This Phoenix Will Rise Again

This Phoenix Will Rise Again

The fire and ashes are building all around me. I’ve been through this cycle of burning down and rising up from the ashes before, and I will do it again. Metastatic Breast Cancer. My current set-back.  As a breast cancer survivor, it’s not an unexpected hurdle. Sadly, I’ve witnessed my peers going through similar difficulties. All I can do is take it day by day, trust my treatment plan, and do my best to redefine myself once more.

I haven’t been feeling well for some time. I wrote it off to my slow recovery from the knee injury, and the fact that I have not been able to get back into a regular exercise routine. This spring, I generally felt weak and out of shape. About a month ago, my symptoms were getting noticeably worse. I had shortness of breath, and I developed wheezing and a cough. I have to say, this is the worst cough I’ve ever had. And I’ve had all forms of bronchitis, pneumonia, etc. This is definitely worse.

On July 23rd, I went to the ER with sharp pain in my ribs along with the severe cough and shortness of breath. I knew something was not right with my lungs. After a number of tests, I ended up being hospitalized overnight. They found that I have pleural effusion (fluid in the lining around both my lungs). They did a thoracentesis (stuck a catheter into the pleural cavity via my back- yes, I was awake…) on the right side to drain the fluid and sent it for analysis. The left side was more complicated. The fluid was loculated, hardened into multiple, fibrotic pockets, therefore, not free flowing nor able to drain. I was told at this time that surgery would be the only way to clear the gunk from my left side.

Over the next week or so, I did several other tests, X-rays, CT scan and blood work. And coughed and coughed. 

On August 1st, I saw my oncologist to try to make sense of the results and develop a treatment plan. The fluid in my pleural cavity (space around my lungs) contains cancer cells that had spread from my original breast tumor. All of the other scans are clear, though, and the cells have not formed any tumors that could be detected. Of course, ILC, Invasive Lobular Carcinoma is known for being extremely difficult to detect via scan, so there’s that grain of salt. 

The cells have changed slightly from the original tumor (ER/PR+HER2- to ER+PR/HER2-), but not enough for me to need to go through chemo again. My doctor will put me on hormone therapies (Ibrance and Faslodex) which attack the cells directly. In her experience with other patients, the cells are quite responsive to this therapy. 

Originally, my oncologist felt that the surgery would be too invasive, and that the treatment would clear up the fluid. However, at my next appointment, on August 9th, when I told her that the cough was becoming unbearable, she called the lung specialist. He advised that since the left side is loculated, it will be difficult for the hormones to get into the fluid to do their thing, and he recommended the surgery. With that, he and my oncologist called a lung surgeon immediately and I got in for an appointment the next day. Yay, the perks of having a dream team of connected super-doctors.

Yesterday, August 10th, I met with the lung surgeon to discuss a robotic surgery, called thorascopy (no, I will NOT be awake this time). He will make a small incision and insert a camera, and several other incisions for the surgical instruments that will be used to “break up” the pockets and scrape out the goo. After that, there are two possible outcomes. Either my lung will re-inflate and he will put talc in the cavity to make the lung stick to the pleural lining so that fluid can’t re-fill the cavity. Or, my lung won’t re-inflate, due to damage or tumors or other bad stuff, and he will need to leave a catheter (chest tube) in so that the fluid can continue to drain. This could be for a matter of weeks or months. I’m pulling for option one! But, at this point, I’ll do whatever it takes to relieve the cough and get the cancer cells out. If that means a chest tube, then that means a chest tube. Depending on the outcome, I could be in the hospital for one night or for several nights.

Wasting no time, surgery is scheduled for this Monday, August 13th. This is the least amount of time I’ve ever had to prepare for surgery. My pre-surgery nesting mode is kicking in to high gear, but I don’t really have the energy to do the things on my “to-do” list, so I’m just going to have to accept that stuff isn’t going to get done before surgery. Surgery and healing are my number one priority right now.

This is not a hurdle I wanted to face, but it is the hurdle in front of me, so I have no choice but to charge at it and jump it. Overall, I am very positive about fully recovering from this. Right now, I am laying low and resting as much as I can (and did I mention, coughing…). I look forward to getting some relief soon with the surgery. I will keep everyone updated as new info comes in. 

