Bump in the Road (part 7)

March 12, 2020, my mom took me to the salon before it opened to have my head shaved. I was told it would take about 10-14 days for my hair to start falling out and I was at the 9-day mark. Instead of having big clumps of hair falling out, I opted to shave my hair. My stylist let me come in before they opened for the day to give me some privacy and to help protect my immune system from germs. It was 2020 after all and we had no idea that our world was about to be turned upside down again. (Would that make it right side up again?)

So, like many women, I have struggled with my body image. I had gained weight slowly over time and was sitting at the heaviest I had ever been. So even though I wasn't thinking I was a hot mama there were 3 things I liked about myself physically: (1) my boobs - they were pretty good, (2) my hair - it was thick and wavy, it was medium length though within the previous 2 years, I had had it as long as my waist and as short as my chin, and (3) my freckles - I've always liked my freckles, thought they were just kind of cute.

I had already lost my breasts. They had been replaced with adolescent-sized nipple-less bumps with enormous scars that looked like upside-down "T"s.

Now, I was about to lose my hair. I told myself over and over that it was just hair. It would grow back. It's just hair.

Before

Bye-bye beautiful hair

After - rocking the shaved head

And that was that. It was done. I think I rocked the shaved-head look. I feel like it gave me a little bit of a tough-edgy vibe.

Later that day, my kids were sent home from school and the Governor shut down our state for 2 weeks to flatten the curve. 

March 17 was my next chemotherapy appointment. Hospitals were essentially on lockdown. I could go for my infusion, but I had to go alone. No support persons were allowed unless I was no longer ambulatory. I could walk on my own, so I went in alone. I packed my bag with my blanket, a book, my iPad, my phone, my breath mints, and my husband dropped me off at the entrance to the Cancer Center. 

I would do three infusions on my own to complete the 4 doses of the A/C drug combination. I continued to need lots of rest, I felt terrible, didn't experience a ton of nausea, though there was some. I would sleep the rest of the day on the Tuesdays of the infusion (so emotionally and mentally draining), feel OK until late Friday, then I would spend the weekend being pretty miserable. Perk back up by Tuesday of the non-infusion weeks and be OK until the next infusion.

My stubble from shaving down my hair fell out in a painful process over a couple of days. What a mess! I think it would've been better to just leave it long and let it fall out like that - at least it would've been easier to clean up instead of all the tiny hairs everywhere. My scalp hurt badly during that time. It was a feeling of having my hair brushed in the wrong direction. So odd and painful. The shaved head stubble look is much different from bald from having your hair fall out. 

After my 4th round of A/C I was pretty sick and ended up throwing my back out. I could barely breathe. I had a couple of ribs out of place making it difficult to expand my chest with each breath. I had pain radiating down my left leg and I couldn't turn my head because I had pinched something in my neck. What a mess I was!

I was able to get in to the chiropractor (even though the world was shut down - it was April 21) and get adjusted. I felt so much better so quickly, but my left leg still hurt. It felt like it was always all cramped up in my calf. I had mentioned it to my oncologist during a video appointment, but he said it was just from my decreased physical activity and I should try to walk more and stretch. I had been doing that for a couple of weeks at this point, but on April 23rd my leg was swollen and not quite the right color. I called my family doctor. He got on a video call with me, took one look at my leg, and sent me to the ER. He called ahead to tell them I was coming and that I was a cancer patient so I wouldn't have to wait. He suspected I had a DVT (Deep Vein Thrombosis) in my leg. 

My husband and kids dropped me off at the ER - in April 2020, at the height of COVID terror. I went in alone, was taken back quickly, and put in the farthest room away from everyone in a super quiet area of the ER. I had an ultrasound done on my leg and they confirmed that I had, not 1, not 2, but 8 (EIGHT!!) DVTs in my left leg. 

DVTs can kill you. I was very lucky. Again.

