Uphill From Here

The lowest lows must exist. I get that. And for the first time in a while, my highs are amplified by those lows. I got great news today. The blood clot I developed from the portacath is nearly resolved!

A few days after my portacath placement in early June, my arm turned purple and swelled. They discovered a clot that extended into my armpit from my chest. I went on Xarelto, a blood thinner, and have been on it since ever since. The medication doesn’t have side effects other than easy bruising and one should avoid cuts at all cost. As someone who is poked with needles almost weekly and anticipated several major surgeries, the blood clot and associated blood thinners were a huge concern.

It is the painful and ugly relief map of veins in my sundresses. It is the thing that pulled me down from the silks. It is the ongoing, nagging, threatening thing that made chemo and surgery far more scary than need be. I hate that blood clot. I really do.

Before my last surgery, I had to do what is called a Lovenox Bridge which is another type of short-term blood thinner that must be injected (by me) into the chubbiest part of my belly twice daily. Like so many of the trials of the last year, this task was a low low. It hurt. I looked like I had been run over.

My next (and hopefully final) reconstruction surgery is scheduled for February 9 so if the clot had still not resolved, I would have to do another round of tummy shots for 10 days. I don’t think I have to now! This also means that the risks associated with my upcoming surgery are far less. This is a high high.

Also, as fast as it started, my hair stopped falling out about 5 days ago. I don’t want to get too excited because, well…who knows? But, a do feel that a huge weight has been lifted from me. I’m that much closer to being a normal person again, whatever that means.

Could there be an end in sight? As long as there is an end, I don’t mind it being uphill.

 

Humpty Dumpty

5c8206c8f7793ae56c1a84dfbc0deda0I’m at the chemo room preparing for Herceptin #? I don’t keep track of Herceptin treatments. I just know they will end in June. Yet another countdown is on.

I don’t leave the house much anymore. I just don’t feel like it. I’m down. I don’t sleep well. My doctors think I have anxiety or post-traumatic stress disorder. It is possible. I’m definitely not myself. But, who could be after all this? Who crawls out from under a life-crushing avalanche and walks away whistling like everything is okay? Everything is very much not okay.

My time and nervous energy are not wasted though. I’ve devoted every free moment of time to a condo renovation. More on that later but it is my only solace. I can crowbar, smash, or break things. Or I can gently resurface a wall with joint compound. I can patch holes and clean up and correct imperfections. I can sand things until they are smooth while the dust rises up all around me. It settles on me in a fine layer so that I look like a ghost. Sometimes I just sit in the dust and think. It is all very therapeutic and a bit metaphorical. Right now I’m putting “Humpty” back together again, in more ways than one.

Fortune Cookie Wisdom: Accept, Feel Better

A trip to my jolly dermatologist proved useful after all. My hair is falling out because of something gloriously juicy to say aloud: Telogen Effluvium.

This is a form of hair loss that is common after a traumatic event such as cancer treatment, surgery, even pregnancy, high fever, or a serious case of the flu. It is not the same as the hair loss associated with chemotherapy, though chemo may be contributing to the “trauma” my body has experienced. Basically, it is just serious hair shedding caused by a disruption in the hair’s growth phase.

Normally, hair grows from 2-7 years, then it chills for a few months, and then falls out to be replaced by a new hair. In my scenario, the 2-7 year growth phase was disrupted and the hair was pushed into its chill phase and now the fall out phase a little early and all at the same time.

The good news is that the shedding should end soon, based on how much easily fell out when the doc tested it. Also, it is pretty much consistent over my whole head so no bald patches will show. In fact, the doctor predicted that no one would likely notice (except me) since you have to loose 50% of your total hair before it becomes noticeable. He didn’t think that would happen to me. He believes the cold caps did their job perfectly: protecting the hair follicle from chemo circulation and preserving my hair.

More good news is that if the hair is falling out, it is already replaced by a new hair, though under the skin still. It should emerge shortly.

Hair grows about 1/2 inch (or more if you’re really healthy) each month so while it may take a while for my hair to be thick and pretty again, it should regain some volume within the next few months. It may even grow back wavy! Did I hear mermaid hair?!

The doc suggested I eat 2 servings of protein every day, 3 if possible, and make sure I’m eating food with lots of iron. When you’re healing from surgery or chemo, the body diverts vital nutrients like protein and iron to more important areas of the body that need repair than hair (things like heart, liver, brain, and skin). Hair is considered quite a luxury in the pecking order of nutrient allotment turns out.

Doc also said that Rogaine is a good option for me. Rogaine helps to grow new hair once it has fallen out. Normally, Rogaine is something you have to use ongoing because it originated as a solution to male pattern baldness. As soon as you stop using it, the hair it helped to grow falls out. Since I don’t have a type of hair loss that is ongoing, this isn’t a risk for me. Mine is a one-time incident. So, I can use Rogaine to speed up my hair growth but I’m not signing myself up for a lifetime of costly scalp treatments. My new hair won’t fall out after I stop using it because it is meant to stay in place on my head anyway.

