Chemo's over, but the fun continues

(If you'd like to start at the beginning of this blog, it's here.)

On Tuesday, I saw my regular doctor. I wanted to talk with her about some post-chemo symptoms that I suspect are a result of the chemo:

• Dry and plugged up nose, and dry mouth.
• Fungal toenail thing, which wasn't complimenting the discolored and cracked appearance of my toenails.

• The surgery site from the removal of the chest port had a stitch working its way out, it looked infected, and had a big lump beneath it.
•  Worst of all, I'm starting to look like Patrick Stewart, with hair growing on the sides of my head and hardly any growing on top.

The few times I've seen my GP during treatment for cancer, it's been normalizing. She's not treating me for cancer. Seeing her reminds me that most of my life the medical treatment I receive will be for mundane things, like arthritis, skin tags, farting in public - all the physical joys that are interesting when middle age begins, and a pain in the ass when it becomes obvious they're not just visiting.

She told me that chemo dries out mucous membranes, thus my dry nose and mouth. She gave me stuff for that.

She confirmed I've managed to pick up a toenail fungus, and gave me stuff for that. 

She looked at the surgery site. I told her that I'd been able to pull part of a stitch out, and I had to trim it so it wasn't hanging outside the wound. It probably became infected then. She agreed the lump of scar tissue under my skin is large, and was going to ask the PA who took out the port about it.

And, she told me that if male pattern baldness runs in my family, I've probably inherited it and the hair on top of my head will grow slower than elsewhere.

Great.

I scared the heck out of myself this morning when I Googled "male pattern baldness" and "breast cancer" and "chemo".

The very white hair that first shot out on my head is being joined by darker hair that's a little shorter.

My eyebrows have continued to fall out, though there are signs they're starting to grow back in. There's some kind of activity going on under the skin where the eyebrows were; it looks dark like hairs are about to break through. I have exactly one original eyebrow remaining on the right and three on the left. And, my eyelashes are beginning to peek out into the world again.

My GP also talked about perfumes, and how they irritate sinuses that are already compromised. She said hand sanitizers are one of the worst offenders; they have to have lots of perfume added to not reek of rubbing alcohol.

*******

I am crocheting myself a new hat out of cotton embroidery thread. As the days warm and the hot flashes continue, I don't want to wear anything too insulating on my head when I'm out in public.

*******

On Monday, I go in to Radiation Oncology for my final treatment planning appointment. I'll be getting my third itty-bitty tattoo. If there's time at the end of the treatment planning, they'll give me my first radiation therapy jolt. And, we'll nail down the time each weekday that I'll be going there for the next six weeks.

Road show, pigment of my imagination, the real me, and my three minutes of fame

If you'd like to start at the beginning of this blog, it's here.)

Last week, for the first time in 16 weeks, I had no medical appointments. That doesn't mean I didn't think about them. I've been impatiently waiting for Radiation Oncology to call and arrange my final treatment planning appointment, which will probably be followed immediately by my first radiation treatment and scheduling all my appointments for the six weeks following.

Let's get this show on the road!

An example of "Getting this show on the road"

*******

At least once each day, I go in the bathroom, pull out a lovely hand mirror my brother made for me, turn up the lights, put on my Bartell's 300 reading glasses, and search for any changes to my non-existent eyelashes and the stubble on my head. I've noticed that there's a spot on my head that appears to have a different pigment and feels a little different softer than the surrounding skin.

Pigment-challenged

When I told my husband that I never would have seen this if I hadn't gone bald, he said "Then cancer was worth it!"

Funny man.

*******

My brother and his wife came to visit last week. I showed them my nifty and new little camera and my brother took this photo of me.

When I saw the photo, I was struck with how odd I look. I realized that when I'm in charge of the photography, there's nothing spontaneous about it. I pose, I take the photos, I choose the ones I want to use.

Here's one someone else took, and there's no hiding from how I appear. I've got the Roush double chin, and my fledgling hair growth pattern is remarkably like my father's.

Ugh.

*******

A few weeks ago, the Seattle Channel came by to shoot a segment on our housecleaning company's participation in Cleaning for a Reason. The video's on the Seattle Channel's Web site, and you can watch it below.

Start at the 9:10 mark. If you watch carefully, you'll see the spouse.