I was put on blood thinners, told to keep my leg elevated and sent home.

And in truly no-rest-for-the-weary fashion, I had chemo coming up on Tuesday.

Bump in the Road (part 6)

My Medical Oncologist, Dr. H, wanted to send me for a couple of tests to confirm a Stage 3a diagnosis and ensure Stage 4 wasn't the reality. I was terrified. No one had mentioned the possibility of Stage 4 cancer. At this time, Stage 4 cancer can't be cured, it can only be managed. Dr. H sent me for a Bone Scan and a CT scan. So 2 days after first meeting Dr. H, and 2 weeks and 2 days after a bilateral mastectomy, we drove an hour away for a Bone Scan at the nearest location that could do it so quickly. A Bone Scan involves injecting a tracing dye, waiting a bit, then returning to be scanned. The wait allows the dye to find any cancer hiding out in your bones and light it up to be picked up on the scan. 3 days later I went for the CT scan of my chest, abdomen & pelvis. That involved drinking a terrible liquid quickly, waiting, then going back for a scan. 

Once results were in that all was clear, 4 days later I went for an Echocardiogram to make sure my heart was strong enough to handle chemotherapy. It was. So surgery to place a port in my chest was scheduled for a couple days later., February 27. The port was placed in my right chest wall and a small incision was also made in my right neck. Whoo boy did that one hurt when I woke up!

Port surgery

March 2, I went for a chemo teach session with the nurse at my oncologist's office. She went through what to expect, how to prepare for each chemo session (lidocaine lotion over the port to reduce pain with access), what medications both prescription and over-the-counter I would need to take & when. It was so much information. I ended up making a medication log to ensure I didn't forget anything important. I also went to the pharmacy to pick up all the prescriptions and buy all the supplements and OTC meds I needed.

March 3, 2020 was my first chemotherapy infusion. 

My husband took me. His plan was to take me to this first infusion, then let a rotation of my friends, mom, and sister take me to these marathon sessions. I'm told it is helpful for the patient to have a supportive person with you for encouragement, distraction, and overall emotional support. I mean, as the patient, I know what is at stake and it was comforting to have people who love me surrounding me as my brain swims with dark thoughts.

At the infusion, it didn't kick off with the chemo drugs immediately. I had to have several pre-meds. Some steroids and some anti-nausea medications. Everything was going smoothly and I was getting my last pre-med. The nurse set up the bag of anti-nausea medicine, a very common drug called Emend, and stepped away to order the chemo to be mixed for me. My husband, at the same time asked if I was OK, and he stepped away to use the restroom. I watched my husband disappear around the corner, the nurse pulled the curtain closed and stepped away.

Let's go!!

Immediately, I didn't feel right. I felt hot and tingly, I couldn't breathe no breath was going in or out. I couldn't talk or yell. I couldn't see as the room started going dark. There I was behind a curtain where no one could see me and no one would be back for a few minutes.

I realized I was about to lose consciousness and the thought rushed into my head to throw myself out of the reclining chair I was in so they might hear me fall. I started pitching forward in my chair as things went dark and suddenly the call button was in my hand. I hadn't been given the call button, I don't recall seeing it at all before that moment. But I managed to press it as I lost consciousness.

When my husband came back from the restroom a minute later, I was surrounded by nurses and aides, they were administering medicines into my IV/port; they had a breathing bag over my face breathing for me; they had a cool, wet cloth over my forehead and there was a lot of commotion & shouting.

I was allergic to the Emend (a common anti-nausea drug) and had experienced anaphylaxis.

They were able to rescue me. They called my doctor who said that, obviously, I wouldn't be getting that anti-nausea drug and I could choose if I wanted to continue with the chemo today or reschedule for another day after all that trauma.

I chose to move ahead. I had already done all the other pre-meds. I was already there. I didn't want to delay. Bring on the red-devil.