Hair Raising

Literally.  Watching hair grow.

Because I had too much time on my hands last year, and not much energy, I started taking daily selfies.  Watch time fly and hair grow as I document the rapid changes that took place over the past year of cancer treatment.  When I first knew I would lose my hair, I let my kids cut it short and we donated the ponytails.  Then we added some color.  Soon the razor came out, and it was gone.  Next, a fabulous Henna Tattoo.  And, finally, one day in July, chemotherapy was over, and the long slow process of raising hair began.

Cancerversary

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One year ago today, I heard the words, “you have breast cancer”, forever changing my life and challenging my limits over the course of the year. I’ll never forget that day. My time on this planet became more precious that day, and my future became more fragile. Looking back brings a flood of emotion as I recall the experience of that moment in time, now altered by the lens of time and new perspective. I’ll count this year, and every year that passes, as progress towards the goal of so many survivors – stay on the right side of the percentages to become a 5-year survivor, a 10-year survivor, and on and on.

Amongst cancer survivors, this date is known as a Cancerversary. There is some debate regarding which date truly represents a Cancerversary. Some choose the day they were diagnosed. Others choose the day surgery removed the tumor and they became cancer-free. Others count their anniversary as the day they complete all active treatment. For me, there are several dates that will forever stand as milestones on this journey. I mark January 31st as my Cancerversary, the day I learned of my diagnosis, a day I will never forget. I consider February 24th as my Cancer-Free Versary, the day I became cancer free. Other dates also are permanently etched into my mind; the first day of chemo, last day of chemo, end of radiation and active treatment, reconstruction surgery.

The details from that day one year ago are as clear today as they were then. I left the doctor’s office knowing that it was not going to be good news when the doctor called me with the results of the biopsy. Too much about the appointment pointed to bad news. I was there for nearly three hours, getting images and more images; a second look, a third look. The way the doctor shook my hand when he came in the room was the way you shake hands at a funeral, with a deep empathy in his eyes. He held the nurse back from her lunch break so that we could do the biopsy right then and there, rather than scheduling for another day. As we were finishing up, the doctor said, “It doesn’t look good, but I’ve been wrong before”. Not a terribly reassuring statement, I left the appointment knowing what I had already suspected.

I expected the doctor’s call late in the afternoon, so Andy took me out to lunch to pass the time and keep my mind busy with something else. The doctor called earlier than I expected, so I barely heard the words over the din of the lunch crowd. His words confirmed the cancer. I shouldn’t have been shocked, I already knew in my gut what the doctor was going to say, but actually hearing it verbalized was a tough blow. I was thankful that Andy was there to hug me and reassure me, as he would come to do frequently over the course of the year. On the ride home, another call came in, this time from my primary care physician, with her referral to a breast surgeon, who she swore she would go to had it been her diagnosis. And, thus began the wild ride of tests, surgeries, and cancer treatment that would dominate my life for a year.

One year has passed. So much has changed. Reflecting back on why it seemed to be such a busy year, I started counting up Doctor’s appointment, which then lead me to review medicals bills. Then, for some reason, those credit card commercials with the “Priceless” theme popped into my head, (some things, money can’t buy. For everything else…).

Cancer Treatment = One year, 177 appointments, 3 hospitals, 2 surgeries, chemotherapy, radiation, hormone therapy
Medical Bills = $646,474 and counting (thank God for good health insurance)
Time lost to sickness, side effects, and recovery = 1 year
Being a Cancer Survivor = Priceless

Neurology, Rheumatology, Oncology and Plastic Surgery

I have said this over and over, yet, as much as I strive to have all things cancer behind me (along with 2014), I am learning that the end is NOT the end. I still have broken pieces to put back together and it will take some work to return to my new normal. I made a good effort to complete everything before the new year, and (let’s be honest) new deductible.

On December 23rd, I had the follow-up with the orthopedic surgeon to hear the results of the MRI on my knee. That frustrating appointment left me with no reason for the sharp pain in my left knee that I’ve been dealing with for 4 months, and, frankly, the surgeon treated me like I was nuts. The MRI, x-rays and exams all show that my knee is structurally in good condition. I guess that is good news- I won’t be facing knee surgery. But the bad news is, the pain is debilitating, and there appears to be no cause, thus, no solution. The next step is to see a rheumatologist to try to discover a cause.

