Weekend update

It’s Sunday night, and I’m feeling pretty damn okay. Little lazy, but not over fatigued. Aware of my bones, but not in pain or discomfort. Slight headache from lack of caffeine since I’m concentrating on water consumption. (I’m allowing one coffee or one soda a day.) I’d say on a scale from 1 (feeling completely shitty) to 10 (feeling great), I’m about a 7. I’m okay with that, especially since the docs predicted today would be the worst day post-treatment.

  • The day of and the day after my first chemo, I felt somewhat hyper. Lots of energy, lots of talking, almost restless. I got some stuff done around the house I’d been putting off. I played with the kiddos. Ran a few errands. No nausea at all, but I’m on four different anti-nausea meds through Tuesday. I did start having hot flashes, though. Oh boy, hot flashes are going to suck. (Luckily, not as many today.)
  • Big lesson learned over the last two days: when the nurse says “drink as much water as you can to flush the meds,” she is not issuing a challenge. Day of chemo, I drank 200 ounces of water in about eight hours. Saturday, I drank the same over about 10 hours. Too much. I felt like a beached whale by the end of the night.
  • Yesterday, my mom (who hasn’t left my house since Thursday night) deep cleaned/disinfected the entire house. I’m talking bleach and Lysol and every nook and cranny. My house smells super sterile.
  • I found my “cranial prosthesis” (aka wig). It was a great experience. The shop is owned by a woman who has been through cancer two times. I explained that I didn’t want to be old-looking or look like helmet-head, newscaster hair. I tried on about six wigs. One was a complete no, the other five were contenders. I took pictures and mom, the kids, a few very trusted friends and B weighted in. Everyone agreed on my first choice, which is very close to how my hair looks when straightened. A few positive comments on a second one (one friend called it “French assassin. Cute but sexy,” so I decided to order both. Unfortunately, there aren’t any nice curly hair wigs, so I’ll be straight for a few months. But, it’s probably for the best – if my hair grows back straight, I’ll be used to it.

Glad to be going back to work tomorrow. It wasn’t the holiday break I imagined, but I’m thankful I had the time to get so much medical stuff accomplished and have the time to process what’s going on. I feel good about where I am with my medical team and treatment plan. I feel pretty good physically and mentally.

No doctors until Friday, then it’s a quick appointment to check my blood levels and discuss how the week went. Next chemo treatment: February 6.

 

Genetic testing and other news

(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?!?

Don’t talk about death – it scares the children (aka: f-you after-school teachers!)

Ethan started opening up at school to his friends and teachers about his dad and his death. He really hadn’t said anything or even wanted to talk about Mike at school in the past. And it all started with a book the class read a few months ago.

In this story, the main character, a little boy, notices changes in his grandfather with whom he lives. The grandfather becomes very sickly, unable to get out of bed and his personality changes dramatically.

It was while discussing the grandfather’s illness and its manifestations that Ethan spoke up for the first time. “Sounds like what happened to my dad,” he said. He then started talking about how Mike was a great dad – until Ethan was about three years old. Then he started to get mean and yell at Ethan for no reason. And how Ethan, as a four or five year old boy, couldn’t wake his dad up, and how Ethan rarely saw Mike get off the couch in the basement. Ethan talked about his memories of hearing about his dad’s death while at school and the funeral and how he felt about his dad’s passing.

The reading teacher, who was Ethan’s first grade teacher when Mike died, was stunned that he was opening up. The class was quiet as they listened respectfully. One little girl came up to the teacher afterward to tell her she understood Ethan a little bit better after his story.

The teacher called me that night to tell me this story – and to see what she should do if/when he opens up again. “Let him talk!” I said. “It’s good that he’s comfortable with his classmates and you. He needs to get these thoughts and emotions and feelings OUT!”

She completely agreed and was very happy to hear that I was supportive of allowing Ethan to talk.

Fast forward to this week.

Ethan’s school lets out around 2:15. I teach until 3:15, then have a 40 minute commute, so Ethan attends an after-school program run by the local parks and rec department. He’s been in the program, with the same leaders, since he started at the school. They’re familiar with our situation and Mike’s death. And they’ve been very supportive and understanding as we’ve gone through milestones and anniversaries.

Until now.

Apparently, Ethan decided to open up to a group of kids this week. I’m not sure what triggered his desire to talk about his dad’s death, or even what EXACTLY he said. But the leaders of the program freaked out.

I arrived shortly after the “incident.” The leader pulled me into a nearby room to talk privately. “Ethan was talking about his dad’s death today,” she said.

“Yeah…” I said.

“And it freaked out the kindergarteners. So we told him not to,” she said.

“Not to what?” I asked.

“Talk about how his dad is dead.”

“But that’s his reality. His dad IS dead. It’s not right or wrong, here or there. Mike is dead,” I said.

“Yes, but we don’t want the younger kids getting scared that their parents will die,” the leader continued. “So we asked him to talk to us and not the other kids if he wants to talk about his dad’s death.”

