Flesh eating disease

So,  I was literally priding myself the other day for not having ANY side effects from the Tamoxifen. I thought I was stronger than the drug!  I have been having very dry and painful skin,  but I knew it was from our move to the new house and my body isn’t used to clorinated water.  That was, until I talked to my friend who is on a drug similiar to Tamoxifen.  She was complaining about her severely dry skin and blaming her cancer drug.  Hmmm......googled and yes - that is a major symptom.  I thought I had a flesh eating disease.  The skin on my thighs actually feels like it is splitting apart and on fire. The palms of my hands are peeling right off.  So is the skin on parts of my face.  Cool.  This is fun. So I am not unscathed by the Tamoxifen.    I have 3 months down and 117 more months to go on this drug.  I will probably look like a mummy by then.

A sadder turn of events is that another co-worker has breast cancer.  Unbelievable for such a small school.  Makes you wonder what the heck is going on.  I can’t get her off my mind.  It’s a long and difficult journey.  She was asking questions like how long I had my tubes in after the surgery and when I could drive again.  I didn’t have the answers.  I have completely blocked these things out of my mind.  I’ve blocked much of the past year.  I’m thankful that I kept this blog.  I took a little trip back and reread.  Wow.

Quiet mind - finally!

I have struggled over a year with my mind.  I cannot explain it any other way than to say it has felt the way I envision ADHD mixed with anxiety would feel like.  My brain was buzzing all the time.  For real - it felt like it was buzzing.  I had trouble remembering things, socializing, listening, planning, communicating, staying calm, understanding things.  Chemo definitely made it all a thousand times worse.  It has been only recently that I finally feel my brain calming down.  My thinking is more collected and not jumping all over the place.  I still have a few spots that are difficult for me.  The two big ones are 1) recalling words (super frustrating!) and 2) remembering people’s names (super embarassing!).  It even happens with people I see all the time.  I will be able to recall a first or last name, but not both.  I will also see someone that I know I should know, but I cannot place them!  But, for the most part, my mind has recovered.  And it is QUIET.  And it is such a relief.

I’ve been working on my brain - listening to audio books in the car and reading a little every night.  It is helping.

I’m starting to think a lot about my upcoming surgery in February.  I want to get put back together, but i just don’t want to go through the recovery again.  I still do not know exactly what I want done.  I have decisions to make.  I have my pre-op appointment in January.  I will iron things out at that appointment and hopefully get my expectations set.

But, for now.....it has been fun preparing for the holidays.  I did the bare minimum last year.  I don’t remember much of it.  It’s nice being back on track. :)

The Secret Suckiness of Life After Breast Cancer

I did not write the blog below, but I could have.  She talks about things that are happening to me, and it's sort of a relief to hear another person say them.  Going to bed early just to have a chance at functioning the next day.....not tolerating alcohol.....eyelashes and eyebrows that haven't grown back the way they used to be.....numb breast.......weird hair on my chin and cheeks......joint pain......irritability......the list goes on and on, but I am not alone.  I have read and reread this woman's blog entry!

Judith Basya's blog:

Now that I’m two years past chemo and have a full-ish head of hair, people no longer tilt their heads and make meaningful eye contact when they ask how I’m doing. They pose the question casually, as they would to anyone else, and we exchange the usual pleasantries. Then, maybe, they lower their voice or touch my arm and ask how I’m really doing.

How much truth can I slip in before they change the subject? Should I try to be funny? I usually go with the gratitude-but-challenges script they expect, then see if they’ll grant me the space to get real. “I’m happy to be alive, of course, but my current life compared to my old one sucks [note frown]. I mean, I’m still dealing with a lot of side effects [note eyes wandering] — but don’t worry, nothing I can’t solve by smiling a lot!”

Complaining is always awkward, but complaining about cancer gets you more side-eye than a priest at a pro-choice rally. People prefer to hear about drama they can help with, like decoding texts from a toxic ex. Scary diseases should be avoided in polite conversation, because, well, we’d all like to avoid them, but this goes doubly if you’re a cancer survivor: You’ve survived, after all.

Nevertheless, I persist.

“So, I take this one pill called tamoxifen to prevent another recurrence, and a dozen more pills to deal with the side effects of the tamoxifen, but now the sleeping pill isn’t working as well and I’ve tried all the other options, so…”

“Better tired than dead,” they’ll tell me. They’re right, and indeed I am grateful to still be here. Yet my life as it was, the one I envisioned and built and paid my dues for, is gone and not coming back. In my new life I have a fraction of my old energy, chronic nausea, no libido, uncontrollable irritability taking its toll on my husband and kids, osteoporosis limiting my outdoor activities, a beard on my face, and a brain so foggy... I forgot what I was going to say.

Oh, yeah: that I’m grieving. Grieving now, almost three years later, because I had to get through chemo and targeted therapy and multiple surgeries first, then I spent two years experimenting with how best to manage on this brutal drug, until I finally realized that any managing I did — of the meds as well as the scars and trauma of cancer itself — wasn’t going to bring me back to my old life. I’d just be managing this one for the duration. Which seems like the kind of thing you ought be able to vent about.

In my old life, I was a full-time writer. Now, even with medication to help me focus, I’m lucky to eek out an article a week. I’ve taken up photography to fill in the gaps, and my husband has a stable job keeping us afloat; so I’m not whining. But after years of calling myself a journalist, who am I now? With all these aches and pains and insomnia, can I reinvent myself before it’s time to retire? And why is my situation only to be discussed in therapy, while other people’s job woes are acceptable dinner-table fodder?

Because to survive breast cancer, the marketing gods will have us believe, is to thrive! Ever visit a breast-cancer website? More smiles than a dentist’s office. The women in colorful head wraps are smiling, their doctors are smiling, a young woman so beautiful she makes you want to go bald is smiling. And the survivors with their exciting new short haircuts, they grin, sun-washed faces like they've just returned from a wellness resort. There’s no fear of recurrence in their eyes, no hint of any long-term issues or complications. This airbrushed reality is held over the rest of us, setting us up to sound bitter or lazy if we aren’t 100% happy as soon as we’ve “beat” the disease (and what does that mean, exactly?).

For me, it can mean the world is no longer looking at me, with my asymmetrical cleavage and chin hair and refusal to pretend that post-cancer life is all pink and pretty. It means I lost friends who couldn’t take the heat, and I struggle to find time for the good ones because I absolutely must go to bed early, even just to toss and turn, if I want any hope of functioning the next day.

Since I found my first lump in 2010 (there were a total of three between then and my bilateral mastectomy in 2015), I have been lucky — a word I utterly hate in this context — to live near top-notch cancer hospitals and to nab appointments with pioneers in the field (calling moments after somebody else cancelled type of luck, hence my willingness to call it such). I’ve had no serious complications, no infections, no procedures that didn’t yield the expected results, no allergic reactions, no fertility concerns (I already had kids), and none of the potential side effects at which you can’t throw yet another drug. My point being that even with such a fortuitous run-in with it, breast cancer savages much more than breasts.

