Back to work

Tomorrow I will be going back to work on a part-time basis.  I'll go in on Monday, Tuesday and (probably) Thursday afternoons.  I would have liked to say I can come in mornings but it's impossible.  I need 12 hours of sleep a night at this point, and when I say need it, I mean I cannot function at all without it.  I simply can't get up - my body refuses.  So, I will go in about 11:30 to 12:00. 

I'm extremely fortunate in that I have an understanding boss and HR department. They are actually allowing me to come back a little early and accommodating a part-time schedule, which I understand they don't usually do. 

This should bring me joy, a step towards getting my life back to normal.  But I'm rather nervous because I'm not sure exactly how much I am physically up to.  The last thing I want to do is be unreliable.

The fatigue chemo brings on is hard to describe.  I woke up today at 10:30.  I was tired still, and still a bit queasy, but decided that I would leave the house.  I wanted to buy some ballet flats - all the better to sooth the neuropathic foot.  (I'm a heel junkie - that's going to have to change.)  Since my husband has been doing almost all of the grocery shopping, I thought I'd also go to the grocery store and give him a break and let him watch the super bowl.  So, I got dressed.

That act required a rest period.

I left my house at 2:00.  I had to sit down several times in the mall to catch my breath.   This, by the way, is a very tiny, dyiing mall, with only a Macy's, A Broadway Shoes and two or three little stores inside.  It's not like I was walking inside the Mall of America.  So, it was me and grandpa, sitting in the chairs in the middle of the store: one waiting for the energy to move and the other waiting for his wife to finish her shopping.

I bought my shoes and when it came time to pay, I actually leaned on the counter.

Honestly.  Elbows on it, head down, catching my breath.  Not being dramatic, not thinking about myself.  Just waiting to breathe and regain some strength before I realized how ridiculous that must have appeared.  I was dressed trendy and bewigged - on first glance I didn't look old, cancer-stricken and worn out.  But, what I didn't know was that waiting in line is energy-depleting..  The clerk joked with me that I must have had a hard day shopping and I agreed.  I didn't tell her that I'd been walking for all of 15 minutes.

I thought about skipping the grocery store but decided to soldier on.  I bought a rotisserie chicken, some tubbed mashed potatoes and some carrots - and asked for help to my car.  

I  now desperately need a nap.  I need to sleep like a marathon runner in the Dubai desert needs water - deeply, urgently and endlessly.

I've been awake 6 1/2 hours total.

This must be the chemo-induced fatigue everybody talks about.  It surrounds you like a fog.  Even simple things, like getting dressed, require rest.

So naturally, I'm concerned about my work productivity.  My job is a desk job so once I get there I should be okay.  But, it sometimes requires some low-level thinking, and I'm finding even that hard.  My memory is completely shot and I can't write a paragraph of this blog without forgetting a word I intended to use. Chemo-brain rears its ugly head.  (Thank goodness for tabbed browsing and thesaurus.com)  I get very confused at certain things, anything that requires memory or organization.

It will be nice to do something useful, and turn my focus to something aside from cancer. It will be comforting to have a place to go where a man in a white coat isn't asking me intrusive questions, or where somebody isn't putting an IV needle in my arm.   It will be nice to be in a place where everybody isn't focused on me, and where other people have problems too.   I'm looking forward to being there and seeing my coworkers again and trying out some normality. 

Naturally,  I fear I'm not going to be up to normality, as much as I'm ready for it.    But, over the years,  I've learned we often end up being able to do things that we originally thought we couldn't.  So, maybe going to work will be energizing for me. Maybe it won't be any more exhausting than being at home.

The one thing I do know - this too, shall pass. 

If not, and you need me, check under my desk.  I'll be taking a nap.


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Taxotere vs Taxol

Because I was getting painful neuropathy in my hands and feet, my doctor decided to switch my chemo regimen half way through.  Instead of a large dose of Taxotere along with a side of Carboplatin every three weeks, I am now getting a smaller dose of Taxol weekly.  So far, I'll still keep my every three weeks "Carbo" schedule.

