Tackling the tough questions

The other night I had this random thought that I needed to go take a shower and wash my hair.  Then I remembered I had no hair. 

My last chemotherapy session was two weeks ago.  I am still losing my eyelashes but this week I am feeling better.  It is sunny and 70+ degrees in Chicago so I took a walk this afternoon with my Dad who has been visiting.   Next week I am going to work 1/2 days in the morning at the office instead of in my pj's at home.  When I work from home with only an occasional visit to the office it doesn't create a lot of questions.   When I have gone out, there are always odd looks and raised eyebrows.  I don't think the looks are offensive.  Everyone is curious.  I have been thinking a lot about the looks and the questions.  How do I answer them?  Do I answer them? 

Which leads to the even more basic question of how do I describe who I am?  How do I describe what I am going through?  How do I describe my progress? How is the experience of having cancer changed my life?

Am I a cancer survivor? Am I still battling cancer?  Am I cancer free?  The one thing I know is that I am a mix of emotions.  Or perhaps a mess of emotions is a better way to put it.  I have been so deep in battle with being sick, I haven't processed this yet.  When my mind drifts to those thoughts I push them away and tell myself to just hang on.  I try to work on getting through feeling sick.  I concentrate on eating right for today.  Then I try and rest and get enough sleep. 

But I know that soon enough I have to tackle the tough questions. 

Locks of Love

This is my beautiful friend, Robin.  I've mentioned her family before in a blog posting I wrote about getting ready for surgery.   "Centered"  Dinner with her family and another family from our old block was instrumental for my mental health!  Robin is smart and able to joyously laugh at differences.   She finds differences interesting and is willing to look and it seems to me say, "all right, it is enjoyable that we are different."  People who can do that and mean it with a sense of joy are amazing.   We taught Sunday School together for a few years.  I was always the one with the detailed lesson plan. She was always the one going with the flow of the kids.  Add in Bill, a great Dad, and we were a good team.  An architect, Robin has found work that is of value to herself and the community and does it on schedule that works for her family and her kids. 

Robin showed up right after my surgery.  She brought me scarves. She went with me on the scary trip to buy eyebrow pencils and stencils.  I'd look scarier still in public right now if I didn't have those.  Robin emails me and reminds me that things are going to be all right.  She makes life seem more normal.  She helps me laugh, sometimes even about our teenagers! 

And now, she has donated her hair to Locks of Love in my honor.  Locks of Love is a charity that helps children who have lost their hair.   Robin got a great cut from Suzie at the Mario Tricoci salon in Oak Brook.  Some hairdressers have experience with how to cut for Locks of Love, Suzie does.  Robin looks great with short hair!


My heart is warm and I am feeling better day by day.  So many friends have done so much to help keep me tied to the present.  Last week, one of my (adopted) brothers joked with me that I had gone a little dark in my writing.  Perhaps.  It is scary here.  But I feel hundreds of hands and prayers reaching out for me helping to keep me from sliding too far into the dark.  Thank you. 

Lockdown

I am in lock down.   No one is allowed to touch me without washing their hands.  I am not allowed to touch anything.  No door knobs.  No visits to the grocery store.  After my last chemo session, I went to Whole Foods and picked up organic fruit just for some real fun and excitement.   Now, I can not even cut my cuticles.  No raw food.  Best not to have even salad right now.  Everything should be cooked well.  I am washing my hands 20 times a day.

I am home-bound and bored.  Bored with DVD's of TV series, bored with food, bored with movies, struggling to read between the headaches.  During the weekdays at least I can work from home and bug the people at the office with questions and irritating suggestions about things I have been thinking up from left field.  I am sure they are ready for me to come back and do some real work and leave them alone. 

My white count is low.  When I got chemo last Monday it was 4.  Normal values are 4-11.  And this type of chemo causes Neutropenia, which leads to a reduction in white blood cells.  White blood cells are what fight infections.  And the treatment for Neutropenia is a drug called Neulasta.  The typical side effects of Neulasta: bone pain, joint pain and headaches.  Not anything the doctors want to put me through again if they can help it.  And definitely not somewhere I want to go again.  I think we have all figured out if there are side effects, I will have the worst of them. 

