Once in a Blue Moon

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I’m changing my handle from “Queen of Side Effects” to “Blue Moon”. It seems every time my doctor talks about side effects that happen only once in a blue moon, they happen to me. And it works well with my last name (Blue Moon Knight). So, yesterday I experienced something that only happens once in a blue moon (in 2% of patients, to be precise).

After working through insurance delays, and lab test, and a surgery to insert a MedPort, I was set to start Taxol, the iv chemo that would be my 3rd line of treatment. 

I arrived at the clinic and went back to the lab area to have blood drawn. I was happy to be able to access the MedPort (more on that procedure in the next post) and give my veins a break from the constant pokes. This is where the day started to go wrong. They could flush saline into the port, but no blood was coming back out of the port. We tried all the tricks-raise one arm, raise both arms, look left and cough, look right and cough. After about 5 syringes of saline, I was sent back to the infusion room to see if the nurse would have any better luck. I ran through all the tricks again, but I drew the line at turning cartwheels. No blood. So, it was time to inject something to break up the clot. Unfortunately, we needed to give it 30 minutes to work, so it was decided to use my arm for the blood draw after all, preventing further delays in starting the IV. 

visit from a friend

At the end of the 30 minute wait, my friend stopped in and gave me some good luck to get the port flowing. It worked and we were back in business! I was hooked up to saline and a variety of pre-meds (Benadryl, steroids, etc) were given to help reduce the side effects of the Taxol. All was going well, and soon I could smell the chocolate chip cookies baking!! Yes, you heard right. Another friend was there volunteering in the clinic, and part of her duties include baking cookies! I got the first one hot out of the oven! I’ll take the silver lining wherever I find it.

A couple hours into the appointment, it was finally time to add the Taxol to my IV. Immediately, my day turned upside down. I felt the drug the instant it hit my bloodstream. Suddenly, everything felt wrong. Thankfully, Andy was there to get the nurse, because I couldn’t function. Within moments, I was having a severe allergic reaction to the new chemo. It’s almost impossible to put the experience into words. I felt heat and pain spread through my body. My heart rate skyrocketed and my blood pressure went out of control. My face turned hot and red and I broke out into a terrible sweat. I was in agony, throwing up, unable to breath, open my eyes or answer questions. I’ve never experienced anything like it before (and hope never to again!) I had three nurses adding stuff to the IV to counter the reaction. I was given oxygen. The doctor suddenly appeared by my side, rubbing my arm, reminding me to breath, asking me questions, and reassuring me that I was going to be okay. My mind was racing almost as fast as my heart. Now what? If I can’t tolerate this treatment, what options do I have left? All of it was completely horrifying. 

Gradually, the meds they gave me started to relieve the symptoms and I was feeling better. They mentioned that we could try the infusion again, at a slower pace, but we all agreed that it wasn’t worth the risk. The reaction the first time was dramatic enough and I wasn’t ready to experience that again. Ever! 

The doctor eased my fears about what we would do next when she explained that my reaction was to the other drugs mixed in with the Taxol. Luckily, there is another version of Taxol which does not contain the same mix. She would switch me to that. Of course, that means one more delay in treatment, pending insurance approval and a holiday weekend. I am now scheduled to start treatment next Tuesday, meaning I will have gone without treatment for over a month. It is frightening to think of what the cancer is doing without anything to fight it, but I am hopeful that the next infusion goes much more smoothly, and I can get back to kicking cancer’s ass. 

In the meantime, Andy’s company gave us two tickets to the Packer game tomorrow night. I am super excited. I’m a lifelong Packer fan who has never been to Lambeau Field. Nothing is going to make me miss this game! Bucket List item-Check!

Changing Course

It has been a summer full of adventure. Some ups and some downs, but overall, a pretty good summer. Amid doctor’s appointments and pills and side effects, we managed to squeeze in a big road trip West, State Fair, Ren Faire, Girls Rock and a couple camping trips. We also started a butterfly garden! This is life with metastatic cancer. You never know when, or where, disease progression will hit. Take every opportunity to take the trip, see the friends, tackle the bucket list. Live fully, in small increments (between naps). Things may change quickly, putting simple things out of reach. 

My first sign of metastasis was a year ago, when fluid filled around my lungs. Chest tubes and Ibrance took care of that for a few months, then the cancer moved to my pelvis. A second drug, Xeloda resolved those problems and I had a few healthy months. In May, I started having new issues in my abdomen. My appetite was terrible, complete with GI issues and a swelling belly. I told my oncologist before our big trip out west, but CT and pet scans showed stability, and she said “take the trip”. I knew in my gut, though, that something wasn’t right. I’m tuned into my body, now more than ever, and I always know something is wrong before any tests confirm it.

July 5th, we loaded up the camping gear, and aimed west with a loose plan. We saw the Bonneville salt flats, and ran fast over the crunchy surface. We went to Crater Lake, Andy’s favorite National Park, and dipped in the unworldly, pristine water. We made it all the way to the pacific coast, where the girls floated in salt water for the first time. We walked among the giant redwoods. Heading back east over twisty mountain passes, we stopped at “Borden State Park” to get to know Adventure Trio and share travel stories around the campfire. Kaylei was the bold one who jumped off the waterfall. We saw the Tetons. We lingered in Custer, SD, where Michelle’s hospitality at Chalet Motel was a warm and welcoming step back in time. We explored caves, roamed with bison and saw the badlands again. We covered a lot of miles. 5,200 miles, to be exact (no breakdowns-well, for the truck, anyway. The kids may have had a few…)

Back home, we had a few days to re-pack for a weekend of camping and the triathlon where a new batch of brave cancer surviving women (Hey Team Phoenix!) became triathletes. We were there to cheer and help take pictures for the team. That was how our July went. I was making the most of everything, even though I was feeling worse and worse. By the Sunday morning of the triathlon (July 28th), I was ready to go to the hospital. Our 5:00 alarm wasn’t going to get me moving. I sent everyone ahead, took some pain pills and caught up in time to watch the race start. Packing up camp was exhausting, but with help from the family, I made it home to unpack. I re-packed  again. This time, it was my hospital bag, an all too familiar process now. 

