Brief update, hesitant about plastics appointment, and GREAT NEWS!

It’s been 11 days since my final chemo, and I’m  starting to feel better. I can function on a normal night’s sleep (without sleep aids like melatonin or Advil PM) and only one small, hour-long (or so) nap in the afternoon. This is in contrast to last week’s 20+ hours of sleep a day. I can walk further distances without my oxygen dropping, but there’s still a way to go to build back my stamina. Taste is coming back; bone pain is gone; the neuropathy on my right side is the same (ugh).

I’m slowly crossing off the last few tasks prior to surgery – I have a few more appointments and tests before I can schedule the surgery date.

I meet with the plastic surgeon next week. Even with a lumpectomy, there could be reconstruction and shaping necessary, but I have a mind-block about seeing a PLASTIC SURGEON. I’ve put off scheduling the consultation for weeks. While any reconstruction would be the result of a medical issue, the thought of walking into a plastic surgeon’s office just seems…icky and vain. I have images of sitting in the waiting room among supermodels seeking ginormous boobs and lip injections or the Human Barbie Doll looking for her fifth nose job and butt lift. It’s my personal mental block, and I hope the visit next week puts that to rest.

But the BEST NEWS involves the mammogram and ultrasound I had yesterday. The mammogram was fairly routine and quick. But it took more than an hour in the ultrasound room because the tech couldn’t find the tumors. She eventually called the doctor to come in. The doc COULDN’T find them either. Finally, after much searching, pulling up the images from December and April to compare “landforms” in my breast tissue, and MORE searching, the doc finally found the clips that were placed during the biopsy. The tumors are so small now that the doc couldn’t measure them. They’ve changed from football-shaped masses with tentacle-like things in all directions (December) to smaller eyeball-shaped masses with “cat eye” tails on each end (April) to small, narrow, flat masses (now). The doc explained that given the current shape, what’s left is most likely scar tissue from the biopsy and/or the breast filling in the spaces left from the tumors. But basically, the tumors (the cancer) are GONE, at least the masses aren’t “cancer-like” on the ultrasound. The masses don’t look like cancer anymore. Six months of chemo worked! Of course, we won’t know anything for sure until surgery, but the images were so positive that the tech, doc and I exchanged high fives in the ultrasound room. Can’t wait to get the thoughts of the oncologist and surgeon on this latest imagery.

Given the decrease of the tumors, I’m comfortable now with the choice to have a lumpectomy. Just have to get through the plastic surgery appointment…

Last chemo?

Today is most likely my last chemo, two infusions shy of completing the original treatment plan. I’ll still have weekly blood draws to monitor my counts, but no more visits to the Infusion Room.

Six months of chemo.

Four rounds of AC.

Three rounds of carbo.

Ten rounds of taxol.

Plus three ER visits, neutropenic fever, pneumonia, and extremely low blood counts.

Today’s doses of carbo and taxol will be reduced by 20 percent. My oxygen levels are still low and drop with even mild exertion, most likely because of anemia. Neuropathy, limited to my right hand and foot, is getting worse – going from just numb fingertips a few weeks ago to now a tingly hand and foot. The neuropathy turns to restless leg syndrome on Friday nights making it almost impossible to sleep – this is probably caused by the Benadryl given as one of the pre-meds to help fight allergic reaction to the chemo meds.

It isn’t uncommon to stop chemo before the end of treatment, especially with the amount I’ve endured. I’ve known for a while that the infusions would most likely stop before the originally prescribed 12. Mentally, I just wanted to get to 10 doses of the taxol. In my mind, that’s the magic number.

Still, I’ve been thinking “what if” – if the cancer comes back, will I regret not getting the full, original treatment plan? Would those final two doses make a difference?

The oncologist put some of those fears to rest this morning. At this point, there’s “probably” little the chemo is doing for the tumors, and the side effects (especially the neuropathy, which can become permanent if the chemo isn’t stopped in time) outnumber the benefits. Given my “young” age, the plan was to get as much of the chemo drugs as possible without creating any long-term problems.

This also means I may be able to move my scheduled mammogram and ultrasound, which could move the surgery date earlier in July, giving me more time to recover before school starts.

And yet, I’m a little scared. For six months, I’ve “known” what to expect week-to-week, day-to-day. Chemo is crazy routine in what to expect and when to expect it. Now that it’s coming to an end, the next phases have more gray areas and more decisions to make.

And I still haven’t committed to a surgical option.

The power of the bath: making a surgery decision

I rediscovered baths this week.

As a teenager, I would spend HOURS in the tub – reading, relaxing, thinking. When I went to college, there was a tub on each floor, but it was in a glorified cleaning closet that was dark and dingy and gross. I don’t know anyone who used a tub in Justin Hall. I continued to take long baths when I came home from college on breaks.

Once I was “on my own,” baths disappeared from my life. Too much to do. Too tired. Other priorities for my time. It’s unfortunate, really, since I’ve lived in places with really nice tubs.

Our first apartment in St. Louis, when Mike was in law school, had a deep claw foot tub original to the building built in the early 1900s. That tub was so flipping deep that I almost needed steps to get in. Water up to your neck. But it was short. I think I took one bath there in four years.

Our first house had a brand new whirlpool tub. I never took a bath there. Our second house had a whirlpool tub built for two. Seriously, while resting my back on one side, I couldn’t reach the other with my legs, which meant sliding down too far. I used the bath pillow as a floatation device the two times I took a bath in that house. It’s not relaxing when you’re concentrating on not drowning.

