Port Support

I am sitting in my quiet house, remembering a special moment with a smile on my face, so I thought I would share this happy moment. Prior to my first round of chemo, I had an appointment to meet with the radiation oncologist. The wait was especially long that day, and I was nervously anticipating my first experience with chemo which was scheduled immediately after this appointment. Finally, it was my turn to head to the exam room with the nurse. We went through a long list of questions, and then it was time to get a gown on and wait for the doctor. As the nurse was leaving, I decided to show her the love notes that my kids had drawn on my skin surrounding the port where the drugs would be infused. That morning, I had asked them to write something there for me. It was my attempt to ease some of the fears they were having about their mom heading off for chemo. I told them it was “port support”. The nurse said she’d never seen anyone come in with love notes written on them before. She told me that there are special things that she sees only occasionally. Things that will forever remain in her memory. This was one of those things she said she would never forget. She was so moved that she nearly came to tears, and gave me a great, big huge. I left the appointment with such a warm, happy feeling.

Can you guess which of my creative, artistic kids wrapped the love all the way around my back?

port support

Love notes surrounding my port

port support

Bad Breaks, Set Backs, and Side Effects

That feeling of well-being that I had on Sunday morning, when the sun was rising beautifully and the birds were singing, and I momentarily felt like all was right with the world, was short lived. By Sunday afternoon, a whole new set of side effects hit me and I was right back to feeling awful. I’ll spare the details, but Sunday night was one rough night. Somehow, Monday morning I managed to wake the kids up for school. I shouted occasional commands from bed now and then to make sure they were actually getting themselves ready for school, and, miraculously, they got out the door on time. Thankfully, my wonderful next door neighbor drove them to school all week while I was down and out, and my other friends took turns shuffling them to various after school activities. I simply would not have been able to do it.

Monday afternoon I was scheduled for physical therapy. I debated about canceling, but I decided that sometimes just the act of getting out of the house and walking around in fresh air can help. I am glad I did. I definitely felt better walking out than I did walking in. Afterwards, I checked in at the Vince Lombardi Cancer Clinic to let them know how I was feeling. This was another good decision. They drew blood and found that my white blood cell count was 0. They set me up with an IV so I could rehydrate. I managed to pick the kids up on my way home. Then I collapsed on the couch. Luckily, I had a friend with me who handled groceries, laundry and dinner preparations.

Monday and Tuesday were definitely low points. I was so sick, weak and dehydrated that I could barely handle the walk from the bed to the couch and back to bed. I had to force myself to eat and was encouraged (repeatedly) to keep drinking water and gatorade. I slept a lot.

Wednesday, feeling a little better, I called and scheduled to see the oncologist. She walked into the exam room with the list of symptoms I’d been having, and said, “well, looks like you have all the side effects”. She was apologetic because, prior to chemo, she had pretty emphatically assured me that many patients don’t have any side effects, and that she would do everything possible to preemptively counter any side effects. She then went on to say that we could change up the regimen, but in her experience the best survivorship is with the current regimen. So, needless to say, I’ll have what they’re having….

We determined that it may have been a mistake to stop the steroids early (because I wasn’t sleeping). That could be the reason I experienced so many side effects. Learning from round one, we can tackle round two with this knowledge and do a couple things differently to, hopefully, make it smoother. I’ll keep up with the steroids, but add sleeping pills so I can get my beauty rest. I will get additional IV fluids for a couple of days following chemo, and I’ll stay ahead of the anti-nausea drugs. Other than that, now I know what to expect. I can do it. I know now that I will need to take offers of help from my friends the week of April 8th for round two.

Today is Thursday and, like the gloomy, cold rain outside my window, it is unpleasant. But rain, sometimes gloomy and unpleasant, is also a necessary part of any spring. The rain is here to wash away the dirt and grime of a difficult season.

rainy day

Round One – Ding

The day had arrived, Tuesday, March 18th, for round one of chemotherapy.  Part of preparing for, and, hopefully, countering the effects of chemo, involves taking steroids, beginning the day before chemo and continuing for 5 days.  I had no idea what that little pill would do to my life.  I am normally a very mellow person, falsely propped up by a nice cup of coffee each morning to get me through the day. I love my coffee.  Well, no need for coffee when steroids are involved. Steroids make me hyper.  To say the least.  Monday was productive, my most energetic day since surgery.  I cleaned the house, made dinner, prepared the slow cooker for Tuesday night’s dinner, and then, stayed up most of the night.  On the bright side, staying up all night did give me a chance to get on a discussion board to have some last minute questions answered regarding what to expect from chemo.  I figured, surely, I’ll sleep during the 4 hours chemo session.

