Back to Work

First and foremost I neglected in my last post to mention a HUGE event that happened on Thanksgiving.  For those who don't know me well, I have always had long hair. I have chopped it off a few times--like when I left for the Peace Corps I cut off 26 inches.  Always donating it to Locks of Love.  As I will be losing my hair with chemo, I thought I might as well donate what I have before it goes to waste. My hair isn't currently as long as normal, just barely half way down my back. Which for me, is medium length.  My sister-in-law is a hair dresser and my 18 year old niece is in beauty school.  My sister-in-law did the cutting and my niece the color.  That's right color! I have never in my life colored my hair. It is dark brown, and aside from making it darker, coloring would require bleaching. I have always been way to anal about how healthy my hair is to let bleach anywhere near it. But, I decided as its all going to fall out, might as well go out with style.

We cut off 15 inches, more then I expected.  My sister-in-law gave me an a-line bob (not sure how you write that).  It's nice to have less hair to worry about.  Not that I ever put much effort into my hair. I have long hair so I can wear it in braids, ponytails, and buns.  :)  My niece put purple, teal, and silver stripes in my hair.  My son LOVES my hair. He is fascinated that it is colorful.  I pull it all in front of my face and say, "I can't see, where are you?" He loves it. He clears my hair out of my face and asks to do it again.  My husband, always a fan of my long hair and a proponent for not cutting it, likes it as well.  Good thing as its going to be short for a while!  Really short as it grows out.  Right now, is the shortest my hair has been since I was an infant.  Post chemo will be a new experience in how people with short hair function!!

As the title of this post suggests, I went back to work.  Not so much TO work but working. I am very blessed to have a job where I can telework.  So much is done on Skype.  We have team members in our main office in Arlington, VA, as well as in Massachusetts, North Carolina, and California.  As my immune system is low, and it is flu season, I have to be really careful. I already live with a 2 year old petri-dish, going to an office would be VERY bad.  In a 3 week chemo cycle, the middle week is called your Nadir. It is the week when your white blood cell counts are lowest and you need to be most careful. I hardly set foot out of the house all that week.  The next week I ventured to the office, wearing a mask, to sit in on our team meeting. Wearing a mask makes me feel claustrophobic--i hate breathing hot air.  But, the LAST thing I need is to be sick and have to postpone a treatment. It was nice to get out and see people.

I have to work at least 60% time to keep my health insurance, so that means I get 5 days off for each cycle of chemo.  The cycle is 3 weeks long.  This first time, working was harder then expected.  I can't be sure if its the pregnancy or the chemo, or the disastrous combo of the two--but my brain is a bit fuzzy. As both are known to make you feel a bit off mentally, the two together is just rude.  Its hard to focus--and then being exhausted and sick, well it was harder.  The third week things began to improve.  I could feel myself getting stronger.  My blood work came back from my first chemo.  My immune system  bounced back just fine--all normal.  My red blood cell count dropped a bit.  Small amount. Not because of lack of iron, but because my bone marrow is not keeping up with increased need for red blood cells.  But it was a minor drop. They'll keep an eye on it as I progress through more treatments.  It is a bit more of a concern for me, being pregnant anemia can have an impact on my growing baby.  If things get bad, I will need a blood infusion.  But that would be months down the road.

Speaking of baby, we had our 20 week ultrasound.  The baby is growing very well, is perfectly healthy. We had an extensive ultrasound, and everything checked out.  And--we learned its a boy.  A healthy baby boy.  :)  We also learned that this little boy will have more doctors appointments then me before he is born.  For now, he will be checked every 2 weeks, once by my OB then 2 weeks later by a neonatologist.  Then, after 28 weeks pregnancy he will be checked every week!  Busy busy boy.  But, I know he is in great hands.

As my 3rd week of my first cycle of chemo comes to an end, I prepare for number 2 and wonder what will be different in the next round.  

3, 2, 1 . . . . boom.

Having chemo for the first time is like waiting for a bomb to go off.  They prepare you for all the possible side effects. The ones that are almost a guarantee (exhaustion) and those that are rare (nail changes, etc).  You talk to others that have gone through chemo, you hear stories of those who were up and practically back to normal in 3 days and those who were down in bed for 2 weeks. You wait and wonder.  When will the symptoms come on? Which ones will I have? How severe will they be?  Will I be able to work next week? Take care of my son? Eat? All these questions and more swirling around in your head as you wait.

