Saturday, September 29, 2018

The Coughing is Ridiculous

As expected, the coughing and continued lung inflammation pushed surgery back. Not expected was the three week wait (it's now scheduled for October 17); I'd anticipated it happening a little sooner. But as I've so often said in the past: "Es lo qué hay." At the rate it's going, it will take that whole time to get past the inflammation. I've never had a cough hang on this long, but then I've never been through chemo before and we think my body is just taking longer to bounce back than it normally does because it's been through so much this summer.

My doctor is hitting the inflammation with everything in his arsenal. He upped my steroids: a decreasing dosage wherein I was on 30 mg for five days, then 20 mg for five days, and tomorrow I start with 10 mg for 5 days...This is the third round of steroids in the past five weeks. He prescribed a Nebulizer and I've had a week of 8 breathing treatments a day, now down to 4/day through Tuesday. Yesterday we refilled prescriptions for the heavy duty cough syrup and the cough "pearls", both of which help me sleep better at night. Even so I'm waking up with coughing fits between 2-6 a.m. every.single.morning. Half the time I'm able to get back to sleep and the rest of the time... Let's just say I'm perpetually sleep deprived. He'll reevaluate my progress when I go in for the next Herceptin treatment on Wednesday.

I feel better than I have in months, despite the cough, like I've turned a corner both physically and mentally. I've actually had some energy this week! It's a wonderful feeling and I'm praying it continues.

I'd thought about putting up some freezer meals before my surgery, but then felt so yukky before the original surgery date that I put it right out of my mind. With surgery rescheduled, and feeling more energetic, I revisited the idea. This week I've slowly worked through six recipes and have 16 packages prepped and frozen! Several simply involved chopping meat and vegetables and throwing them in freezer bags, but a couple I precooked in the crockpot and then froze. One was a recipe for Thai chicken curry which I ate for dinner that night and put up the remainder. It was good! Pinterest is a wonderful tool for projects like this. I'm going to put up a few more meals this week, so post surgery meal prep will be a lot easier for Ivan (and/or me).

I even had enough energy one day to clean the apartment (in the five months we've lived here, Ivan's done 90% of the cleaning). It took all day, with lots of breaks between chores, but the apartment is small enough that it was totally doable in a day. While I'd love a second bedroom one of these days, having a small place is definitely advantageous for our current situation.

I feel like I've had more mental clarity, too. Chemo brain turned my brain to mush... concentrating was so difficult, and I often couldn't get through a complete thought, much less a sentence. Not even kidding when I say the last blog post took me three weeks to finish. I had to keep going back and chipping away at it, bit by bit. I'm still not where I was, and by mid-afternoon I'm both mentally and physically exhausted, but having that energy in the morning/early afternoon has been an absolute delight!

One of the books I've read recently made me even more grateful that chemo brain is a temporary thing. "One Hundred Names For Love" by Diane Ackerman is about their experience when her husband had a massive stroke and was left unable to communicate for a long time, and chronicles their strategies for helping him gain back at least some of his speech and writing abilities (he was an author of dozens of books before his stroke). I found it fascinating, but also a little frightening to think how quickly one can lose the ability to do something as vital as communicating.

On the other end of the spectrum, I read "Eat Cake" by Jeanne Ray which was a fun but "fluffy" book... very light reading and oh, so entertaining. While others close their eyes and imagine themselves on a beach or sitting in a café in Vienna, the protagonist in this book pictures herself inside a cake -- like literally inside it! That thought made me smile, and the entire book was just a fun read, because everything piled on at once and she needed a lot of cake to get through it: her husband loses his job, her 16 year old daughter is...well, 16... her mom has been living with them a year and then her dad has to move in after an accident and her parents, who have been divorced for decades, despise one another... It sounds awful but it's actually quite hilarious. It was good to follow up such a serious book like Ackerman's with this lighthearted romp.

It would appear my hair is going to be the same color it was before I lost it: bits are coming in dark and other parts lighter, which is what it was like pre-chemo. It's still really short -- like I said, my hair has always been slow to grow -- but more noticeable day by day. I can't get the nursery rhyme "Fuzzy Wuzzy was a Bear" out of my head. haha!

Ivan is doing great nine days after surgery. His follow-up appointment with the surgeon is Friday and we'll find out if he needs to continue with any restrictions. I think the hardest part for him has been not being able to pick up the grandkids, or play with them in the pool. He can still do other things with them, though, so it's all good. When they were here Tuesday, they spent a good part of their time piled on the recliner with him, reading and talking. Those kids sure love their Papa! And he loves them :)

We'll get to spend some time with the other two grands in a couple of months! Jon, Nat and the girls will be flying in for my birthday week in early December. I'm so excited I want to do the happy dance! I'll be six weeks past surgery by then, but won't have started radiation, so the timing couldn't be more perfect. And I think December in Vegas is going to be fabulous with temperatures in the high 50s/low 60s. Way better than freezing cold, snow and ice like we'd be having in the Midwest.