Wednesday, when I went in for my infusion and my nurse saw the new orders, she looked surprised.  I told her why I was being switched, and her surprise grew to shock.  "You are kidding me!  Taxol's number one side effect is neuropathy, much worse than Taxotere!"  It was my turn for shock, which she noticed because she want on to say, "Well, what do I know, I don't have a big ol' doctor brain."

Not exactly a confidence-inspiring moment.

Anyway, because Taxol can cause allergic reactions in some people, I was taken to the "high risk" room, meaning I couldn't sit with my chemo buddies Jeannette and Burt this week.  Neither of us were happy about that. 

My pre-meds have changed to prevent the possibility of allergic reaction.  Now, along with the steroid drip and anti-nausea meds, I also get IV Tagamet and IV Benedryl.  I wasn't happy about the benedryl, because the pills have made me hyper in the past.   I could just see myself sitting there, chained to an IV bag, body jittering and tense, rattling the IV pole and irritating everybody around me.   But, bendryl is different when it's in an IV.  It made me sleepy - even though they gave me a half-dose,  I was still drowsy for half hour or so and my tongue felt like it was made out of cotton..

I couldn't have talked with Jeannette and Burt anyway.

Aside from the different meds, the infusion went as usual.    Jeannette and Burt peeked in and waved good-bye when they left and as always, I was the last one there, staring at the clock, just as I did in school.

Tick tock.  Tick tock.  Drip.  Drip.  Drip.

Finally, released.  I drove home feeling okay but not hungry as I normally am.

Thursday I had my usual post-chemo feelings. It's hard to describe -- your body is kind of shut-down but you can function fine on a slow level - most think because you still have steroids in your system.  But, I wasn't hungry, and I had to force myself to eat some soup and drink my water.  I woke up at 10:00 a.m., napped from 4 to 6:30, and still went to bed at 10:30.  (Insomnia is completely gone by now.)

Then came Friday.  I was extremely tired and slept a lot and began experiencing nausea for the first time.  The hot flashes seem much, much worse and it's hard to imagine how that's possible,  I can just about heat our house with my body temperature alone.  I would melt a snow cave.  Plus, I'm achy, and that's new.

So, was the switch worth it?

The neuropathy came back.   My hands and feet are again tingly, but even more painful than before.  I'm having shooting pains in my hands.  Weirdly, my index finger feels feels like there is a thorn stuck in it.  I keep looking and trying to pull it out - but, there isn't anything to pull, nothing is there. It's just a nerve screaming at me.

I'm taking l-glutamine regularly in the hopes that it will help in the long-run.  Which is hard because now I have this chronic, low-level queasiness and the thought of swallowing it makes me kind of gulp.  Back to anti-nausea meds.

In the Taxol vs. Taxotere fight, so far, Taxotere wins.  I'm sorry I put my money on the wrong one.

Eight more weeks to go.  Drip. Drip. Drip.

Cancer Cliche #1: Shaving Heads in Support

You've all seen the movies. The poor woman, sick with cancer, bald from chemo, comes home from the hospital, eyes circled with dark and exhausted - only to see a group of her friends and family, standing there - bald. Heads shaved in support of her. This makes her smile and gives her energy to go on with her treatment. Seeing other people bald gives her the will to live.

In a recent movie, a bald teenage cancer patient who wants to go to a prom but is embarrassed by her head watches as her gorgeous mom, Cameron Diaz, shaves her head to encourage her to go, showing her support for her bald daughter. Then they go wig shopping because we know Cameron isn't going to walk around bald for a whole movie. I'm sure it was embarrassment enough that they cast her as the mom of a teen.

Naturally, being a fan of media and pop culture cliches, I've been expecting to come home any day to find friends and family with bald heads, shivering in the cold to support me.

But no. Not a head shaved in my honor.

I'm so depressed.

Does nobody love me?

Okay, my husband gets a pass, since he's already sporting a full head of male pattern baldness. But, what about my 23 year old son, with not only a mass of curly hair but also a beard and mustache? What about his girlfriend - she won't lose her sassy short curls in my honor? What about my 13 year old? Granted, he did cut it from his shoulder to his ears - but is that really enough? My sister still has all her luxurious, curly hair. How dare she? Why, they are practically flaunting all that hair in my face!