I bear multiple scars in every quadrant of my body. My brain is soup (except when a new ache or itch might be cancer again, then I’m lucid as hell). My liver protests the slightest sip of a cocktail. I can’t Rollerblade with my children because I fear shattering my bones if I fall. And this is just the wreckage from surgery and chemo. Hormone therapy, which according to the latest research I should endure for 10 years, piles on the insults: stiffening my joints, cramping my muscles, wrinkling my skin, making sex painful (if I’m even in the mood) (and by the way my fake boobs are numb), and growing hair on my cheeks and chin. Meanwhile, hair's still missing from my brows and lashes.

My biggest challenge, though, is staying sane under the pressure to keep all this a secret.. Without estrogen and progesterone, I’m a miserable, volatile beast. One anti-depressant — out of six that I’ve tried — takes the edge off, barely (and causes a tertiary set of problems, but I give up). I don’t recognize myself in the mirror, especially if I’m naked, but I don’t feel like myself anymore to begin with, so I guess that works. Or would work, if I lived in my own private universe. In the real world it takes a toll on everybody around me. My husband has lost the woman he married. My daughters are relearning how to get what they want from me, which sounds cute but is actually heartbreaking.

A few nights ago my car was broken into — no big deal, but I teared up when I realized my favorite sunglasses were gone: an oversized pair that I relied on through chemo to camouflage my bald eyes and forehead.

“Maybe it’s a sign that you’re done with cancer,” my teenager said, giving me a sweet hug. I didn’t contradict her. Sometimes, the hardest part of life after cancer is moments like this, when I wish I could keep the suckiness a secret from people I love.

Judith Basya

October 16, 2017

Dairy and Sugar and Carbs, OH MY!

I am still struggling from severe joint pain.  I have been going to the chiropractor and acupuncturist regularly.  No relief yet.  I have had so many doctors and friends tell me to look at my diet.  Cut out sugars.  Cut out dairy.  The problem is that everyone has something different to say.  I have no idea what to do.  I believe the theory is to get rid of foods that cause inflammation.  The only issue is that I do not have inflammation in my joints.  I just have unexplained pain.  And a lot of it.  I give up on the food thing.  I am just going to eat healthy most of the time.

In the meantime, I have started yoga.  I went to restorative yoga the first time.  That was basically an hour and 15 minutes of napping in 5 different positions.  It was nice, but I do not think that I will benefit from it.  The second time I went to a foundations yoga (non-heated, non flow).  That was good.  It was hard for me to move and get into and out of positions.  I hung with it and at the end when you lay there and relax and they say nice things to you, I just started crying.  What the hell is it with me and  yoga and crying?!!  I do think yoga shows me that my body can't do the simple things that I used to be able to do.  It is frustrating and sad.  I know I will eventually get back to being able to move better. I need to stick with the yoga and stretch and move.

Side note:  I once read an article that said that when you get to the point of not being able to get yourself off the ground with your own power, you'll be dead in three months.  Haha.  A bit drastic.  But I get the point.  I am not easily able to get myself off the ground. I hate that.

My friend's twin boys ran  and had my name on their tags for "This Run is Personal"!  I love this!!!!!  :) 

All decked out in a wig and false eyelashes for a night at Del Lago.  I felt pretty for the first time in forever!  :)

Dave

Oh boy, where do I even start on this post?  Back when I found the lump in my breast, I did what any smart woman would do.......I denied it and I gave it time to go away......yeah, no, that’s not what smart women do.  But that is what I did because I convinced myself that it was just a fibroid tumor.  A week after finding it, I mentioned it all to Dave.  I made him feel it.  I remember his exact words, “Just for fun, why don’t you get that checked out at the doctor’s?”  I called the next day.  From the minute that I got my diagnosis of breast cancer, Dave sprang into action.  He googled, and read, and talked to people, and developed a strategy for me.  All the while, I was a deer in headlights.  No, I was more of an ostrich with my head in the sand.  I was not ready to tackle this type of problem.  Our lives were too busy.  I had two 4 year olds.  I had just dropped my 18 year old off at his first year of college.  The holidays were coming.  Thank God for Dave.  He took control and made phone call after phone call to schedule consultations with doctors and second opinions and third opinions and fourth, fifth, and sixth opinions.  And just to make sure, he called and scheduled us to spend an entire day at Cleveland Clinic seeing six more doctors!  During all of these appointments, my brain was in complete shutdown.  I was not processing all that I was hearing.  It was too much to take in.  It was scary as hell.  Dave listened and asked the questions and remembered everything.  He UNDERSTOOD everything.  To this day, I can not tell you what kind of cancer I have, but I know Dave can.  We would go to these doctor appointments, pay the fees, listen, and then go out to breakfast or lunch together to talk.  I remember the first conversations when he told me that it didn’t matter to him if I even had breasts.  But, it mattered to me.  I’m not going to lie, I was angry.  I was angry about going to all these second opinions.  I just wanted this over and this was dragging it out.  I took my anger out on him.  The next thing he did was hook me up with a counselor and drove me to the appointments and waited for me.  I didn’t want to see a counselor, but he knew I needed to.   He struggled to juggle his job along with my physical and mental health.  Then, finally, came my surgery.  I honestly cannot remember how long my surgery was - maybe 8 hours?  He was there the whole time and even updated my blog for me. Then I spent 4 days in the hospital, in misery.  And every minute of it, he was there.   Every time I woke up.  He slept in a chair next to my hospital bed every night. He checked in on the kids, the house, our cat.  When I was released to go home, he learned how to measure and empty my four drains - when I could not physically or emotionally deal with them.  A disgusting job.  He got my medications in order and kept me on a schedule for everything.  I was still an unhappy camper.  I was still angry about everything to do with my situation.  I could not see the forest for the trees at that point.  He stopped traveling for the 6 (or was it 8?) weeks that I was home.  He took me to all my appointments.  Then came chemo.  Boy, if I thought I was angry and unhappy before......that was nothing compared to the six months of chemo days.  I took out all my frustrations on him.  And he never backed down.  Not even when I was at my lowest points.  When I was ugly inside and out.  He was there.  Quietly there.  Always. He rubbed my feet.  He loved and took care of me when I wasn’t a bit lovable or a bit thankful for his help.  And when I was too sick to eat or stand or care....when I couldn’t sleep through the night.......when I was in pain......he was there. I  wouldn’t have made it without him.