Let's still go, but please don't kill me

The rest of the infusion was uneventful. I finished it up and headed home. I didn't feel terrible immediately, but knew it could take a few days before it started affecting me. I was mostly just exhausted from everything that day. By the weekend, I was really tied and felt pretty "punk", not nauseated, but not good. I slept as much as I could.

After getting home from the first infusion, I found out that my husband had called my mom when everything happened at the infusion and she called my group of girlfriends and asked them all to start praying. My dad had been in the cancer center when I was getting my infusion. He was at an appointment with his oncologist (he had leukemia) and as he was there with his doctor, he jumped up and said he had to go - something was wrong with his daughter who was 2 floors below getting her chemotherapy and he needed to get down there to pray for me. No one had called him yet. He didn't have any way to know something was wrong except the Holy Spirit spoke to him. He ran down and stood outside the infusion center praying and a nurse asked him if he needed help. He told her I was in there getting my infusion and something was wrong so he was praying. A few minutes later my mom called him to tell him what was going on and he told her he was already standing outside the doors praying. He already knew. Praise God - He is always watching out for me!

Bump in the Road (Part 5)

 As my surgery date approached, I tried to continue life as "normal-for-us" as possible for everyone. I drove kids to/from school and activities, I cooked, and I cleaned. As I went about my daily tasks, I thought through what might need to be modified in the days/weeks after surgery. I was weirdly obsessed with making sure the strings on the bare lightbulb fixtures in the basement were long enough so I wouldn't have to lift my arms to reach them. 

The week of surgery, I had a pre-op with my surgeon on Monday followed by bloodwork. No big deal. The day before surgery, Wednesday, I had a pre-op with my plastic surgeon. No big deal, I thought. But that plastic surgeon kept on surprising me with how important of a role he actually played in this whole drama. I had my husband snap a picture of me before the plastic surgeon came in - I had remembered to set up everything, but this was the end of the line for the boobs I had had my whole life. I had forgotten to remember them. The surgeon came in and drew all over me - marking my entire chest up from armpit to armpit, lines going every which direction. He gave me the marker and told me to redraw any lines that faded between then and surgery the next morning.

I went home and tried to get some sleep, which was just not possible.

The morning of surgery, Thursday, January 30, 2020, I woke up early, my mom and dad arrived early to stay with the kids and get them off to school; they would later meet my husband at the hospital to sit with him in the waiting room. My husband and I left and headed up to the hospital around the corner from our house. We checked in, they took me back and started prepping me for surgery.

I had to take a pregnancy test (LOL! Not a chance I was pregnant), strip down, and get my IV started. The anesthesiologist visited and went over the plan, surgeon visited and went over the plan, the plastic surgeon did not visit before surgery. I had to have a procedure done before being taken back wherein they inject dye into each of my breasts and I needed to massage both well afterwards. This was to track which of the lymph nodes each of breasts drained to so they could take the first few from each side along with the breast tissue to biopsy them for cancer cells. This is pretty standard and created a moment of levity in the room beforehand as my husband offered to help me with the massage. Always a helper!

Next thing I knew, I was off to surgery. The nurses commented that I was so calm. In their experience, women were hysterically crying and terrified when they were going for mastectomies. I felt emotional; it was scary, no doubt, but this was what would get the cancer out of my body - so LET'S GO!

When I awoke in the recovery room, my husband was with me. I asked him if I was ugly now and he assured me that I wasn't. I had no pain at all and surprisingly little nausea. I drifted in and out of consciousness the rest of the day. I remember hearing people in my room visiting: my mom, my dad, my brother (in his Police uniform), my husband. When I woke up the next morning, my surgeon came in and refilled my pain pump with numbing medicine so I would remain pain-free for days! He was so kind, he even found my cell phone and brought it over to me. When he left, I took a few selfies. Too embarrassing! I went home later that day and was there when my kids all got home from school/activities. I was so happy to see my kiddos. I had missed them so much and I wanted so badly to hug them as tight as I could.