A rite of cancer isn't happening for me, and I'm disturbed by that.

Or, am I?

My husband has taken over many of my household chores and has put up with more than he ever expected when he married a young thing like me, 11 years his junior.. My son has to endure his bald mom in scarves picking him up from school everyday, and we know how well middle school kids tolerate differences. I have had to skip an out-of-town contest he was in because of a chemo treatment. He never complains and his grades are still straight As - isn't that support? My oldest picked up my youngest from school daily when I was recovering from surgery and hospitalized - that is support I couldn't have done without. Friends have sent me thoughtful gifts and several meals were delivered. And, I have received wonderful cards and messages of encouragement from all over. It's time to go back to work, and my employer is even going to accommodate my grueling medical schedule, which they don't have to do.

Having any of them be bald wouldn't have made any of these things any better.

If you are considering shaving your head in support of your loved one with cancer, keep this in mind: it won't make chemo go any faster, it won't remove scars,  it won't make the cancer patient's hair grow back, and it won't change their prognosis.

In the secret places we cancer patients talk about this kind of thing, the consensus is by most of us that we don't want people shaving their heads to support us.  As for me, most of the time, I'm not even thinking about being bald and suddenly seeing my kid's bald head would startle me back into thinking "Oh, yeah, I have cancer."

Personally, I like looking at my older son's lovely curls and his girlfriend's gorgeous cut, and I love watching my teen's hair start to curl softly around the edges. I would be deprived of that.

Not to mention, if I had some sort of bald fetish, I know where to get my jollies: I see a wide assortment of bald heads weekly in the infusion room.

My advice: before you take that cliched step of shaving your head in support of somebody with cancer, think about exactly what kind of support that will really provide. Is it something they will find touching? Are you sure?  Or, is it an empty gesture in lieu of actual valuable help they will need, such as  meals, phone calls, help with rides, and house cleaning?

If you are certain you want to do this,  at least grow you hair out ten inches first, and then donate it to Locks of Love. That shows real support to children with cancer.

Otherwise, my advice is to leave this silly cliche in the movies, and to Cameron Diaz, where it belongs.

Chemo Psychology

All of us on chemo count down to when it ends. We celebrate our halfway marks and rejoice when it's over. Even those of us on herceptin, and who still have 9 more months of infusions feel the same way about our chemo dates - we set them as mile-markers on the road to the end of our treatment. Each one is a step closer to being done with cancer and getting back to our lives.

Three weeks ago, I had reached the halfway point. Three chemos down, three to go! I'm halfway home! At least one thing will be completely finished in this cancer game. I knew that the last three would be more physically disabling then the first three - but after the third, I would be over the hump. The finish line was ahead of me.

Then, neuropathy got bad enough, early enough in treatment so that the doctor didn't want to push through. My chemo regimen changed. Instead of having chemo every three weeks, I'll get a weekly dose for nine more weeks.

Instead of having three chemos to go, I now have nine.

I'm not halfway there after all.

Intellectually, I know it all comes out the same in the end. My end date will be the same, likely March 31. The lower doses more often may even be physically easier on me. I go in weekly for herceptin anyway, so it won't change my plans for Wednesdays.

But the fact remains that I am no longer halfway done with chemo. Instead of spending three more six hour days in the infusion room, I now have nine more five hour days. Not quite the trade-off I'd hoped for.

Plus, this new regimen means extra steroids, extra nausea meds, extra sleeping meds, lots more water drinking/high fiber foods, etc. Instead of every three weeks, I have to do this weekly.

Today as I get ready to leave, I should be saying, "Only two more left after today" but instead, I am saying, "I have 9 more treatments to go."

Psychologically, the road seems to have gotten a little longer. I'll have to reset my markers.

After today, I'll only have 8 treatments left. After next week, I'll be halfway there.

Free Stuff for Breast Cancer Patients

Yeah, cancer sucks.

But, there is always a silver lining - you can get free stuff!

Who doesn't like that?

There are many companies that generously offer free services to breast patients. The items offered range from headwear to makeup to classes to gas cards to informational booklets.

Being the super kind and wonderful breast cancer patient that I am, I have compiled a list for you so you can get your very own freebies.