For me the first thing that hit was exhaustion.  As I said I felt fine Monday evening, but Tuesday morning the exhaustion was setting in. I slept all day, woke for a few hours in the evening to see my son, then back down and slept all night into the late morning.  It was strange to sleep that long and wake up just has exhausted.  It was an exhaustion like none other.  It was like having the flu during finals week times 10. My organs felt tired.  I didn't know I could feel my organs until that moment.  I slept all day until Tuesday evening. I then left with my little brother to go to my other brothers house for Thanksgiving.  I laid on the couch and watch my son be entertained by his cousins.  It was nice.  But still, no other symptoms were coming. I was still waiting to see if a bomb would go off.  Would my mouth break out in sores?  Would my hair fall out this treatment? Would nausea set in?  As the days progressed, exhaustion proved to be my foremost symptom.  I felt nauseated once, but in my case, that could have been the pregnancy!!

Though the nausea didn't prove to be an issue, I did have NO appetite.  It was easy to forget to eat, a first for me.  Nothing sounded good and I just wasn't hungry.  I had to force myself to eat.  Chemo burns through your protein. You need a lot of protein--which is hard because pregnancy is hard on your kidneys.  A high protein diet is ALSO hard on your kidneys. I need to find a balance of getting the protein I need to replace the cells being destroyed by the chemo, but not over tax my already working overtime kidneys.  I do this with no appetite by drinking spinach protein shakes every few days.  Spinach, blueberries, milk, and whey powder.  Not awesome tasting, but not that bad. I can usually get it down.

As the days went on the exhaustion slowly decreased, but a few minutes of activity and I would need to lay down.  What was unexpected was the mental exhaustion.  Emotional exhaustion is something I know I'll be facing throughout, but to be mentally exhausted--is a strange feeling.  They warn you about it, "Chemo fog," and it sounded a lot like pregnancy brain.  So now, my poor brain has 2 strikes against it--chemo and pregnancy.

Monday, December 2, I had to return to work.  Though i wasn't going into the office, I was able to telecommute, I really worried about my ability to work.  Plus--were there still symptoms to come? Or, was I over the worst of it?  No one can say.  

First Chemo

I realize I am LONG overdue for an update. My excuse is being diagnosed with breast cancer doesn't make the rest of your life stop. I am still mom to a very active fairly demanding 2 year old. I am still a wife. I still have a home and laundry.  I still have to work, though, clearly not full time.  I am still pregnant.  Juggling all these plus the side effects of chemo is difficult at best. I have much to say--but will spare you all of it in one post and will catch you up over the next few days.

Monday, November 25th, 9:00 am my first Chemo treatment. I was 18 weeks pregnant.  I was very nervous, mainly because it was a big unknown. My port was still very sore, and I was worried how that was going to feel.  And then of course, what were the medicines like.  The whole thing a mystery.  My husband and I showed up at the hospital infusion center and checked in. We were asked to take a seat in the waiting room.  We sat. We waited, not sure for who or what.  A few minutes later a wonderful nurse came out to get us.  She knew everything about me, and most importantly that it was my first time.  She was patient and answered every question I had with clear answers.  No sugar coating of the hard answers--which seems to be the protocol here.  I like it, most of the time.

I take 3 medicines.  This first treatment was a little different, as I would all the medicines in one sitting because it's Thanksgiving week.  After this, I will have two medicines at the infusion center and the 3rd will be infused over 3 days. I will wear a pump home and return 24 hours later to have it refilled.

The nurse cleaned the skin over the port.  The steri-strips and glue (instead of stitches) were still in place.  She used a solution to remove the steri-strips and sterilize the area.  Then, the needle.  I was very nervous but it hurt FAR less then getting a poke anywhere else.  I was very very happy, and figured it will only get better when the area is less sore.  Before they give you the chemo drugs they give you 2 powerful anti-nausea drugs, one of which is paired with a steroid that improves its effectiveness.  Once those are in, the chemo begins.  For no real reason I was nervous.  I know as the drug goes in it won't hurt, and I won't immediately feel the effects but it hits home.  I am starting chemo.  I have breast cancer and I am pregnant.   Its a realization I think will hit me at different moments over the coming months. I am still in shock, so wondering how this became my life?  How did I become one of those numbers? How did I become one of those pregnant with cancer?  There are a surprising number of us. Clearly we aren't the majority, but my oncologist has treated 6 pregnant women with breast cancer in the last 15 months alone.  A very high number, higher than average.  It concerns her.  But, how did I become one of those?  How is missing work day after day for different tests and different doctors appointments my new life? How is my baby? Will I be able to eat healthy enough to keep up with his/her needs?  Endless questions--most with no answer.