Who knows how low my white blood count is now.  I don't know how low it can go.  Friday afternoon I started to get an infection at the site where I had my lymph nodes removed.  My scar got red and raised and my temperature started to go up.  The whole area started to swell and feel uncomfortable all the way around my back.  I still had a headache and felt like I had the flu.  I have felt like that since chemo and that hasn't changed. 

The infection started at noon on Friday.  Perhaps the infection was caused by the craziness of trying to organize and pay hospital, doctor, lab bills after comparing them to the insurance explanation of benefits and deductibles.  That activity alone is enough to make a person sick.  I paged Kelly at 3 pm.  Kelly is an APN,  which stands for Advanced Practice Nurse.  I trust Kelly.  I didn't want to wait until the weekend and even though I wasn't that sick yet, I would rather deal with her than the on-call doctor who doesn't know my case as well.

She was worried.  She wanted me to take my temperature every two hours and start on antibiotics immediately.  If the redness and swelling around the scar increased I was to call immediately.  She mentioned drawing pen marks on my body to trace the redness to see if the area got bigger.  If my temperature went up even with the antibiotics, I was to call immediately.  She mentioned getting to the hospital immediately if the antibiotic didn't work.  Now, Ken was worried. 

Thankfully, now 48 hours later the antibiotic is working.  My temperature this morning is back to my normal 97.5.  The pain and swelling are down.  Antibiotics for 8 more days.  Looking forward.

Charity begins with Friends

My industry, the call center industry, where we answer phones and provide services 24 x 7 x 365 is a wonderful one.  It is full of caring, generous and very hardworking people.  For the past 28 years, I have learned at the sides of experts.  Their advice and experience has helped me buy and continue to grow a business my mother and I started.  And in the call center world, everybody knows everybody and everybody helps everybody.  There aren't six degrees of separation, there are two degrees of separation MAX.  I've always been happy to be part of this group.  Today, I am humbled to be part of this group.

These last few days there was a user group meeting.  A user meeting is where companies who all use the same equipment or who work in the same region get together and figure out how to do things better and smarter and they do it together sharing ideas.   We share ideas even though sometimes we are competitors, it makes the industry better if we all provide better service.  This one was for the software provider that we use.  Ken usually goes to these meetings but this time he stayed home to be there for my last chemo session.

A few weeks ago, I got a phone call from a friend in the group asking me if it was all right that they were going to do a raffle to raise money for a breast cancer charity in my name.  I was flattered and a little embarrassed by the attention but said,  "of course".  In my mind, I swear he said "a little raffle".  I appreciated that they were thinking of me and were thoughtful enough to find a way to be supportive.  In my mind, they would all pitch in $5 or $10 and they would raise a couple of hundred dollars and I was grateful.

Today I got an email.  The little raffle, which was supposed to be buy a ticket and 50% went to a breast cancer charity and 50% went to the winner, ended up being big.  The ticket sales were $1810.  And the winner Susan, generously donated her winnings back to charity.  Then my vendor, Professional Teledata, matched the donation.  So $3620 was donated today to find a cure for breast cancer.

These are good tears.  Thank you all very much.  I am very appreciative to work with such a generous group of professionals and friends.  I'm looking forward to being well enough to see you all soon.

Final Chemo Treatment was administered

Chemo round 4 went uneventfully.  My friend Ellen came and hung out with me and got to see how boring it all is and how doped up they make me.  She also got to see the beautiful care that I have been getting from the great team at Northwestern.  When you first get in, they take your blood to make sure you your white count is high enough to get the chemo treatment.  Mine was pretty low 4.1.   It is supposed to be between 4 and 10.5.  So I worry that the next two or three weeks I have to stay away from anyone that is sick.  Then off to see the oncologist and who knows what they he and his resident are really looking at or checking on.  Lines from Monty Python ran through my head, "I'm not dead yet," but I didn't say anything.

It feels like I have fallen off a cliff a little bit.  I don't have a next oncology appointment.   I asked, "when will I see you again?"  I felt like it was a date and I was getting dumped when he said, "I'll see you in a couple of months". I wish they would just give me a worksheet.  Some list to check off.  I would be so much more relaxed.  See the surgeon for a follow up then, see the oncologist then, boom.  I'd know.  I'd schedule it. 