On December 30th, I managed to squeeze in 3 more appointments, scattered all over town. Luckily, my boyfriend accompanied me, so the full day with doctors wasn’t as dull as it might have been. First, I met with a neurologist to find out what caused my arm to go numb and weak after surgery. The surgeon and anesthesiologist had told me that most of these types of nerve problems are caused by poor positioning during surgery, which stresses, or overextends the nerve. They said most instances will resolve after 2 weeks. It has now been 3 weeks and, though there is some improvement, my arm is still numb and very weak. The neurologist scheduled me for an EMG test, which is done to find the cause of nerve problems, along with physical therapy to work on strengthening the muscles.

Next was the plastic surgeon. I was healing fairly well after another difficult surgery. The hardest part was the unanticipated nerve damage to my left arm, the psychological impact that was having on me, along with my general disappointment with the end results of the surgery. My skin was in a really delicate state due to radiation. Also, my pectoralis muscles on the radiated side were showing signs of radiation fibrosis, which is the abnormal production of the protein, fibrin, which accumulates in and damages the radiated tissue. The damage to the muscle is making the muscle very tight, limiting my movements and also deforming the shape of my breast. The surgeon again reassured me that I still needed time to heal, and that things would look better as inflammation goes down.

The final appointment was back to the Vince Lombardi Cancer Clinic to have lab work completed in order to get back in the clinical trial and on the study drug again. I was nervous about having blood drawn in my arm now that I no longer had a port, because I still wasn’t convinced that the IV didn’t contribute to the nerve damage in my arm, and I also fear the risk of lymphedema. As usual, though, my fear was worse than the reality and the blood draw went smoothly. My numbers had returned to normal, so they sent me on my way to continue with the pills, only at a lower dosage to prevent it from effecting my blood cell counts.

I think my New Year’s Resolution is going to be less doctor’s appointments in 2015.

New Year, New Chapter

New Year, New Chapter

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Goodbye 2014. You taught me a lot. I learned to get beyond my personal limitations. I learned to see the important things and set aside the unimportant or harmful. The highs were higher, and the lows were lower. I learned that I am stronger than I thought, and I learned that I am weaker than I thought, too. Everything was simply MORE. Than usual. Of course, that could just be my perspective, having had a look into the face of my own mortality.

Early in the year, when this journey still held so much of the unknown, I was not sure I would live to see another year. Dreams put off would be forever lost. Fears of leaving my young children behind were prescient. Regrets for not getting to the doctor earlier would never change the path for me, no matter how much I wanted it to change. I simply had to follow this path, one day at a time, trusting that the doctors would get me through to see another year.

What a difference a year makes. 2014 was the first year in a long time that I didn’t work myself into the ground, physically, putting off healthy habits in exchange for the need to work. Hard. Cancer was my rude wake up call. I was forced to turn my focus to reclaiming my health, whatever that took. Reclaiming healthy habits needed to be my number one priority. I made it. I am now at the conclusion of my active treatment against cancer. I can say that I am a cancer survivor, currently living with No Evidence of Disease. Now, on this first day of a new year, I am shifting my reflections towards the next chapter.

This New Year’s holds a different significance for me. I’m not one to make resolutions (that we all know won’t be kept). But I will take the opportunity to symbolically close a tough chapter, a chance to start a whole new chapter. I admit that I feel a bit lost and not sure what this new chapter will entail. I do know that I want to embrace it, and live life as fully as I can, not putting off dreams anymore to a future that may or may not come, not letting fears or hang-ups stop me. I want to find a bigger purpose for my life, a way to give back, to help other women who are facing this journey.

Andy and I have been brainstorming a lot about ways to raise funds for the programs that helped me along the way. There seem to be a lot of resources and support for women who are actively undergoing treatment, but at the end of the day, when treatment is done, lots of women are left feeling lost, depressed, suffering from PTSD and facing fears of recurrence. Most of the foundations raising funds for Breast Cancer have a strong focus on awareness, early detection, self exams and regular mammograms. That did not help me. I did not detect my cancer early. My regular mammograms did not detect my cancer at all. I never knew that there was a type of breast cancer that was not found by mammography. If I had waited until my next mammogram, I might not be here today to start this new chapter.  With this New Year, I received the gift of a second chance. I hope to make it a great one!