A year

A year ago my brother and I had spent the summer fixing up my ancient hip-roof barn in anticipation of having a huge halloween dance party. We strung the entire barn with lights, built a bar, a food station, a fire place, and a dance floor. I found the lumps in my breast early that October.  I gave them a couple of weeks to go away on their own and then I went in for all the tests and biopsies.  I had the biopsy done on a Friday and we had that party on a Saturday.  My breast was still bleeding from the biopsies and I was terrified that the results would come back cancerous on Monday, but we had that party and it was awesome!  Fast forward to this October.  Even though we moved, our old house hadn’t sold, so we went back for one more halloween barn party.  If I could have seen one year into the future last year - that I wouldn’t have hair, my body disfigured, and that I had a port in my chest - it would have been the worst thing I could ever think of. But, looking BACK at the year with these things is a different perspective - and I have come so far and been through so much.  And we had this halloween barn party again.....one year later......and it was awesome!! :)

Dave and me last year

Will & James & me

My barn! <3

Josh & me this year

So, today was mammogram day.  I have been dreading this. When I got there, my hands were actually trembling.  I was bracing myself for bad news, even though I really have no reason to.  But in all fairness, it is crazy that I had so many unexplained tumors in my breast last year.  So, I stressed.  As I was signing in at the front desk, I heard someone call my name behind me.  It was my friend who I mentioned in a previous post!  We were actually scheduled for our post cancer diagnostic mammograms on the same day and same time!!!!!!!!!  I was never so happy to see a friendly face!  The mammogram was scheduled first.  I did not want to have that much pressure placed on my reconstructed breast!!  She assured me that it would be fine.  So, I had the images taken on both breasts.  Since there is absolutely no feeling or sensation in my left breast, there was no discomfort with the mammogram on that side.  I just closed my eyes tight.  On my right side, my chemo port is in the breast tissue, so it has to be mammogrammed, as well. UGH!  Again, I closed my eyes and held my breath.  It was over in no time.  She sent the images to the doctor and sent me back to the waiting room in my purple gown.  My friend was there and we probably chatted away a whole hour together……..so thankful for that distraction while we both awaited our results. It's so funny that I wanted someone with me that day and I got my wish!!! :)  I finally got called back to meet with the doctor.  She did a manual exam and then an ultrasound of both breasts and lymph nodes.  Everything looked GREAT!  I got a clean bill of health!  She does recommend that I have an MRI just to be sure.  I will call about that tomorrow.  My friend got good news too! :)

Sweet Elizabeth Wende purple gowns

Spontaneous therapy session

I have a friend who also found out she had breast cancer - literally within days of me finding out about my own.  Her journey took her through a lumpectomy and radiation. We have compared stories and shared any gems of wisdom we have found along the way.  I had a chance to connect up with her today.  We are both due for our mammograms again.  And once again, we will be going for them only a week apart.  We are both terrified, to put it mildly.  Neither of us can face another year like we’ve just come through.  She had an appointment with her oncologist and she said her blood pressure was sky high and she was nearly in tears just being there.  She compared it to having PTSD.  I would have to agree. My heart rate is always above the healthy level when I’m at any of my appointments dealing with my cancer.  There is always this underlying thought that the rug is going to get pulled out from under me again.  It is nice to be able to commiserate with someone who is having all the same feelings as me.  As the holidays approach, I cannot remember much of anything about them last year.  It’s like I blacked out of a year of my life.  I look at pictures that I don’t remember taking.  I cannot remember the family parties.  I cannot remember the gifts that I gave or received.  It is shocking to me that along with suppressing all my fears about my upcoming mastectomy that I also supressed all my memories from that time period!  The brain is amazing.  We also talked about putting on a smiling and brave face for our families, friends, and workplace. When you do that without taking time to be honest with yourself, it is exhausting.  I became a fake shell of a person.  That is the only way I can describe it.  It is only now that I am desperately trying to claw my way back to the person that I was before.  It’s going to be a long road and I foresee the surgery in February setting me back a little.   Right now, I’m just consumed with distracting myself until I get news of a clean mammogram.....

Acupuncture

I had my appointment with Pivot Acupuncture today.  They are a husband/wife who do acupuncture, acupressure, and physical therapy.  They have offices in Bergen and the city.  I went to them after the twin pregnancy because I had joint pain in my hands and feet back them.  I stuck with it for a year and it helped a ton.

So, I reconnected today.  The first thing an acupuncturist does is looks at your tongue and takes your pulse.  They can tell a lot by your tongue.  She told me that my "chi" is depleted.  Chi is your life energy flow, if you are into that sort of thing.  Since our health insurance covers acupuncture 100% I will assume it has been proven to work.  Also, if you believe in something, I do think it works for you.  I asked what would deplete my chi.  Duh, it's chemo!  Chinese herbs can increase it.  Acupuncure opens up your chi canals throughout your body, letting your life energy flow more freely.  This can cure or prevent illness.  I had the needles placed, which by the way, doesn't hurt at all when they pierce your skin.  What does hurt is that they kind of twist the needles in further until it hits your chi canal.  For me, when it hits this spot, it feels like a jolt of electricity!  Quite unpleasant.  The needles stay in and you get to lie in a quiet, dark room with meditation music playing.  Usually there is a heat lamp on you to keep you comfortable....but I generally don't want it because I'm typically warm.  I am going to go back 4 weeks in a row and see what progress it brings.  Then, you generally go on a maintenance schedule.

She asked me about my diet.  She mentioned eliminating sugar and fast burning carbs.  I pretended I didn't hear that.  ;)

Sorry if the "chi" stuff makes me sound like a fruit loop.  I'm willing to do anything to get out of this pain.  I'd like to do it without drugs and side effects......I've had enough side effects lately to last a lifetime. I'll go back to crunching on my granola now.  :D

Yoga breathing and yoga crying

I paid $30 to attend a cancer survivorship talk, yoga, and meditation at Breathe Yoga tonight.  In my head, the room would be full of people like me, in headscarves - wanting to use Yoga to reclaim their health.  In reality, there was only one other person with a headscarf out of a room of 30+ people.  The yoga room was at least a million degrees and my hot flashes and I almost bailed upon hitting that wall of heat......but we pressed on.  Dr. Karen M. Mustian spoke for almost an hour.  She has done studies, published in the Journal of Clinical Oncology that show proof that yoga helps cancer patients.  Her studies used people who had gone through cancer surgery, chemo, and/or radiation and were done with treatment (except for oral chemo like Tamoxifen).  The three symptoms she was looking to reduce were:  exhaustion, chemo brain (specifically ability to focus and remember), and all over muscle/joint pain.  ME!!!  There were thousands of people in the study, with a group receiving a placebo - which in this case was an oncologist prescribing meds, etc. to try to solve those very same issues.  ME!!!  In the study, the people receiving yoga had to go thtough a specific yoga sequence (breathing, poses, mindfulness) two times a week for 4 weeks.  The time period was kept short because she felt that if people weren't getting relief from these symptoms in that amount of time, they would go to their doctor for medication.  The study worked.  All three of those types of symptoms were reduced or gone with yoga!

After her talk, we were lead through restorative yoga and meditation.  It is sad how difficult it has become for me to move my body.  So much pain. For the first time in forever, I focused on my body, my breathing, and the teacher talking to us.  Nothing else was in my brain.  And I cried silently through the whole thing.  I could feel the tears streaking down my face and neck. I don't even know what I was crying about - the best I can think is that I finally felt understood.  She spoke of women with breast cancer all just living life and feeling great - and bam - you find out you have cancer.  Then, you have disfiguring surgery and chemo or radiation that makes you sick.  Your body gets put through a lot of stress and works against you.  It is a hard place to climb out of.  I listened and I cried.   Thankfully they had the lighting very low!  I left feeling taller and lighter.