“But the kids’ parents ARE going to die. We’re ALL going to die. Ethan just learned the lesson earlier than most kids,” I said. “It’s healthy and natural, and I’m encouraging him opening up about Mike’s death if he wants or needs to.”

“He can talk about it with me or Miss B, but not the other kids,” the leader said. “It scares them.”

“So you told him NOT to talk about death?”

“Well, he can talk to us, just not the other kids.”

“But the other kids can talk about their moms and dads?”

“Of course. And Ethan can talk about you and his sister and his grandma. But not his dad.”

“Do you see a problem with that?” I asked, as politely as I could but starting to get really irritate.

“No. Death scares the kids.”

“Yes, and this is the life Ethan lives. He lost his dad and his grandpa. The kid has experienced more death than some adults I know. This is his reality, and he needs to be able to talk about it.”

“Well, I just don’t think he should talk to the kids about it.”

I grabbed Ethan and walked out of the school. Over last few days, I’ve tried to steer conversations with Ethan toward finding out what happened, without asking directly. He hasn’t mentioned anything nor seemed phased by what happened. The after-school teachers also haven’t mentioned it again – but I grab Ethan and leave as quickly as possible. I’m not really interested in small talk with them right now.

Would you be as pissed off as I am about this request to NOT talk about his dad?

Unexpected direction

Grief is a weird thing. And it’s back, sort of, in a weird way.

I’ve been fine, GREAT actually, for the last year. The kids are doing well – they’re funny and smart and kind and doing well in school and all-around awesome. My mom continues to struggle with some minor health issues, but she’s thriving in her own home now (which the kids LOVE to visit). My job is fantastic – reviews of my teaching have been over-the-top positive and there’s a move to make my position permanent (and possibly become equivalent to a tenure appointment). My relationship with B continues to grow, and we’ve had the most amazing times with each other and our kids.

Yep, things were rolling. Happy. Fun.

B and I decided to go to Chicago for the weekend. It’ll be our second trip there together (but the first time he got really sick and we came home early). We checked our calendars and agreed on a date. It wasn’t until I opened my calendar to write it down (yes, I still use a hard copy calendar) that I noticed the actual DATE.

January 25.

The second anniversary of Mike’s death.

Thoughts flooded my head: Do I cancel? Would it be wrong to be in Chicago (my favorite city in the world) with B? Would it be awful to be having FUN on that day? To laugh, to kiss, to hold hands with someone?

Overwhelmingly, I thought no to all these questions. Mike and I were separated when he died! I had filed for divorce! We should have been divorced, but dammit, he refused to sign the papers! I should be enjoying my life! I’m going, no biggie!

But I felt the need to gut check someone so I called my mom. “Go,” she said. “If anyone deserves to be happy, it’s you. You and B should have a great time. I’ll have the kids. It’ll be okay.”

(Side note: Ethan knows the anniversary date is coming up, but he doesn’t know the exact date. Lauren has no concept of when/where/why/how of her dad’s death. Because they don’t “know,” we can memorialize on a different calendar date.)

And for weeks, I’ve been completely okay with the decision that I will be in Chicago with B on the second anniversary. Until yesterday.

I’ve been hit with feelings of sadness. Sadness that my marriage failed. Sadness that I missed so many signs. Sadness that my kids will grow up without knowing their dad (the good parts, of course).

It isn’t so much that Mike is dead and cremated and buried. It’s more of the loss of what was. The happy times of our marriage and relationship. His physical death has become a symbol for the loss of the life we HAD. It’s all just coinciding with the date on the calendar.

I’m not changing my plans this weekend. B and I will still go to Chicago and enjoy each other’s company and take in the marvelousness of an awesome city. But I owe it to him and our relationship to let him know what’s going on in my head and with my feelings/emotions.

So I’ve scripted out the conversations I need to have with him tonight. Letting him know what I’m going through and what I need from him (random and unexpected calls and texts, hugs and hand holding).

It’s the first “anniversary” that I’ll go through while not “alone.” There are milestones for milestones on this grief roller coaster, aren’t there?

Coincidences or signs?

It’s been a weird 12 hours.

First, there was the amazing sunset after the balloon launch at Ethan’s grief group. What I didn’t say in my post last night was that on my balloon’s message to my dad, I asked for a sign that I was doing things okay, and that we’d be all right. Enter the most magnificent sky ever. I’m taking that as a sign from my dad.

Then I realized that I “knew” the new guy in grief group. First, his son looked familiar, like I had seen him before. Then the daughter’s name tripped alarm bells (it is not a common name). And the timeline of his ex-wife’s life from cancer diagnosis to their divorce to her untimely death was strangely familiar. I checked an obit this morning, and sure enough, the kids’ names and his name match. He’s the ex-husband of a former co-worker who died earlier this year. (I wrote about her in a previous entry, but I made the post private because “people” were searching for terms associated with her and stumbling across my site.)

This would be odd enough, but in one of the last emails that Donna sent to me, just weeks before she died, she talked about her kids and my kids and wanting to get them all together for a play date. I guess now they’ll get to know each other, having the chance to hang out every two weeks at grief group…