Seattle Channel Video can be played in Flash Player 9 and up

*******

As I'm waiting for radiation therapy to start, and as my energy and my old self returns, I've been able to tolerate a small amount of reflection on my feelings about the past few months.

I'm not a passive person, yet I've been struck by how passive I've been about treatment so far. I've had medical professionals give me choices, but they're usually along the lines of "If we don't do this, the chances of the cancer returning is XX%." I was left with very little to consider.

It's as if I've just been along for the ride. I have been thinking about the few

opportunities I've had to modify treatment. I haven't questioned much, because I know so much less than those who are treating me.

I wasn't given the option of time, either. Unlike other illnesses, I wasn't told that I should live with it until it starts to impede my ability to live my normal life, and then have treatment.

My one stab at modifying treatment has been consulting with a Naturopath. Yet that seems less like treatment and more like expensive magical thinking.

Reflections on a little yard work

Today I dug up three square feet of weeds in soft, wet dirt. I transplanted 20 leeks into soil I turned over, composted and fertilized.

Normally, this wouldn't be hard for me to do. But I had to stop every five or ten minutes to stop the world from spinning and get my breath.

My mind remembers doing this kind of work last year, no problem.

This year, I'm slower and don't get as much done.

It's been four weeks since I had my last chemo. I'm feeling stronger all the time, but remain easily fatigued.

The Word of the Day is...

...Dosemetrist.

When I first heard this term, I had to stop the conversation and ask what it meant. It was used during my first visit to Radiation Oncology, when a staff person pointed to an office and said "That's where the Dosemetrist will work on your treatment plan."

That had me worried. What the heck was a Dosemetrist? Some mad scientist with a bunch of beakers?

*******

This lull in treatment has been pretty nice. I'm definitely feeling better and have more energy. In terms of appearance, the hair on my head is growing, though only on the sides and back, as if I've been tonsured.

Me, looking up "Dosemetrist"

I have one eyelash left, which puzzles me.

Every day, at least once a day, I put on my magnifying glasses and look in the mirror for any signs of the other 73 (I counted them before they fell out) growing.

I imagine my eyelashes sprouting, like all the seeds I see peeking up out of the dirt in my garden. Little black dots turning into little stubby hairs turning into undeniable eyelashes. And here the sprouts are, plus the one eyelash.

*******

I started a Yoga/Pilates class on Wednesday, the first time I've taken either. My friend Jos is attending with me. In the past year, we've both had embarrassing fart moments, a true sign of middle age and a scary harbinger of things to come. Prior to the class starting, we reminded each other of this and joked about one of us letting one rip during the class.

Well, I did. It was during a Yoga pose I'd just mastered.

Not the Yoga move I mastered

I've come to understand that I can get away with just about anything, being bald and obviously in treatment for cancer. Everyone in the class ignored my bout of wind. They probably thought "Oh, it's that woman with cancer. She probably doesn't have any control over her body while she's sick."

I've since learned that it's not unusual to fart in Yoga.

On the way out, Jos said someday we'd look back fondly on this little episode. "Yeah," I said, "When we're so old we're farting all the time, we'll look back fondly at the time we only farted once a day out loud."

*******

Last Friday I had my third visit with the Naturopath. She wanted to see me after chemotherapy and before radiation therapy. I don't know if Naturopathy will help keep cancer from returning, but I'm certainly willing to give it a shot.

I had hoped that I could do this via diet, but I left the Naturopath's office with a list of supplements to take, including Meriva Curcum, fish oil capsules and Turkey Tail Mushroom, which I've seen in local forests.

Turkey Tail Mushroom

She also said that the aloe vera gel recommended by the Radiology Oncology Nurse Practitioner wouldn't be nearly as effective as seaweed compress on radiation burns.

I ran all this past my Oncologist, and he didn't have any problems with it.

As I said, I'm willing to try alternatives, if they do indeed assist in keeping cancer from returning. But how will I know if it's working? It will be easy to determine if it's not.

I showed her my fingernails and toenails, which are somewhat of a rainbow of colors between brown and red, due to the chemo. The Naturopath advised me that it may be hard for me to expose my toenails this summer because they'll be ugly or I may lose them. I told her and her intern "I'm bald. What do I care about how my toenails look?"