I need to fit yoga into my life.  And massage, acupuncture (got an appointment next wednesday!), meditation, mindfulness, and chiropractic care.  Don't worry, I'm not going to run off by myself, traveling the world, writing "Eat, Pray, Love Part II".  But, I'm starting to feel like I could!! :D

Surgery scheduled for February

First, let me back up to yesterday.  My pain in my joints (especially feet, hands, knees) has become almost unbearable.  I am now in pain throughout the day and even when I am not on my feet.  It still gets super severe in the evenings, lasting well into the morning.  For my birthday, Dave got me a 60 minute foot massage. I was super excited.  But, this was a very painful massage!  I have had therapeutic massages before and ouch!  However, I was pain-free for about 3 hours afterwards!!!  So, my thinking is that I should go for a foot massage every three hours for the rest of my life! :) I am, in all seriousness, going to try to do this regularly for a bit.  Massage combined with meditation, acupuncture, chiropractic, and hopefully yoga - that is my recipe for getting my life back.  There is a cancer survivor yoga and meditation class at Breathe Yoga on Wednesday, and I am going.  I hope that I can try to work in the yoga/meditation classes more regularly after that.  I also have some leads on acupuncturists....just have to find the time to call and go in!

I completely ditched the Gabapentin drugs.  They didn't help at all.  Tamoxifen has been fine so far.

Today, I visited Dr. Vega for a consult on my next surgery, which is cosmetic.  He is going to do a laundry list of stuff:  remove my chemo port, fat graft from my abdomen to my right breast to make it the same size as the reconstructed breast, liposuction my stomach/sides to smooth things out, and give me a nipple on the left side.  I scheduled it for February 13th.  I have to be back to my pre-chemo weight prior to surgery.  I insisted that I was only 5-6 lbs away from that - when in reality I may be 8-9 lbs away.  Shhhh.  I have to decide how I want the nipple done.  He can do "nipple sharing", which is cutting the end off the one remaining nipple and using it for the left side.  He can't promise that I won't lose sensation, but he says it will be the best "look".  I have to google that some more.  It kind of freaks me out.  Ok, it really freaks me out.   I will go back to his office in January for a pre-surgery appointment and confirmation on the February 13th surgery date.

Pain level 8 (and I'm conservative!)

I saw the oncologist yesterday.  They hoped my joint pain would have resolved itself by now.  It hasn't, and I would venture to say it is worse.  It sounds like I am being dramatic saying I cannot walk, grasp things, and get up from sitting - but that is the truth. I am slowly becoming crippled.  I am still functioning during the day, but I would say my pain level is a 3-4 all day long.  By 4pm, I start the decline until I am in full pain by 8pm.  The oncologist says that joint pain is common during the Taxol chemo, but it only happens during the treatment - not after it is finished. They cannot explain it.  The only other thing they can think of is to send me to a neurologist for a nerve conduction test.  I don't know what that entails, but it doesn't sound like I would like it!  They need me to start the Tamoxofen - like NOW - so we can't really drag this out to resolve this pain right now.  They offered me a drug (Gabapentin) that might help my pain IF it is nerve-related.  I am 99% sure this is not nerve related pain. The drug also works to reduce hot flashes.  My hot flashes have gotten so bad that my glasses actually fog up!  Soon, someone will find a pile of my ashes with my shoes - because I will have spontaneously combusted! Anyway, back to this drug - it used to be a seizure medication, but doesn't work good for that....but they determined that it does help nerve pain and hot flashes.  She cautioned that it will make me very sleepy and it will also lower my blood pressure - so when I am laying down, I have to sit up slowly so I don't pass out.  Sounds like an evil drug, but I am in so much pain, I am willing to try it.

That was, until I saw my chiropractor today.  I ran it by her and she said "If it is Gabapentin, I would NOT take that.  At least do some research before you do.  It is addictive, messes with your head, and can cause anxiety."  EEEeek!  She recommends that I continue to resolve my pain holistically - I am thinking chiro, acupuncture, diet, stretching, sleeping - and use medicinal marijuana for the pain.  It is natural and has no side effects.  So, I am back to looking into that.  Is is covered?  How does it work?  Does my doctor have her license to prescribe it?

Oh, one more thing about the oncologist.  I always have to tell them if I have any rashes or unusual symtoms.  I started feeling a ton of tiny bumps all over my arms.  It feels like a rash, but they aren't red or itchy.  I made her feel them.  She humored me, but said it was just my hair follicles starting to produce arm hairs again. Ha!  My eyelashes have all sprouted.  My eyebrows have started growing in, but just mostly just the inside parts, so it looks like I have a surprised expression all the time!  My hair is about 1 cm long all over.  Slow and steady....

I'm laying in bed now.  I just took a Gabapentin pill.  I might as well see if it does anything.  I'll give it a week.  I'm nervous - but I'm also desperate.

Fight or Flight

I went to the chiropractor today.  It's been a full year since I've been there.....'cause I've kinda been busy this past year.  I want to do everything I can to try to get rid of this joint pain.  I am also in the process of finding an accupuncuturist who has weekend hours.

My chiropractor, Dr. Amy, had some really good insights for me.  She talked about my sympathetic and parasympathetic systems.  Your sympathetic system is your "fight or flight" response system.  She says that with my surgery and chemo, it put my body into fight or flight.  Your body should only be in the this response for seconds at a time.....in emergencies.  Chemo attacks your body so severely that it puts you in it for unhealthy amounts of time.  When your body is in fight or flight - it goes into emergency mode and doesn't do the normal things well, such as digest your food, sleep, think, etc.  I had been pushing through chemo, trying to keep a smile on my face and trying to continue with life as is.  I didn't want to use the "cancer card" or "chemo card" and bail on things.   Turns out that it is impossible.  I have been struggling with the last chemo session pretty badly since May/June.  In the middle of that struggle, I was finishing up the school year, packing the house, and moving.  I was making a lot of mistakes with my thinking.  I was quick to react to things, without thinking.  My responses to things were highly impulsive.  I was argumentive and defensive. After today's visit and conversation, this is all making sense.  Even now, I struggle deeply in social situations.  There is definitely a bit (a lot) of insecurity because of my looks right now. But, beyond that, I get super anxious in social situations with groups of people. I have a harder time following the conversations and the joking.  I constantly feel like I'm missing something.  I blurt things out impulsively, because I feel I don't have time to think (and screen) things. It's an overwhelming feeling.  I was trying to explain it to a friend recently and I couldn't express it correctly.  Now, thinking in terms of fight or flight - it all makes sense.  It also makes sense that my heart rate has been going off the charts for the last 3 months.

I got a nice adjustment today, but more importantly, I got some much-needed advice on how to gain my SELF back.  She recommends 1) sleep - good and long sleep (like 8-11 hours a night) to help repair my damage. 2) Meditation - I am going to start some "yoga nigra" tonight and try to incorporate some mindful breathing into my day.  3) Joyful movement - not exercise (cardio is fight or flight), but moving my body with things that make me happy, like taking walks, etc.  She recommended the book "Goddesses Never Age" by Christian Northrop, MD.  I'm getting it at the library this weekend.   I will also go back for adjustments every week or two for a bit.

