Monthly Archives: April 2015

Retail Therapy

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Things got a little heavy the other day in the oncologist’s office. Discussing my surgery options and my percentages reoccurrence once I’m done with my rounds of chemo.  Left me out of it, in a funk, for a few days. Even attended my first support group – the information I obtained was great – but again, it’s heavy stuff to be discussing (we were talking double mastectomies, saving nipples or not – what’s best, what it means if you do save them or do not, plastic surgeons – what to expect or not, lumpectomies – pros and cons, etc.) . Got so stuck that I opted to take a day off – finish a darn good book and took part is some good old retail therapy.

I’m happy to report that my day was fantastic – and my mood is MUCH improved. My energy came back (the energy I seem to have lost earlier in the week after all of these discussions) as did my positive attitude.  My pocketbook may be a little lighter but you know what, it’s brand new and beautiful and I love it!  Some days all I need is a hug from my daughter and I’m good again. Some days all I need chocolate. Today it was time to myself. Just gotta listen to your heart and look around you.   As Ferris Bueller said: Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.

Say Hello To My Little Friend

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Port (one definition from Google): – a strong, sweet, typically dark red fortified wine, originally from Portugal, typically drunk as a dessert wine

oh how I wish that was the port I have and have come to know and appreciate. Unfortunately, it isn’t.

Port (medical) – (from Wikipedia): In medicine, a port (or portocath) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected many times, usually with less discomfort for the patient than a more typical “needle stick”.

How (Medical) Ports Work (also from Wikipedia – how did we ever live without Wikipedia?!)

A port consists of a reservoir compartment (the portal) that has a silicone bubble for needle insertion (the septum), with an attached plastic tube (the catheter). The device is surgically inserted under the skin in the upper chest or in the arm and appears as a bump under the skin [AKA “My Little Friend”]. It requires no special maintenance and is completely internal so swimming and bathing are not a problem. The catheter runs from the portal and is surgically inserted into a vein. Ideally, the catheter terminates in the superior vena cava, just upstream of the right atrium. This position allows infused agents to be spread throughout the body quickly and efficiently.

One of my colleagues who has fought the battle with breast cancer and won, called it “the button”. To have one is to have a love/hate relationship with it.

A few reasons why ports are great to have:

1. They do help avoid the painful hand or arm needle sticks to run the IV line for every chemotherapy session

2. The location is much nicer, in the upper chest/shoulder area- for hands/arm free movement during the extended duration of chemotherapy sessions (mine run 5-6 hrs for each chemo)

3. In comparison to getting your chemo administered through a vein in your arm or hand, a patient doesn’t need to worry about the chemo “ruining the vein” since it’s know that re-use of veins for chemo administration can “wreck” veins for future chemo administrations.

A few reasons why although a must-have, they aren’t all fun and games, they do effect your life:

1. To have one means you are in this for the long haul. They have to be surgically installed. Even though it’s “simple” out-patient surgery, it still requires surgery to get one put in. As soon as my doctor mentioned that I’d need a port it was a huge red flag as to the severity of my diagnosis and the number of times I was going to be visiting for treatment.

2. Life WITH a port is not the the same as life WITHOUT a port. There’s something permanently with me at all times that sticks out of my skin in my right, upper-chest a little bit – pretty much right where a backpack strap would fit snuggly, or a purse strap would hang. For me, it means carrying my work bag over my left shoulder (which I don’t think will EVER feel normal). For one of my friends this meant she couldn’t carry a backpack at all for hiking – way to ruin her usual, relaxing Saturday afternoons!  At the gym, I have also modified things a bit – I avoid  any lift with a bar that would normally be held in the “front rack” position. Honestly, I avoid anything with a bar that goes over my head at all since it’s standard to rest a bar in the front rack position before lifting it overhead. Just seemed a whole lot safer to me; the kettle bell is my new best friend!

