finding out Mike was drinking and lying and hiding it (lots of tension and arguing in the house), my dad’s death (Ethan let out a piercing, heart breaking howl when the Marine presented my mom with the American flag), neglect when Ethan was left alone with Mike (Mike drank until he passed out and forgot to feed or care for Ethan), my mom moving in with us, more tension at home as Mike was dropped from the outpatient rehab center, the loss of my job and the drinking ultimatum I gave to Mike, going to court, Mike being taken to the hospital and moving in with his parents a few states away, relocating the family to another state, Ethan starting a new school, Mike dying.

I explained to the therapist that Ethan’s behavior is very different at home and school. There’s no anger at home. There isn’t impulsive behavior or inappropriate outbursts when he’s with me or my mom. I talked to her about my belief that Ethan is processing his grief and losses, and he’s worried when he’s not around me or his grandma. I told her others want to diagnose him as ADD/ADHD, but that I wanted to hold off until I thought Ethan could process and deal with the grief issues. She nodded, she understood my theories.

D listened to everything, taking notes, asking occasional questions. She asked about his previous therapy experience and what was discussed. I told her that the former therapist never broached the subject of death or grief. Instead he concentrated on helping Ethan get along with his peers – necessary yes, but not helping the underlying problem. D was mortified.

“This kid’s been through a lot,” she said. “Grief and loss are major parts of his life. We’ll work on it.”

Ethan has his first appointment with her in one week. Fingers crossed.


On a related note, it’s been a tough week for Ethan. He’s been in trouble at school for outbursts and anger and arguing with teachers.

Last night, I was on my way to pick him up from the after school program when the director called. Ethan was having a panic attack, she told me. He was yelled at for pushing a kid while playing tag and he lost it. They couldn’t calm him down.

Luckily, I was minutes away from the school. When I got there, Ethan was in a quiet, dark room across the hall from the rest of the kids. He had his head down and was sobbing. One of the program leaders was talking to him, rubbing his hair.

I asked him what was going on, what happened. He lifted his head and said that it’s almost the time when his daddy died last year.

We sat in the dark room and cried together for a few minutes. I gathered his things in the other room, and we left.

Right or wrong, I’m not going to lecture or yell at him for misbehaving this week. He has enough on his seven-year old mind this week.


Late last night, I got an email from one of my mom friends. This mom knows the anniversary is coming up. Her daughter is in Ethan’s class:

During prayers tonight, I asked the girls if there was anything special they wanted to pray for and KL said, “I would like to pray for Ethan.” I said that was a great idea but asked if she had any reason and she said, “He just looks like he needs a friend, mom.” So I told her maybe she should try to be a better friend if it looks like he needs a friend.

I fear that Ethan’s anger and outbursts will alienate kids (and their parents), leaving him without friends or a support system. I only hope the other moms and kids in the class show this kind of compassion as we continue to move through these tough times.

It’s a good reminder not to judge others: you just don’t know what they’re going through.

Parenting is hard.