I finally feel like I have a good start on my path to wellness.

Rheumatologist

I saw the rheumatologist on Friday afternoon.  And just like I thought, he can see no reason for my joint pain.  They had run a bunch of blood tests to check for lupus, thyroid problems, inflammation, etc.  Everything was in the normal limits except my vitamin D was low - like all New Yorkers!  I do want to do some research on low vitamin D and joint pain.  My brother mentioned that there may be a correlation.

Anyway, the doctor asked a lot of questions and looked things up on the internet while I was there.  Because he couldn't find a reason for my pain, he wondered if the chemo drugs could cause joint pain.  He looked up Taxol and it says that 60% of people who took Taxol have joint pain.  I asked him if it was permanent and he didn't have an answer.  He recommends I go back to my oncologist and ask her. I go back to her in 2 weeks.

I asked about doing accupuncture for the pain.  After I had the boys, I had joint pain in my hands and feet.  I did accupuncture for about a year and felt that it helped.  Whether it helped for real or just helped me mentally....either way, it helped!  He said accupuncture cannot hurt.  I probably need to go that route.  I do not see this going away on it's own.  His recommendation is to take Advil or Aleve in max doses before bed.  I tried Advil last night and had a little bit of relief, but not through the whole night.  I took 2 Aleve tonight and am curious to see if that helps.

Plugging on......

Still postponing Tamoxofen

I met with the breast surgeon on Monday.  Uneventful.  Two seconds, a quick exam, and I handed over the co-pay.  I have to see her again next year.  I asked about my looming mammogram that is always due in November.  It was last October that I found my lumps and thus began this damn journey.  She said that I have to have a mammogram on both breasts.  This terrifies me for two reasons.  1). What if all the stitches in my reconstructed breast rip apart in that machine?  2). What if they find a lump in my right breast?  I honestly don't know what scares me more.  I shared my concern about my reconstructed breast ripping apart at the seams.  So, she said I could skip that side this time, if the mammography place agrees.  She said I will definitely need a mammogram and sonogram on the right side.

I called Elizabeth Wende Mammography and scheduled the appointment.  They looked at my chart and said, "Plan on being here 2-3 hours."  Sigh.  I can't remember if they have wine in the waiting room.  I need someone to hold my hand and a wine bottle seems like the perfect companion.

Yesterday, I had an appointment with the oncologist.  I cannot say enough good things about Interlakes Oncology in Brockport.  It was like a reunion with long lost friends!   I do love them all.  I told the doctor about my joint pain.  At night, I cannot grasp the blankets to pull them over me, I cannot turn over in bed because my elbows and hands are in so much pain, and during the day at school, if I get on the ground to work with kids, I struggle to get back on my feet.  What the hell!!?  It's like I'm 109 years old.  She ordered 5 more vials of blood to be taken, so thankfully I had put lidocaine on my port prior to going.  She also wants me to see a rheumotologist ASAP.  I was supposed to start Tamoxofen a month ago - but had to postpone with the shingles.  Now, she does not want to start it due to the body pain because Tamoxofen can also cause body pain. She looked at my nails (which are bruised and only connected by a tiny bit) and said "Ah, yes, Taxol nails.  They will grow out."  Cool.

Today the rheumotologist called me and is able to get me in tomorrow afternoon.  I know they won't find anything.  I know I'm going to be extremely frustrated.  Again.

I do love being back at school without a million looming absences.  It is a nice distraction and feels good to exercise my brain.  I am struggling with name recall and following group conversations - especially if they are social in nature.  It's weird.  I am working with 5th graders this year and have decided not to put myself through the agony of wearing a wig.  I spoke to all the classes on the first day of school and told them my story in a 5th grade fashion.  It was an absolute relief to put it out there.  The kids have been so interested in things and ask questions.  It's really great that it is out in the open and not a taboo subject.

My hair is starting to regrow.  Gray. Lovely. It's soft and fine like baby hair.  I'll get it dyed as soon as I can.  It's also straight so far (it's only about a centimeter long), which is weird because it used to be curly/wavy.  My eyelashes have also started sprouting.  Very exciting.  No eyebrows yet.  My white blood cell count it back to normal (4.8) so I would guess I could get them tattooed on, but I forgot to ask.  I have to go back to the oncologist in 2 weeks with hopes that my joint pain is figured out and  Tamoxofen can start.  Fingers crossed......even though I really don't want to be on this drug......but I figure I NEED to be to keep my life expectancy up to 90%.  I don't want to ruin their data! Ha! :)

Severe joint pain

Since August 26th, I've been suffering from severe joint pain.  I have had joint pain before - for the year after the boys were born - but it was only in my hands and feet. After a year or accupuncture, the pain subsided.  This pain is in every single joint in my body: feet, hands, elbows, knees, pelvis, spine.  It is ridiculously painful and makes me feel and look like I'm 140 years old when I try to move.  I've been trying to figure out why it came on all of a sudden.  The day that it started was also the first day that I had stopped my Shingles medication. I also wonder if I've had joint pain all along, but the chemo steroids had masked it.  I don't know, but I do know that the pain is so severe that Dave made me call the emergency number at the oncologist's office on a Sunday.  They called back and advised me to have my blood labs done.  I just got that done today.....so maybe I'll have some answers on Monday.....but, I can't imagine it's going to be anything easy to figure out or solve.

A big NO on the dentist

Who knew?  I had my regular 6 month dental cleaning scheduled for yesterday.  I got up in the chair, wondering if the chemo would have caused cavities and curious why my teeth are so sensitive to hot foods now.  The hygienist asked if I had apporoval from my oncologist to have a dental cleaning.  Huh?  I hadn't ever thought about that.  They said they would not proceed without permission from the oncologist.  They said that cleanings can dislodge bacteria that can travel right to your heart.....or something like that.  I made a phone call to the oncologist while sitting in the dental chair.  Yep, not allowed to have a dental cleaning for 2-3 months post chemo.  Sigh.  Rescheduled for November.

But wait, there's MORE!

Today was a scheduled visit with the oncologist - a post chemo checkup to see if my white blood cells recovered on their own.  I was there for a port blood draw and visit with the oncologist.  Kelly, my nurse, was taking my vitals and asking me the same questions that she always asks:  What is your level of pain?  What is your level of tiredness?  Have you had any fever or chills?  Do you have any rashes?

Welllll.......yes, actually, I do have a rash.  I pull up my shirt to show her this rash that started on my side.  She stood up immediately and said, "Uh, that looks like shingles!  Let me go get the doctor."  The doctor came back and sure enough, shingles.  I developed a series of 11 little bumps in a small area on the left side of my torso on Saturday.  I had no idea what it was.  It wasn't bothering me too much, although it itches a little and my skin hurts where it is and where it has spread to my back and stomach.  I was immediately put into quarantine.  The were using masks when they were in my little room.  Since shingles is contagious (who knew?!) I should not be around unvaccinated children, babies, elderly, chemo patients, and anyone with a compromised immune system.