Hospital Selfie

About a week later, Dr. R called me with the surgical biopsy results. The tumor in my left breast was much larger than expected: 7.5cm x 3cm. There was no cancer found in my right breast - PRAISE GOD! There was no cancer found in the lymph nodes on my right side, but there was cancer found in 4 of the 5 lymph nodes removed on my left side. This would change my treatment plan drastically. I would now require chemotherapy instead of just radiation. She already had set up an appointment for me with an oncologist.

My reasons to fight!

I now went weekly to the plastic surgeon to have my chest expanders expanded. Expanders had been placed under the skin of my chest to create new breast mounds. I did not have skin-sparing mastectomies, so each week the plastic surgeon would inject saline into the "implants" in my chest. The first couple of times I went, I was terrified - the needle was HUGE - so I took some powerful pain meds the plastic surgeon had given me. My mom would just laugh at how silly it made me. I didn't have any pain though! 

Two weeks after surgery, I met with my medical oncologist. He is the sweetest man. Gentle, patient, kind, reassuring, smart - all the things you would want in a doctor tasked with delivering such difficult news to patients. He wanted to come up with a treatment plan, and said I'd need to do a few tests to verify that the cancer had not spread beyond the lymph nodes and that it was truly a Stage 3 cancer and not a Stage 4. Stage 4 treatment is very different from Stage 3 treatment. And it carries a very different prognosis.

Cue the tears.

Bump in the Road (Part 4)

After telling our kids and family & friends, next I started a list of all the other people I would need to notify:

• Our Priest (ask for Anointing of the Sick before surgery)
• The kids' school (principal, teachers)
• Catechism teachers
• Soccer coach & team (I was the team manager)
• Gymnastic coaches
• Dance teachers
• Dentist (get a cleaning before surgery)
  
• Endocrinologist (have thyroid checked and monitored during recovery)
• Notify Be the Match (bone marrow donor registry that I am on)
  

I also started a list of all the things I needed to do to prepare for recovery:

• Cancel the gym membership for our son (we wouldn't be able to take him)
• Cancel my monthly facials
• Cancel my monthly eyebrow shaping
• Buy recovery clothing items
• Buy recovery equipment
• Stock up freezer meals
• Figure out out plan for a soccer tournament that was already scheduled out of state
• Send out Valentine Day Party planning info for Kindergarten (I was room mom)
• Prepare a daily schedule for my parents who would be helping with the kids 

 I called the principal and asked if I could drop by to chat for a few minutes. Mr. J is a wonderful Christian man who leads our local elementary school. I went up to his office and shared the news with him. He immediately reassured me that he and his family would be praying for me. He reassured me that our school community would rally around the kids and would support them in any way they needed. He said he would let the teachers know for me and would reach out to the social worker just in case they started seeing the kids acting out or upset during the day at school. 

A couple of amazing moms from the 2nd grade offered to set up a meal train and a ride train to get the kids to school & home each day. What a blessing that was! I was so nervous to accept help; I'm very independent and asking for and accepting help is absolutely foreign to me. I am the helper not the helpee. But I really couldn't have made it through without all the incredible families from our school who drove my kids to/from school, took them on play dates, and brought us meals. I'm blown away by their generosity. We love our Wolves!

There is actually a lot of equipment that can help make recover after a mastectomy much more bearable. It's not all 100% necessary for everyone, but here are the items that I really found useful and comforting (none of these are affiliate links, they are just products I found that I used & liked - I also tried to buy from small businesses as much as I could in the time frame I had - many are run by breast cancer survivors):