I arrived at the hospital at 9am, and made my way up to a couple of pre-chemo appointments, that, in my opinion, could have waited.  After that, it was time to check my blood work to be sure I was really ready.  Being relatively healthy (otherwise), everything looked good.  With the IV line secured in the port, I made my way back to, as I’ve (affectionately?) named it, my “chemo-cave”.  In addition to having a great staff around me, I have to say, the facility is nice.  They have included everything one could think of to make chemotherapy a comfortable experience.  Each “cave” is fully enclosed by curtains, though I left mine open so I could look at the photographs of beautiful beaches that line the walls.  I have a reclining, heated, massage chair, personal TV, heated blankets, snacks, and a volunteer art therapist and massage therapist at the ready.  I also came prepared with a favorite blanket from home (per middle of the night advice from the discussion board), snacks, books, and my phone; complete with music, audio books, social media, etc.  But, I wouldn’t need all of that.  Surely, I would take a four hour nap.

The first med up into the IV – Steroids!  So, never mind that nap….

I got my books out and settled under my blanket.  Every so often, new things were added to the IV.  Anti-nausea meds and various other things to ease the impact of the chemo drugs.  After about an hour, the first of three chemo drugs was added to the mix.  I am getting the full package, the works, as the nurses are calling it.  TAC.  Taxotere, Adriamycin, Cyclophosphamide.  There was nothing to it.  I had anticipated more sensations, tastes or something, based on the long list of potential experiences expressed by my “chemo coach”.  I really didn’t notice anything.  So, I read my book, colored with the art therapists’ supplies, listened to some music, and had the nurse whip up some popcorn.  Time passed.  It was time to go home.  I walked out, feeling good.

mandala

My dad gave me a ride home from the hospital, but I feel that I would have been fine to drive.  My mom, my kids, and my slow cooker dinner were waiting for me at home.  Dinner hit the spot, and we went on with our usual school night routine.  Later that evening, I started to feel slightly off.  I think I may have been okay if I had been able to sleep. The minute I got in bed, my heart started pounding, my mind racing and a general crappy, nauseous, feeling started to take over.  Reminiscent of my morning sickness days, I lined up crackers and water by my bedside, and tossed and turned all night.  The day started with an overwhelming exhaustion, queasiness and a touch of wired energy.

Wednesday afternoon, it was back to the hospital for physical therapy and a shot called Nuelasta, which is given 24 hours post chemo, to boost the bone marrow to kick up production of blood cells.  The side effect of the shot is bone pain.  I am involved in a study comparing a couple different options for managing this pain. The option I am taking, apparently, is not working.

By Thursday, all of the symptoms were hitting me. This was not unexpected.  Based on everything I read and learned from the nurses and discussion boards, day 1 and 2 are controlled by the steroids, anti-nausea meds and all the rest.  Day 3, 4 and 5 are expected to be the worst.  Thursday was day 3.  On top of the exhaustion from lack of sleep, I generally felt dizzy, queasy and when the bone pain hit, it made me feel like I’d been run over by the flu.  I would compare the pain to Dengue Fever, which I had in the 90s, courtesy of a rendezvous with a mosquito in Jamaica. I’ll never forget that pain.  It felt like all of my ligaments were removed and my bones were left to clatter against one  another.  Imagine the achy joints and pains associated with the flu.  Multiply by 5.  Add a smashing headache, with a distinct pain behind the eyes, and that is Dengue Fever.  Moving hurt.  Everything hurt, actually.

Friday everything peaked.  In a nutshell, on Friday I felt like I had Dengue Fever with morning sickness, exacerbated by sleep deprivation and the pain of recovering from major surgery. It was also pizza and movie night with the kids.  I managed to make it through the movie and tuck the kids in before collapsing on the bed.  Thankfully, the kids had a fun weekend planned with their cousin, so that I can rest and rebuild.