*******

When I go to chemo or radiation, I often park in a location where I can easily see the apartment building my grandfather's firm designed.

Albert Jasper Roush died from lung cancer at 50, though he never smoked. His son, my father, had the BRCA mutation and I suspect my grandfather is the parent that gave it to him.

*******

Last week at work, a temp who I've hardly said anything to came over, to my desk and said "I heard you've had breast cancer. So did I, 13 years ago." She then proceeded to tell me about her diagnosis, treatment, surgery and reconstructive surgery.

She asked me lots of personal questions. I was politely cold. I found her casualness irritating, and her dragging my personal life into her realm of acceptable questioning offensive.

I don't want to buddy up with every other woman who's had breast cancer. By having cancer and going through treatment, I haven't joined a club. I doubt if I'll go on cancer walks or participate in other fund-raising activities.

This doesn't mean I'm not willing to talk about it, but it has to be when I'm comfortable and with people I'm comfortable with. I'm happy to respond to queries from people I'm fond of and I'm okay with being bald and making it visibly obvious I'm in treatment, but that doesn't mean I am casual about having cancer. In fact, I'm pretty deliberate in my various responses.

I hope if I'm never that casual about my illness or intrude on someone's privacy the way the temp did, I'll recognize it and stop myself.

******

On Wednesday, we went for the second visit with Radiation Oncology. They took me into the back to change into a gown. I was escorted into a room with a CT scanner. The tech told me the Radiation Oncologist was going to come in and use a permanent marker in locations on my breast and under my arm, and the tech put some little knobby things on the marks. 

Knobby Things

The tech ran me through the CT scan. I was laying on my back with my head turned toward the right and my left arm stretched up over my head.

After the scan was done, she removed the knobby things and informed me she was going to give me two small tattoos. I asked if I could pick the color, and she said "Yes, as long as it's purple."

"I'm going to put a drop of dye on you in two spots and then jab you with a needle." That's the jist of what she said next. And she did indeed jab me with a needle in two spots.

I now have two tiny purple dots on me.

I was done, and free to go. They're going to call me in the next week or two to set up the final treatment planning session, at which they'll refine the map of my body, give me one more tattoo and probably give me my first radiation therapy treatment.

Too many strangers touching my breasts

(If you'd like to start at the beginning, it's here.)

When I was first diagnosed with cancer and knew that my appearance would radically change, I thought I'd take advantage of the opportunity and radically change my fashion.

I thought about how rarely a person has the chance to do this comfortably. Hell, I was going to be bald. Why not change the rest of me, too?

When I still had energy, I went to Nordstrom in downtown Seattle, found an employee in the nicer women's clothes section, and asked her to have at it.

She brought me a number of outfits, and there was one that looked wonderful. Three pieces - skirt, shirt and jacket. These three pieces cost over $1000. They looked really good on me and they were really different for me.

Wisely, I asked them to hold the outfit for a few hours while I continued shopping. I didn't continue shopping, and I didn't return. I couldn't justify spending a grand on one outfit, appearance-changing opportunity be damned.

I have continued dressing like I always have. I haven't transmorphed from an ugly duckling into a butterfly.

*******

My energy level has definitely been increasing since chemo was stopped three weeks ago. I'm no athlete yet, but I'm able to move about without exhaustion.

I am now seeing that when I was exhausted, un/subconsciously I liked the fact that I could get away with not doing much. It was an excuse to not heed the Conner Curse, the family trait that makes some of us antsy.

My brother demonstrating the Conner Curse and being antsy

Now that my energy's coming back, I will miss the excuse. Separate from the crappy chemo feeling, I am looking back fondly on the hours and days I just sat.

*******

On Wednesday, the spouse and I went to my first appointment in Radiation Oncology. That's where I'll get radiation therapy.

We were put in a small exam room. The receptionist led us there, got us settled, and took my photograph. I complained that how I look now isn't how I look, but she ignored me.

Between her and the Nurse Practioner's visit, I noticed a catalogue for items that scream "I'm bald!"

The catalogue also included a post-surgical drain belt for holding those nasty drains. I could have used this to hold my one drain in one pocket and and a snack or the TV remote in the other.