• A recliner: my sister loaned me a reclining chair to use during recover. Life saver! I couldn't lay down comfortably for several weeks/months. Having the recliner to sit and sleep in was so helpful.
• A contoured pillow for across my chest and under my arms. I bought this one from Pink Pepper Co. and really loved it. I still use it more than 6 months later. It is very comfortable to keep your arms away from your drain sites and to protect your sensitive chest.
• A seat belt pillow. I bought this one from Pink Anchor Pillows and still use it in the car whenever I have to go somewhere. This was one of those items that I would say borders on necessary. Like, they should give prescriptions for them.
• A shower lanyard. My plastic surgeon made me a rudimentary one in the hospital but breaking off a piece of oxygen tubing and tying it in a knot, but the lanyard was much easier to use. After surgery I had a relatively heavy pain pump hanging from a pouch around my neck and two bulb drains that hung from my sides (from the ribs under my breasts). When I showered I would just hang the pain pump and drains on the lanyard so they didn't hang and pull. So much easier than trying to juggle them in my hands. I already needed help in the shower (thanks, mom), but this freed up my hands to help me stay balanced and wash myself.
• A few zip up hoodies. I bought some Hanes brand ones from Amazon. My surgery was in the winter, so zip up hoodies were a must for staying warm. You won't be able to lift your arms so putting on a shirt over your head is impossible. Zip up and button down tops are your friend. For many, many weeks. I didn't go with "mastectomy" style shirts with built in drain pockets because I thought they were pretty ugly, and didn't come in black, which is my favorite color. Also, I just couldn't picture myself wearing them after recovery...but zip up hoodies. Yes, I'll wear those forever.
• Pink Pockets. While I didn't purchase mastectomy shirts with drain pockets, I would still need something to hold up the drains and keep them from hanging and pulling. They had attached safety pins at the hospital so I could pin them to my clothes (they pinned them to my gown), but that seemed impractical at home. I found these Pink Pockets that use double sided fabric tape so I could stick them in any shirt or robe and remove them when I didn't need them anymore. I bought 2 packs, but really only used 1 package. They stay on much better than I anticipated...in fact, they are still in my zip up hoodies after dozens of washes.
• A comfy robe. I'm not a robe wearer, but I bought one to have in case I needed it after surgery. I don't think I ever wore it. It's a lovely robe and maybe I'll use it one day, but I didn't find it necessary. Just not my particular style or comfort level. I found it at Target.
  
• Button up pajamas. I found 3 pairs of button top pajamas in very soft fabric at Target. They're all Christmas pajamas - they were on clearance. I still wear these because I have hot flashes at night so if I wear a tank top under them, I can rip them off pretty fast.
• Slippers. Again, spending so much time at home and being a little unsteady on my feet, slippers were great. I found some at Target.
• Post-surgical bras. Your surgeon or plastic surgeon should give you a Rx for one. You get them at the medical supply shop or there are some specialty shops that sell them. I bought 2 extra and got one that my insurance covered. I ended up not using them much. The drain holders were awkward and the under breast elastic/gathering was very uncomfortable for me due to the type of incisions I had. Also, I lost a lot of weight after surgery so by the time I could tolerate wearing them, they were too big for me. One of them is tank top style and I use it occasionally. By the time I was ready to start wearing a bra again, I ended up going with these (my favorites) and these.
• Other useful items: water bottle to stay hydrated, small table to keep your things on near where you sit, books/magazines, tray for eating meals in your sitting place in case you don't feel like sitting at the dinner table, a stack of thank you notes and stamps.

The last thing I did was prepare info for my husband and parents. I made a weekly schedule that included the who, what, where, when and what supplies were needed for everything in our calendar. Our weekly activity calendar was pretty crazy between school, safety patrol, catechism, soccer practices and matches, gymnastics team training, and dance classes. I also made a list of what each kid takes in their lunch and for snack. 

Bump in the Road (Part 3)

 Once I had a surgery date I felt like I could let people outside of my family know and start notifying the people and places who would need to be aware. We also needed to tell the kids.

