My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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Thankful

When you have cancer, it’s so easy to focus on what you have lost and what you don’t have anymore.  Trust me.  I know.  I do it constantly.  While I know it’s not helpful, there are days where I live in a constant, “woe is me” state.  It’s important to have those days.  They’re real, honest depictions of living with disease.  But when the dark clouds pass, we get to look at our lives and see all of the great things we have.  Thanksgiving is a perfect excuse to do just that.

Last year I made a long list of things I was thankful for.  Most of those things are still true.  I’m still thankful for my family and friends.  That is a given.  I’m nothing without them.  I’m thankful for my husband.  We’ve had a rough year.  Cancer is not easy on a marriage.  But we are figuring it out and I’m thankful for that.

I’m thankful that I have eyebrows again and even though my eyelashes are much thinner than they used to be, I’m thankful that they are here.  I’m thankful that I have found a new physical therapist who seems to be helping to manage my lymphedema.  I’m thankful to have work in wonderful schools and work for so many amazing people and organizations.

I’m thankful that, as of yesterday, I am finished with the infusions for my clinical trial!!!  Woot-woot!!!  November 25 has been a date stamped on the calendar of my brain for more than a year.  This date, which once seemed so far off that I was sure it would never come, happened!  Yesterday!!!!

But as I was in the waiting room to see my oncologist, celebrating by myself (unlike my last day of chemo, I went solo for this one) I noticed new people I hadn’t seen before.  They had that look in their eyes.  Wet from holding back tears.  I knew that look on their faces and the faces of their loved ones.  They were summoning everything they had inside them to hold it together.  Maybe yesterday was the day that they got the results of a mammogram.  Maybe it was the day that the find out what is in store for the next year.  Maybe it was their first day of chemotherapy.  I saw them clutch their tea and try to not make eye contact with the others in the waiting room but then try to catch a glance of those who sat with them.  Do they have the answers to what life will be like?  What it will look like?  Caregivers clutched the hands of their wives.  They got up, suddenly hypersensitive to noise when a secretary was clicking her pen.

I remember all of this so well.  This might have happened to me 13 months ago but being in that room brought it all back for me.  It was so familiar.  All of it.

My heart is with those people who are going into this holiday season with cancer and illness, whose lives are changing forever.

An hour later, I had gotten my infusion, my last free massage and it was time to say goodbye.  Goodbye to Nina, my chemo nurse.  Nina was my cancer mama.  We developed a very close bond.  I love Nina because she is caring but also firm, just like a mother.  I could talk to her about anything that was going on in my life and she wouldn’t sugar coat it.  She’d let me know what was worth worrying about and what I needed to let go.  I knew I could count on her to take care of me through everything, and she did.  Because your nurses aren’t just there to make sure you get your medication and don’t have allergic reactions to them.  They are so much more than that.  Nina was so much more than that to me.  I am so thankful to have had her in my life and to have her as a friend.  We said goodbye.  There were tears.  But I know I can come back anytime I want but “just to say hi.”

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Me and Nina.  The best nurse ever!

Nina walked me out, holding the door open for me to leave and then closed it behind me.  There was a ritual to it.  She was ushering me out of this life that I have been living for so long and telling me not to come back.  But to go out and live.  To live my life again.  That simple act of opening and closing the door was so meaningful.  So emotional.

Afterwards, I left the cancer center.  I won’t need to be back for three months.  Three whole months!!  I am thankful for that.

I celebrated by going to a nearby  coffee shop and getting myself a cappuccino and a warmed up chocolate croissant.  Of course, I did work while eating it.  Life must go on.  But it was still a nice treat.  I am thankful for chocolate croissants.

Now, it is officially Thanksgiving.  Later we are going out to eat.  After the year we have all had, no one felt like cooking.  We are all so tired.  But we are going to the restaurant where my husband works so, in a sense, we will all be together.

