I found my kryptonite – Breast MRI. I tried again, with lorazepam this time. The test didn’t even get started before I quit. I just couldn’t get enough oxygen laying on my stomach. I was worried about hurting my recent port insertion site. And I fought the “relaxing” effects of lorazepam with all my might. I was the opposite of relaxed. See, lorazepam was one of the anti-anxiety meds Mike took after he lost his job. He took the pills like candy, to the point of being zombie-ish. Then he started combining the pills with alcohol, which rendered him virtually comatose. I just couldn’t shake the image of him on the couch, not opening his eyes, mumbling incoherently. I wouldn’t let myself relax, not with THIS in my body. I didn’t want to be like THAT. So, I basically walked in the MRI room and walked out – didn’t even start the imaging. Not happening.
Category Archives: We’re Going to be OK
Thanks (for the last time)
Dear Reader, If you’re squeamish or don’t like to read about menstrual cycles, periods, or Aunt Flo, you may want to skip this post.
Dear Period,
I just want to thank you for being there for me one more time. Oh, that’s right, this might be the last time, you know, so I appreciate how you’ve been present with (“super plus”-worthy) gusto this week. It’s hard to believe you and I have been together for more than 27 years, and that – NOW – we have to say goodbye.
Month after month, you’re there. A reminder that my body is working properly. That it’s been almost 30 days since the last time I saw you. It’s a cue to mentally review what bills I paid this month, to know that payday is coming soon, and to find my birth control pills for next month. (Oh, and during the college years, you were the “medical reason” insurance covered that prescription AND why my dad was okay with me “being on the pill,” so thanks for that, too.)
I’m torn. The security you bring when you arrive is fantastic. “You’re here! Great, I’m not pregnant!”
But you can also be a total drag. You’ve come at really bad times (hello, honeymoon). And really good times – “You’re not here? Great, I AM pregnant!” You’re how I knew I was carrying a baby in my uterus before any test could prove it – twice.
You see, I can almost set my watch and calendar by you. That’s how ridiculously consistent you’ve been, old friend. Like clockwork. No surprises.
And now we’ll be saying goodbye. Oh, it’s not that I want to. This ending comes much earlier than I anticipated. I really thought we’d have another 10 or 15 years together, at least. I even bought the jumbo box of tampons last month, never thinking we’d NOT be together. That’s commitment, that Costco-sized box in my bathroom.
But the chemo will take you away from me. Since I’m over 40, I’ve been told you’ll most likely be gone forever. How will I know it’s been a month? How will I know I’m not pregnant? How will I remember to pay my cell phone bill or mortgage (both due mid-flow)?
And of course, losing you comes with other consequences, other “stuff” I’m just not ready for – hot flashes, emotional rollercoasters, vaginal dryness. (I can’t even… Typing that last one sounds so… granny-ish.)
It’s almost like you knew this might be our last time together. You came in so quietly and sweetly, like “knock, knock, anyone home?” but woo-diggity, you made up for it after a few days. Crampiness, heaviness, fatigue – see, that’s the stuff that I won’t miss. You really could have done without going there. Seriously.
You’ll be with me another day or so, then you’ll slip away. Quietly, I hope. We may never be with one another again, you and I. But I’ll remember you.
Or not…since there won’t be a physical reminder, other than that big box of tampons, next month…
(Damn, what am I going to do with all those leftover tampons?)
Love,
Jax XO
MUGA done, port installed – two steps closer
I’m on a first-name basis with the woman at the hospital registration desk. She instantly greeted me by name and pulled up my file when I walked in the door yesterday.
It was a busy Tuesday – one heart test and the installation of the mediport.
The MUGA scan was fairly easy. A quick blood draw, a 20 minute wait while a radioactive tracer was mixed with my blood, then I was ushered into the testing room. The blood was injected back into me (now with radioactivity!) and the radiologist placed three heart monitors on my chest.
Then I slid into the machine. It was kind of like an MRI, but MUCH more open and there wasn’t any noise. I could see the monitor showing what was happening in my chest. (The camera uses gamma rays to watch the radioactive tracer move through the heart and get pumped through the body.)
You know when you lie on the grass on a cool summer night and just look up at the stars? And how, if you’re somewhere without much “light noise,” you can see thousands of stars above you? That’s what it looked like on the screen. My body, full of stars.
The whole test lasted about 25 minutes. It was so easy and comfortable, I almost fell asleep, looking at my “stars.” The MUGA is important because a few of the chemo drugs could affect the heart muscle so the docs need to make sure my heart is strong going into chemo AND to get a baseline so my heart can be monitored at different points during my chemo regimen.
I had a few hours before the port installation, so I went home and worked on my syllabi (two done, one to go!). Then back to the hospital.
I had to be there about two hours before my procedure was scheduled. It was a long wait, but I was prepared with one of the books that’s been on my nightstand for way too long. (Gone Girl, reading the book before I see the movie. Really liking the book. Yes, my “for fun” reading is WAY behind the rest of the free world.)
More blood drawn, urine sample to prove I’m not pregnant, an IV of saline and antibiotics started.
Two hours later, I was wheeled to the operating room. This room was a little different from other ORs I’ve been in. This one was designed to use X-rays as part of the surgery to “see” where the port catheter would be placed into a vein in my chest.
More chest monitors, blood pressure cuff and oxygen thing on my finger. Lots of cleaning of the skin and prep of the area (left side, near my collarbone). Then everything turned blue as a drape was placed over my face and right side of my body.
My skin was numbed with a local anesthesia. The nurse pushed a tiny bit of general anesthesia through my IV, and she asked if I wanted more. I declined. I talked to the surgeon and nurses through the whole procedure. I couldn’t feel the incisions (two were made) but could tell when the catheter was winding its way from my collarbone to the middle of my chest. I could feel the doc use a tool to make a “pocket” between my skin and muscle to hold the actual port. I could feel the in and out of the needle as they stitched everything back up.
At this point, the surgeon said he was taking his time to make sure the stitches would heal with minimal scaring. “Doctor,” I said, “I’m having my right boob cut off in a few months. I really don’t think a couple of little scars on the left side will matter much.” (He laughed uncomfortably, but still took his time.)
Because I had so little general anesthesia, I was released less than an hour later.
Two incisions for one port. Yay no more needle sticks! Also, why can’t anyone come up with a nicer hospital gown? Not flattering.
There’s some soreness where the port is placed, but it’s completely manageable with Tylenol. One of the two bandages came off this morning, and everything looks fine. (I covered it with a band-aid – Lalaloopsy, of course – to keep the area as clean as possible.) I just want to be super careful over the next few days because ports placed on the left side can “move” from their original location. The procedure was easy but I’d like to not go through it again until it’s time to remove the port from my body (which won’t be until “everything” is over).
It’s just weird to think I have a triangle-shaped plastic “thing” in my chest now. But it’s also nice to know that needle sticks and IVs are done since everything (except the radioactive MUGA tracer) can be accessed/pushed through the port.
Tomorrow’s supposed to be the MRI. At this point, I’m not sure I want to lay on my stomach for that long with the newly installed port. I may reschedule. This doesn’t not break my heart.
Everything is really, really real now that the gateway for the chemo drugs is in place. I’ll feel better when I get the first round finished on Friday. (Breathe…)
Shopping for my head
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 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
(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?!?
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