So, maybe after all is said and done, the port (medical) that I have is kind of like a 3rd definition for the word port: a place where ships may ride secure from storms. With My Little Friend, I now ride out each chemo session. It keeps me a little bit more comfortable but it also means I’m taking refuge, and that is not really what life is about. Being at a port is biding time – waiting for the day that I’ll be told I can go it on my own again and finally say goodbye To My Little Friend and go back to being the me I want to be and living the life I want to live.

96 hrs – April 20, 2015

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Approximately 96 hrs from the time of my second chemotherapy session was completed, I began to feel like my old self again! My ability to think clearly came back. I could feel the pop in my step come back.  So happy was I! I had been worried that round #2 would pummel me more so than round #1, but so far, it’s looking to be about the same. Having a baseline of what “normal” is at this stage definitely helps. I’m just excited that I’m already thinking about hitting the gym tomorrow morning.

 

 

How Do You Feel? – April 19, 2015

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If you have cancer I think this becomes a standard question that everyone asks you. Your family, friends and colleagues all care about you and what to know.

My first day back to work following my first chemo session I felt completely “green in the gills” as I like to put it. (Recall that I didn’t want to take the anti-nausea pill, silly me!). I told people as much and looked as much. About 3 people into the day I realized that I bet no one really wants to hear my sob story (which isn’t a short sprint of a story but more of an ironman triathalon of sorts) about how I feel less than stellar – especially if – following the first chemo – this was going to be my “new normal”.

Luckily, I discovered during those 3 weeks is that my body’s response is cyclical. I get hit with chemo (thrown off my horse so to speak) – symptoms start in a day or two, they get worse, then they slowly fade away and then every day I felt a little better until I felt great and walked in for the second treatment (AKA – getting thrown off the horse again). Get thrown off 6, get back on 7.

Today – 3 days after my chemo, I feel exhausted. I’m not used to needing so much sleep. I want to take the time to relax and catch up on a good book while I rest and reading is just too much to handle. I haven’t even blogged since it’s been too much to get my act together to do so. Frustrating.

The chemotherapeutic drugs completely slow down my mind. It starts as soon as they start to enter my IV. I was reading a really interesting article all about the latest and greatest research going on in the cancer immunotherapy developments while they were administering the drugs, and suddenly the paper was too much to focus on. My brain just couldn’t read and comprehend the words. Words I had read fine, at a nice clip not 10 min earlier – suddenly coming as slowly as they do for my 5 year old who’s learning how to read.  3 Days later, still the same. All of my thinking and organizing – basics for my brain function – are still on slow motion. Only light at the end of the tunnel is knowing that this is cyclical. What goes down should come back up. Just wondering how long until it comes up this time….

 

 

Homebound – April 7 and April 8, 2015

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Saturday, April 4th we had an amazing Easter Egg Hunt at our house. This is a tradition which I started with my daughter and this year, I expanded it to invite even more of her friends. Instead of the usual 5 kids and their families I upped the ante to a few more of her close friends (from different parts of her life – 3 kids who she was friends with before preschool, her 2 good friends she made during preschool, her 2 good friends from kindergarten, her 2 good neighborhood friends, and her 2 good friends from Daisies). Our garden was in full bloom. The sun shined (I wore SPF50 and a hat!). There were a zillion eggs. The kids had a blast.

After everyone left I cleaned up quickly with my husband and then collapsed to rest. Sunday – ah Sunday a mini-cold grew a little in strength and I was exhausted. I stayed home while my husband and daughter attended a brunch of one of my daughter’s friends at school. Oh how I wanted to go….but yeah, that just wasn’t going to happen. My family stayed out all day so I could rest. I called my oncologist’s office and spoke to the on-call doctor – worried about my cold. I didn’t have a fever at all but I definitely had a slight sore throat and an obnoxious runny nose. He called in a prescription for an antibiotic and told me to be very careful and if I got a fever of 100.4 or higher to go straight to the ER. I had heard this before. I was already checking my temperature a minimum of 2x a day.