As I write this, on day 6, I feel like I’m over the hump on my first round of chemotherapy.  It is early Sunday morning.  I am sitting on my couch, watching the sky change from black, to blue-green to pink and orange, the birds are singing, and I’m feeling alright.

Chemotherapy, Physical Therapy, Oncology and Cardiology.

Milwaukee Lakefront

I found myself facing another full week of doctors appointments leading to the tentative chemotherapy start date of March 12.  The first appointment would be on Monday – “chemo coaching”.  Monday also was the first day the temperature reached nearly 60 degrees.  Believe me, after this brutal winter of the polar vortex variety, it felt wonderful.  Those of you who live in Wisconsin know the implications of these warm, “teaser’ days in early spring.  You have to get out and enjoy any taste of warm, spring-like weather at every chance, because, if you pause, it will be gone.

I wasn’t going to miss it.  I headed straight for the beach.  I found the serenity and balance I needed while strolling up and down the lakefront.  It felt so good to take a first long walk after surgery.  The feel of fresh air filling my lungs, the sight of the beach in it’s strange transition from winter to spring; with ice flows and melting water creating rivers and waterfalls on the beach. To actually feel a touch of the sun on my face after such a long winter was delicious.  If I can balance myself like that every day, I might just sail through this…

When it was time for my appointment, I was fearing the stark contrast of the chemo ward to my calming beach experience.  Though, I quickly found a comfortable rapport with the staff, and the discussion of what is to come flowed easily.  All of my questions were answered, and I got a sense of the place.  It is quite comfortable.  I will have my own little curtain enclosed chemo-cave, complete with a reclining massage chair, roaming massage therapists, and cable TV, though I plan to bring books, music and audio books to pass the time.  I can bring a blanket and snacks and anything I need for the 4 hour treatment.  I can even have visitors, so if you’d like to help me pass the time, stop in and say hi.

Tuesday, I was sent to have an echocardiogram, because the chemo regimen I will be doing can be hard on the heart.  This was the most unpleasant experience.  Two and a half weeks post bilateral mastectomy is not the time to do this test.  It involves getting images and sounds from the heart via ultrasound.  What this entails is pressure, as the ultrasound wand jabs into my chest, ribs, and sternum to get angles on the heart.  It was excruciating. Thirty minutes of excruciating.  To add to the negativity of the experience, my friend had his cell phone stolen right from under our noses in the waiting room.  A woman came over and asked him to help her understand a paper she was reading.  He set the phone on our coats, took the paper, and helped her.  In return, she took his phone (his new phone, by the way).  Honestly?  Robbing someone in a hospital waiting room is a new low.  I hope she really needed that phone…

From there, we drove to Mequon to see the plastic surgeon for the first injection of saline into the tissue expanders.  This is a whole separate blog post in and of itself.  In a nutshell, the doctor uses a huge syringe to inject 100ccs of saline into the expander which is in place under my chest muscles.  The purpose of which is to expand (hence the name) the muscles, skin and tissue gradually so that, in the end, there will be room to perform a breast reconstruction.  I would compare the sensation to doing 5,000 pushups with bruised ribs, swollen tissue and stretched stitches; maybe. Though, I’ve never actually done that.

Tuesday night involved a pre-chemo margarita with some close friends.  Again, I’m taking all the breaks I can fit in to laugh and enjoy each day throughout this journey.  Besides, my “chemo-coach” gave the thumbs up to a pre-chemo margarita.  There was even some joking about making it a regular part of the preparation regimen.  I like this idea… Margaritas on a 20 day cycle, TAC chemo cocktail on a 21 day cycle.  I left Corazon (shout out to my favorite, little Riverwest restaurant) feeling happy, loved, and mentally prepared to take on chemotherapy.

Wednesday’s appointment schedule was packed.  It involve Physical Therapy (PT deserves its own post, as well), followed by a visit with the surgeon to get her thumbs up, blood draws, and the final meeting to get the go-ahead from the medical oncologist.  With that, chemotherapy was set to begin that afternoon.  They shuffled me around to these various appointments, and all was going well, all hurdles were being cleared…

…until the final hurdle with the oncologist.  Apparently, based on the echo, the oncologist wanted to postpone chemo until I could meet with a cardiologist to make sure that my heart could stand up to chemo.  Hmmmm.  This threw me.  I have always been really athletic and in pretty good shape.  My blood pressure has always been low, so I panicked a bit when I heard I needed to see a cardiologist.  Luckily, they got me in right away for a Thursday appointment.   The hardest part in all of this has been the waiting.  While waiting for information and answers, my mind naturally goes off thinking things it has no business thinking.

