The Breast Cancer Diaries, vol. 1, issue 6

The Not-Great News Chapter

 

Before I get to the final pathology from the lumpectomy/lymph node removal surgery, I have a quick update on the post-surgical healing process. Also, for those of you who find my parenthetical inserts and asides annoying, you'll just have to put up with a whole lot of them this time around.

 

I've been pretty sore at the incision site under my arm where the surgeon removed 2 sentinel lymph nodes last week. The incision also has been a bit weepy, so I went to see her on Tuesday morning, 2 days prior to the follow-up visit yesterday. She examined me and said everything was healing fine and what I'm seeing is serum leaking. It's typical, and I should expect swelling. She also said to use warm compresses. So I did, and I the swelling arrived a day later. 

 

When she looked at it yesterday, prior to delivering the results, she said that I have a seroma, which is fluid in the area of the surgical site. It should resolve itself within 3 weeks. But, if it gets larger, she'll take a needle to it and drain it. 

 

She also warned me that sometimes these things can drain at a very rapid pace, and to not be frightened if it starts "streaming" (Niagra Falls! Slowly I turn...). She recommended that I keep a pad at the incision site. 

 

For many years (this is about to become TMI for a lot of you), I've used reusable, soft cotton, organic pads for my monthly cycle. The actual reason I joined FB ages ago was to get a discount on Lunapads. The secret is out!

 

Since all bets are off now as far as predicting the timing of my post-progesterone cycle (see previous entries for that bit), I've resumed carrying and using Natracare and Seventh Generation disposables. All the above to say, the soft cotton reusable pads are what I've been tucking halfway into my sports bras to deal with the seroma leakage slightly above where the bra fabric sits under my arm. They are exactly the right size and shape for the job.

 

Just an aside about sports bras. My favorite sports bra company, Moving Comfort, was absorbed by Brooks a number of years ago. They stopped manufacturing the best one for me (the Fiona model -- wireless, very adjustable, and supportive for larger chested people like me). I've tried scores of other bras by other manufacturers, but have been unsuccessful in finding a good fit (especially with adjustable straps because I'm short) and support. 

 

Prior to the surgery, I scoured ebay and other sites to see if anyone had the Fiona (or similar models such as Juno or Maia) in a slightly larger size to accommodate the swelling that would come from the surgery. I bought the only two available. I've been pretty much living in them (wearing one, washing the other) for the past week. 

 

OK, we're now up to the tough part. Deep breaths, folks. 

 

After the exam, the surgeon took me into a consultation room and asked my nurse to retrieve my dear friend Marilyn from the waiting room. I knew it wasn't going to be good because otherwise, she would have told me right at the start. So, I took a deep breath and sat down. Before Marilyn got there, the doc told me that one of the two lymph nodes had cancer. Which means that it's moved beyond the breast. But she wanted to walk me through the whole final pathology when Marilyn arrived. 

 

Of course, I felt upset by the news, but I held it together so that I could be as present as possible and take notes when needed. The surgeon explained to us that the surgical margins were negative, which means that the entire tumor is out of the breast, so that part is done. But now we have to treat my body systemically to ensure that I don't die of this because it showed up elsewhere.

 

She told me that I'd meet next with a medical oncologist who would send my lymph tissue to be Oncotype tested. It's a genomic test that determines if early stage breast cancers need chemo (if recurrence elsewhere in the body is likely) or just the estrogen inhibitor pill. Radiation therapy will likely occur no matter what, but if I need chemo, the chemicals will come first. Speaking of stages, because I am positive for metastatic carcinoma in one of the lymph nodes, I'm now Stage 2.

 

Once the doc orders the test, it will take 2 weeks to get the results. But the test needs pre-approval by the insurance company because it costs (get ready) $4000. Yep. But, I've got to do it. For more information on this test, here's a good link: https://www.breastcancer.org/.../testing/types/oncotype_dx.

About the medical oncologist I'll be seeing on Tuesday (Marilyn will accompany me again), he did his fellowship at Sloan Kettering and is double-board certified in oncology and hematology. He's also the chief of medical oncology and hematology at St. Peter's. So, I'll be in good hands. 