Monday, April 6th the cold continued without fever. I continued to panic about the whole 100.4F thing but figured I was ok. I felt off enough I opted to work from home and stay away from colleagues. If I just sat on my couch I felt fine and was functional. Then, while speaking to colleagues on the phone I noticed an odd bump around my ear – a slightly swollen, tender to the touch spot. Cripes!  I called the oncology nurses. “Better come in,” they said. I did. They ran my blood and I saw the doc (lucky someone had canceled!).  This was my second time visiting the office unexpectedly. The first time was less than a week before with a similar small, viral cold worry. They’d taken my numbers, warned me about hitting 100.4F and sent me on my way and noted that next time, 24 hrs after my next chemo treatment that I’d get a magic injection to help shorten my nadir period and also keep my counts a bit higher.  This time my numbers were half as much. They’d dropped further (proof the chemo was doing its job wonderfully!).  Looking at my odd bump that had brought me to them for a visit– I was issued another antibiotic. I asked the doc about work – being anywhere near people. I’m still new at being a cancer patient – what’s a good decision? What’s a bad decision? Work suddenly sounded like a bad idea – I was scheduled to be meeting with folks from out of town to help with training them. Ugh! A cancer patient’s nightmare – PEOPLE packed in a room for HOURS!!  I let him know my job was amazingly supportive, and that even with my planned schedule, they’d be able to accommodate me working from home and I’d still be able to deliver my contribution to the trainings. He recommended that I stay home for 2 days – and give my counts some time to get back up. So I did.

Again – so grateful for my amazing support network at work – a boss who understands, colleagues who are flexible and will work with me to help me get my job done as effectively as I could.   I’m not certain everyone at work really gets how massively important that was to me today – many of them still don’t even know about my situation, though they’ll likely figure it out once the hats and scarves start making an appearance.

How Stupid is This? – April 7, 2015

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(This post is NOT for the faint of heart – apologies is this is TMI (too much information) for some – you cannot say you weren’t warned)

Chemo. It kills hair dead – yet this morning I had to shave the annoying hair that continues to grow on my legs. Oh how I will NOT miss shaving my legs!  Thing is, for a time in my past I used to get a Brazilian – and I maintained that level of “cleanliness” so to speak, for over a year (though not anytime recently).  Now – with the impending doom of hair falling out in clumps, leaving me with spotty patches on my nether regions or on my head as the case may be -as my treatment continues, I find myself wanting to take charge of this whole transformation.

Now – some folks take charge by just shaving the hair on their head. Bam!  Yeah – I considered this but I really like the long hair on my head. I’ve come up with a few alternatives I see for my multiple body hair issues that are staring me in the face.

 

  1. Body hair NOT on my head – How stupid is this but I’m actually going to sign up for a full Brazilian. I know how clean I felt when I was sans-hair in my nether regions and you know what, the thought of having some but not all is really irksome. Nope. Not going to let the chemo get it, I’m going to pay good money to have it all ripped from me one last time. Hopefully chemo #2 will keep it from re-growing so I don’t have to go for a follow up in a month or so and pay for another mid-chemo Brazillian….

 

  1. Hair ON my head – Ok. I thought about it and going from long to no hair will freak me out, but come on – my hair is already starting to go. Gotta think of ways to make this interesting. Decided (since I’d already be due for a haircut if not for the chemo) – that I’m going to get my hair cut weekly. It helps that one of my good friends is a hairstylist and available to assist! I’ve always been extremely conservative with my hair. It took at least 3 different hairstylists over the course of about 10 years for me to get rid of my thick bangs in the mid-90s. I had that giant triangle space of bangs for EVER! Yes – 3 hairstylists in 3 states (we moved a bit) and finally – the bangs were gone.  So – why not embrace this as a chance to get multiple different short haircuts and see what works? Granted – I won’t be able to style it with a flat iron, hair dryer or big round brush – (for these will all help pull what remaining hair I have from my scalp) – I will be able to carefully comb it when it’s wet and then have it cut – add some product for conditioning/curl enhancement and then let it air dry. With my pre-chemo hair – this usually gave my locks a bit of what I called my “Carrie Bradshaw” (Sex in the City – Sarah Jessica Parker) look .  With shorter hair I should really pick up some serious curl! If I get a new haircut every week – knocking another inch or two off – not only will this help me get used to my shorter hair, it’ll also be like a game to see what coworkers actually NOTICE that my hair was cut – and cut again – and again. It’ll be a fabulously fun game for everyone! (OK, I may be a bit too enthusiastic about this but you have to learn to have fun with cancer or it’ll really ruin your day.) The amazing administrative assistants at work will give me tips on which looks work and which do not (they have WAY more fashion sense than I do!)  – so when my hair does grow back – I’ll also have some clue as to what does work for me. Gotta embrace the inevitable.  As Sheryl Sandberg would say, I’m leaning In!

