Taxol #6 - Find Joy in the Journey

Halfway through my Taxol treatment.  I am taking the time to find joy in the journey every day.  

Last Friday (October 11) I had Round #6 of Taxol.  My blood counts were still looking strong, though I did have a slight scare.  The nurse was reading someone else's platelet count and she told me that my platelets were too low for treatment but that they were contacting a doctor to try to get me approved.  Turns out my platelet count was fine.  This is why they ask you a thousand times for your full name and date of birth.  I hope that the other person was able to get good news and the doctor approved their treatment for the day.  I can imagine that it would be pretty disappointing to be sent home once you get yourself there.

Sunday evening my stomach began to hurt again, just like it did the week before.  This week it dawned on me that maybe this was nausea and not the stomach flu.  I took a prescription nausea pill and it seemed to help.  I'll have to remember that 48 hours post-chemo might be a time that I should watch out for nausea.

I am still teaching and am thankful that I can fill my days doing something that I love.  I am thankful that I work one-on-one and with small groups of students.  I think that it would be really hard for me to sift through all the noise of a classroom of students on a regular basis.  I am finding little ways to write myself notes and reminders because I do find that I don't always remember the little things from one day to the next, which is something new for me.  I've always had a great memory.  I'm hoping it will return once weekly chemo is completed.

One part of my care that I haven't talked a lot about is the need for my body to go into menopause.  Chemo traditionally does this, but because one of my cancers is 30% Estrogen-positive, it is important that my body not ovulate ever again.  Once a month, I go to Blue Hill hospital so that the lovely ladies in the Specialty Services department can give me an injection called Lupron.  This shot suppresses my ovaries.  It also gives me crazy hot flashes for a couple of days.  At 34 years old, this is a really tough aspect of my diagnosis.  Owen came with me for that shot this week.  While there, one of the nurses gave him bandages and fixed him up so that he looked like he had a broken arm.  She was so good with him.  I'm so thankful for nurses like Vicki that work hard to make sure that Owen is comfortable going with me to these types of appointments.  The attention she gives him makes this a lot less scary for a 4-year old.  Instead of being scared, he gets excited about going with Mom to get her shot.

Here is Owen with his "injury".  I asked him what happened.  His response: "It's a long story." 😂

I really don't have a whole lot to say, but wanted to let you all know that I am doing well.  I know many of you are praying for me and I really appreciate that.  If you are looking to say a specific prayer, I am starting to feel the effects of five months of chemo and fatigue seems to really be hitting me harder this round than it has in the past.  Please pray that the fatigue lessens and my body is able to get good sleep at night.  Thank you!

Here are the posts that I have shared on my Facebook page this week for those of you not following my journey on Facebook:

Day 6: Diagnosing IBC is difficult because it is not easy to see on a mammogram.  This is why my doctor needed an updated MRI for me and why it was important for her to fight my insurance's denial of the procedure.

Day 7: Only 10% of women with IBC have a palpable lump.  I was one of the 10% that did.  I am thankful I did because I think it "sped" up my diagnosis.  Without the lump, I'm not sure how long it would have taken.

Day 8: If you are worried you have signs of IBC, make a doctor appointment right away.  Don't rely on your doctor to have knowledge of IBC.  If you are scared you may have it, you need to bring it up with the doctor.  IBC progresses very quickly.

Day 9: IBC skin thickening is more easily visible through MRI and ultrasound images.

Day 10: IBC cells block the lymphatics around the breast.  This results in the breast becoming 2-3 sizes larger than the other breast.  This happens very quickly.

Day 11: Oops - I missed sharing a post this day... chemo day!

Day 12: Common misdiagnoses for IBC: mastitis, abscess, reaction to a bug bite.  I had small bug bite looking marks in early March.  I showed them to my doctor.  She didn't know what they were.  Now I know that they were skin metastases, the first signs of stage 4 cancer.

Day 13: Never All Better - This is a link to an article I shared.  This mom has stage 4 cancer and is trying to figure out her new "normal", one in which she knows she will never be considered "all better."  Once you have stage 4 cancer, you will be in treatment for the rest of your life.  I'm still not sure what that will look like for me, but I'm hopeful that there are a lot of really good treatments that will keep me alive and well for many more years.  Still, it's hard to think about how my diagnosis has robbed Owen of so much innocence.

Day 14: IBC care is different from other types of breast cancer.  See an IBC specialist for proper care.  This is why I go to Dana-Farber.

Day 15: Peau d'orange (skin looks like an orange peel) is a physical symptom of IBC, but not everyone gets this symptom.  I didn't have it when they first started talking about the possibility of inflammatory breast cancer.  By the time I went to Dana-Farber, I did have this symptom.  IBC changes very rapidly.

Day 16: Trimodal care - with IBC you need chemo first, followed by a special kind of mastectomy called a non skin sparing mastectomy, and finally radiation.  Due to the high rate of recurrence, reconstruction is not an option for at least a year and now they are recommending waiting at least two years.  Many surgeons do not know about the specifics for IBC and offer reconstruction at the same time as the mastectomy.  This is why my surgery will take place at Dana-Farber where the surgeon will be very familiar with the specifics of IBC.

Day 17: I forgot to share a post.

Day 18: A stage 4 diagnosis means an individualized approach to Inflammatory Breast Cancer.  Thankfully my case is improving so that surgery and radiation make sense.