In return, when you do your Amazon shopping, please come here and use my search box to find your items. I want free stuff too! ------->

The American Cancer Society has a lot of help for cancer patients, from classes to goodies. You can get gas mileage reimbursement if you have to travel a certain number of miles per year medical for appointments, and they will send you a $25.00 card to get started. You can get either a free wig or a $75.00 reimbursement on a wig, purchased from certain shops that they will recommend. They offer numerous support classes, such as nutrition for the cancer patient, and many others. They also offer rides for those who can't drive. They are a wonderful resource and kind on the phone too.

My favorite was the Look Good, Feel Better class. You sit with a group of ladies who all have cancer and are in various stages of chemo. A licensed esthetician teaches you to put on makeup to hide the changes chemo will cause, and you also walk out with an amazing goodie bag with tons of free (and name-brand) makeup. (One thing I hadn't thought of - your old makeup has bacteria on it - and when your white counts are low you can get an infection from it. So, this new makeup is not only fun but necessary for your health.) They also had some free hats at the class I took. Check out the website to locate one in your area - it's a national offering.

France Luxe will give breast cancer patients a gorgeous silk scarf of their choosing. Click on good wishes on the top right of the site to request one. The CEO herself will contact you back. They ship free inside the USA and internationally if you cover the costs. These scarves retail for $70.00 so it's a generous offering. If you aren't a cancer patient, buy something from them because they do good work.

Heavenly Hats will send you a package of hats. Keep in mind, these are donated - some will work for your style and some may not but heck, it's free. It was started by a kid and has grown to be a wonderful service for those who have lost their hair.

Fill a Heart offers a free, heart-shaped pillow which comes in very handy after a mastectomy.

If you have had a mastectomy and lymph surgery, you are forever at risk for lymphodema. You cannot have blood pressure taken or blood drawn from that arm. If you are going into the hospital and want to remind medical personal of the risks, you can get a free bracelet from ReidSleeve.com

The Livestrong Foundation offers free downloadable materials, as well as guidebook that will help you navigate your cancer experience. You pay for shipping on the book.

Cleaning for a Reason will provide three free housecleaning services for people undergoing chemotherapy. You have to fax a note from your doctor. May be overbooked in some areas, (like mine) but is a very necessary service for those who can take advantage.

People undergoing active chemotherapy can receive little treats from the Chemo Angels. There is an application process, and you can sign up for a family member to surprise them.

There are numerous local outlets that offer items to smooth your cancer experience. My hospital has an outreach program with a nurse who called me monthly to make sure I was fine and if I need anything, and who delivered a bag of goodies to me in the hospital. Your doctor will put you in touch with this group if it exists in your area. There is also more functional help for those who may end up in financial distress because of cancer treatment. The National Institute for Health or the Susan Komen Foundation is a great place to start finding these grants. They offer financial help to pay for medication, travel, medical costs, even rent.

I have also found that most wig shops will automatically offer a 10 to 20% discount for chemotherapy patients. If you are buying a wig while you still have hair, make sure you ask.

If you know of any national companies that offer a free item to a cancer patient, feel free to post it in the comments and I'll add it to my list.

Loathing Leukine

My granulocytes have been seriously low. Normal is 2.0 to 7.8 and mine have been 0.2.

No wonder I now have chronic eye infections.

That means before chemo I have to take a granulocyte stimulating drug called Leukine. Most breast cancer patients get neupogen or neulasta, but I get leukine. It does the same thing so I'm not sure why this is my doctor's favorite, but they all cause unpleasant side-effects.

The drug has been waiting for me in my fridge, staring at me sadistically.

Last Wednesday I was told to take it once a day for three days. This is an injection you give yourself subcutaneously, which is no problem for me as I have been giving myself Imitrex injections for more than 20 years.

The side effects from this drug are awful. Way worse than chemo, which are mostly just fatigue and a vague dysfunction of your bodily systems.

Leukine, on the other hand, causes a major migraine-style headache that, unlike regular migraines which manifest behind the eye, start at the base of the skull. It also causes me a seriously stiff neck, to the point that I can't turn my head at all. It causes all-over bone pain and volcano-like heartburn. And, it exacerbates the already present chemo-related fatigue.