 

After Marilyn and I returned to my house, we took a walk around the neighborhood because I needed to move my physical self and get some fresh air and sun on my skin before I began the great communication effort. I also needed to meditate on how to talk to folks about all of this while still just beginning to wrap my mind around it myself. 

 

Marilyn and I talked at length about self-care and cancer. Sometimes it's challenging because it involves making decisions that other people might not like or approve of, but it's not about them, it's about ME. I must put myself first, which can be tough because I'm typically very responsive to others.

 

I've also got to make all efforts to keep my stress levels as low as possible, so if that means that I don't respond to every text or call from folks who "need" me to communicate with them, that's OK. They will get used to it. 

 

After some time and a few tears, I spoke with family, and texted and called my closest network of friends and spiritual family members. I am overwhelmed with gratitude for all the love, prayers, and support I've received. 

 

I'm still wrapping my head around all of this. My plan for the weekend is to give myself a big break, rest, and practice as much self-care as possible. What does my version of self-care look like? Among other things, recovery meetings and taking walks in my favorite places (and, of course, sharing the photos with you all), perhaps with a friend. Harvesting the arugula and some of the now-massive blue oyster mushroom crop to grill. Perhaps making my favorite walnut-lentil pate from the now-defunct Angelica Kitchen (So delicious but takes hours to make. The special ingredient is umeboshi vinegar.). 

 

I will be very gentle with myself for a while because this is big. I feel 20 different ways all at once. Coming to terms with this news will take time and many long phone calls with my close network, some of whom have experienced cancer, including breast cancer. It's a different conversation entirely with people who have been through it (not just adjacent to it), and I'm grateful when they share their experience with me. It's a club that sucks to join, but its members are AWESOME. 

 

I haven't mentioned yet that it's a good idea to get a mammogram, so there it is. Go get screened.

The Breast Cancer Diaries, vol. 1, issue 5

"I'm not just going through this, I'm growing through this." -- Deb Schiff

 

Welcome to the next installment of The Breast Cancer Diaries. I figured it needed an appropriate name since it will be an ongoing series here. This particular chapter is a painful one. 

 

But before I start, I'd like to give all possible shout outs and huge thank yous to my very dear friend and spiritual sister, Patty Scott, who cared for me from Wednesday through Friday afternoon. Not only did Patty provide for pretty much all my needs, she also repaired my grill! Took the thing apart, replaced the failed portion, and put it all together again. Suffice to say, we enjoyed some freshly grilled delicata squash, green onions, and Halloumi cheese afterward. 

 

The Mighty Ms. Fixit also helped me remove the pressure dressing and all that awful tape and adhesive. It was a brutal process due to my adhesive allergy and my naturally sensitive skin already being tender from the tape pulling on it for 2 days. What follows is my explaination of how we did it together. Patty might have more to add in the comments. 

 

First, I had to prepare myself mentally. I knew it would suck. I had no idea how much it would suck, but I knew it would. So, I spent some time in meditation. Then, I asked Patty to help. I decided that I would try to remove as much as I could by myself first because 2/3 of the tape was on the front of me. It spanned nearly the entire left side of my chest and wrapped around my left side onto my back and up under my armpit. 

 

I was able to get pretty far before Patty began on the tape wrapped around my back. There also were other parts I couldn't reach because I either couldn't lift my left arm up higher than my shoulder (from the large incision where the surgeon removed the lymph node) or, the motion irritated my breast where the lumpectomy took place.

 

Another complication that made things difficult had to do with gravity. Because we had removed my sports bra, I still needed to support the left breast. The weight of it pulling downward hurt and there was adhesive under it, so I supported it as much as possible with my left hand and did what I could to remove the adhesive with my right. It was awkward to say the least. My left shoulder ached by the end of it.

 

Pulling the tape was painful all the way through, but it became so severe at one point that I burst into tears. It had been the first time I really wept about anything having to do with the whole breast cancer business since the uterine biopsy. Patty was very patient and supportive, and we stopped until I could pull myself together and start again. 

 

While she was working on the side of me, I started to try to remove the adhesive residue stuck to my chest. There was a lot of it all over the area. Without thinking, I tried acetone, which stung like mad. I got some cool water on it right away. Then, I remembered that I had some Band Aid Hurt Free antiseptic in the medicine cabinet right in front of me (this whole ordeal took place in my bedroom's bathroom). I soaked a cotton ball in it and washed the whole area. Patty did the same on her side. It did a good job of calming everything down. Eventually, we were able to go back and use acetone to rub the adhesive off, but that also hurt like hell. 