This morning, the thing I am most thankful for in this world, Oliver and I got to spend some quality time together.  He wanted to take the Q train over the Manhattan Bridge to Oliver Street.  Yes, there’s an Oliver Street in Chinatown so, that’s exactly what we did.  Then, we had a very non-thanksgiving lunch of oxtail soup with noodles.  Yum!!!!!  I was thankful for that yummy, fatty oxtail.  Last Thanksgiving I couldn’t eat.  That will not be the case this year.  I am thankful for that.

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Looking out onto the Manhattan Bridge

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Watching the cars get on and off the bridge.

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Looking at the map for Oliver Street.

And finally, thank you to all of you who read and comment on my blog.  I’m so thankful to have people who support me through this experience.  I’m also so lucky to be part of a community of strong, smart, powerful women who have been through or are going through cancer treatment and share their experiences with me on their own blogs or through comments.

Happy Thanksgiving!

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Summary of Side Effects From 4th Chemo Treatment + Start New Round of Chemo

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It is with great pleasure and celebration that I announce that I made it through my first round of chemo.  When I heard that I would only need 4 treatments of AC, I thought to myself, “Well, that’s not so bad.  I got this!!!!!”  I really thought that I could avoid many of the side effects.  And mostly, I did.  I never got nauseous, I never vomited, up until the end I didn’t get mouth sores, I kept a good amount of my appetite and was able to work.  But I wasn’t left unscathed and I underestimated the power of the poison, even with just four treatments.  AC is the hard one, the Muhammad Ali of my breast cancer treatment.  I’ve been knocked out a little bit, but it’s in my past and I’m moving on to the next step.  Here are the side effects I experienced since my last treatment.

  1. Fatigue:  It really, really sucked this time.  It began much earlier and lasted much longer.  I needed a lot of support for caring for Oliver and doing household errands.  I still worked but at the end of a work day, I was pretty tuckered out.  They said the fatigue would be cumulative and they were right.  The end was the hardest.
  2. Diarrhea:   I had it pretty bad this time and probably had a bit to do with the fact that I still had trouble drinking and hydrating.  It lasted for about 9 days and I’m finally on the mend now.  It was extremely unpleasant but is finally under control.
  3. Loss of Appetite:  I really never got hungry this time around.  Rarely.  I still ate small, periodic meals because it didn’t turn my stomach to do so, but I could have gone without if I didn’t pay attention.
  4. Mouth Sores:  I’ve had a few in the past but they were mostly like canker sores and I would only get one or two that didn’t interfere with eating or talking.  That was not the case this time.  I got a nasty huge one on the side of my cheek and then under my tongue.  I was careful about what foods I ate, making sure they were low in acidity and rinsed with salt water several times a day.  They were very uncomfortable and I was aware of them constantly.  I’m so grateful that I experienced this only once and that I’m not likely to get them again on my new chemo treatment.
  5. Infection:  My last post was about about the infection I got in my toe which, everyone agrees, is really, really strange.  But it happened and the good news is that I had it taken care of right away with soaking, ointment and antibiotics.  It is of the utmost importance to take care of these things as soon as possible because if a local infection becomes systemic, it can delay treatment.  No one wants that.
  6. Low Red Blood Cell Counts (Anemia):  Chemotherapy attacks fast growing cells and those include your white blood cells (protects your immune system), red blood cells (brings oxygen to your heart and brain, also contains iron) and platelets (controls blot clotting).  Luckily, my white blood cell counts are doing well but my red blood cell count are low which explain my fatigue, weakness, shortness of breath when I exert myself and dizziness when I stand up from a seated position.  As of right now, they are recommending a high iron diet but, there’s no guarantee that this will help.  We are taking the position that it doesn’t hurt.  So tonight I’m making my famous lentil stew, making leafy greens with citrus (which helps with the absorption of iron) and making meal plans that are high in iron.  They told me to prepare for the fact that this might not work and that my counts might remain low for the remainder of my treatment.  If it gets worse (and they really haven’t discussed this with me yet, they take a “cross that bridge when we come to it” approach) I might need a blood transfusion.  Let’s hope it doesn’t come to that.  They are not recommending supplements at this time.