After adjusting my mind set to accommodate the change to my first day of chemotherapy, I now had the rest of Wednesday free.  Happily, that meant I could go to my kids’ parent teacher conferences.  It’s always good news at their school.  My kids do great at school and their teachers always love having them in their classes.  I got lots of hugs and support from other parents and teachers who are aware of my situation.  This conference was one of my proudest moments.  My 10 year olds’ teacher said some of the most positive and uplifting things about the strength she sees in Kaylei with all that she is struggling with.  Kaylei is a sensitive girl who does not like change. At. All.  Yet, she is taking this with such grace.  I couldn’t be more proud of both of my daughters.  They are so young, and have had to face some really difficult times, and they are doing well.  I am glad to have them on my team.  They are going to be tough forces in this life!

cards from school

Thursday, it was time to see the cardiologist to find out what kind of heart issue an active, healthy person could possibly have.  It turns out I have an ejection fraction of 52%, putting me in the low-normal range (normal bottoms out at 50%, but for TAC chemo, they like to see 55%).  What does that mean?  Ejection fraction represents the volumetric fraction of blood pumped out of the left and right ventricle with each heartbeat. What I took away from the description is that my healthy, active heart works so efficiently that it functions smoothly without having to work too hard.  That sounds like a good thing.  The problem is that the chemo will be an additional strain on my heart, and they want those numbers up.  The cardiologist prescribed a medication that will increase my heartbeat, and the volume my heart puts out, and cleared me for TAC chemo.  My heart will need to be further monitored during chemo, meaning more echocardiograms… Yay!

Friday, back for PT.  From there, I went to the Vince Lombardi Cancer Clinic to find out when I would begin chemo now that all of the additional hurdles were cleared.  All set to start, again, this Tuesday, March 18th.

Mental preparations will continue this weekend.  I got in some roller derby last night (spectating, not participating.  Thank goodness, because there were ambulance calls on the floor this time…).  Tomorrow is the big day for hair cutting, decorating and coloring with the kids!  And then, Milwaukee, I have a St. Patrick’s Day to tend to before Tuesday.  Friends, where are we celebrating?

Post Surgery, Staging, and Chemotherapy

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February 5th was my first post-op appointment with the surgeon, who, along the way, has proven to be the rock star amongst surgeons in my area.  Everyone, from the primary care physician who referred me to her, to all the other doctors, technicians, nurses, therapists, and on and on, had the same rave reviews. I was, indeed, in the best hands.  I heard, over and over again, that she is the first doctor they would choose if they had to go through this.  I mentioned this and thanked her.  In her modesty, she pointed out that the team surrounding her is what makes her so successful.  Anyway, thank you, Dr. Tjoe and your fabulous team.

The appointment went well.  I am feeling strong and healing well.  We reviewed all the usual stuff – medical history, allergies, current medications, vitals, etc.  Although, I’m not sure why we still do this.  After 25 or so appointments in the last month, I’d say it should all be current and up to date by now.  It’s rather like re-introducing yourself repeatedly to a dear, old friend.  I considered changing it up, just to see if anyone was actually paying attention, but decided against it.

Anyway, we then reviewed the pathology report, clarifying some details that I didn’t pick up in the phone discussion.  I now know that my breast cancer is a stage 3A.  Staging is far more complicated than I ever imagined, only determined post surgery with the facts from the pathology report.  It is based on the primary tumor size, lymph node involvement, and whether the cancer has metastasized, or spread, to any other organs.  T (tumor) N (Node) M (metastasis) scores determine the stage of the cancer.  My tumor was a scale-busting 9.5 cm, there were 5 cancerous lymph nodes, and, thankfully, no sign of cancer elsewhere in my body, based on the numerous tests and scans which I underwent prior to surgery.  The end result – my breast cancer is a T3N2M0, or Stage 3A.