My husband and I decided to watch a movie as the drugs dripped in.  We watched on the I-pad.  The  nurse coming and going.  Part way through my oncologist came by to check on me.  She hadn't even finished the sentence, "How are you?" when I burst out sobbing. She walked away to give me a minute.  She came over and we talked for a few minutes.  It was nice. I am blessed with an amazing team.

Several people asked if I had gotten a second opinion, and to be honest it hadn't crossed my mind.  They were very clear about the aggressiveness of my cancer and the urgency with which i needed to start treatment.  But, I decided to ask my oncologist if I should have gotten a second opinion.  She said she did it for me. There are only a handful of oncologists in the area that treat pregnant women with cancer. They all talk about all of their cases and they all collaborate and work with MD Anderson in Texas.  It was nice to know.

Finally, 5 hours later, we were finished.  It won't take this long in the future, a lot of questions and discussions lengthened the process.  I felt fine.  Hungry. My husband and I decided to go to Olive Garden.  We had a wonderful late lunch and headed home.  It was a strange day.  Clearly a huge day in my life, but it passed so uneventfully it was strange.  That evening i was more tired then normal, but that could be stress or pregnancy.  I played with my son and we all went to bed. 

Port is in--

Well--I officially have a port.  It was by far the worst experience so far. I know--many more experiences to come.  But- - -  this sucked. They would only give me local for where I was getting cut. No anti-anxiety meds, no help you feel sleepy drugs because of my pregnancy.  It was just a horrible 45 minutes of holding my head in a weird position and trying to focus on my breathing.  I know the port is a wonderful invention that will save my arms from 1,000's of pokes and I am grateful to the people who invented it.  But, getting one put in is a horrible experience. They push, pull, and cut their way through the muscles in your chest.  You go home looking and feeling like someone punched you in the chest.  

For those of you unaware, a port is a small device implanted UNDER your skin.  It has a small catheter that feeds into a vein in your neck, then feeds to just above your heart.  It is used to infuse medicine as well as draw blood.  The picture below is the exact model I have.  The little plastic part in the middle is wear they poke the needle.   




To insert it, they make an incision then create a pocket (I have NO IDEA how that works), and insert it into the pocket and close up.  It was NOT a pleasant 45 minutes--but I am sure i have plenty of bad days ahead.  This seemed to be more of an appetizer of what is to come.  Right now what lies ahead is is all unknowns.  I am sure in a few weeks as all of these firsts are checked off my fears will abate to a large degree. There are always unknowns, but I have so many questions around how I will personally react to chemo.  All to be answered in the coming weeks and be recorded here. 

Oncologist

After I had put my son to bed, letting him sleep in my bed—I would need his cuddles that night, I started the phone calls.  As fate would have it, I had a horrible cold and had lost my voice. The crying wasn’t helping.  I tried to call my mom and dad—my mom answered and she couldn’t hear me.  I boiled a pot of Calming Tea, hoping it would help my voice as well as my nerves.  I keep trying to process what I have heard and feel almost nothing—as it can’t be real.  I am sure tomorrow when we talk with the doctor, we will learn it’s something not serious—it is somehow some form of cancer that isn’t serious and doesn’t need all the “usual” treatments. 

While I drink my tea I Google for advice on how to tell people you have cancer—I find only resources on how to tell children.  As my son is 2, not really helpful.  I finish my tea and call my mom—one of the worst phone calls I’ve ever had to make.  For some reason, in that moment, I am missing my Gram (my mom’s mom) immensely. I wish she was here to advise me and help me.  The call with my mom and dad goes as well as can be expected. I promise to email the family an update after my doctor’s appointment the next day, Wednesday.  I email my boss who is in Rome, and feel bad she has to hear over the internet.