 

I decided right away to leave all the steri strips on the incision areas. About the incisions, we inspected them to see if there was any sign of infection, but they looked they way they should. The one by my armpit is curved like a smile and extends about 3 inches at a 35 degree angle. The other extends the same length straight across the breast from the middle of the left side toward the front. Both are longer than I expected. 

 

Eventually, I was 90% less sticky, although I kept finding small, balled up bits of adhesive on my skin here and there. Afterward, I used Boiron's Calendula cream (recommended by Sam Cummis for radiation treatments) on all the irritated skin. That also helped to calm things down, but today I've still got some very angry red patches from the adhesive and pulling. I'll just keep applying Calendula for a few days.

Afterward, I was exhausted, but ate and took some Alleve because I was just so sore. By the time Patty headed for home after lunch, I had begun to gather my strength a bit to take a shower, but waited for another very dear friend, Joy Robinson, who came to stay for a few hours. It had been my first shower since the surgery, so I asked Joy to please stand by in case I needed help. 

 

I had to think about how I was going to do everything because I had to support my left breast with my left hand as much as possible. It was tricky and took much longer than usual -- long enough for Joy to call in asking if everything was OK. Eventually, I was able to gently let Lefty down long enough to towel off. 

 

Many of the steri strips on the top incision peeled off during the shower, but some remained on the lower one. They seem to be peeling off easily on their own, and I'm not doing any more pulling, especially around incisions. 

 

After the shower, I was completely wrung out. Joy made us some very buttery popcorn, and we plunked down on the sofa to watch Dune (part 1). My quick review of the film: It was easily 30 minutes longer than it could have been. It was beautifully shot and well acted. The cast was highly inclusive. The soundtrack paid great homage to the original Dune film, however, we had to use closed captioning because the spoken word portion was very low in volume despite having it turned all the way up (mine goes way past 11). 

 

This morning, aside from the general skin irritation, I'm a bit sore around the armpit incision site, but not sore enough to take anything for it. The day ahead is an easy one, with a visit from my archivist pal, Sheridan, who is bringing Thai for lunch. 

 

If I haven't said it enough, please consider making an appointment for your mammogram if you haven't already done it. Early detection is key.

The Breast Cancer Diaries, vol. 1, issue 4

“It’s about focusing on the fight and not the fright.” – Robin Roberts

 

If you're on the fence about scheduling and getting your mammogram, please consider doing it now. Early detection is key. 

 

Before I roll into yesterday's festivities, I've got some thank yous to write. A giant thank you to you, dear reader and to everyone who commented on my recent posts; sent prayers, positive thoughts, hugs, and love; and those who sent private messages with their own experiences. I felt bouyed by your good energy even through the trying parts. 

 

Thank you to my hero, my big brother Jorden for showing up for me once again. During the many wait times while I was in the surgical center and/or breast center (they're adjacent; more on that later), Jorden and I exchanged silly emojis in strange, non sequitur series that kept me giggling. He also was the first to sample the Feel Better pie and promptly fell asleep afterward. 

 

Thanks also to my very dear friend and spiritual sister Patty Scott, who took over for Jorden and has been caring for me since yesterday afternoon. She has been keeping me cheered, fed and watered, and distracted from the pain (now discomfort). 

 

OK, here's my lumpectomy experience at St. Peter's CARES surgery center and Astera Breast Center yesterday. 

 

Jorden and I arrived at 6:30 a.m. to do the normal paperwork, etc. I wasn't feeling well because my gut tends to act up when I'm anxious. I'd been taking Nexium for the past few days because my stomach had become increasingly sour from the rising anxiety. I also was unable to sit in the waiting area at one point because I had sciatica. Oh, and there was that migraine that had started Tuesday night. 

 

I'd gotten up to meditate and do some yoga at about 4 a.m. The deep breathing was very helpful, and I kept that up throughout the day to help deal with the anxiety. 

 

There have been few times during my nearly 26 years of recovery that I've wanted a Valium (one of my favorite things in my late teens and early 20s). This was one of them. I said it out loud to Jorden during the initial waiting room, and thankfully, I quickly lost the desire. 