With this information in hand, I strolled down the hall, clad in my stylist hospital gown, to meet with the medical oncologist to discuss the next step on this journey.  Once again, reviewing my  history, allergies, current medication, vitals, etc.  Really.  It is all conveniently and electronically on hand in each exam room, so I find it redundant in that unnecessary sort of way.  I have always dotted Is and crossed Ts, so I suppose I appreciate the thoroughness of it all.  Yet, I digress.

Originally, I was told I would recover for a month after surgery before starting chemotherapy.  Apparently, my strong attitude and healthy body made them decide that my recovery is far enough along and they want to start chemotherapy next week, just over two weeks after surgery.   Wow!  I’m not entirely sure I was ready for that.  I had thoughts of a short pre-chemo road trip, pre-chemo margaritas out with some friends, and pre-chemo fun with the kids.  Pre-chemo running away from home even crossed my mind, but friends suggested that it might be a poor choice….

So, Chemotherapy.

But first, a couple more tests just to be sure my body actually is ready as opposed to my strong-will simply putting on a front that it’s ready.  Next week’s visits include an EKG, to make sure my heart is stronger than my head (some might argue that I am strong-headed, stubborn, or, as I now intend to call it, thanks to Dr. Tjoe’s suggestion, full of grit and determination), blood work, physical therapy and a first saline injection into the tissue expander.  The regiment my oncologist wants to go with is called TAC.  It is a combination of three chemotherapy drugs.  If I clear the hurdle of this next round of tests, I will have my first round of chemo on Wednesday.  It will involve a 4 hour visit, with the drugs dripping into the convenient and creepy “port” which I now have protruding just under my left collarbone.  I’ve affectionately called it my “port into another world”, but I’m not convinced I’m going to be a fan of this other world made possible by my “port”.  The following day I return for a shot, whose intended purpose is to minimize the side effects of the chemo.  I wonder if a shot of tequila might also do the trick…

I am Not my Boobs

A full week has passed since my return home from an overnight in the hospital, the result of a bilateral mastectomy.  Improvements felt imperceptible at first.  I was unable to do much of anything for myself that first night at home.  I slept a lot the first few days, in pain, and feeling sick and weak, I struggled to even get out of bed.  Every day, there were greater improvements, though.  Today, I am feeling much better.  The nausea is gone, I’m walking more upright, feeling stronger, able to do more than just sleep.  I am off the pain pills, for the most part, taking ibuprofen during the day and a muscle relaxant occasionally when I’m feeling uncomfortable.

Today was the first day leaving the house for yet another trip to the doctor’s office.  Excited to get out of the house and eager to be rid of the drains necessitated by the surgery, I gladly got ready for the appointment.  It felt good to breathe in fresh air, even if only 20 degree Wisconsin air.  I enjoyed the brief walk outside.

I’ve never been a terribly vain person, and I like to think that I am able to take things as they come to me in life.  Today would be a test of that, as the doctor prepared to remove the dressings covering my chest.  Really, removing the tape actually is the most painful part of these visits.  Kids, don’t let your parents fool you, it really does hurt!  Looking down as the doctor slowly revealed the foreign landscape that was my own chest.  It seemed surreal, not fully sinking in that I was looking at my own body.

Next was to determine if the drains could be removed.  Good news!  The drains were ready to come out.  It was the most hebegebe producing sensation I’ve ever felt.  Not painful, just alien.  Imagine 4 rubber tubes inserted 8 inches into your chest wall being pulled out, 2 at a time.  It really felt like a creature slithering out from within my chest, not quite as dramatic as Alien, of course, but odd.  I certainly don’t miss the extra baggage one bit, though, so I’m glad for that.

That was it.  That was the extent of today’s appointment.  No more drains, no more breasts, no new dressings to cover my chest.  Just me, in the doctor’s office, left to struggle with my clothes.  I did take pause to view my newly altered image in front of the mirror.  It is a dramatic change, less than an ideal look, but deep down, I still feel like the same woman I was going into this, and it is early in the healing process.  Like so much in life, it will take time.

