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.