Wednesday morning I had to go to work—I was supposed to be preparing for a trip to South Sudan in 2 weeks’ time, I would need to tell my work right away. I had no information outside of the fact that my biopsy was positive—I have breast cancer.    I talk to my supervisor, and tell her before our team meeting.  I have no voice, so I have to type it up on a paper and hand it to people. It makes it feel even more fake—more unreal.  Silly even.  I have someone tell the team for me in the meeting. It still feels like it is some joke, or not serious, or not happening period.  I leave that meeting early to go see the breast surgery specialist who had diagnosed me. 

I learn from the wonderful and caring specialist, Dr. Martin—I have Invasive Ductal Carcinoma.  She says it’s common, just not at my age (36).  She tells me up front, you can have chemo starting your second trimester of pregnancy (which at 17 weeks I am well into). I am floored at this, because I thought my diagnosis meant choosing—treatment or baby?  I am absolutely in gratitude beyond belief for the researchers that have brought us this far in cancer treatment. I learn it is Inflammatory Breast Cancer, which is why I have no lump, no tumor—just redness.  I learn my cancer is a “triple negative,” a bad thing.  I learn that if it wasn’t “negative” the drugs used to treat it are contra-indicated in pregnancy, so better for me not to have to make that choice. I learn about the Ki-67 scale that determines aggressiveness of cancer. Zero percent is non/least aggressive, 100% is the most aggressive. I am a 90%.  I learn that, though aggressive is bad, it does mean chemotherapy is more effective. 

Each bit of news weighs heavy with fear of the unknown—so many new vocabulary words. So many questions I struggle forming them.  When will I start Chemo? Radiation? Those are to be answered by the oncologist on Friday.  I learn I will have at minimum a single mastectomy, possibly double.  Genetic testing will inform that decision—do I carry the BRCA1 and 2 genes?  They call it the Angelina Jolie gene, thinking I haven’t heard of it except in reference to her—that makes me laugh.  She informs me trying to save the breast would be a bad decision. I tell her I don’t care, cut it off—I hate it right now.  I’m told I’ll lose my hair.  It doesn’t even phase me—ironic as for so many years I was meticulous about growing my hair long and keeping it healthy.  I decide to chop it off and donate it before it falls out. It will be easier to clean up short hair.

We leave with pamphlets, appointments, and tears in our eyes. My wonderful husband holds me and assures me we will get through this and it will be fine. I believe him, but I’m worried about all the steps in the middle.  I’m worried how much of a toll this is going to take on him and our son.  Our son who won’t understand, “Mama is too sick to play.”  What about our little baby? Striving to grow and be healthy? Our miracle baby, who brought about this diagnosis.  How will he/she be impacted?  Will I be able to keep up a healthy diet to assure a happy life for them? 

Thursday I sleep most of the day trying to get rid of my cold and have a voice by the time I meet with the oncologist on Friday.  I was supposed to be at a Home Fortification-Technical Advisory Group meeting, and had been excited to go. All day I try to let this sink in—but it doesn't go. I email more people—those who knew I was getting the biopsy.  All those people, who along with me and my doctors thought it was just an infection, a cyst, or some other random thing—anything but cancer.  I reach out to a dear friend who has Leukemia and is getting a bone marrow transplant right now. She has 4 little ones at home. Her journey is far more difficult than mine—but I am hoping for some advice on how to handle little ones you can’t explain things to.  I reach out to another friend, the wife of a colleague, former professor, and friend. She is just finishing up treatment for breast cancer.  Both respond with amazing support, love, and advice.

Friday we meet with our Oncologist Dr. Denduluri.  Another amazing person, she came in on her day off to see me. She, just like Dr. Martin, takes the time to go through each thing, write notes FOR US, and answer each and every question we have.  We learn I will be getting 6 doses of chemotherapy starting next Monday (November 25^th), and happening every 3 weeks until I have reached 36 weeks in my pregnancy. Then, depending on my health, I will either be induced or have a C-section and they will take the baby early. Following that, I will have 4 more doses of Chemo, again every 3 weeks; then a mastectomy and 6-8 weeks of radiation.  Then—hopefully this will be the end of my cancer experience. 

It is overwhelming to hear it needs to happen so fast. No time to process, no time to plan, no time to do anything.  I am set up with a barrage of appointments—echo-cardiogram, abdominal ultrasound, chest Xray, MRI of the spine, and placement of a port.  The port is a little catheter that will sit UNDER my skin for the next year providing direct access to my veins to give treatment and draw blood. It will save my arms from being poked 8,000 times—but for some reason it creeps me out.  I’ll probably laugh about that later. 