Happy 2015.

I Endured Surgery and All I Got was this Lousy T-shirt

I Endured Surgery and All I Got was this Lousy T-shirt

I’m not quite sure what I was expecting when I returned to the plastic surgeon’s office a week after reconstruction surgery. Completely uncomfortable, off the pain pills, I was more than ready to get the dressings, tubes and stitches out and see what my new look was going to be. Since the time of my bilateral mastectomy, it’s been a running joke that I would soon be trading in the awkward tissue expanders for new “perky Bs” that would suit my athletic lifestyle. I was excited all week to see how they turned out, so I was completely unprepared for my actual reaction to the first look at my chest.

The doctor made a point to say, “now, don’t judge based on your first look at things”. There is still the healing process to go through, and I was very bruised and swollen. But it’s easier said than done. I didn’t like what I saw. The area of damaged skin that had to be removed made the right scar painfully tight, in turn pulling and deforming the shape of the right breast. Radiation does so much damage to the area that this can be a common problem. The procedure included fat grafting, where they take fat from my stomach to fill in the areas around the implants to “soften the look”. The end result made the right side even more lumpy and misshaped, to the extent that the doctor said, “it may need more work.” After the rough week I just had, the last thing I want is more surgery.

On top of the sleeplessness, pain, and disappointment with my new look, there is the much more disconcerting problem of my left arm. It is still numb, extremely weak and I am not able to control my movements very well. I now am being sent to a neurologist to see what went wrong. In the meantime, I am not letting anyone draw blood from my arms (since I fear that the IV might have had something to do with the nerve damage), which may cause me to be kicked out of the clinical trial that I am in for a very promising drug used with stage 4 breast cancers to decrease rates of recurrence. Hopefully, I can get everything checked out before I lose my spot in the study.

Once again, I was hoping to get out of town this winter break, but now I have one kid on the couch with a fever of 102, an appointment tomorrow to find out the results of the MRI on my knee (which had to be postponed since September because of the metal in the tissue expanders), and appointments next week with the neurologist and surgeon. And today, of course, I woke up with a bad sore throat….

Oh, I almost forgot – about that shirt I mentioned in the title. I bought it months ago with the intention of wearing it home after reconstruction. Unfortunately, one week after surgery, I still was not agile enough to actually put the shirt on…At that point, I was in tears anyway and not feeling lighthearted enough for self-deprecating humor. The next few days were rough.

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Happy Holidays! I think I’ll sleep until 2015!

Livestrong

Livestrong

As of Tuesday, I am a graduate of the Livestrong program at the YMCA (I even have a certificate!). Livestrong is a 12 week program designed to help cancer survivors achieve their health goals. I would highly recommend the program to anyone just finishing cancer treatment, unsure about how to rebuild after the difficulties they’ve just faced.

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While I still have a ways to go to regain the strength and fitness level that I had prior to cancer treatment, I feel like it was an excellent way to start. Participants in the Livestrong program get a free Y membership for the duration of the program, too. My class met twice a week, and it was just the push I needed to get off the couch and hit the gym. It was extremely difficult to find the motivation, and the energy, to exercise during chemo and radiation, but having a class to look forward to was an excellent way to get me out of that mode.

I’ve always had a physical lifestyle. I love jogging, biking, swimming, hiking, playing sports, and on and on. But I’ve never been terribly interested in “classes”, or group exercise. I have to say, there was something invaluable about being part of this group exercise program, though. For me, it was less about the exercise, and more about the camaraderie I found in a group of women who had recently gone through the same treatments and challenges that I had. It was the opportunity to talk about our experiences that motivated me to go every week. My group was very small, only 3 of us came regularly, and we grew comfortable talking about some personal stuff. It became like an intimate support group ( another thing I’ve never really been interested in). We were there to encourage each other and cheer at our small successes.

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Over the 12 weeks, we tracked our progress and did a baseline and post-class assessment of our progress. I’m proud to say that I improved in the areas of endurance, strength and flexibility! I hope to keep working toward my goal this winter. One more hurdle to clear, with surgery imminent, but after that I’m on track to join Team Phoenix at Aurora next spring! (more on that in future blog posts…)