Speaking of compromised immune systems - my white blood cell count is just 2.2 (normal range is 4-11), so I am kind of low for being out of chemo for 2 weeks.  It could be because of the shingles virus.  They prescribed an antibiotic that I have to take almost every 2-3 hours.  I will be considered contagious until my rash is crusty.  Almost there.  Also, every muscle in my body feels like it hurts in the last few days and shingles will cause this pain.  Mystery solved.

My red blood cell count is 35, which keeps going up slowly and means that I'm not anemic anymore.

Another blood test was to see if I am in menopause yet.  They like to get a baseline before starting Tamoxifen.  I'm been in a chemo-induced menopause for the past 6 months.  When I am in for-sure menopause, they will have to change Tamoxofen to another drug that is not an estrogen inhibitor.  There is a bunch of science behind all that but I will spare you.

Crazy - shingles - after a hellish 6 months of chemo.  I asked if there is a oncology Bingo board, because I think I must have  won by now!

Other than that, most of my side effects have hung on.  I still can't taste well, I'm tired, and my foot neuropathy is the same.  The only change so far is that my daily nose bleeds have almost stopped.  Yay.

Heading back to oncologist in 4 weeks for more blood tests and the start of the Tamoxifen.  I can't start it until my white blood cell count is normal.  She says that the side effects will be hot flashes and weight gain.  Sweet combo.  Can't wait.

Fresh new hell

You've already heard me complain about my nails - the ridges, the brittleness, the discoloration, and growing in weird shapes......but now there is fun, new stuff with my nails.

A few days ago, I thought I had banged my fingernail on something because it really hurt.  By yesterday, all my fingernails hurt incredibly bad and now many of them are turning dark purple.  So, of course, I Google.  Turns out that the weeks AFTER chemo with Taxol, your nails shit the bed.

So, every time I touch my nails - which is every minute of every damn day! - they hurt like hell.  Just typing hurts.....and getting dressed, and making a cup of coffee, and brushing my teeth.  Sweet.   And according to Google, I can just hang out and wait for them all to fall off.  Why is this more upsetting than my hair coming out?  No idea.  Oh, and Google also says it will be months - MONTHS! - until my hair follicles decide my body is not a hostile environment and graces me with some weird, gray hairs on my head.  It says not to expect your hair to return to it's former glory.....and since my former hair had no glory, I can only imagine what it's going to look like.

Chemo - the gift that keeps on giving!

I went for an routine check-up at my regular doctor's the other day.  My heart rate is 113.  So, now I have to go back in 6 months to check if I'm still alive.  Hydrating!  That is the answer to everything on this journey.

Today is my usual chemo day.  I miss my nurse and Doritos.  :)

LAST CHEMO #16!!!!!!!!!!!!!!!!!!!!!!!

LAST ONE!!!!!!  So relieved!

And I'm breaking out like a teenager....

A new side effect - Red, bumpy skin all over

Kelly in her haz-mat suit getting my Taxol ready

My foot massage :)

I have kept this with me the whole time - from a school friend who's mother battled cancer

I got to RING THE BELL!!!!  And a gift of DORITOS and a certificate!!

Chemo #15

This port has saved me a lot of grief and pain.

Blood labs are drawn through the port too.

Oh boy, where do I start on this week?

We moved from Bergen to Brighton this weekend.   I had been slowly packing throughout the month, but none of the kitchen, books, cabinets, drawers, etc. had been packed.  I have been so tired.  I saved it all for Thursday and Friday.  I got some done on Thursday, but not nearly enough.  On Friday, my last day to pack, Dave went to Rochester to work all day.  Evan was working too.  I had the boys. It was 85 degrees.  We do not have air-conditioning.  I was beat, but I could not stop packing because the moving crew was arriving Saturday at 8am.  Six guys and 2 trucks - I knew it would move pretty fast.  It was physically a bit too much for me.  I would try to sit for 10 minutes to cool down every couple of hours.  My heart was definitely racing and I was overheating.  At one point I texted Dave and whined about it.  Then I left my phone on the couch and went back to packing.  Apparently he freaked out - trying to call me and couldn't reach me.  My Dad came zipping into the driveway and came into the house asking if I was okay. Dave had called a damn ambulance when he couldn't reach me!!!  O M G.  I called him and forced him to cancel it.  My Dad and Virginia stayed and helped me pack all the books. That was a big help.  They also stayed and visited for an hour, which forced me to sit still.  That was a big help, as well.

Saturday was a long and tough day that started at 8am and ended after 9pm.  Two trucks and they still have to send another truck back on Thursday because they underestimated the job.  Those guys worked their asses off and it was hot!  I am in total love with the new house and neighborhood.  Unpacking is a bit easier than packing and it is moving along nicely.  The air-conditioning is a blessing for me!

During the week, I got my 2 Neupogen shots.  I was having a lot more numbness in my left foot, which has spread to the ball of my foot and through all my toes.  It is much worse at night and early in the morning.  I still haven't had any falls or trips, but I am unable to walk barefoot because I cannot sense the floor very good.  I had blood labs done early this morning and my ANC was at a 5, normal range.  The oncologist is leery about my numbness.  She does not want to go too far and cause permanent neuropathy.  She says if I can get through 90% of the chemos, I should be good.  So, with today's chemo, I've completed 90% - 4/4 of the AC and 11/12 of the Taxol.  She told me if the numbness gets any worse this week, that today was my LAST CHEMO.  If things stay okay, I'll complete number 12 of the Taxol and that will be my last one.  Things went well today.  The Benadryl really kicked in.  I fell asleep during treatment, in the car, and again when we got home. The steroids will probably keep me up throughout the night, but I'm hoping for the best.

My heart rate was a "low" 97 today.  I thought it would be higher with the move and because Dave and I have a different opinion on how to do damn near everything.  I'm such an OCD person and he is not.  We arrived 15 minutes late to the appointment today because.....well.....Dave.  So, I was pretty amazed my heart rate wasn't like 289!!! Haha!  If Dave and the move don't kill me, there's no way cancer will!!! :D

Chemo #14

I had my ANC levels checked first thing in the morning and it was 12!  I didn't expect it to jump that high overnight.  The doc says that she wants me back on the 2 Neupogen shots in between chemos.  No issues with chemo today.  She administered the Benadryl a bit slower today and it didn't feel like I got hit with a tranquilizer dart!

My side effects have definitely been ramping up since June.  I'm exhausted all the time now.  My left foot numbness happens daily and has spread to the bottom of my foot a bit.  I'm getting bloody noses.  I think I have my first mouth sore.  I'm not sleeping well, even with my Unisom.  My skin is getting incredibly dry and if I touch plants/trees, I get rashes.  I used to lose my sense of taste for just a few days and now I never regain it back in between treatments.  It doesn't just make things taste funny, it makes things taste extremely foul - especially things with sugar. My tongue is dry and my teeth have been hurting.  My weight dropped another pound this week - 157 lbs now....almost back to where I want to be at 155.  My heart rate was at a new, alarming high: 116 - eeeek!