I also stopped at the Cancer Resource Center at my hospital. The nurse navigator there, "G", was so helpful and patient with me. She listened to my concerns, she loaned me a couple of books from their library about how to tell the kids. She gave me a book called The Silver Lining to read. The book is about one woman's breast cancer story; she is a nurse and shares all the details, encouragement, funny stories. I devoured this book in about 2 days. It was extremely comforting to read her story and hear her experience. It took away a lot of the fears of the unknown.

I also read the books about telling the kids in an age appropriate way. At the time our kids were 5, 7 and 11. The younger two girls fell into the same age category for their ability understand and what their main concerns would be. Our older boy fell into a different category. Remembering that our kids don't have experience with the word "cancer" and that it likely wouldn't trigger strong emotions and worries about death, we sat them down on the couch after dinner one evening and began a discussion with them. We started with the fact that they probably noticed mom going to the doctor a lot lately and that they probably had seen me crying sometimes. 

We said that the doctors told me that I have breast cancer; we explained that our body is made up of cells that all do specific jobs - some carry oxygen, some make us strong like our muscle cells, some help us absorb food and convert it to energy, our skin cells protect our body from germs - normal cells are healthy and do their job right to keep a person healthy, they make enough copies of themselves to keep our bodies healthy. Cancer cells are not healthy cells - they do not make a person healthy, they can make a person very sick, plus because they're broken they don't know that they're bad and they make too many copies of themselves and they all group together and make a tumor.

We explained that God gave scientists and doctors so much knowledge and wisdom that they can help people who have these bad cancer cells. They can do surgeries to cut out the bad cancer cells, they can give people medicine to help kill the bad cancer cells, and they can even shoot them with lasers to kill them. I would be having surgery to cut out the cancer cells. My doctor would give me some medicine that would make me sleep and while I'm sleeping, she would cut out those nasty cancer cells. After that they would wake me up and give me medicine so I don't hurt too much while my cuts heal. We assured them that the doctor was very confident that she could help me get all better and that she would do her very best. 

I told them that they might see me crying sometimes and it was because I was scared. It's OK to be scared. Some things are big and hard to understand and that can be scary. If they are scared, it's OK. They can cry if they need to do that; they can also ask me any questions and I will do my best to answer them. If I can't answer their question, I can ask someone who can answer it. 

We told them that it would be a very difficult year for all of us, but that we would make it through it as a family. After my surgery I would have to rest a lot and I wouldn't be able to drive them to school, soccer, gymnastics, dance or anywhere else for a few weeks. We reassured them that grandma and grandpa would be here a lot to help me and to take them to their activities. They might have to miss something every now and then, but if they had to stay home we could spend time doing something at home together like a game or a puzzle.

The kids cried a bit, mostly because I cried a bit. Our youngest, Miss E, didn't like it when I cried because it made her cry (sweet baby). As anticipated, their concerns and questions followed the age appropriate things we read about. The youngest was concerned about what would happen on her birthday (about 1 week after my surgery). Miss A, our middle child, was concerned about her activities and how it would affect her. Our oldest, Jr., was more worried about what his friends would think and what extra things he might be asked to do around the house. Each kid over the next several days was taken aside and given an opportunity to ask me anything they wanted to ask. The littler two just wanted to make sure I wouldn't feel it when they cut the cancer cells out. The older one had some more specific questions about cancer that we answered honestly and with age appropriate information.

Next up was time to share the news with others outside the family. I had told a couple of girlfriends already; I had actually told them about the call back and that I was a little nervous because of the "spiculated margins" wording and what I had found on Dr. Goo.gle. These particular girlfriends have been my crew for more than 25 years. We have been through so much together and it definitely didn't feel right to keep this from them. I also knew they would pray for me, which is the most important thing!

My mom had been given the go-ahead to tell extended family. So all I needed to do was put together a Facebook post. What a weird thing to say. I keep in touch with most friends on Facebook and there are so many people dear to me, I would run out of time if I had to contact each of them individually and have a separate conversation about this every single time. Of course, after I put it on FB, many friends called and texted, which was wonderful to hear from so many people reaching out in support and faith. 