The nurse practitioner came in and spent about an hour with us, asking us questions, writing things down, advising us.

The one thing she pushed is exercise. She said that I need to start exercising now and to continue exercising through radiation therapy, to keep at bay to the greatest degree possible the cumulative fatigue that I'll experience.

She surprised me by saying that my cancer was Stage 3A. The Oncologist had told me it was Stage 2.

She also talked about where the radiation therapy would be directed and the the skin side effects I'll experience. Apparently my breast, clavicle and neck will have the experience and pain of a bad sunburn, and that it will start getting uncomfortable between 4-1/2 and 5 weeks.

My breast may change shape and my nipple will be sore. I'll be slapping aloe vera gel on the radiated spot three times a day.

When they told me my hair would come in different after falling out from chemo, I asked for red and curly. If my breast is changing shape, I'd like to see them try a vesica piscis.

The machine they're going to use on me is a linear accelerator, which apparently I could build at home and use myself.

She asked to examine me, gave me a "gown", left the room and came back and did a breast exam. Should it be breasts exam if she examined both? Or breast exams?

The Radiation Oncologist then came in. Since the exam room was small, at this point things were getting very crowded. He sat in front of us and said "You asked Kathi some good questions." I couldn't help but wonder if this phrase was one of the primary social skills tools he learned in med school, to make his bedside manner better. Male doctors often irritate me with their lack of compassion, but this guy was okay.

He, too, conducted a breast exam/breasts exam/breast exams.

I'll go back next week for radiation treatment planning, when they'll map out where excatly on my body I'll be blasted:

by the illudium Q-36 explosive space modulator:

Then a week or two after that, the treatments will start, five days a week for six weeks.

*******

Yesterday morning I saw my GP, who I haven't seen since before surgery. She's been my doc for about 25 years, so I can tell her just about anything without worrying.

I was seeing her to get a referral to continue to see the Naturopath, whom I have an appointment with this afternoon. My doc is a little skeptical of Naturopaths, but when I told her the ND actually prescribed pharmaceutical medications, she visibly relaxed.

We chatted about my treatment and she advised me that when I'm done with radiation, I'll be told I'm cancer-free. She suggested that this will trigger some emotional turmoil. It's not the first time I've heard this and while think I'm ready for it, no doubt being ready's not really possible. It must be lived through.

*******

Yesterday afternoon the spouse and I saw my Oncologist. I had a bunch of post-chemo, pre-radiation questions for him, such as the difference between his staging of my cancer and the Nurse Practitioner's.

Apparently about the time I was diagnosed, the method of staging changed. He added "Your cancer didn't."

He said my periods probably aren't going to come back, the reason being that chemo affects hormone production in ovaries. I'm reading "affects" to mean "messes with".

He then said he wanted to examine my breasts...

*******

So I have a few weeks to play. I'm going to try to get out and walk every day, hopefully a few miles. I start Yoga/Pilates next week. I plan to ride my bike to work one day a week in May for the Commute Challenge. I figure that's a good enough start to re-entering the world of physical activity.

*******

Today after my visit with the Naturopath, I'll see my Great-Nephew, who's the best reminder of life that I can imagine.

I am changing my name to "Fuzzy"

Cleaning with cancer

We've been using April Lane's Home Cleaning for many years. They come by every week or two and make us happy.

I'm not usually home when the house is cleaned. One bad chemo day, I was home when the cleaner arrived. I didn't want to alarm her, so I made myself visible and told her why I was bald. She didn't say much other than "Okay", and that was the end of that.

Or was it?

She apparently went back to the office and told the operations manager, Samara, about my sitch-ee-ay-shun. Samara emailed me and told me about a program that April Lane's participates in called "Cleaning For A Reason". She asked if I wanted to have my house cleaned through this nonprofit.

Heck, yeah!

So for the past few months, we've been getting a little extra cleaning, which has been a treat. We have a lot of books, and they were embarrassingly dusty, so we had the extra visits concentrate on unembarassing them.

Last week, Samara contacted me again to ask if the Seattle Channel could interview me about our participation in Cleaning for a Reason.

Heck, yeah!

They all showed up this afternoon. Samara, Katie and April arrived from April Lane's, and Roxanne Vainuku and Vincent Pierce from the Seattle Channel.