We move this weekend and I haven't really started packing.  I'm almost too tired to care and if you know me, you know that this means I'm extremely beat down.

JUST TWO MORE!!!!!!!  It doesn't seem possible!!!

Rrrrrrrr! :(

During my last chemo, I met with the physician's assistant and the oncologist and they both insisted that my ANC (white blood count) was so incredibly high (30, with a normal range being 4 - 11) that there was no way it would go low enough to need Neupogen shots in between.  Dave and my nurse insisted that I should get my blood checked in between just in CASE it went low.....because I really don't want to have to miss a treatment and have this take longer.  If my ANC is higher than 1.5, I can receive chemo.  There  was some pushback by the physician's assistant when Dave and my nurse asked if I could have my blood checked today (Tuesday) prior to chemo.  They were thinking, just in case it goes low, I could get a Neupogen shot and maybe have a chance at chemo the next day.  They let us schedule it, but still insisted it wasn't needed because there was no way it would go low after being that high.

So, guess what?  I went in for a blood draw and waited while the results came back.  It was ZERO (0.8).  I should have guessed because I have been beyond exhausted and I always start losing my voice when I go low.  I got a Neupogen shot and chemo is supposed to be first thing in the morning.  I will start with a blood draw in the morning and see if my ANC can get up over 1.5 overnight.

Trying not to stress.....because I just want to stay on track!

Chemo lucky #13

I cannot lie, I was scared to death to head into chemo today after that last allergic reaction.  Feeling your breath get restricted is frightening as hell.

I met with my regular oncologist (who had been away on a 2 week vacation).  She is really the best and I'm so thankful I ended up in Brockport with her.  She feels that the allergic reaction is usually a one-time deal, but is going to double up my steroids and benadryl for the remainder of the times.  My weight was down 2 lbs.  Yay, but the increased steroids will power through that weight loss.  My ANC (white blood cells) was THIRTY!!!!  So, a normal level is around 4-11.  An elevated level usually means that your white blood cells are kicked into gear fighting an infection. I don't have an infection, so the Neupogen shots plus the steroids are probably causing the huge increase.  So, it looks like I may not need the 2 Neupogen shots this week, but I have to have a blood draw in the middle, just to make sure the number is staying high.  My anemia is slowly getting better.  It's at 33 now.  I still have to check and see what a normal number is for that.

My latest symptoms are extreme exhaustion, to the point that I can't lift my arms and my legs feel like they are made of stone.  This is a new level on the tired scale for me.  And unfortunately, it is happening right when I need to keep the house clean for showings and I have less than 10 more days to pack us up.  I do a little work and then lay flat on my back for a good hour at a time.  The kids are watching a lot of tv and iPad and there's nothing I can do about it.  I am still getting a little numbness in my left foot, but it comes and goes so they aren't too worried about it.  It hasn't made me stumble or fall yet.  Two newish symptoms are bloody noses and my finger nails are growing funky - splitting and weirdly bumpy. Some people lose their finger and toe nails during chemo.  I hope I avoid that.

When I got the clearance to go back to the chemo room for treatment, my heart was racing.  My heart rate was 105.  It has been hovering at 98-105 in the past few weeks.  I have to seriously breath and force myself to calm down.  I have the stress from the move on top of worrying about another allergic reaction to the Taxol.  I got the anti-nausea meds, the anti-heartburn meds, a double steroid, and then a double benadryl.  When they were giving me the Benadryl, I was feeling incredibly drugged up.  The room was spinning when I was moving my eyes and I felt like I was moving through Jell-O.  It was hard to stay awake.  When the Taxol was started, my favorite nurse stuck by me and made sure I was not going to have a reacion.  I didn't and then after about 10 minutes of knowing today wasn't the day I was going to die, I relaxed.  Dave gave me one of his amazing foot massages.  Due to the increased Benadryl, driving myself to and from chemo on my own cannot happen anymore.

THREE MORE!!!!!!!!

I miss my eyebrows

I cannot believe that I've been going through chemo since March.  I'm on the home stretch and if nothing stalls me, I will finish the first week of August.  A lot has happened during these 5 months and sometimes I wonder if it's all for real.  I've had my head shaved.  I've been too sick to get off the couch for full weeks at a time.  I barely made it through the end of the school year.  I am finding out that "chemo brain" is a real and evil thing.  I have been exhausted and the exhaustion just compounds week after week.  We found and purchased a new house all within this terrible time.  I have lost my eyelashes.  I have gained weight and look puffy.  And I have lost my eyebrows.  I don't even look like myself anymore.  I take my glasses off before I undress for the shower for fear of seeing myself in the mirror.  It still takes my breath away.  My mastectomy looks like a Frankenstein horror show.  I have no feeling in any part of my stomach and the hip to hip scar is ugly and purple.  I have a huge lump where my port sticks freakishly out.  I will never get used to seeing myself without hair.

I try to tell myself that this is not permanent.  My hair will regrow - but it will takes years.  I will have another surgery to make the mastectomy match my other side - but I will never have feeling there.  My eyelashes will regrow - but the jury is still out on the eyebrows.  I have had two people tell me that theirs never grew back.  My fear of cancer will never go away.  There is no way to know if the chemo did its job other than if I am still alive in 10 years.  I will start taking Tamoxifen in August.  The side effects of this drug are awful, as well.  I will be on that for 10 years.  None of this is going away.  But, I have gotten through the last 10 months of this ordeal by force-feeding the message that this is just a chapter, not the whole story.  I'm not really sure if this is true.  I am definitely changed - physically and emotionally.

So, as I face the last four treatments, weird thoughts run through my head.  I will miss going to the damn chemo appointments.  Miss them!  How can that even be?  The people there are amazing.  My nurse makes me laugh and I enjoy her company so much.  It has been the only social outlet where people really understand what I'm going through.  They see bald and eyebrowless women there all the time.  I can close my eyes and drift off and nobody judges.  They truly care about all my weekly symptoms - and actually ask me about them.  I am in that office three times a week!  And there is nothing like a smile and a laugh with another woman wearing a headscarf.  We know.  We just know without speaking.

I miss having the energy to do things with my family....with my friends.  I miss feeling like I can be attractive and feminine.  I miss being able to think clearly.  I miss being able to socialize and laugh without it taking so much effort. I miss the taste of food.  I miss the clear, refreshing taste of water.  I miss being able to plan anything ahead of time.  I miss not taking medications every day for every single symptom I have.  I miss getting through an hour without a horrible hot flash.  I miss having the stamina to do things I love, like gardening and cooking.  And I miss my eyebrows.

Chemo #12 and an allergic reaction

I keep getting more and more nervous that they are going to stall my chemo and I am SO close to the end!  I am still having foot numbness on the left side, but it hasn't gotten any worse.  My ANC was sort of low.  Usually it spikes up high a day after my Neupogen injection, but I had to have my shot on Monday instead of Tuesday due to the Fourth of July.  Therefore, my number was a 2 instead of 5+.  We had gone for a hike in the woods the day before and my skin was very bumpy - like I was allergic to something.  The oncologist thought it could be sun poisoning or contact dermatitis - because my body is basically in battle mode and fighting against everything.