Update as of 4/14/2015, Tuesday – The whole hair thing really didn’t go as planned. My hair started to fall out about 2 weeks after my first chemo and I did get one hair cut on Saturday- to cut off about 4 inches and get it about shoulder length. Problem is every time I tried to make it look “neat” by brushing or combing it – the hair just continued to easy pull out. After coming home Monday night (4/13) to my husband with his head freshly shaved (love this show of support – completely unexpected!)- I decided to go for it and he helped rid me of the rest of the hair on my head.  Finally no more shedding in the shower! Head has been itching for a while and continues to itch but I feel so much cleaner…  I did pick up some nice hats and scarves this weekend, in preparation for the hair loss – so even when my hair was gone I never once cried about it; I just got super excited about how to accessorize and dress for work to set off my new hats!  This whole cancer thing is making me more of a girlie girl than I ever been before!

Update as of 4/15/2015 – 5 Reasons I’m ok With Losing My Hair

The whole hair thing does have a silver lining…..

5. Post-Shower Toweling Time: Takes about 2 SECONDS to dry my head vs. the ages it took for my long hair (below my shoulder) to drip all over me (even when wrapped in a towel). I find that after only 2 days, I’m really ok with this – even looking forward to it.

4. No hair, No Hair To Pull Back: I’m not fighting with my hair to stay OUT of things it shouldn’t be in such as soapy water (if I’m washing my face), food (if I’m eating something and need to lean forward to not get sticky, etc.) I could go on and on. No wondering where my hair tie went (again) and why I can never find one when I need one even though I own about 10 of them! I’m totally ok with this.

3. No hair, no shedding. My hair is (was? will be again someday…) notorious for clogging up drains and breaking vacuum cleaners. We even bought the fancy, shmancy, expensive vacuum cleaner. We did specifically because you could remove the roller bar very easily in order to allow access to cut off the ton of hair wrapped around it. We did this often. I think my husband will approve of the unscheduled pause in the roller bar maintenance since, thinking about it, he always takes care of this, not me!

2. Hats! Scarfs! Accessories! No hair means learning to be feminine without hair. For me – this is a big deal. It took me 35 years to start wearing skirts 3 out of 5 days to work and now, I’m finding with this whole new “Fabulous and Forty” turn in my life that I’m now seeing a wonderful opportunity that I had never delved into before: accessorizing! I’ve already purchased a few adorable hats for work and for weekend fun. I purchased some new scarfs, too (though honestly I have to admit, my love of scarfs does go back farther than my breast cancer diagnosis!). Also – I realized today, that I need more hoop earrings. Hats without hair leaves my ears screaming out for earrings. And – perhaps some nice bracelets? And, oh yeah – the purse I use all the time, which is both weekend and work friendly and kid friendly and over 7 years old –  I just might need to replace that, too – perhaps with a few different purses for different moods or work or play. You catch my drift. In a very odd turn of events, breast cancer is opening my eyes to being more of a girly girl.

1. My Motto for Losing my Hair (say it to yourself as you are witnessing your hair coming out in scary clumps- “And so it begins.. Let the shopping commence!!”  I think this should be the motto for every woman who is losing their hair to chemotherapy. Seriously. See #2 above.

