Update 26

Update 26

Chemo infusions:  9 down, 1-3 to go

Last week I explained that because of the gradually increasing neuropathy in my fingers, my oncologist was thinking we would lower the next two doses by another 20% and then stop at 10 chemo treatments instead of the original 12 planned from the beginning.  During the past week I didn't feel like the neuropathy progressed like it previously had each week (a tiny step worse each time); it seemed to hold steady and I had to be honest about that when meeting with Dr. Soule (whom I now affectionately refer to as Chemosabe) yesterday.  

The routine of investigate-->  evaluate---> revise the plan was established long ago in this process so it doesn't phase us anymore to think we know what's going to happen only to have it change. It's all tentative and that's okay because we know this leads to treatment that is tailored to my specific needs and that's just the kind of care I want. Instead of stepping down another 20% this week, we held at the same dose I had the last two weeks (20% less than I received the first 6 times) and I am not going into next week thinking it will be my last treatment. If things go about as well this week as last, we'll keep going towards the goal of 12 chemo infusions total. 

Whether I have 1, 2 or 3 treatments left, the end is close!  I have soft hair growing back in ever since the 20% reduction from the original dose.  As I mentioned, the neuropathy is unchanged.  My sense of taste has been compromised and very few things taste how they should to me.  I have developed a few mouth sores and my nose is bloody every day. My energy level hasn't been great over the last week but my parents are wonderful about filling in all the gaps; they get the boys to and from school, take them for haircuts, take care of them while Joe and I meet with teachers, etc…  We couldn't do this without them; we appreciate tremendously the luxury of having two additional adults keeping us on track.  It's still a roller coaster but we're all able to hang on for the ride.

Update 25

Update 25

Chemo infusions:  8 down, 2 to go?!!

Treatment #8 on Tuesday was hilarious because my friend Gina was in town to accompany me.  I talked so much and laughed so hard during the 3 days she was here that I am trying to rest my voice so my throat can recover!  I turned 36 on Tuesday and I know firsthand now how good a birthday feels after a cancer diagnosis; it was a privilege to celebrate it with my loving family. 

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Same old symptoms this week as last.  The neuropathy is still mild but not ever letting up and continuing to progress.  I'm having trouble gripping things, separating papers, opening packaging etc… In light of this, my chemo dose is being lowered by another 20% for next week, March 1st, and the week following that.  My oncologist in Lawrence feels like stopping at 10 treatments is probably the best course of action to avoid the neuropathy becoming permanent and that doing only 10 treatments instead of the original 12 planned won't compromise my outcome.  It looks like my last treatment may very well be the week of March 7th!  If this is the case, reconstruction efforts will pick back up in April and I'll most likely have another surgery in May or June.    

We have been dealing with this cancer nonsense since October and having the end of chemo in sight is a huge relief.  

I am more than ready to move on, but always keep in mind (when I'm reflecting on what we've been through and what is still to come) this line from Ralph Waldo Emerson "What lies behind us and what lies before us are tiny matters compared to what lies within us."  

Update 24

Update 24

Chemo infusions:  7 down, 5 to go!

My infusion yesterday went well and it feels great to be closer to the end of chemo treatment now than the beginning! 

Because my neuropathy has been persistent and progressive (although mild so far), my chemo dose was lowered by 20% for my 7th treatment and will stay at that lower dose for the next 5 treatments.  (It isn't worth risking permanent loss of feeling in my fingers and toes in my particular case because my tumor was so small at the time of diagnosis and chemotherapy was only indicated because of my need for Herceptin treatment.  If my cancer cells had not been positive for HER2/neu receptors, oncologists would have considered my double mastectomy treatment enough. About 25% of breast cancers are HER2/neu positive.)  Links are in blue if you're interested in learning more. 

This week I enjoyed the company of my Aunt Mary Colette during my infusion. She flew in from Louisville to visit and brought with her the warm, fun-loving enthusiasm that everyone that knows her loves and enjoys about her.  She arranged for the hospital gift shop to have 7 balloons ready for my 7th chemo treatment! 

It was the perfect day for colorful balloons because Ian and Henry were off school and able to come to treatment with me for the very first time, something they have been really anxious to do:

They got to chat with my oncologist, meet several of my nurses, pick up the balloons from the gift shop and the pharmacist invited them to watch my drugs being mixed and prepped in the pharmacy lab!  It was a full afternoon, especially because the room we were in was so small. :) 

I'm excited to be taking a little less toxic drug into my system each week now and I'm wondering if the reduction in my dose will impact how I feel and how my body is reacting to treatment. 

Whatever difference it makes, I'm only dealing with it 5 more times, hopefully EVER!!

P.S. I still have eyebrows.  I don't know why, but I'll take it. 

Update 23

Update 23

Chemo infusions:  6 down, 6 to go!

I am so happy to be halfway through this process and at the same time I can't believe I'm only halfway through this process!  This cancer business requires some serious stamina.