While there isn’t anything I can do to make the hair stop falling out, making sure I have LOTS of good nutrients should help my new hair grow back quicker and in better shape.

So, first, I take big, deep breaths. Then, I eat a handful of almonds. Then, I keep doing life like a boss. It is very hard for me to feel helpless. But, I suppose learning to accept that some things cannot be controlled is a useful lesson.

KMAGYOYO

I’m frustrated. My hair is falling out. My eyelashes are thinning again. I don’t know why. I’m months beyond chemo and surgery. I should be past this! It makes me realize how not past this I am. That dark cloud hovers in my peripheral.

I tell my cancer team about my hair loss. They recommend I see a dermatologist. This is puzzling. By puzzling, I mean infuriating. They sure were good at making my hair fall out. But, making it stop or growing it back isn’t interesting to them. It is the ultimate in passing the buck. It is KMAGYOYO. It made me cry.

I get it. They did their job. I’m not going to die. But now I have to live.

For the first time in my life, the sensations of life and living are distinct. I always used to live to the fullest. I really did. Life and living were one in the same, an effortless marriage I took for granted.

Now I’ve had the experience many only have towards the end of their life…the slow decent into just hanging on, not knowing if you’ll get to come back. Chemo really takes you there. It is unspeakably difficult. The recovery is snail paced. I’m impatient.

The doctors solved my one big problem but created a million other, smaller problems that I’m now trying to sort through. And I realize that I’ll be sorting through them with just my worries and my calendar. Time, it seems, is the only real cure.

Usual Unusualness

Today I’m in the chemo room for Herceptin treatment. It is an easy appointment compared to the TCHP treatments I finished in September. It reminds me how far I’ve come but also how far I have to go.

I treat these days as if nothing is happening. Just a quick little appointment, like running an errand or taking a long lunch. I don’t prepare for it and often forget it is on the calendar. Today, I happened to have a staff meeting at the same time. I joined the video conference from my chemo chair while the nurse was taking my blood through an IV in my arm. It should seem weird but I’m trying not to let it.

I took my phone off mute for a moment to give my update and something magical happened. Someone “rang the bell!” It was her final chemo treatment and my whole team heard it.

I burst into tears. It is my Pavlovian response to hearing bells now. I cried harder when my colleagues started cheering and ringing the bells they have at their desks to celebrate my final chemo treatment. I wish the other woman could have heard them. I’m sure she would have loved to know strangers on a software company video conference across the whole country were rooting for her.

As soon as I think I’m getting used to things, I realize just how unusual this is. And then I’m reminded how lucky I am to have to have such an unusual life. There is no normal anymore. But the new whatever it is is a beautiful thing.

I’m a hot goblin

I haven’t read anything more honest and inclusive of my own cancer experience than this article.

I’ve read it 5 times and cried twice. Thank you, Emily Alford.

Airbags to Water Balloons

Monday I went to a surgical follow up. This appointment was full of surprises.

I had anxiously tracked the drains down to 20cc a day for 48 hours and I was prepared for them to remove the irritating things. They did! I couldn’t wait to give my man a proper hug and put my arm around him in bed without getting tangled in my own octopusal appendages.

In addition, I got news we would make the switch from air to saline in the tissue expanders. My thoughtful surgeon warned me not to watch. Apparently, seeing my own deflated breast could be alarming. I agreed. My mom was there for as much commentary as I requested. She diplomatically described it as “fascinating.” She’s a nurse and is capable of enduring nearly any level of gore so her description was all I needed. I stared at the ceiling, did yogic breathing, and chatted about my skin’s aversion to adhesive.

The process didn’t take long and didn’t hurt. My breasts are very nearly numb, especially internally. Dr. P did give me a tiny amount of lidocaine, a numbing injection, on the surface of my breast skin. A needle was inserted into a magnetic port (very much like the chemo port that was in my upper chest) and the air was sucked out. Then, saline replaced the air and I was back to stiff peaks.

This time he increased the volume to 250cc on each side. He said we would increase once more to 300cc each. The size is already plenty for my small frame (5’5″ and 130lbs give or take a pasta dinner) but he recommended over-expanding by a bit so that the final implant easily fits and he can adjust the scars in my breast fold for symmetry and invisibility.

Pressure on my sternum and odd rib muscle soreness was the only side-effect and gentle pain meds took the edge off. In hindsight, I may consider taking one of my left-over Norco pills since I’m a wimp. I did some seated yoga and gentle stretching and within a few days everything feels fine.