Oh yea – and one reason I might be VERY angry about this whole hair loss thing….after speaking with someone who does waxing for a living, she shared with me a story about one client that she had. Evidently she continued to wax her client’s leg hair and arm pits through ALL of her treatments; while all of the hair had been banished from her head due to her chemotherapy, the hair on her head continued to grow and grow and grow. Seriously?! That totally is uncalled for! I’m putting in an order to my oncology nurses tomorrow (at my #2 chemo session) to make sure the chemo is directed to my obnoxious leg hair. It will be interesting to see what happens.

 

Update as of 5/1/2015

Ok, so it’s been a while. Time to report out on the whole hair situation.

Underarm Hair: Happy to report that the underarm hair seem to have been blasted by the chemo. No more growing! Saves me some effort which is nice.

Leg Hair: So – it is still growing but it is definitely damaged. It is very, very slow. I haven’t actually shaved it in over a week or two and it’s still super short. I’ll shave it again on the next chemo day and see how much it recovers after that. Not as annoying as I thought it was going to be. I think if I had it waxed it’d be too blown away to figure out how to grow back any time soon. Might do that if it comes back after chemo #3….

Head Hair: This I had shaved off and it is continuing to grow all be it also slowly. I actually am considering having it shaved nice and close by a professional and then possibly getting a light spray tan. The whole pale/white head thing is kind of blah. Either that or a henna tattoo…but what to put on my noggin that would be fun but also work appropriate? Perhaps just get a henna tattoo of a headband? Would be fun. Might need to look into it further…..

Update as of 8/28/2015

My hair started growing back around the time of my last chemo, July 9th. They skipped the taxotere and I think that was the one doing the most damage. Either way since that date my hair has slowly been growing back. I now have a light brown fuzz on my head but it’s not yet dense enough to hide my scalp. Here’s a quick updates on the hair situation now…

Underarm Hair: it’s back.  At my first shower after the surgery I dried myself off and then looked in the mirror – checking my incisions and body to make sure that everything was ok. I noticed that it was PAST the time to shave my armpits. I had enough hair that had grown that I went back into the shower to shave it. Funny thing is, it was hard to shave since I usually do this by putting my arm straight over my head – now I could shave it but had to keep my shoulder much lower until I’m fully healed. We are back to the old grind on this one.

Leg Hair: First time I shaved it was at my second shower after the chemo (I could have done it at the first but still felt too sore to want to mess around that much in the shower). A few days later, the hair had grown back and now I need to shave again. Yep, it’s back. Kind of miss the no-shave/smooth as just-waxed feeling but I’m good with it. Shaving means I’m another small step closer to “normal”.

Head Hair: Growing well. Very soft and brown. Can still see my scalp but it’s getting a little denser every day. Looking forward to the time when I have enough hair to put some hair styling product in it to spike it – gotta take whatever hair style I can muster….but for now, I’m still usually wearing hats – my head gets cold!

Rest of my Body Hair: I’d waxed before the chemo had it’s full impact. I’m happy to say that I could definitely wax again. All is back to normal here, too.

Pill Popper – April 6, 2015 (Second post for this day…)

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Another visit to the oncology nurses in the second week since my first chemo was administered. I think I’ve called them on average every 3 days with some other question or concern.  This has led to me visiting the hospital (oncology office) twice to have them check my blood counts and see me in person.  Given the situation, better to err on the side of caution on this one – the nurses and the doctors I’ve spoken to have all agreed and encouraged me to keep calling with my questions.

My questions center around me having a bit of a cold. One is not supposed to get sick while mid-chemo treatment plan.  My track record the winter of 2014-2015 has been my worst in all of my 40 years. I not only got the flu for the first time in my life for a week but I followed it up with full on pneumonia which knocked me out of work for the entire month of December.  Even after I recovered it seems I’ve had a runny nose almost constantly from there with perhaps a few days here or there that I was 100% sniffles-free.  So – asking me to be without-cold is logical but, likely not in the cards for me.