 

After I was called back by a friendly and kind nurse who stuck with me through most of the first hour, I was taken to a brightly lit pre-op area lined with small rooms with curtains for doors. I changed into a gown and was soon prepped by another very nice nurse who had the unfortunate duty of finding a decent vein in my right hand. There's no good place for a hand IV, but the one happy vein was running from my thumb to my wrist. It hurt all day and I couldn't write well or bend my wrist much due to the needle. It presented a challenge since that's my dominant hand and the opposite of the surgery side.

I had a bit of a wait before being taken to the Astera side for mammography and the needle-placed guide wire procedure. There were a number of patients getting other procedures that morning, and I could hear snatches of their conversations with their medical professionals. I had my own parade of them, asking the same series of questions each time. What are you having done today? Which breast? 

 

And so on. 

 

I was taken over to the breast center and was introduced to two of the best mammography professionals I've ever met. One had been through the same procedure and was particularly sensitive to my nervousness. She explained everything in detail and talked me through it as it was happening. Not only was she comforting and informative, but the other tech held my hand and had an actual, funny conversation with me during the procedure. I've never had such a warm experience during a painful medical procedure. 

 

The radiologist who performed the procedure, as well as the other two women in the room, warned me about approaching pain, and went very easy on the lidocaine because they'd all done their homework and read my chart. Pretty much everyone I encountered had done that, which was very helpful because I have so many allergies and reactions to medications and things like latex and adhesive (think steri strips and bandaging tape). 

 

Here's how the procedure went. I was seated in a wheeled chair, similar to the recliner I'd been in while waiting in my little cubicle previously, but this had a foot rest they adjusted to my height and a shorter seat distance. The mammographers moved me over to the mammography machine so that I was seated inside it as they adjusted the parts around my left breast to take "a picture." They got me all set up quickly, and the radiologist looked at the image and told them where to mark me for the guide wire insertion. That experience was similar to the biopsy. 

 

Next, the radiologist gave me some lidocaine (not even 3 ccs) to numb the area where she'd insert the needle. She didn't give me more because it makes me feel drunk (and not in a good way). I toughed it out, and was very distracted by my new friend, the mammographer who held my hand and amused me with all kinds of things I can no longer remember. 

 

There were pauses to take images, about 4 times. Also, the radiologist had to reposition it at one point. She asked if I wanted more lidocaine, but I said no, "I can take it." And, I did. 

 

Then, they gently moved me out of the machine to tape down the 4 inch wire emerging from the side of my breast. It looked like a tiny, bendy, gold filament. Then, the mammographer who'd been through it herself walked me back over to the surgical center for another 45 minute wait. 

 

During that time, I saw my surgeon, one of the nurses on the surgical team, and my anesthesiologist. My surgeon asked me a few questions, then came in close, looked into my eyes, and put her hand on the back of my head (everyone wants to touch my head now that Thom Curtis gave me a crew cut)(I love it, by the way, and might just keep it this short for good). "You're going to do great," she said. I believed her.

The next conversation was a bit different. The anesthesiologist needed a little inspiration to think outside the box. He'd seen my chart and extensive allergy/reaction list, including opiods. They make me puke, so I asked what he could do about that. He said that it's how they treat the patient's pain, but he was aware that I'd had bad reactions to it in the past. I let him think about it for a few seconds, and he decided to try Toradal, a very strong NSAID on me since I use Alleve for my pain relief. He also prescribed Tylenol prior to the surgery (which does nothing for me). He said that he wouldn't use gas, but instead focus on an injectable anesthesia, but I would have a small tube down my throat to help me breathe. He said I might feel a bit scratchy when I woke up. (It wasn't noticeable.) He also told me that he would pay close attention to my breathing to determine my pain level and would adjust accordingly.

I'm going to skip ahead here for a moment just to tell you that when I did come up from the anesthesia, I didn't feel pukey at all, which was a big help and an enormous relief. I'm grateful that he heard me out because it first seemed that he was going to try to talk me into having the opioids. I also appreciate that he spent the few minutes with me explaining precisely what he would do and how he would do it.