Then on to treatment.  Ellen and Ken both came for the big finale.  They pushed in some steroids, some Ativan, and some Benadryl when my side effects started kicking in.  I said goodbye to Lora, the chemo queen.  I had to tell her that as much as I liked her I wouldn't really miss her! Then we went home and I lounged around.   For now, my appetite is completely gone. But I had Ken buy cake donuts, just in case.


So many questions still.  The drugs are just kicking in. I don't think I will have an eyelash or eyebrow left after this round..  And then the climb out of drugs and illness.  One reconstruction surgery in May.   How soon will I be strong enough to exercise?  Now, I can hardly climb stairs.  And still two or three more weeks downhill.



I think it is the mega doses of steroids running through my body at 4 a.m. that has me a little worked up.  I have already done some reviews of reports from work and some email.  But I can feel the headache creeping in and so I am off to try to go back to sleep.  

Looking forward.

Chemotherapy, Menopause, Death and Adversity

It is pleasant to look out the window today and see blue sky.  It is only momentary, we are expecting more rain this afternoon.  The last four days we have had dense thick fog in Chicago.   At times, I have not even been able to see anything out my windows fourteen floors up.  Not sure if the weather has affected my mood or all these other things swirling through my mind and body have sent me to a dark place.  What I would say globally about the last three weeks is that I have not been as sick as I was the last chemo round but I am also not as well.  I am not sure if that is understandable.  I have not bounced back like the last cycle and I still have one more to go.  

Monday is my last chemotherapy session.  Everyone else seems excited and has been very encouraging about it , like this is some sort of end.  I know that there are at least weeks to follow where the drugs will keep ripping me apart inside.  My mind swirls with the thought, "how low can you go" like my body is playing in some sort of Limbo game and I have to keep bending over backwards. The drugs are still killing cancer cells.  I can't look out there and see when I will feel good again.  No one can answer that.  Is it two months after chemo or four or six?

The chemo is forcing me into menopause.  Yesterday afternoon I cried.  Sometimes my eyes just dripped and a few times I crawled into my bed and sobbed.  By the end of the day, I was putting ice packs on my eyes to cut down the swelling.  Pathetic.

Perhaps it is menopause and the hormones crashing through my body (when I mentioned this to Ken his eyes popped open with a look of sheer terror).  Perhaps it is just that I am so tired.  I don't wake up anymore feeling rested.  Perhaps it is that my great-grandfather is dying and death seems so close right now.  Everything seems like too much. 

This morning I woke up to a quote in an email that helped me put it into perspective.  It didn't make me feel better but I am looking forward.

 "There is no education like adversity."
          Benjamin Disraeli.

Chemo Fog

Concentration is something that we take for granted.  Not me, not right now.  Right now, every hour of concentration is something that I have to work at.  This round of chemo has also brought me frequent headaches.  I am not complaining, these side effects are tame compared to the bone pain and the muscle pain of the Taxotere.  Actually,  I have a couple of weird things happening all at once right now.  My eyes and head seem to be at the center of the weirdness.

My eyesight has gotten horrible in the last month.  I am not sure what in the chemo is causing that but both nurses have said to me, when you are done you will need an eye exam.  I can't see well enough to read with my contacts, I now have to add cheater magnifying glasses while wearing my contacts to read.  It is very strange, standing in the drugstore, trying to read labels, with contacts in, my wig on and trying to put on cheaters that won't fit around my ears because the wig gets in the way.  And my reading glasses, you guessed it,  give me a headache. 

The funniest example was the other day when I was trying to open a new tube of medicine.  Well you know, that even in the best of circumstances, they make them adult proof.  The cap, which I was struggling to read,  said a variety of things.   It said, "close tightly push down and twist".  Well, I tried to do all three things at once.  I was squeezing the lid and pushing down and twisting.  It just wouldn't work.  I walked into the other room to get Ken to open it.  "How do they expect you to do three things at once," I asked.  "I can't seem to squeeze the top tightly  and push down and twist all at the same time to get it open."  Ken looks at me.  "Chemo fog," is all he said.