Bump in the Road (Part 2)

Part 1, in case you missed it.

 

Finding out I had cancer was terrifying.

My thoughts went immediately to my kids. They are so young. My son had just turned 11, my middle daughter was 7 1/2, our youngest was 5, almost 6. How could I look at my kids and tell them I have cancer without scaring them? I didn't want them to see their strong, active, always on-the-go mom as sick and weak. Like a lot of families, mine doesn't run well without the mama running it. I had to focus on getting better for them and my husband.

When we got back from the OB/GYN, my mom was at our house watching the kids. She could tell by my tear-streaked face that it was cancer. She hugged me tight, I took her in our bedroom to tell her what I knew (not much). She said she would come to any appointments or watch the kids anytime and that she could completely clear her calendar to be as available for us as we needed. As she left, I told her to text me when she got home so I could call and tell my dad when she was there with him. My dad doesn’t always deal well with stress and has been battling his own serious health concerns, so I didn’t want him to be alone when I told him. My parents are strong Christians and so I knew I could count on them to begin praying immediately.

The nurse had given me a list of surgeons after the biopsy. One of the doctors on the list was familiar because I had had surgery with her about 12 1/2 years ago. I called her office to make an appointment as soon as we left the OB/GYN's office after officially being given the diagnosis. They got me in on Monday, January 6th at 9am.

Next I called my sister. She can be a tough one to reach. I called and she answered but asked if she could call me back in a couple minutes. Now, I know my sister and know that when she says that I won’t hear from her from months. I said, “that’s fine, but you actually need to call me back. This is important and urgent.” She said that she could talk now instead. Told her the news and she started crying and wanted to know what she could do to fix it. Obviously, nothing, so I told her I’d call her when I knew more or needed something. Next up was calling my brother and sister-in-law; my SIL wasn’t home, so I talked to my brother and asked him to tell his wife the news. My brother was awesome; he prayed with me immediately, but was very emotional. I’m close to both my siblings and these calls were terribly difficult to make.

My mom went with me to this first appointment. First I met the Nurse Practitioner, T1. She is the sweetest, gentlest person. She was so compassionate toward me and my mom; meeting her was a great comfort for my mom especially. Then came in Dr. R. She is a tiny, but powerful woman, an amazing surgeon and has the perfect bedside manner for me. She is very data driven, very evidence based. She had already looked at my radiology images, examined me, then did an additional ultrasound there in her office.

After that, we sat down in the conference room with her Nurse Navigator, T2. T2 was also incredibly compassionate and kind. She gave me a binder that the hospital gives to all newly diagnosed breast cancer patients. The binder contains information about the types of breast cancer, how they are graded and all the treatments for cancer: surgery, medical (chemotherapy & other drugs), radiation. It talks about reconstruction options and what to expect during each stage of the process. It had information about the Cancer Center at the hospital with all the resources they offer to patients and families (dietician, social worker, library, shuttle, support groups, educational seminars, etc.). It had information about integrative medicine; a section for me to keep my medical records; a spot for me to keep all the business cards from my care team. Later, my husband and I would say that if you're gonna get cancer, this is the type and now is the time - there are so many resources and so much money being thrown into researching and finding a cure for breast cancer. Hopefully one day soon there will be a cure for every woman who is diagnosed.

Finally Dr. R joined us again. She told me that we had caught it early. I had probably an early Stage I or Stage II Invasive Lobular Carcinoma. If the 2 spots were truly separate, than it would be Stage I. If they were really just one spot (they were connected), then because they were less than 5cm apart it would be Stage II. They didn't suspect any spread to my lymph nodes (good). I would need a Breast MRI to confirm what she was seeing on the other tests. If it all came back as suspected, she recommended a lumpectomy. She said that with the type of cancer I had, when the tumor is smaller than 5cm a lumpectomy is just as effective as a mastectomy. She also recommended I undergo genetic testing. And if I was considering any type of reconstruction on my breast (a lumpectomy would've left me very uneven) I should meet with a plastic surgeon. I also needed to go have some bloodwork done and a chest xray - I was sent immediately for those two after I left Dr. R's office.