Thanks to the makers of Benadryl, I was able to get a decent night's sleep after chemo infusion #5 and again this week after #6.  Previously, it was taking me all of Wednesday and most of Thursday to recover from getting only a few hours of sleep on Tuesday night- it really takes you down hard when your body is so short on healing, restorative resources.  I have felt so much better last week and this week with that extra sleep; I think Joe and my parents would all agree that I've been a different chemo patient lately.  I'm almost energetic. The timing couldn't be better right now as we celebrate a double birthday and Valentine's Day all at once. 

No significant changes this week- hard to tell if Vitamin B6 is helping the neuropathy or not.  It hasn't subsided and has possibly increased just a little.  It definitely didn't fade and then come back again with the next treatment, which is the pattern they prefer to see.  If it continues to persist and worsen, then my chemo dose might be lowered by 20% for the 6 infusions I have remaining.  Thanks to early detection, we have that option.  

Thank you for the love and support! 

Update 22

Update 22

Chemo infusions:  5 down, 7 to go!

I had a pretty good week after my last chemo session. The hospital has private rooms for chemo patients with comfortable chairs.  After my first session in a room with a window that was pretty cold, I started layering up on Tuesdays and it has helped tremendously to have a thermal layer beneath my regular clothes.  I prefer the ease of layering clothes over dealing with blankets that I would have to bleach or burn after letting them cross the threshold of a hospital…  Kidding!  Really, even without hair on my head this time, I was warm and I have good hats to use when I want them. 

Yes, the hair came off last weekend. The boys helped Joe shave off my pixie cut and the relief I feel from the discomfort of it falling out is indescribable.  I can't believe I'm going to reference Home Alone twice now, but remember when Harry's head is torched and he runs to the yard and buries his head in the snow and you hear the sizzle of sweet relief?  That was me rubbing Eucerin cream all over my scalp on Saturday. Were it sold in 10 gallon buckets, I would have dunked my head in that lotion in a heartbeat.  

The facial rash I have been getting was indeed spread around my scalp as I suspected and applying Benedryl cream has helped start to clear it up. You can still see some red bumps above my left eyebrow in this picture from last night:

Oops, wrong picture.
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​Here we go: 

I share some of these specifics because cancer seems to touch almost everyone, directly or indirectly, and you never know when another might experience the same symptoms and appreciate knowing what helped someone else.  I seem to have a new symptom layered on each week and this time it was neuropathy.  While unloading the dishwasher a few days ago I noticed a quick pain sensation when my fingertips would bump into a cup or a bowl. I started paying attention to my fingers and realized they were a little numb right on the very ends.  Vitamin B6 twice a day was prescribed to help ease the neuropathy and hopefully prevent it from worsening as well. My vision was good and stable this week thanks to the drops, gels and ointments I'm using.  Of course, all the drops, gels and ointments make my eyes a little blurry sometimes- hah!  What's life without irony?!

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My 5th infusion yesterday went well.  Infusions are predictable now and there's comfort in that for all of us.  We are almost to the halfway mark and looking forward to that milestone. 

Aside from my treatment we are focusing on Ian and Henry turning NINE YEARS OLD on February 12th!  They just asked yesterday when cards will start coming in the mail. They are excited for birthday greetings, bringing cinnamon rolls to share at school, a 5 day weekend that happens to start on February 12th and they have their fingers crossed for a birthday sleepover to celebrate (they chose new bed lofts for their rooms instead of a party).  Birthdays will be a fun distraction this month!

Thank you for thinking of us and caring about us, we appreciate it! 

Update 21

Update 21

Chemo infusions:  4 down, 8 to go!

I saw an ophthalmologist last week to visit about my blurred vision, and dry eyes as a side effect of medication was deemed the culprit.  I now have gel drops and an overnight ointment (that feels like smearing vaseline across my eyeballs before I try to sleep) to keep my eyes hydrated and they kept the blurred vision away between my 3rd and 4th treatments!  The rash came back and faded again. The bloody noses are mild but persist.  

I'm finally experiencing one side effect I did anticipate- hair loss.  On Saturday my scalp tingled and tickled the entire day and by Sunday midday my hair started coming out. More is falling out each day- the shower floor, the soap, my body, my towel, the sink, my pillow… all have hair all over them each day.  My hair is so thick that the loss is amazingly not noticeable yet.  Joe helpfully wondered aloud if it might merely thin to the thickness of that of a normal human, hah!  He might be right but I don't think I can stand waiting to find out.  The bald heads of chemo patients always look so smooth and clear to me that I never thought about the itchy, sore, tingly feeling of a lot of hair falling out every which way. And I definitely didn't think about the inconvenience of it happening all over the place. It actually feels like a little pinprick when I lean my head against a chair back or a pillow and the hairs that are detached but still hanging out with the others are poked into my scalp.  I think I hear our clippers calling my name and I know two little boys that would love to lay into my head with them for a change. 

Infusion #4 yesterday with Abraxane and Herceptin was uneventful. It's a little anti-climactic at this point. My white blood cell count was about the same as last week, so good news that it's holding steady.  I'm excited to be nearing the halfway point and we remain confident that I'm getting good care. I'm hanging in there with less than ideal sleep; the inconveniences for me have been so minor compared to what many others endure. 