These things are solid, folks. They point straight out like Marilyn in Gentlemen Prefer Blondes. Sleeping on my stomach is right out. Hugging is embarrassing and my projection under clothes will take some getting used to for a tiny-chested, sundresser like me. But I’ve always admired women with curves and I have to admit, I may find a silver lining in this process after all.

Also, I’m thrilled that my skin is already beginning to tingle indicating returning nerve function and capillary blood flow. My nipples respond, if you know what I mean. This is great news! I want to hug my breast surgeon!

Since I’m on the mend, I’d like to share my experience on things that helped and things that didn’t.

  • I’m a supplement devotee so when my plastic surgery nurse recommended a helpful vitamin and mineral regimen for healing, I was easily on board. I wasn’t surprised to discover I was already taking most of the recommended nutrients. But, they had a specific formula from Vitamedica so I decided to save my regular supplements and just take these instead for the duration of my surgical prep and healing. Many of the nutrients in the Vitamedica blend such as Biotin and Calcium were important for my hair growth and recovery from chemo so I wasn’t slacking on my usual supplement program.
  • I also got Vitamedica Bromelain to help with swelling. Bromelain is a component of pineapple so I also ate a lot of fresh pineapple right after surgery. I had very little swelling so I think this stuff worked like a charm.
  • Arnica 30X is something I take regularly, especially for the infuriating blood clot I acquired thanks to the placement of the chemo power port. It helps with blood flow and bruising. This was a natural inclusion in my healing and something I recommend for athletes, healing folks, or those of us who are simply clumsy.
  • I bought a very comfy, though expensive ($60) mastectomy bra. I’ve worn it 3 times and now don’t need it. This was a waste of $$. It was useful at first to hold the dressing I had on the incisions and drain tubes but I can’t see another use for it now. I suggest waiting until expanders are completely filled before buying any new bras. In fact, I’ll probably hold until the final implants are in place before spending any more on lingerie. A simple stretchy camisole that I already had worked beautifully with the dressings and now I just don’t wear anything. Remember, these things are bongo drums. They don’t so much as jiggle and support is already built in with the Alloderm scaffolding they used during surgery. I look forward to getting a proper fitting at Petticoat Fair as a celebratory and therapeutic splurge once my body transformation is complete.
  • I did not lay around like I did during chemo. I was walking, gently stretching, and out and about almost immediately. I’m very careful not to lift anything over 10lbs (including Shih Tzu or groceries) or reach for anything beyond my comfort level but otherwise, my life is really getting back to normal. I was off narcotic pain meds within about 7 days and relied on Tramadol and Tylenol, sometimes taking only 2 Tylenol a day. I haven’t driven much because my mom has been such a help but I feel that when she leaves next week I’ll be ready. I was careful not to over-exert myself but I feel my activity level expedited my recovery and improved my mood significantly.
  • I showered once per day using Dial antibacterial shower gel. I didn’t scrub but just let the suds rinse over my incisions. I have had no sign of infection whatsoever.
  • Everyone who touched my drain tubes, breasts, or really any part of me washed their hands with antibacterial hand soap.  We also cleaned phones, laptops, remote controls, and other high-traffic things with rubbing alcohol nearly every day. We used bleach and steam to clean my whole house before surgery and regularly afterward. We were very careful to avoid infection. Mom’s a nurse, remember, so she was militant about hygiene.
  • My legs and core muscles made up for my upper body inabilities that last few weeks. To get out of bed, I used my yoga and silks stomach muscle memory of balance and force to roll to a seated position without using my arms. I did not let people assist me by pulling me. That hurt. Instead, my boyfriend’s arm was used as an unmoving poll I could use to pull myself, sort of like a jungle gym or climbing a ladder. Sometimes I needed a gentle push on the back or butt to get up. I’m grateful I had plenty of core and leg strength before surgery because it was painful to get up and down or even adjust myself using my arms.
  • Anesthesia can interfere with pooping, a topic I don’t like to speak about publicly. But, it is a major part of recovery I’m afraid. To get things moving again from a digestive standpoint, I snacked on dried prunes and apricots, drank plenty of water, and walked daily. We forgot to get the Colace the doctor recommended until a few days after surgery but I would have taken that as well. I also took daily probiotics and drank my usual morning coffee. It took about 5 days but finally everything began getting back to normal and I felt much better. I don’t like to tinker with my regularity with unnatural methods so food and movement was a priority for me.
  • People had recommended a recliner chair and wedge pillows. I didn’t get organized enough before surgery and I ended up not needing those things anyway. I’m glad I didn’t spend too much money. Plenty of pillows sufficed.

Best of luck with your mastectomy surgery. I hope you find your recovery as easy as mine has been. Please post your own recommendations if you have them in the comments. I’d love to hear what has worked for others.