I didn't think we could have a Christmas tree because this is such a small apartment, but the other day I happened to think of putting it between the TV and rolling library cart. It would have to be a small tree and would make the space feel a little crowded, but it's only for a few weeks... I just love having a tree so much... will have to give it some more thought. Can you believe Christmas is only 87 days away?!

Hopefully I'll feel up to doing some sewing between now and then, because there are a few things I'd like to make the grandkids. To that end we've been on the lookout for a sewing table that would fit in our bedroom; we needed something fairly narrow but long, and I was thrilled when we found one on Facebook marketplace recently. Next up is getting my sewing machine tuned up. It was starting to give me fits last year as I worked on the fabric fort I made for Simon and Betsy for Christmas; I meant to take it in for a tune-up then but got sick... and, well, here we are ten months later.

Christmas... so many memories, thoughts and emotions wrapped up in this one holiday. I know everyone has their favorite holiday, and Christmas has always been mine. I think because it was my mom's and she went all out to make it as magical as possible for my sister and me. Becoming a follower of Christ in my teens, and understanding how His birth affected the world, only added to my love for it. And now, with all that's happened this year, it brings yet another perspective and motivates me to focus on all that it means.

Wednesday, September 19, 2018

Gearing Up for Next Phase

Four weeks out from my final chemo treatment and I'm starting to gear up for the next phase. Were it not for having suffered for weeks with severe asthma + bronchitis (and a persistent cough), this would have been my "easiest" post chemo experience to date. It's been a month with two rounds of antibiotics for the bronchitis, two rounds of steroids to open my airways, cough syrup with codeine, little gel caps they call 'cough pearls'... but the coughing seems impervious to all our attempts to put it to rout.

I thought the drier Nevada climate would alleviate the asthma issues I'd been having in Indiana -- and it probably will be better when my body has time to bounce back from all the stress chemo has put on it -- but it's made me aware that this is something I'll have to be cognizant of even out here in the desert. The smoke from the California wild fires that drifted over the valley two months ago and just settled in for a while was more than my lungs could handle at that point. Live and learn.

I'm scheduled for surgery one week from today... BUT only if we can get this cough under control. I have a few more days on the current steroid regime, but at this rate I'm pretty sure we'll just have to turn around and start another one. Not feeling very confident that we'll be able to stay on schedule due to the lingering inflammation in my lungs (had a CT scan last Thursday which showed no more infection [Hallelujah!] but a LOT of inflammation). I would so like to stay on schedule! Will you pray that this will clear up and I can go ahead with surgery on the 26th?  

I'm starting to educate myself on what to expect, both right after surgery and in the months to come. In a private Facebook group, the ladies talk about the challenges of finding clothes to fit due to the realities of having uneven post-surgery bodies. A recurring theme is using camisoles to both smooth things out, and wear under other shirts to help prevent chaffing from fabrics that aren't very soft or have lots of seams. I have never been a big wearer of camisoles so asked what brands they used (answers were all over the board) but several suggested I initially either get a pack of men's soft undershirts or go to a thrift store, because the ones I wear at the beginning will get stained anyway, so why spend a lot of money on things I know will get ruined? Preferring a variety of colors, I grabbed four at a local Goodwill and they're washed and ready to go. It felt weird buying size small, but based on the weight loss I've had this summer and the amount of body I'll be losing to the surgery, I know small is what I'll need. Snug (not tight) is good, the ladies said, because it holds the uneven and, to begin with, jiggly parts together (there will be some swelling for an extended period of time). I was surprised to learn that even if I wanted to (which I definitely don't!), it would be 4-6 months before I'd be able to wear a bra. Basic surgical healing takes place within 6 weeks, but it's months before the body becomes accustomed to its new normal. Who knew?!

The whole fashion aspect is something that's caught me by surprise. Everyone who knows me, knows I'm about as far from a fashionista as you can get; for me, it's all about the comfort! At the same time I do want to look presentable, so a while back I started following the blog "I Don't Need Two: Mastectomy Fashion Without Reconstruction", the first fashion blog I'd seen for those who choose not to have reconstruction. Since then I've joined a couple of private Facebook groups, including Fantastic Flat Fashions. Our society/culture is not really ready to accommodate those of us who choose not to have reconstructive surgery, so it's encouraging to see signs that is starting to turn around. I was especially encouraged to read about a group at the Kent State University Fashion School who are focusing on "flat fashion" in their design class this semester. Because no female dress forms are flat, and male forms are (obviously) not shaped like a woman, the group reached out to one of the women in the FFF forum to serve as a "living" dress form. And they've asked her to get input from the Facebook group as to what we'd like to see and need in fashion design. It's been really helpful for me to learn from all these other women about what works and -- equally important -- what doesn't, when it comes to finding things that fit and look flattering. It prompted me to pick up a pretty red blouse when I was shopping for camisoles, because (1) it didn't have any darts and (2) it was high necked with a pretty collar drawing the eye up. I'm thinking it will make a very nice top for Christmas time.