Thank you for caring and supporting our family in so many varied ways- they all make a difference! 

Update 20

Update 20

Chemo infusions:  3 down, 9 to go!

My white blood cell count today was low for the first time since I began Monday labs but it wasn't so low that I couldn't receive my infusions so we forged ahead.  Tuesday infusion appointments are scheduled for midday but we're learning that things don't really get underway until early afternoon anyway for various reasons and delays… check-in, vitals, pre-meds, waiting on oncologist approval, super expensive drugs not being mixed by the pharmacist until the patient is prepped and ready to immediately receive them, etc…

I felt pretty good between the second chemo treatment and today.  For the second time, my vision blurred almost exactly 48 hours after the infusion but this time it wasn't as severely and it cleared up faster and more completely.  I also developed an itchy rash over the weekend that started on my forehead and spread down the sides of my face, my nose and onto my cheeks.  It is bizarre how suddenly these things crop up.  Oh, I almost forgot sporadic bloody noses are in the mix too. It will be interesting to see what this next week brings… at this point smoke could start coming out of my ears and I don't think I would be surprised.

The half steroid dose worked pretty well. The steroid is given as an anti-nausea pre-med.  I haven't felt sick to my stomach exactly, but halving the dose did bring about some elevated stomach awareness. I wouldn't trade that for the half night of sleep it also brought, which was a welcome improvement from the night of no sleep that resulted from a full dose. 

I guess I won't qualify for any halls of fame with steroid use on my record now, but the boys are treated to some highly animated reading aloud on Tuesday nights from my energy swell.  I haven't timed it but I think I'm folding laundry nearly twice as fast as well.  

I am woefully behind on thank you notes but I aim to catch up this week.  We are immensely thankful for the meals, cards, texts and well wishes. Please keep sharing about this 35 year old you know with breast cancer so your family and friends will be encouraged to screen early and annually... 

Update 19

Update 19

Chemo infusions:  2 down, 10 to go!

Treatment today was uneventful, just the way we like it.  

I didn't sleep much after treatment last Tuesday, probably due to the steroid that is part of pre-medication before my infusions.  We cut the steroid dose in half for today so I'm hopeful sleep will be better tonight.  I have felt more tired than usual as a side effect from treatment, but it is mild compared to the fatigue I will likely develop as time goes on. Last Thursday morning I developed sudden onset blurry vision.  We didn't have that on our radar as a side effect and it was unsettling.  It was severe enough that it wasn't safe for me to drive for two days.  It is an uncommon side effect but we have been advised not to worry about it (stop researching seeing eye dogs and cancel Amazon Prime order of long white cane) and to expect my vision to return to normal at some point. It is much better now but still hasn't resolved completely.  

Right now I have blood work on Mondays and infusions on Tuesdays for the next 10 weeks. The infusions are midday and should normally take about 2 hours start to finish. If my blood cell counts are not high enough on any given week for me to receive an infusion, we will get off schedule but we're taking a lot of precautions to keep germs at bay (I have experience in this area) and we're assuming it will all work out.  If a change needs to be made, we'll roll with it. We are getting a lot of practice rolling… 

Thank you all so much for your love and support.  We are lucky, lucky people and we know it. 

Update 18

Update 18

Chemo infusions:  1 down, 11 to go!

This morning we went over a few studies and finalized a new plan with Dr. Soule at LMH.  After deliberating between Taxotere & Abraxane, we are going to try Abraxane.  Abraxane is a form of Paclitaxel, as is Taxol (the drug we tried last week that I reacted swiftly and negatively to) but unlike Taxol, the Abraxane is a suspension, not a solution. My reaction was to the solvent used to make Taxol. Abraxane doesn't utilize a solvent, it is delivered as protein-bound particles that are suspended in saline. Once in my bloodstream, the protein will dissolve and the drug can get to work. 

We had been so excited about Taxol because of its low toxicity and its history of being the best drug to pair with Herceptin (the drug I need because of HER2/neu positive receptors on my cancer cells). Herceptin efficacy is important to us because it's the drug I really need, I'm only taking chemo in support of the Herceptin.  

We feel good about choosing Abraxane because side effects are similar, or milder, to what they would have been with Taxol, and it should work just as well with the Herceptin.  

I am happy to report that I just finished my first Abraxane infusion without incident (I'm writing from my treatment room); makes for a much calmer Tuesday than last week!  Herceptin infusion #2 is following now.     

My port is still comfortable and I have remembered the numbing cream every time; it is applied at home before I head in for treatment. They told me to put a nickel size amount on so I go for a quarter or half dollar size for good measure.  Just as a PSA, if you were to put the cream over an area closer to dollar bill size, the nurse could tell what you did because it pales your skin. I haven't done that, it's just a hypothetical… 

I'm so relieved to send out a happy report today and I'm hopeful that I'll feel good and rest well the rest of this week.