Finally, I was walked into a very, very cold operating room where 5 people were busy prepping it for surgery, including my anesthesiologist. I was laid down on a table with both my arms out, and the anesthesiologist started me on the meds right away. I was out before I knew it.

 

The waking up process took me a while, but wasn't unpleasant as it had been in the past. I now had (still have) a very large pressure dressing on the wound. The nurse quickly brought me a couple of cranberry juices and fished my GF crackers out of my purse. They called Jorden, who came 15 minutes later. We hung out a bit while I got used to the loopy feeling. They must have hydrated me like crazy because the nurse helped me to the restroom 3 times before I left. 

 

The nurse helped me into my sports bra, which took a good five minutes of very gentle maneuvering due to the pressure dressing and what looks like 5 feet of tape. The tape is the worst part, really, because they taped me up while I was lying down. Everything moves around and pulls on it when I'm sitting or standing. Not to mention the fact that the skin is fairly thin in that area. 

 

My pain level was increasing enough that I really wanted to get home, eat something more substantial and take 2 Alleve. The pain felt like I was being stabbed and burned at the same time, but not constantly, thankfully. I'd sent some texts to friends saying that I was experiencing lightning in my left breast. I'm not sure what it feels like to be struck by lightning, but it's the best explanation I can give.

The surgeon came to visit for a minute saying that it went "perfectly." Now, we just wait for the pathology results from the lymph node. The nurse said they would come in a week. That seems long to me, and none of the results have taken that long, so far. My guess is that they'll rush it since my surgeon is the director of the breast center. But, who knows?

 

We got home around 2, and Jorden hung with me until Patty arrived after 4. By then, I was starting to feel more pain, but I stuck it out until 6:30 to take more Alleve. We enjoyed some of the food I made while I was preparing like mad on Tuesday. Patty and I feasted on my chipotle in adobo hummus, guacamole, and pie. The pie really turned out well. Patty had lots of nice things to say about it. We watched Game of Thrones for a while until it was time for bed. 

 

I wasn't ready and frankly, a little concerned about how I'd sleep, so I stayed up until I was very sleepy and gave it a go. I wound up sleeping on my right side for about 4 hours. That's pretty much my new normal post-progesterone. But there was pain from the tape pulling on my skin. 

 

I removed the sports bra and very slowly peeled up some of the extraneous paper tape and cut it free. Underneath, as ever when it comes to adhesive, there was a bright red rash on the skin. I removed the adhesive residue (a term I most often use in condition reporting for archives and museum work) with a cotton ball soaked in rubbing alcohol. 

 

Cetaphil makes a really good cream for eczema that I've been using for years. I treated the rash to some of the cream. It will be better later. I also treated the constellation of small purple bruises on my left inner bicep (likely from being strapped down during the surgery), as well as the large bruise on my right hand from the IV, with some arnica gel. That stuff works like a charm on bruises if I apply it in light doses a few times a day. 

 

Today, thanks to drinking a ton of water and resting last night, I feel much more like myself. The pain is limited to my armpit and the tape pulling. Patty will help me remove the dressing tomorrow morning, as well as the adhesive, so I can take a shower and see if all is healing well.

 

It's a beautiful day, so Patty and I make a couple of fruit smoothies and go to Colonial Park for a walk. There are many benches if I get tired. 

 

Thanks again for all your positive thoughts, feedback, and prayers. It means so much to me to have the support I've received throughout this experience. 

 

And, remember to get your mammogram.

The Breast Cancer Diaries, vol. 1, issue 3

The best protection is early detection, friends. Schedule and get your mammogram.

This is a very long post. Pace yourself. 

 

Below, I'm writing about what I've been told to expect from my breast cancer surgery tomorrow and the days immediately following. This post is for you and me, really. Even though I've explained it a number of times to loved ones and dear friends, it won't be "real" until it all happens tomorrow morning.

 

But let me catch you up a bit first. 

 

A week ago, my brother Jorden and I attended a pre-op class at the Astera Breast Center at St. Peter's. It was helpful and scary. My surgeon, another doctor, two nurses, and a physical therapist spoke to a room full of about 10 of us patients and our people. They answered our questions and provided packets of information. The packets were designed to cover both mastectomies and lumpectomies, so there were some handouts not meant for me specifically. For instance, there was one on drains. It's highly unlikely that I'll need one for my surgery. 