The good news is on the first night I took it, I slept 15 hours. Not great sleep as my head was throbbing violently in my dreams, but it was sleep nonetheless. No sleeping drugs necessary. The other good thing is when you stop taking it the pain stops. I took it at 6:00 p.m. on Wednesday through Friday, and by Saturday afternoon I was head and neck pain free.

My biggest fear is now that I'm going to a weekly chemo schedule, I'll have to take it more often.

That stuff is killer. I can function at a minimal level on chemo. I can't function at all on leukine. My husband's car was stolen on Day 2 of my leukine injection and I was not even able to help him by driving him to the rental car place. I just couldn't function and was in bed until 2:00 p.m. He's been so helpful to me over this experience that I hated not being able to help him the one time he needed me to.

You want to will your body to do things, to function normally, but sometimes - it just doesn't work, no matter how much will you have.

I loathe Leukine.

Herceptin Drip

The herceptin drip is one of the more troubling aspects of cancer treatment.

No, I'm not talking drip like a needle/bag/infusion drip.

I'm talking about a well-known side-effect of herceptin - a runny nose.

Warning: The following may be TMI. It contains an in-depth discussion of nasal discharge. The squeamish and prim & proper should skip this post.

It started off slowly. For a few days after herceptin my nose would run, and I began packing tissues with me. Like your granny, I had crumpled tissues in my purse and my coat pockets.

But, it has gotten progressively worse each week. My nose, which first was like an occasionally drippy faucet, has now become a full-fledged, always-on shower. Stand under me and you are sure to get wet.

My laptop is wet as I type this.

I told you, TMI.

I now carry a tissue in my hand at all times. I can never be without as I must constantly stem the tide. I have a portable tissue packet in all purses, jackets, and in my car. I have a full-sized box on my dining room table, in my bathroom, on my coffee table, in the kitchen - anywhere I'm going to be for more than 30 seconds. I have crumpled tissues in my pockets, stuffed down the front of my shirt in my "cleavage" and always, always in my hand.

It's messy too. I have tissue lint on my clothes from forgetting to empty my pockets before the wash. Crumpled tissues are all over the house - on the floor, on the tables, on the counters, in my car. (Don't forget, I'm ADD - we forget where we leave stuff.)

Honestly, Kleenex needs to use me in their advertising.

Not that I can afford Kleenex at the rate I go through it. Generic all the way.

This herceptin drip is actually interfering in my life. If I move my head, the waterworks start. If I walk, the hose goes full force. Even if I sit still, I'll feel it running down my Philtrum. (Your word for the day.) I've avoided doing anything that causes me to bend over, because then it's the worst, a flood of epic proportions. Pairs of animals start following me; it's that bad.

Now, this nasal drip is not like when you have a cold. It is not thick, mucusy, or hopefully, full of germs. You can't sniff it up. It's watery, like tears - like when your eyes are watering from smoke or chopping onions and you can't control it. It's just water coming out of your nose and you really can't even tell it's going to happen until it's running down your face. Which it always is.

I just spent the last fifteen minutes trying to mop my floor.

I didn't need any mopping solution. That's how bad it is.

When you have a cold, blowing your nose can give you a minute or two - or more - of relief. But, no such luck with the Herceptin Drip. It's a chronic, constant, uncontrollable stream.

My eyes do it too, but so far, only when I go outside and then come in. I'm sure all the store clerks at my regular haunts think I have an emotional disorder by now, since I'm always showing up teary-eyed and nose running.

With all that water loss, no wonder I'm always thirsty.

I must say, it's a testament to the advances in cancer treatment that the worst long-term side effect I have is a dripping nose.

Soon, I will go back to work. And, I will have to type things, and file things, and walk around and do things. I will have to use two hands in my job.

I have a plan for doing that without wetting the front of my shirts and needing to go home to change, or without having to type while liquid streams down my chin. Since chemo has sent me into menopause, and since I have leftover tampons....well, you get the idea. If you see me walking around with strings hanging out my nose, just say hello and move along.

A girl's gotta do what a girl's gotta do.


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