My current house has a whirlpool tub that is just right. Not too deep, not too long. Still, in three years, I never used it until Tuesday. That’s not to say it hasn’t been USED – the kids love to take baths in there since it’s deeper than the tub in their bathroom. And it has jets! And makes bubbles!

Tuesday I had my annual physical with my primary doc. During the “well woman” portion of the visit, the doctor discovered an ingrown hair (yep, my hair is S-L-O-W-L-Y growing back!) just to the left of center *down there. * It was showing signs of infection and needed to be drained.

SIDE NOTE: Everyone has an issue with a word or two, right? One of my issues is with the word gro*n, which is technically where this problem lies. See, I can’t even type the word, let alone say it…

I’ve seen a lot of docs this year, and I’ve had a lot of tests. Some of the tests and doctor pokes have been painful, some not. But NOTHING I’ve been through hurt as much as when my primary doc injected the heart of the infection with a numbing agent. Hot diggity! That shot hurt. It was all I could do not to kick her in the head or scream.

Once numb, she drained the area and gave instruction to “rest in a warm tub, with a glass of wine and a good book.”

Doctor’s orders, right?

With kids in bed and a new book in hand (no wine since my liver is still not super happy with chemo), I turned on the faucet of the tub and climbed in. I sat there for a few minutes, starting to read the book, then got out. The tub ledge was dusty, and I couldn’t relax so I cleaned it. I read a chapter or two, then went to bed. I slept pretty well, so I decided to take a bath the next night also.

This time, the tub was clean so I could relax. The book was an easy read and perfect for the bath. I read several chapters then set the book aside. I sunk lower in the tub and let the water wash over me. I allowed my hands and arms float on the surface as I closed my eyes and breathed deeply.

I don’t know how long I stayed there, concentrating on my breathing, but I was able to identify and “solve” a couple of the things that have been bothering me lately – primarily weighing my surgery options.

I know a lot of women don’t have an option, but having the choice between lumpectomy and mastectomy is almost worse. What if I make the wrong decision? If this comes back, will I always question my decision? Why can’t someone just TELL me what to do?

I always maintained that I wanted my entire breast removed, but after meeting with the radiation oncologist (who is also the head of the cancer center), I started to rethink that. All the docs have stressed that it’s my decision, but I get the feeling that they’re recommending the “breast conservation surgery” (that’s what they call lumpectomy – defining it in those three words kinda shows which way they lean, doesn’t it?).

One of the biggest benefits to the lumpectomy would be recovery time. It’s far less invasive with almost the same success rate of removing the entire breast. At this point, I just want my energy back. I want to NOT be exhausted ALL THE TIME. I want to enjoy stuff again. I want to be able to DO stuff again. And a lumpectomy will allow me to get back to “me” faster.

Of course, there are cons also. Lumpectomy means I will undergo 4-6 weeks of daily radiation. I feel a little better about radiation after talking to the radiation oncologist. Given the size of my breasts, I (probably) will not blister and burn. Fatigue is a side effect, but the doc said women who have had chemo first don’t think the tiredness is as bad as during chemo. Radiation is only 15 minutes a day, and they will make sure I have early appointments.

I still have to meet with the plastic surgeon to understand reconstruction with lumpectomy. As much as I know my breasts have served their purpose (successfully fed two babies!) and I don’t like to think of myself as overly vain or concerned about such trivial things, I really don’t want to be misshapen or have a deep dimple on my right side.

I’ll probably HAVE to take a few more baths before I commit to a surgery plan. That warm water gives me much needed clarity and decision-making power.

Fatigue, Brows, Oxygen, Kiddos – Updates

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.) 

Back on the chemo train

I’m feeling better than I have in weeks! After being released from the hospital on Monday, I took Tuesday to rest, and then I was back at work on Wednesday and Thursday.

Upon returning to class this week, a student gave me this "pocket angel." She carried it around with her for the last four years as she battled leukemia. "I believe these things should be passed on to those who need them," she said. "You should carry this around with you until you're better, then pass it on to someone who needs it more."

Upon returning to class this week, a student gave me this “pocket angel.” She carried this coin around with her for the last four years as she battled leukemia. “I believe these things should be passed on to those who need them,” she said. “You should carry this around with you until you’re better, then pass it on to someone who needs it more.”

The official diagnosis: pneumonia (viral) and hypoxemia (abnormally low blood oxygen level). With that diagnosis, I had my first “insurance sucks” moment when my insurance company denied the doc’s request for at-home oxygen. Low oxygen levels apparently does not mean I qualify for… oxygen? Makes total sense, right?!

I’ve managed without the oxygen just fine. I use an at-home pulseox (little device I put my finger in to determine my blood oxygen level) when I start to feel funny. From there, I can figure out what to do if my levels are too low (inhaler, deep breathing, sit down/relax, etc.) or too high. Since my levels were SO low, the docs think my oxygen levels have been low for a long time (probably since my GI problems last month) and my body has adapted to less-than-normal levels. Not good. So I feel funny when my oxygen is in the low 80s, and I feel just as funny when my oxygen is in the high 90s.

Treatment started again today. It’s the second phase of chemo. This one is supposed to be 12 weeks of “easy.” Since I’m still recovering from the fever and pneumonia, the oncologist only started one of two of the drugs for this phase (taxol), with the second one being added in a future treatment (carboplatin, which is only administered every three weeks). Some people can’t tolerate carboplatin, so it’s not a HUGE deal if I don’t get it. As the oncologist said, “The carbo is just the icing on the cake.”

Goal for this week: STAY OUT OF THE HOSPITAL!