 

There was a lot of discussion about lymphedema that had me pretty anxious. The physical therapist said that from now on (read: the rest of my life), I need to be really careful about my left arm (surgery is on that side) because I'll be missing a lymph node. No more blood draws or IVs in that arm. I'll have to wear long sleeves when gardening, even in the summer, to avoid bug bites and small injuries. All this to try to prevent infection which could lead to lymphadema. 

 

I got a bit stuck on that because, well, I'm a bit of a klutz. I love the outdoors, and am no stranger to the small injuries that come from being a gardener or hiking. So, now I need to be careful and not take my good health and general sturdiness for granted. For the rest of my days. I know I'll get used to it because it's small potatoes compared to the breast cancer, but for now, I'm going to complain a bit about it.

Here's the part about the surgery.

 

Early tomorrow morning, Jorden will take me to the Breast Center where we'll do a bunch of paperwork. Then, I'll go for a 45-minute procedure to insert a guidewire to the ribbon-shaped marker where the doctor who did the biopsy left it. A radiologist will put me into a mammography machine, numb the squished left breast, and insert the guidewire. The purpose of the guidewire is to get the surgeon precisely to the tumor (because it's tiny and I'm not). Afterward, I'll be taken to the operating room for the surgery. 

 

While I'm under general anesthesia, my surgeon will remove the tumor and some tissue around it, while being very thorough to check for any other abnormalities. She'll use internal stitches with dissovable sutures so that scarring will be minimal. Then, she will inject me, behind the nipple, with blue dye to locate the sentinel lymph node. I'm told that I'll appear blue in that area for a couple of days and pee blue. Bonus!

 

The sentinel lymph node is in the area of my arm pit, so the second cut might irritate me a bit. But it will be a small incision because lymph nodes are small. The surgeon will remove the lymph node and send it to pathology. The pathologist will see if the cancer has moved beyond the breast. We should receive the "final pathology" in a couple of days. That will determine if treatment other than radiation and an estrogen blocker (because we already know that my cancer loves estrogen) is required.

 

For all the medical procedures I've experienced since early September, the results have come quickly. I'm grateful for the speedy turnaround, although I have a solid 3rd step in this area. (For those of you not in recovery, that's about faith, giving the results to a higher power, and believing that everything's going to be alright even if the result isn't good. It's a journey, to be sure, and sometimes there's ugly crying before getting to the other side.)

 

After the surgery, there will be two levels of recovery: 1. waking up with lots of monitoring and 2. getting functioning with less monitoring. During the second level, Jorden can visit. The nurses will focus on getting me to drink and eat (I'm bringing my own gf crackers), walk, and pee. 

 

I'm one of those folks who doesn't recover well from anesthesia. It takes me a really long time to come up out of it. When I do, I feel very sick and puke. I've let the medical professionals know, and I'll do it again tonight when they call and tomorrow during the pre-op prep discussions with the anesthesiologist. During the class, the nurse said they can medicate me to try to prevent it. Hopefully, that will work. 

 

After I'm released, Jorden will take me home and stay until Patty comes to keep me company and help me out until I don't need so much help. It's difficult for me not to want to play hostess with the mostess because it's what I enjoy (and I'll be baking a pear and cranberry pie today because I can't help myself when it comes to guests. THERE WILL BE PIE.). But, I'll just have to get used to asking for help and letting folks do for me for a bit. 

 

The scheduler said not to expect a huge amount of pain, but to know that I'll be wiped out. I also won't be able to use ice on the breast because it will slow down the healing there. It will be Alleve and many distractions for me. I'll need to do a series of exercises and lots of deep breathing, but will not be able to raise my left hand above my head for a week. At my request, Thom gave me a crew cut (which I dyed purple), so dealing with my hair won't be a worry for a while.

 

After the second day, I'll be taking lots of walks. Also after day 2, I'll be able to shower and remove the pressure dressing on the wound. 24-hours a day, I'll be wearing a sports bra to help with healing. During week 2 and forward, there will be additional exercises. 

 

It's going to be 6-8 weeks before I can do things like lift anything heavier than 10 lbs (laundry will be very light loads and not very ecologically friendly for a few weeks). When I'm back at work, my wonderful intern will be lifting the archives boxes for me and pushing the carts around for a bit. When it is time to restock groceries, my work friend and walking partner has volunteered to take care of that for me. 