The other fashion dilemma I've learned about is what the ladies refer to as the "buddha belly". I'm already pear shaped, but that's going to be accentuated after surgery, and I'm not alone with this predicament! It's a common malady for those who choose to stay flat, and suddenly the bottom half of your body seems even larger than it was before. That's a tougher fashion nut to crack, but I am learning some tricks from this amazing group of women who gladly share what they know and learn with one another. 

At my pre-op appointment at the surgeon's office last Friday, Ivan learned how to empty the three drains I'll have, and how to fix a clogged drain should that occur. The whole thing grosses me out and I'm glad I have a husband who isn't squeamish and is willing to take care of things like this for me. I'll gladly keep track on the chart of the amounts he empties from each of the drains, but this southern girl will keep her eyes firmly averted while he's handling the yucky part. Everyone is different, but most women are able to have the drains removed a week or two after surgery (the threshold is less than 30 cc per drain per day before they can be removed). Rarely does the surgeon leave the drains in a third week, because the chance of infection goes up exponentially. In very rare cases, drains are removed after 3 weeks and women have to return weekly for needle draws of the fluid build-up.  I'm praying I can have the drains removed after just one week! This Monday I was fitted and then picked out the specialized camisole I'll wear at the very beginning, with it's nifty built-in pockets for the drains.

I've also started hitting the gym to try and build up some stamina after a summer of being a literal couch potato. I've never been so exhausted in my life as I have this spring and summer. Even when I was so fatigued before and after the celiac diagnosis, I was able to function for a few hours a day. Not so this summer. I've spent most of it planted on my couch or in my bed, with almost zero energy. I can't say I'm setting any records on fire (except maybe how pathetically long it's taking to do even minimal amounts on the treadmill) but I am seeing progress, poco a poco. And some progress is better than none, right? I added in reps on the arm weight machine, too, so that physical therapy after surgery won't do me in. I'll have to work on getting back range of motion, which shouldn't be a big deal with the left arm, but definitely will on the right where they'll be removing lymph nodes. I want to be proactive, too, in learning what I need to do physically to reduce the chances of lymphedema down the road (swelling due to removal of the lymph nodes). Getting these flabby arms in shape is step #1.

On a happier note: my hair is starting to grow back! I noticed last week that my head felt soft instead of bristly, and this week we can see fuzz! It's growing back kind of weird, there's more around my ears than on top at this point but it is growing all over. The biggest difference is that my head seems hot a lot now, so when I'm home I rarely have anything on it. Before I had to have a beanie or scarf on all the time because my head was constantly cold. I read on the site that hair will grow about an inch a month. I think that's optimistic for me, as my hair has always grown very slowly, but I don't think it's unrealistic to think I might have about 2" by the end of the year. I'm really curious as to whether it might come back in a little curly, like many do. I've never had curly hair except for those unfortunate perms, so I think curly or wavy hair would be fun!  

Meanwhile Ivan's been busy with his own medical issues. He finally had the endoscopy and colonoscopy a few weeks ago. The initial report was good, and the two bits they sent out for biopsy came back clear. Yeah! He'll also finally be having minor surgery tomorrow.

A new wrinkle is that he's been having dizzy spells (for lack of a better term) since early August. He mentioned them early on and at first we wondered if it was a simple matter of needing stronger glasses, so he had an eye exam the 2nd week of August and determined that wasn't the issue (very little change in his prescription from two years ago). Then he maintained what I call "radio silence" on the subject...until it got really bad after the endoscopy/colonoscopy procedure; we think maybe the anesthesia exacerbated the situation, but we honestly don't know. Long story short: he saw his PCP who ordered a CT scan of his brain, but when things got worse that night and he couldn't sleep, we ended up in the ER. As he explained to the doctor, it's not so much feeling dizzy as feeling "off" and unbalanced, like his depth perception is messed up, and it happens even when he's in bed with his eyes closed. It's not constant, but rather triggered by movement: standing up, walking, rolling over in bed...and it's accompanied by a dull ache between his eyes. They did a CT scan at the hospital which didn't show anything so the next thing is to see a neurologist.

I told Ivan it feels like we're playing Medical Whack A Mole; we deal with one thing and another pops up. This year has been so weird as we've both been hit with what seems like constant, random health issues. I guess it's better to get it all over with in one year? Or at least the bulk of it. My treatment will last through most of the coming year too, but will be so much less than compared to this year. Thank goodness!

It's not just us either. So many friends and family are going through health crises of their own. My prayer list includes many who are dealing with everything from cancer to kidney stones to shingles... And maybe I'm just more tuned in now, but I see so many memes on Facebook that humorously point out how our bodies begin to fail after a certain age. My favorite so far:

Ain't that the truth?!