The great part about having a Nurse Navigator is that she handles booking appointments and coordinating tests for me so I don't have to do it myself. T2 made me an appointment with Genetics for the next morning (January 7, 2020). I filled out their online survey/questionnaire (detailed family tree and history) before going. The appointment was pretty easy and I went alone. I met with a genetic counselor, K, a phlebotomist came in and drew a couple vials of blood and that was that. They would call me before running the tests to let me know how much it would cost. They would deal with checking with my insurance for me and if my insurance didn't cover it, they had various pricing models for help. It would take several weeks for results to come back.

Next up was meeting the Plastic Surgeon. My Surgical Oncologist, Dr. R, referred me to Dr. M. She has worked with him for years and thought I would like him. T2 made my appointment with Dr. M for Monday, January 13 at noon. My sister had been wanting to come to some appointments with me to help support me and so she joined me at the Plastic Surgeon. The nurse, D, met with me first. She took a few pictures of my chest, and explained the process of reconstruction to us. She showed us the different types of implants. I asked her about reconstruction using my own tissue (such as DIEP flap and others). She said Dr. M doesn't do those types of reconstruction, but they would be happy to refer me to another doctor so I could get all the information I needed to make the best choice for me. Then Dr. M came in - he's totally cool. He was very professional, had a compassionate bedside manner, took time to answer our questions. My sister had more questions than me, which is why you take a second set of ears to all these appointments. I think I was just in too much shock to really comprehend what was being said or to think of questions. I thought the Plastic Surgeon was a pretty low stakes appointment, but I was wrong.

Turns out, the Plastic Surgeon is extremely involved in my surgical care. I thought it was more like, he shows up at the end of the surgery and tosses in an implant. Um, no. Implants are the last step in this process and don't go in until after radiation is all done. He would place a tissue expander in my breast at the time of the first surgery; then I would need to go get it filled every week until it's the correct size. Then after all the cancer treatments are done, we do the reconstruction with the implant. Didn't see that coming and I think my poor, sweet sister was traumatized for life after that appointment. She tried really hard to be strong for me, but she called my mom after the appointment and cried.

T2 had gotten me an MRI appointment for noon on Friday, January 17th, but my surgeon, Dr. R, wanted it sooner - she didn't want to wait that long, so they were able to move me up to 8am Tuesday, January 14th. For that appointment, my mom came with me again (many of these hospital locations are women only, so my husband couldn't come to these appointments). I changed and the technician took me back. This was pretty easy. Lay on my stomach on a table with my boobs hanging down through a hole. Lay very still...do not move for 15-20 minutes. The machine whirred and clicked all around me while I prayed a Rosary. That was it. Results would be sent to the doctor right away.

Later that day at 3:16pm, Dr. R called me with results from the MRI. She said the 2 spots were connected; they were actually one large tumor that was 7cm across. There was no evidence of cancer in my right breast and no evidence of cancer in my lymph nodes. Because the tumor in my left breast was over 5cm, a lumpectomy was no longer an option. I would have to have a mastectomy. My choice was now to do a single or double mastectomy followed by radiation. Due to my age (44) and the cancer being invasive lobular, there was a high chance of the cancer returning in my right breast in the future, so a double mastectomy could be medically justified, but not required.

I chose a double mastectomy with reconstruction to start immediately. I confirmed my decision with my husband and called the surgical coordinator at Dr. R’s office to get scheduled. She worked with Dr. M and the hospital to coordinate everyone’s schedule and get me scheduled for surgery on January 30. 

 

Keep reading Part 3