 

I'm most concerned about cleaning my house. Those of you who have visited know that I keep the place really tidy. It's going to drive me a bit nuts not to be able to do it. I'm not going to hire someone I don't know to be in my home, mostly because I'm now in the highest risk group for covid. I know, keeping the place ship shape is small potatoes compared to my health. Still, I have a feeling I'll be doing what I can with my right arm. And today, you know I'll be cleaning like a person on a mission. 

 

Some friends have asked what they can do. My answer is, "I'm not sure yet, but I'll let you know. In the meantime, please think positive thoughts or pray for me and all the medical professionals who will be treating me, if you like." That's it for now. I'll post another update when I feel up to it after the surgery.

Oh, and go get screened.

 

The Breast Cancer Diaries, vol. 1, issue 2

1 in every 8 women gets breast cancer during her lifetime. Get screened folks. Early detection is key.

 

Update at the bottom of the post.

 

A month ago, when it became clear that my life was about to change dramatically due to the breast cancer diagnosis, I had no idea what I'd be in for. I had others' experience to draw from and what medical professionals were telling me, sure. But my experience so far has been that there are a lot more tests than I expected, many more doctors and medical staff, and a few really crappy interactions. 

 

I'd like to share with you about what happened to me yesterday. Part of it falls squarely into the third category. 

 

This paragraph contains some warnings. If they don't concern you, feel free to skip ahead. Some of you may think that it's "too much information." If that's the case, feel free to stop reading now. Some of you might be grossed out by it. Again, feel free to stop reading now. Some might be triggered, so let me warn you -- this post contains details of a medical, specifically gynecological, nature that was a painful experience not just physically, but emotionally.

 

Here we go. I'm taking a deep breath, too.

 

I'll need to give you a little background first. It's important to the story. 

 

For about 5 years, I greatly enjoyed the benefits of taking progesterone (plant-based, compounded by a pharmacy) to address perimenopausal symptoms. It's amazing stuff. Helps with balancing mood swings, sleep, and regulating periods. 

 

A month ago, when my surgeon first said that she saw cancer on my mammogram, she told me to stop taking the progesterone. So I did. Ten days later, on the afternoon of my biopsy no less, I started bleeding. It was unlike any cycle I'd had before. It lasted much longer and was much heavier than I'd experienced even before the progesterone. Then, it stopped. But not for long. 

 

On Oct. 4, 3 days later, I started bleeding again and didn't stop until today. It was nuts and worrying. I did some research and found out that when women stop taking their hormone replacement therapy suddenly, this could happen. I already had scheduled my annual with a new gynecologist because my doc had retired, so I saw him yesterday. 

 

First, there was a bit of confusion because he expected to have a 15-minute annual exam experience instead of having a conversation with a fully dressed woman. 

 

Yes, it's true that I've been seeing a lot of people for the first time in a disposable gown in the last month. However, ALL of them have been women, with the exception of the radiologist who recommended seeing a breast surgeon after he interpreted my breast ultrasound (as opposed to the female tech who performed the test). 

 

Back to the gyno... As soon as I told him that I was there because of the extended and excessive bleeding after stopping the progesterone, along with the breast cancer diagnosis, he was off and running. He talked to me at length about genetic testing, ovarian cancer, ovarian removal, and prophylactic double mastectomies. I have the lumpectomy and sentinel lymph node removal in a week. I was overwhelmed. And, upset. 

 

But, I held it together because I wanted to hear what he had to say. I asked him if he had read my chart or seen any of my test results. He had not. So, I made a note in my head to have the surgeon send him everything. I also had to tell myself to wait it out because my absolute sweetheart of a gyno wouldn't have hired someone that he didn't trust as his partner and later his successor. 

 

Then, he circled back around to why I was there. He wanted to biopsy my uterus and send me for a transabdominal and a transvaginal ultrasound (essentially, an external and internal ultrasound of my lower abdomen). The gyno wanted to cover all the bases and see if there was anything to be concerned about, especially with regard to the bleeding. And, I'd get all the results prior to my surgery.