Maybe I should have been more vain in my younger years, because, for now, I will not have much to flaunt on the beach (I was intending to shed a few pounds before swimsuit season.  Yeah.  This was not what I meant…).  I am okay with it, though.  I’ve always been proud of my strong, athletic physique, but also quite modest, more of an introspective person.  That being said, I had a pretty good run in my youth.  My breasts have served me well, from that early, awkward adolescent phase when they first came to me, to later years when they turned a few heads my way.  They fulfilled their ultimate function, too, nursing two babies to health along the way, a cherished experience of nurturing and bonding with my daughters that I’ll always value.  But, I am not my breasts.  Parting with diseased breasts is a small price to pay for the chance at a healthy future.  So, farewell.  Thanks for the memories.

Surgery

Surgery

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With the exhausting array of tests completed, and surgery scheduled for Monday, February 24th, I decided that we all were overdue for a respite from bad news, stress and mid-polar vortex sadness. I booked a room at Country Springs Water Park, so I could have one last, pre-surgery fun weekend getaway with the kids. It was exactly what we needed. Our fun weekend began with, what else, PIZZA!! We devoured huge slices at Classic Slice, then went to watch the Brewcity Bruisers tear up the floor. Alyssa even got to participate in the half-time race, where, apparently, everyone’s a winner!!

The next morning, it was off to the water park, with a detour to buy swimsuits so my rapidly growing children would be properly clad in public, since last year’s suits no longer fit that description. Though it wasn’t quite the equivalent of a Caribbean getaway, it was just what we needed. A whole weekend to focus on nothing but fun, waterslides, junk food, and fu fu fruity drinks. I hit the slides with the kids and floated down the lazy river, and warmed up in the hot tub. Worn out, we fell asleep, cuddling, with a movie playing in the background.

Sunday night, with the kids content, and settled in at their dad’s house, I turned my attention to preparing myself mentally for the difficult surgery I was about to face. I made a big pot of soup, put on a CD called “meditations to promote successful surgery”. I have to say, it was a bit corny, yet comforting in many ways. I had a good night’s sleep. I was ready.

Monday was going to be a long day. I arrived at the hospital at 8:30am to register. There were still tests to be done. Ironically, the geneticist called while I was in the waiting room to inform me that I was BRCA 1/2 negative, which gave me a moments doubt about my decision to proceed with a bilateral mastectomy. In the end, I felt it was still the best decision I could make to prevent a future recurrence of breast cancer from derailing me at an unexpected point in my life down the road. I plan to fight this battle, hard. Once. No turning back.

At 10:30, I was taken to Nuclear Medicine for sentinel node mapping. This would make it easier for the surgeon to find which lymph nodes to biopsy during surgery. Everything was on track and I was ready. Unfortunately, my surgeon was delayed due to the surgery preceding mine, so all I could do was wait, dreaming of food and coffee. Finally, at 4:00, they knocked me out and took me off to the operating room.

I was in surgery for around 7 hours. I’m told everything went well, I think. I was quite out of it that night. I have vague memories of confused conversations. The first clear memory was the fact that the nurse wanted me to stand up at 4am to put on a camisole. Really? I wasn’t having any part of that. They said they would come back at 6am. Barely able to focus, dizzy, and nauseous, they somehow stood me up and pulled a camisole up over my body racked with searing pain. I almost puked on them. Instead, I sat back down and passed out. The next time, standing up wasn’t so bad. I think I made it to the bathroom to struggle with that seemly simple task of using the toilet. I improved rapidly through the morning and was able to get up, stroll the halls, eat some food and the desire to be in my own bed started taking over. By 4:00pm I was cleared to go home and ready.

My first few nights at home have been a challenge, brightened by visits from my kids and good friends bearing flowers and treats! I am gradually beginning to feel better.

The doctor called me yesterday (Feb 28th) with results of the pathology report. The sentinel node was cancerous, so they did a complete lymph node dissection, removing the nodes. 5 out of the 16 nodes removed were cancerous. Because of this, they want to begin chemotherapy as soon as my body heals from surgery. It turns out the tumor, which they suspected to be 5cm, is in fact, a whopping 9.5cm bad boy. Remember, this sneaky, Invasion Lobular Carcinoma barely showed up on my mammogram… They did get clear margins around the tumor, but close, barely meeting the minimum margin. For this reason, I will be undergoing radiation treatment for 6 weeks after completing chemotherapy.

So the worst of step one is behind me now. I am ready to tackle step two, aided by a great support network of strong family and friends keeping me positive. I got this!