My new round of chemotherapy is Taxol, which I am getting once a week for 12 weeks, as prescribed by the clinical trial that I am taking part in, which began yesterday.  The medication I’m receiving as part of this clinical trial is called Herceptin (it is an antibody, not chemotherapy), and I will be getting this in conjunction with Taxol (12 treatments) and then once every 3 weeks for about a year.  I will go into this in more detail in my next post.

Here are the possible side effects of Taxol, although I’m hoping that since I’m getting it for 12 weeks and not every other week, for 8 weeks (this means there’s less toxicity) that I will not have a strong reaction.  This is what my nurse, Heidi (hi, Heidi!) wrote to me in an email and I’m copying and pasting it here:

Ok….here’s the scoop on Taxol

1) There is a risk of hypersensitivity (allergic reaction).  The reaction is related to the preservative that the medication is mixed in (CREMOPHOR).  You will receive medications [diphenhydramine

(Benadryl), corticosteroids and Pepcid] prior to the infusion to decrease the risk of a reaction.  For the first 2 infusions, the nurse will give you a “test dose” whereby you will get small incremental doses over a period of 10 minutes.  Typically, if you don’t show signs of a reaction in that time, you will not react.  Signs of a reaction can include: shortness of breath or difficulty breathing, chest pain, rash, flushing or itching or a decrease in blood pressure. If you notice any changes in how you feel during the infusion, let your nurse know immediately. The infusion will be stopped if this occurs and additional medications will be given to stabilize you (solucortef).  Once stabilized, you will be rechallenged and typically the infusion can be completed without incident.

2) Peripheral neuropathy (PSN) is a toxicity that affects the nerves (irritation or damage to nerves). It causes a numbness or tingling feeling in the hands and feet, often in the pattern of a stocking or glove. This can get progressively worse with additional doses of the drug. In some people, the symptoms slowly resolve after the drug is stopped, but for some it never goes away completely. You should let us know if you experience numbness or tingling in the hands and feet and if it progressively interferes with your ability to perform fine motor tasks (buttons, earrings, necklace clasps) or if it interferes with ambulation. This may require a dose reduction.  There’s not much that can be done to prevent this.  Some say vitamin B6 or L-glutamine are effective – though there’s no compelling evidence that it works.  Icing hands and feet during treatment may be effective.  There are some medications that can be prescribed to deal with pain related to PSN but we’ll cross that bridge if we have to.

3) Myelosuppression (lowering of blood cell counts) – this doesn’t happen as severely as with AC.  We will check counts every week.  If by some chance your white blood cells trend lower, we can give you a shorter acting version of neulasta (neupogen).  But most patients get through the treatment without a problem

4) Nausea – not so much.  We don’t premedicate because the risk is low.  Have the home meds on hand if you’re one of the 10%…and follow the same rules for nausea prevention (small frequent meals, hydration, etc)

5) Diarrhea – could happen.  Keep immodium (over the counter anti-diarrhea agent) on hand in case you need it.  Typically take 2mg with loose stool.  If it is persistent let us know….risk of dehydration and electrolyte imbalance with persistent diarrhea.

6) Muscle/joint aches – we’re not seeing this as much with weekly taxol (more so with dose dense every other week Taxol).

7) Nail changes – finger and toe nails may become brittle; nails may become dark (looks like bruising) and may split or separate from nail bed.  Icing hands and feet, again, may help in prevention.  Vinegar/water soaks (1 part vinegar, 4 parts warm water) are effective for management.  This will resolve after treatment though some people notice ridges in their nails going forward.