 

About the uterine biopsy, he said, "You'll just feel some cramping." So, I said, "OK." Well, it was not at all like cramping. It felt like he was stabbing, pulling, twisting, and burning me inside all at the same time for about 5 minutes straight. After he was done, it felt like really bad cramps for about an hour.

I had enough time to go home, eat something so I could take some Alleve, and cry on the phone to Patty. She showed up for me as very dear friends do and listened as I unfurled my pain and fear. Then, she helped me put myself together again for the ultrasounds. (Later, I spoke with a handful of my closest and dearest friends, as well as my mom and Patty, again. Just so you all know, I wouldn't be able to survive all this without such amazing support and love.)

 

I drove over to Hillsborough, which was the closest University Radiology with a same-day appointment. The tech was very kind and talked with me through both procedures. She said, "You are a very strong woman. You will get through this." I said, "I know I'm strong. It just feels like a lot being piled on at once."

 

For the transabdominal, you must have a full bladder (no peeing within an hour, and 24 oz of water drunk prior to the procedure). She did that test first, and I tried hard to think dry thoughts and not pee all over the exam table while she pushed on my bladder. 24 oz is a lot of water for someone with a small bladder. By the time I'd peed and returned for the internal ultrasound, my bladder had already refilled. 

 

"Adding insult to injury" falls a bit short of what came to mind. Not only was it painful due to the biopsy just hours before, but I really needed to empty out again. She was very thorough, which made her a professional I'd prefer to have. However, I was in pain and just wanted it to end. 

 

During the biopsy earlier, no one was talking to me, so I used deep breathing techniques and counted to myself (I also did the same during the breast biopsy last month). During the ultrasounds, because we had an actual conversation, it wasn't as bad. Note to docs: talk with your patients like they're real people during procedures. If you need to concentrate during certain parts, let them know. 

 

Then, it was all over. I had a bit of drive to recover and decided to head up to the mall for some retail therapy. If there's a heaven, there's a place in it for the ladies at J.Jill who had no idea what I'd been through and treated me like a queen when I needed it. 

 

When I had the breast biopsy last month, it occurred to me that it would be just the first in a long series of medical procedures. How little I knew. I'm sure I'll be saying it again a month from now. 

 

My goal here is to raise awareness about breast cancer and treatment. I'll keep writing about my journey here because I think it's important, and maybe it will convince someone on the fence to go get their mammogram sooner rather than later. Early detection is key.

 

Update (from 10/13/2021): The gyno just called with the results. Everything is negative. So, yay! Only a small simple cyst on my left ovary and a tiny fibroid. We'll repeat the ultrasound in a few months to keep an eye on things. 

 

I spoke with the doc at length about the experience, and he was very receptive and open to my honesty and recommendations for future patients, especially with regard to uterine biopsies. He said that he based his judgement about how to talk with me on my knowledge of my situation. But, he heard me when I spoke to him about it feeling like having been piled on upon, especially when he hadn't read my chart or seen my results yet (which he now has because I asked him to take a look). Because he heard me and responded in a way that let me know he did, and because he appreciated my honesty, I will stick with him.

The Breast Cancer Diaries, vol. 1, issue 1

For the past month, I've been posting in my Facebook friends feed about my breast cancer experience. Because it's been valuable not just for me, but for the many other women who have experienced it, I've decided to make the posts public here. 

This is the first one: 

Just in time for Breast Cancer Awareness Month...

 

Get screened folks. 

 

Last month, during my regular mammogram, something came up, and I was asked to return for an advanced mammo and ultrasound. The radiologist found a small mass in my left breast and recommended I seek a breast surgeon. I did, and she showed me what was raising all kinds of flags for her. 

 

The surgeon identified it as stage 1 and told me that the purpose of the biopsy would be to see what type of cancer it is, how fast it's growing, and what feeds it. The biopsy revealed that I have an invasive ductal carcinoma that likes to eat estrogen and progesterone. 

 

So, later this month, the surgeon will conduct a lumpectomy and remove the sentinel lymph node to see if it's moved beyond the breast. A month later, I'll start radiation therapy and begin taking an estrogen blocker. 

 

I know some of you might be flipping out about this because it's cancer -- and that's scary. But, we've caught it very early because I went and got a mammogram. If you didn't get screened this year, please consider getting a mammogram. 

 

Go get screened.