First, they interviewed Samara about the program and April Lane's participation.

Then they interviewed Katie, an April Lane's cleaner. It was kind of amusing to see how the video producer carefully placed the cleaning supplies in front of Katie, so they'd be in the shot.

Roxanne and Vince were pros, and clearly didn't have a problem with moving around in our crowded little house. Vince knew exactly what shots he wanted, and Roxanne's questions showed that she had clearly done her research.

Vince got shots of Katie dusting, vacuuming and cleaning the sink.

Apparently the Mayor attended a conference about ironing.

They interviewed me, and then they were gone.

Phew!

I think I might be getting my body back

My calendar looks empty, without all the chemo appointments. I've got other medical appointments lined up, but not the weekly voluntary poisoning.

After two weeks without any chemo, some things remain the same. I still have no eyelashes. I'm not able to exercise. My eyebrows are hanging on by a... eyebrow. I occasionally get that gross sensation at the back of my throat, the poison telling me it's there. My hair is still maddeningly short.

Some things are different. I'm not exhausted. I'm willing to go out and meet friends. I have a little bit of fuzzy hair on my head. 

And, the port is out of my body and in a jar on the dining room table.

I took some photos the night before surgery, knowing it would be removed.

The little lump that was

Yesterday afternoon the spouse picked me up at work, and we headed to Capitol Hill. We went to the surgery center, checked in, and were invited into a surgery room.

The RN took my information. I asked if I could keep the port, once it was removed. She said probably not. She asked me to change into a "gown" and left.

The PA came in, made sure I understood what was going to be done, and invited me to lay down on the table. I asked if I could have the port, and she said "Sure." She said she'd put it in a bottle.

Once I was on my back, the PA told me to turn my head to the left, I assume so that I wouldn't look at what she was doing. I scratched my head and she advised me not to do that again. She told me I'd feel lots of tugging when the Lidocaine kicked in and she started wrassling with the port to get it out. She said that the port had been in long enough for tissue to adhere to it.

Great.

She did indeed wrassle and I did indeed feel lots of tugging. She had to give me more Lidocaine when I said "Owie!" My feet were dancing some odd jig.

Meanwhile, the spouse was behind the curtain, out of sight, and asking me "Is now when you want me to take photos?"

 

I could hear the scalpel cutting my flesh - an awful sound.

She finished, stitched me up, and handed me the port.

It reminds me of the various alien things that are inserted into heroes' bodies by villains in science fiction movies.

I had to promise not to ever remove it from its jar, as it's a bio-hazard. Yeah, sure.

*******

Yesterday I tried researching before and after photographs of chemo patients, specifically what their hair looked like before chemo and what it looked like when it started growing back. I was hoping to get some idea of what's happening (or not) with my hair.

I wasn't successful, but I did learn that perhaps the reason the fuzz on my head is so gray is because chemo kills the hair pigment that produces color.

*******

Slowly and in fits and starts, I'm getting my body back. The port is out and when the surgery wound is healed, all I'll have to show for the bit of Borg that was in me is a scar. I have a little more energy. There is hair, though it's growing at a snail's pace.

Some things remain affected by the chemo. My fingernails and toenails are streaked with black. My body is horribly out of shape. My feet hurt.

Some things are permanently changed. My left breast will always look different now. I have a long scar on it and under my arm. My left underarm is still numb; a result of the damage done to the nerves there when the surgeon scooped out tissue to hunt for cancerous lymph nodes. I'm told that this may not reverse.

My skin is very dry and my hands look about 70 years old. I never have been particularly concerned about moisturizing as a cosmetic, and as a result I suspect my hands' aging has been made permanent by the chemo.

*******

It's hard to not be affected by my physical appearance when one breast is now different.

Granted, the only people who will probably ever notice are my husband and I, and the many medical professionals who are now a part of my life.

When I'm naked and look in the mirror or look down, the change is impossible to ignore. The breast that had cancer is smaller. In a way, it looks younger. The nipple looks as if something inside my breast is tugging on it. There's a long scar on the side of my breast.

My attention has been on treatment and I predict that as treatment becomes a thing of the past, I'll care more about my appearance, including my breasts.

When I start looking normal again, the parts of me that are permanently abnormal will then capture my attention.