Either way, here I am – little, viral cold and all. At unscheduled visit post-call to the oncology nurses, my doctor put me on one antibiotic for 7 days. Then I had another strange, possible infection show up as well in my jaw (have I mentioned that I had 2 root canals on a Monday and Tuesday and on Thursday had my first chemo? Ah yes – another story for another day!).  Anyway – now, following my second, unscheduled visit post-call to the oncology nurses, my new, odd –possible infection has led me to start yet another antibiotic which would be suitable for THIS issue.  Pills, pills pills. And more pills. I’ve never had so many medications in my body in my life. So many drugs administered by IV and with the chemo and now so many pills for managing my body chemistry to keep me healthy and out of harm’s way. I feel like a druggie – pill popper; just wasn’t expecting it.  Oh well. It is what it has to be. These doctors know their stuff; I trust them.

Anger – April 6, 2015

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4 Stages of Grief:  Denial. Depression. Anger. Acceptance.  Today I’m in the Anger stage.  My body is failing me – abandoning me. Every day something else new and wonderful shows up that warrants a call to the oncology nurses. So frustrating. I’m sick of being sick. It’s like I hit 40 and my warranty expired. WTF !? Now that I cannot go to the gym I wonder why I ever wasted all of those other days not going when I was healthy. It’s all in perspective isn’t it?

Anger I’m sure is an obvious part of being a cancer patient. It’s just that I feel like a bucking bronco in the pen with a rider on its back. I just want out of the pen and the rider the F! off of my back! Yup. That about describes my frustration. I’m not a patient person. My spirit is strong. I know I can do this . I just wish …

What do I wish? Well honestly – I guess I should be grateful when I step back and take a second to gain perspective. I should…. Be grateful that I’m physically strong to get through this.  Be grateful that my nausea has gone away for now. Be grateful that my colleagues, manager, and friends are so supportive of me and that I have the wonderful doctors and care facilities supporting my care during this time. Be grateful that I have enough fight I me to not give up on anything. Buck up little bronco; it’s a marathon not an 8 sec ride….

Gotta Have Something To Aim For

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Without a goal I am a person wandering around aimlessly in the woods. As I mentioned, I’m a planner so I NEED goals – a path, direction, target – anything to help me get through this. I wrote out my crossfit goals – the things I didn’t want to lose that I’d worked so hard for. Things I wanted to try to maintain or maybe even make stronger, if I could, while I endure chemo.

My goals are to maintain the ability to do….

  1. a 2:30 min plank (30 sec center, 30 sec right, 30 sec center, 30 sec left, 30 sec center)
  2. a 30 second handstand hold against the wall (update: or 3×30 sec handstand via walking the wall)
  3. run for 1 mile – whatever time it takes (or alternatively row for aerobic workout)
  4. do 10 burpees in a row
  5. do 10 wallballs with a 6 lb wall ball
  6. 10 KB swings in a row with a 27 lb kettle bell

Some of these are seriously softball goals – easy things – perhaps I should add time limits, but then again, I’m only about to go for my second chemo treatment in a few days – so who knows – maybe this will become insanely hard after treatment number 3 or 4….. I can always add more to do…..

With these goals in mind I designed my Mash Up workout. My goal is to continue to do the above workout at the gym and other variations at home as necessary  – even if I go slower, taking longer breaks, doing only 3 reps a time – whatever it takes, just to get through it. I’ve been told I’ll likely lose weight during chemo – and I don’t have tons to lose. If I lose weight I’ll be losing muscle – not something I want to do but unfortunately, I don’t think I have much of a choice in this matter.  So, for now– I’m going to set these as my goals – my wishes and dreams to help keep me strong. Only time will tell if I’ll be able to keep making it to the gym during my course of treatment. For now, at least I have a plan of what I want to do and how I will stay strong. I’m a planner with a plan. Means I’m in control of what I can control.