It was separate instructions, as I am sure you have all figured out already.  Ken opened it in a second.  Chemo fog.  It is a known side effect.  My neurons just aren't all firing.   Or maybe they have killed too many of them.  I can't seem to pull the little details out that are just sitting there on the edges of my brain.  Names, something that I was never very good at, are now impossible to recall quickly.  I have to stumble around and find them somewhere in my brain.   I always made lists but now, if it isn't on the list, it slips away for hours, if remembered at all. 

I sat through a meeting today with a prospective client and everything was clicking and firing and it went well.  But a couple of hours later, I was exhausted and you guessed it, I had a headache.  I'll take some Advil,  try to get a good nights sleep and that will heal some brain cells.

Waiting to Ride

We are blessed to have a beautiful apartment that has views of Lake Michigan.  From late November until February, the sun rises south of the building beyond.   All we get is the indirect sun over the lake in the mornings out our eastern windows.  When we can't see the sun in the morning, I feel the winter.  This year especially. 

As of this week, the sun has moved north again and we can see the glory of the sunrise.  It is always a family moment when we can feel the sun directly in the morning.  I love when I go to reach for a cup of coffee and have to turn my head away from the window so I am not blinded by the sun.   It is on purpose that I don't have window coverings on that kitchen window.  The moving of the sun and the change throughout the year help me feel connected to the earth and the seasons.

The last couple of days in Chicago have been beautifully clear, days filled with blue sky and bright spring sun.  It is a wonderful feeling.  In the morning the sun rises and the light squeezes in around the room darkening shades in my bedroom.  In the afternoon it bounces off the high-rises to the west and shines in my eyes as I sit in my chair.  I sit and feel the days grow longer.  I feel time passing and realize it won't be long before I am done with all this medical muck. 

Even with snow on the ground, I have been looking forward to going out for a bike ride.  I am crazy.  It is only 35 degrees outside.  My personal guidelines are that I won't ride outside until it is 45 degrees.  35 degrees, no matter how sunny,  is just cold.   At 35 degrees, it doesn't take but 10 minutes for the cold to leech any warmth out of your body.   I always feel it first in my fingers, toes and nose.  Quickly, you lose any feeling in them.  I am certain at this point, I won't be working hard enough or going fast enough to build up my core temperature.

I worked all week on being positive and trying to reach my goal for the weekend.  My goal was to ride outside for 30 minutes.  I successfully did two yoga classes this week for an hour each.  I am ready to clip onto my bike.  But for today, it is too cold for me.  I am waiting to ride.   

Sick of feeling Sorry for myself

Perhaps it is that I am feeling better.    Perhaps it is my spirit drowning out my body.  But I am sick of feeling sorry for myself.  I am putting on yoga clothes and on my way out the door to a very basic yoga class for one hour.  

It is going to be 45 degrees in Chicago on Saturday.  Ken and I bike outdoors once it is 45 outside.  If I plan this right, perhaps I can work myself up to a couple of miles on the bike on Saturday.  Yoga today and Tuesday evening when my favorite teacher, John is teaching.  Wednesday I could do 30 minutes on the treadmill or elliptical.  Saturday I could be on the bike, even just for 20 minutes. It won't be our usual old weekend routine of two or three hours on the bike each day but....my bike is ready.  Winter tune up done and it is ready to ride.

When I suggested this over coffee this morning, Ken stared at me.  Clearly I am looking for the pony in here somewhere.  But I am going to start this week with the positive attitude that "I can".  A friend sent me an inspirational  remake of the "We are the World video" this morning and it struck home.  With Chile and being reminded of Haiti, other people have it so so much worse.  It is good to be reminded of that when you have been just wandering from bed to chair and watching television for too many days in a row.   It is good to be reminded of it when you are feeling too sorry for yourself.

So I am off to do some gentle yoga.  I will try to be a friend to my body today and nurture and support my spirit.  And I will do the best that I can.   I hope your spirit is strong as Spring is coming.  I hope you too are striving for the challenges you want to tackle today.   I am going to make the best of my life for today.