Then there’s the fatigue….which will continue….but shouldn’t debilitate you….    Hair will come back after taxol is done (about 4-6 weeks after you will start to see some growth)

And this is what she had to say about Herceptin:

Herceptin – should not give you any trouble.  We will do serial echocardiograms (every 3 months) to monitor cardiac function.  If there is a significant deterioration from baseline (which is reversible!) we may hold a dose, repeat echo and then restart treatment.

Some people have an infusion reaction, usually marked by shaking chills.  This is because Herceptin is an antibody and like any antibody that is foreign to self, the body may react to it.   If this occurs (rare!), we’ll give some meds to stabilize and then it should never happen again.  First dose is given over 90 minutes for this reason.  Subsequent doses are administered over 30 minutes.

So, we’ll taking things day by day, week by week because, really what choice to I have.  But I’m in the home stretch for chemo treatment right now.  I still have a long way to go, but at least I just to check one more thing off my list and that’s something.


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Chemo Date + Half a Dozen

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Yesterday was an overwhelming day.  I did my egg retrieval in the morning then in the afternoon I met with my oncologist to set up my treatment plan.

My chemotherapy is going forward as planned and I get my first treatment on October 15.  My first 4 treatments are AC: Adriamycin and Cytoxan.  This stuff is no joke.  Adriamycin is usually used in conjunction with another drug and is used to reduce the risk of recurrence of cancer in early stage breast cancer (my situation), to shrink a large tumor before surgery or treat an advanced stage breast cancer.  Side effects include hair loss, nausea, vomiting and mouth sores, to name a few.  Cytoxan is a drug that weakens or destroys breast cancer cells by damaging the cells’ genetic material.  It can be taken as a pill or intravenously (which is what I’ll be getting, I believe).  Side effects include, low white blood cell count, loss of appetite, nausea, sores in mouth and irregular periods, to name a few.

My second round of 4 treatments will be Taxol.   This drug is given to reduce the risk of early stage breast cancer from coming back or when advanced stage breast cancer stops responding to certain standard chemotherapy regimens.  Side effects include neuropathy, vomiting and weakness to name a few.  

All of my side effects will be closely monitored by my doctors but they are what they are.  I’m in for a tough 16 weeks (1 treatment every 2 weeks) and I’m very, very scared.  Just like the countdown to my mastectomy, it’s time to start my next countdown to chemotherapy.

I still don’t know for sure about radiation but my oncologist is referring me to a radiation oncologist.  I didn’t know that I needed a separate doctor for this but I guess one doctor specializes in chemotherapy and the other in radiation.  I think it’s likely that radiation will be recommended so I’m preparing myself for this.  Radiation will be administered after chemotherapy is complete and will be for 5-7 weeks, 5 days a week.  It has side effects but mostly it is very, very inconvenient.  i’m hoping it can be avoided.

According to my pathology report, I am still HER2 negative.  I have been graded at a 1+.  But my oncologist said that while I’m considered negative at this score and therefore do not get Herceptin, there is a clinical trial happening right now where 1+ is considered “HER2 low” rather than “negative.”  The hypothesis is that women with this score might benefit from Herceptin in conjunction with chemotherapy treatment.  I’ll talk more on this soon but am strongly considering being a participant in this study.  But as of now, I do not qualify for Herceptin treatment by current medical standards and therefore would not be paid for by insurance.

This is a lot to swallow.  I know.  You should have seen me yesterday.  I was a mess.  I real mess.  I’m still not fully recovered.

On a positive note, I got a call from the fertility clinic today and out of the 10 eggs they retrieved yesterday, 6 were mature enough for freezing.  My doctor said that she predicted that we would get 4-6 eggs so we ended up on the greater side of the prediction.  A bit of good news.  I’ll take it where I can get it.

Just for fun, Ken and I were naming our eggs for future use.  What are they?  I’m not telling, but I’ll take some suggestions. Name my eggs!!!!!!!!

*All links were taken from breastcancer.org, a site that I find gives current and neutral information in language that is easy to comprehend.*