I attend a chemo class put on by the Virginia Cancer Specialists (the practice where my oncologists is based).  It is a very enlightening 2 hours. I had no idea how many myths I believed about chemo, mainly gleaned from movies—clearly a good source.  I probably won’t vomit, but will be exhausted. As I am pregnant, it will be harder on me then it would have normally been. Everyone is different—some people are sick for 3 days, and then can handle a fairly regular schedule (they are just tired); others are down for 2 weeks. The only way to know is to wait and see.  There is a PLETHORA of resources available for assistance. I am stunned at how many. 

As I write this, it is the end of Thursday. Tomorrow I get the port placed.  I was hoping to come back to work, but am told I can’t.  I've gotten some very good advice, including don’t Google anything and keep working.  I learned after I Googled the core biopsy; I never wanted to do that again.  And though the thought of working while on Chemo seems foreign and exhausting, the fact that at least a dozen people with personal experience have told me to, I assume it’s good advice.

To be continued . . . 

The improbable

It's mastitis! You have mastits. "But I thought you only got that when you are breast feeding!?!" I ask my friend. You can get it when you are pregnant.  I am very angry at this--what a shaft.  I go to my OB--yes, you have mastitis. Let's try this antibiotic. One week follow-up, nothings changed.  They decide I should be looked at by the breast specialist, thankfully right next store. I don't have time for this.  The doctor palpates and does an ultrasound, yes--you have mastitis. You have no mass, possibly a stubborn cyst.  Let's try X antibiotic, but to be safe and possibly check the type of infection, lets do a thin needle biopsy.  

New antibiotic in hand i leave--Two days later, the doctor, not the nurse calls. His voice is more shocked then I feel. "We found proliferative cells."  I have no idea what this means, but I know by his tone, it is not good.  He goes on that these can be normal with pregnancy, BUT pathology wants a core biopsy next Wednesday.  I cry on the metro home.  Strangers look at me.  I get home and go to Google.  Proliferative = cancer.  Then, STUPIDLY, I Google core biopsy and watch in horror as one is performed on a woman.

That next Wednesday, I head to the office.  I meet another doctor, he confirms its probably a stubborn infection--then reads the pathology report.  The look of confusion on his face is comical, and i laugh out loud.  Then another specialist comes in -- she looks at the ultrasound, palpates--"Yes, its an infection," then she looks at the pathology report. I laugh again as she makes the same face all 3 doctors made when they saw the report.  She was to perform the core biopsy--but as there is no mass/tumor it is determined she can't.  There is nothing from which to take a "core."   They decide to wait one more week to see if the infection clears up and to get me further along in the pregnancy--i'm 15 weeks at this point.  The next option is a surgical biopsy, and the further along I am the better.

I return one week later--it hasn't improved.  Surgery is scheduled for 2 days later, my choice. I am sick of thinking about this--this off chance of breast cancer, that everyone assures me is improbable.  I agree--what are the odds?!?! No mass-young age-no other symptoms.  It's an infection.  My doctor lets me know she may not be able to give me an answer, we may not determine the type of infection or cause of inflammation.  All she'll be able to tell me is its not cancer. That's an answer--ruling that out, so let's go. Friday I have a  surgical biopsy, finally get this thing over. I am to call the office the following Wednesday for the results.

Tuesday night, November 12 at 8:30pm the doctor calls.  My son is screaming in the background so I give him some chocolate chips--a rare treat.  He quiets down.  She tells me it's cancer.  She hasn't seen the report, pathology just called her. I am to come in the next day at 4:30 and meet with oncology Friday at 4:30.  Oncology--the word is very heavy with meaning and fear.

I call my husband and tell him to come home immediately. I go into the kitchen to put dishes away and start sobbing.  I'm hiding from my son, worried he'll start crying if he sees me cry.  My husband is home in a matter of minutes--he walks in the kitchen, my son trailing and I choke the words out, "It's cancer."  We go to the couch. He assures me it'll be fine, my son has is now in clear view of my sobbing.  I try and pull it together so he won't start crying, but he shocks me.  This little 2 year old comes over and kisses me on the cheek and whispers, "It be okay mama."  I laugh.  How do you argue with that?

To be continued . . .