The substitute oncologist let me proceed with chemo.  I was relieved.  I got my pre-meds of the steroids and Benadryl.  Then they started me on the Taxol, which lasts an hour.  Within 4 minutes of starting the Taxol, I felt a serious anxiety in my chest and was starting to freak out because I thought I was imagining that it was becoming hard to breath.  I thought it was all in my head and I was having an anxiety attack by over-thinking it.  Then I felt like my whole body was having a hot flash.  Dave offered to go the nurses' station and let them know.  When he and a handful of nurses came out, I could tell by their faces that something bad was happening.  They said I was seriously red.  Dave said I looked the blueberry girl on Charlie and the Chocolate Factory.  Sadly, he did not take my picture.  They immediately turned off the IV pump and called the doctor in.  By the time he walked in, I had a rash on my neck, back, arms, and hands.  They gave me more steroids and benadryl by IV.  The nurse was poised and ready with an epi-pen.  I came out of it and felt better within 3-5 minutes.  And very, very tired from a LOT of Benadryl!

The doctor recommended waiting 10 minutes and trying to restart the Taxol with a nurse sitting by me for a good 15 minutes.  I'll tell you, I was terrified about restarting it because I didn't want to feel like that again!  She restarted it and I did fine and was able to finish the whole course.  Thankfully she kept me distracted and chatting during that time.   The doctor says that there is a chance of me having anaphylactic shock with my future Taxol treatments, but the chance is very low.  The benefit of not dying from breast cancer is worth the risk of potentially dying from anaphylactic shock.  Cool. So far the mastectomy and chemo have been full of fun and entertaining things.

My weight was up 2 lbs this week.  Boo hoo.  It was all the awesome food from a graduation party and Fourth of July picnic.  And a couple of beers.  Shhhh.

FOUR more to go and I plan on sticking to this schedule so I can finish the first week in August!!

Chemo #11

Lately the chemo makes me cold and I get a heated blanket!

I woke up with a ton of congestion and a cough.  The oncologist's office had called me yesterday to say that my ANC was low and I would have to come in earlier to get another port blood draw to see if yesterday's Neupogen shot brought my numbers back to the normal range.  Turns out my ANC was 0.5 - and you can't get much lower than zero!! They asked me if I had any infections or fevers since it was so low.  I didn't, but that explains why I woke up with the congestion and cough.  Also, I seem to get bloody noses whenever my ANC is low.

They took blood and re-did the ANC and it was 5.1 - which is good enough to continue with chemo.  However, in the past 3 days, I have developed numbness in my left toes.  It happens mostly at night and when I wake up.  During the day, it is generally pretty normal.  This worried the oncologist and he was leaning toward making me take a week off of chemo.  His fear is that I can have permanent neuropathy if we don't watch out.  He was confused that only one foot is effected. Neuropathy usually effects both hands and feet at the same time. I convinced him that my numbness is not serious and not impacting anything that I'm doing.  He wanted to be cautious, but in the end he let me do chemo this morning.

My weight is down another 2 lbs!!!  Usually they do not like to hear that we are losing weight, but since I have put on 10 lbs during chemo, I have a few pounds to still lose.  My heart rate was too high when I came in for my Neupogen shot yesterday (101) and again today (105).  I guess that's not good and they are really watching it. I'm trying to breath and relax. Ha!  Hot flashes, like a serious  inferno, have been going on since the start of chemo and have just been getting worse.

It's unbelievable to me that I only have FIVE more chemos left!!  That is so do-able!  The end is in sight!  I don't know what I'm going to do with my Wednesdays when I'm done.  I told my favorite nurse that I would just come in on Wednesdays for a warm blanket and a bag of Doritos.  :)

So tired.....

The couch is my best friend lately

It's my first day of summer vacation.  I have so much to do......yard work......packing.....two 5 year olds......etc. etc. etc!  The past 2 weeks, the chemo has been catching up with me.  I'm so incredibly tired.  I wake up tired every morning.  Generally, I get through the day by doing a little chore and then laying down for a half hour/hour.  I've already taken a NAP this morning and if you know me, I rarely sit down and I certainly don't nap during the day!  I really can't fight it.  I'm tired and I'm weak.

Other than exhaustion, the only other serious side effect that I'm dealing with from the Taxol is that I have lost ALL sense of taste and smell.  Nothing tastes good.  I eat just because I'm supposed to.  There is zero enjoyment in eating and cooking right now.  Since I consider myself a "foodie", it's nearly killing me.  I hope this helps me lose the extra 10 lbs that I've put on since I started chemo.  I  also hope that these senses come back when this is all over!!!

Chemo #10

I got a phone call from my favorite nurse (Kelly) this morning saying that my ANC was too low for chemo again (1.5). Since I just got the second Neupogen shot the day before, we hoped that it would kick that number up into a more normal range. I was having seriously crushing bone pain in my spine all morning so I figured that my bone marrow was hard at work making white blood cells.  I loaded up on Motrin to get through the day.  I had to come in a half hour earlier for another blood draw to check and see if we could proceed.

Sad....Kelly was not there this afternoon.  But, I have to say the other two nurses are super great too.  The people there make all the difference.  I love my oncologist, Dr. Kleiner - she is a sweet and thoughtful doctor.   My blood draw was ready in less than 10 minutes and it was 5.3, so we were good to go.  Not as high as last week, but if it means I don't have to postpone chemo, I love it.  So, now I'm set to always receive those 2 shots between chemos, and if it drops lower, I am sure I'll be on deck to get 3 of those shots.

I got my chemo, and I totally fell asleep during it this time because of that Benadryl.....and just general exhaustion that has slowly been creeping up again.

SUPER good news - I LOST 2 lbs this week.  It was starting to freak me out that I was putting on 2 lbs every week.  I think this last hot week beat down my appetite.  I'm toying with the idea of starting yoga or swimming once school is out.  I need to rebuild my stamina.

I also started thinking about my hair growing back.  This Taxol chemo hasn't made any more of my last tufts of hair on my head fall out.  It caused a sweet "Brazilian" (haha) and my eyelashes fell out.  So, I have brought in this army to help with my hair growing back:  Prenatal vitamins, Biotin, an essential oil concoction that I'm going to make as soon as it arrives in the mail, and a special shampoo to help hair grow.  I figure my hair will grow slow because it usually does.  Google says it should grow 1/2 - 1 inch a month.  I'll look like Will and James by Christmastime.  Today was the last day of school with kids, and as the buses pulled away, I put my wig in retirement.  It's going to be scarves from here on out.  The wigs are just unbearably hot for me.  I'll wear them for special occasions that are AIR CONDITIONED!!!!

And before I end, here's the thing about eyelashes that you may or may not know.  They are super important!  Having no eyelashes means that things are constantly getting in my eyes, tears just gush out (not that I cry - ha!), and my eyes look terrible and naked.  I feel like there was one more important thing....but, you know, chemo brain.  It's a real thing - and I hate it.

Just SIX left......