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 . . .