After several hours of tests, and waiting (mostly waiting) in the ER, I was told I could either leave and let my oncologist order a paracentesis (a procedure to drain fluid from around the abdomen), or be admitted and do the procedure the next day. I couldn’t have waited much longer, so I was admitted for a long, uncomfortable night in the hospital.  I did have a few lovely visitors brighten my mood.

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As the fluid started draining, I could feel instant relief. I could breath better, the nausea stopped, the pain in my spine faded, and I started to feel better. 4.2 Liters of fluid was taken. I’m not sure where I kept it, but I know why I felt like I swallowed a bowling ball and looked pregnant. It was nearly twelve pounds of fluid.

In the hospital, I stopped the oral chemo (it didn’t work…) I would meet with my oncologist to determine my third line of treatment. She went to tumor board with my case and settled on a hormone blocker with another oral chemo. In the meantime, to my shock, the fluid started building with days. Before I could start the new treatment, I was back at the hospital for another paracentesis. This time they drained 2.5 liters (just 2 weeks after the first procedure). 

Friday, Aug 16, I had a few more tests and a consult with the oncologist for the new meds. She entered the room with news that we were changing course. The pills she wanted me on would not work fast enough given that the fluid had came back so fast.  We needed a more aggressive treatment. She told me it was time for IV chemo again.  This was a day I was hoping would be years in the future. IV chemo is usually reserved for late in the game when more aggressive action is necessary. My oncologist assured me that I could go back to try the pill combo once I stabilize. We also discussed Foundation One testing, which could be helpful in tailoring treatments to my needs.

I left the appointment with a lot on my mind – side effects, hair loss, being tethered to weekly appointments. I packed the truck up and headed to the family lake house to relax and prepare for this next step. I missed lake time last year for the first time in my life, in exchange for 6 nights in the hospital with chest tubes, so I wasn’t missing lake time this year! It’s been nice taking a minute, but I’m ready to face the next treatment in hopes that it resolves the fluid and pain. 

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Thursday, I have a small surgery to place a port in my chest, so the chemo drugs don’t damage my veins. Then Friday, I have my first of the weekly Taxol infusions. Weekly treatments limit my wanderlust, so I’m happy we got another long trip in before starting this regime.  Let’s hope this one gives me (a lot) more time. 

Travel has taught me a lot about serendipity and changing course when needed. I trust that my doctor is guiding me in the right direction to get back on the road I want to follow. 

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Health Insurance Blues

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I have a love/hate relationship with my health insurance company. It is a necessary evil. Without it, I would be way beyond medical bankruptcy. With it, insurance providers control aspects of my health care that should be between me and my doctors. There’s not much I can do about it. In my invincible 20’s, I thought I didn’t need health insurance. I was living a very healthy lifestyle. I ate well and got plenty of exercise and sleep. I was healthy. I still am healthy, actually, except for this one thing….

As I got older, I realized I needed insurance. Now I know how lucky I am to have good health insurance. I also know the frustrations. Insurance issues are a common problem in my network of cancer patient friends. Chemo and surgery are being delay, or worse, denied by insurance companies. I understand that medical costs dictate some things, but it hurts to see women who can’t get the life-saving treatments they need because insurance companies won’t pay. The added stress dealing with insurance issues and finances is the last thing a cancer patient needs. Stress kills.

Medical costs with a life-long illness are mind boggling. I stopped adding up expenses after my first year of treatment. I left off around $600,000. Since then, I’ve had 4 more surgeries, several scans, tests, and shockingly costly chemo meds. I’m guessing that by now I’m a million dollar baby. Luckily, My insurance has covered most of my medical bills without too many headaches. This makes my current argument more frustrating. 

Last night, I tossed and turned. I was hit with a panic attack. I don’t know who dropped the ball. Somewhere between my cancer center, the pharmacy, and the insurance company, my chemo meds did not arrive on my doorstep in time for me to start my current cycle. My loving husband is much more calm and cool than I am.  He’s better at handling long waits on hold and repeated conversations that go nowhere. He has spent hours on the phone every day this week trying to get my pills for me. For some unexplained reason, the pharmacy claims we had a change of insurance and did not approve my meds. Our insurance company did not change. We did upgrade our plan as of the first of the year with a lower deductible and co-pay (still trying to avoid medical bankruptcy). The pharmacy already sent one round of pills in January, so I don’t know what the issue is. I’m angry because nobody informed me that there may be an issue with my pills. It’s my third cycle of pills, nothing new or unforeseen. 

I was supposed to start taking them on Sunday. Now it’s Wednesday, and I’m still waiting for the hospital to get a pre-authorization for the insurance company. (And my cancer clinic is closed today due to weather). In the overall scheme of things, missing a week of pills should not have a profound effect my health, I’ve been told. That’s hard to wrap my head around, though. I’ve had a rapid, positive response to this new med after only two cycles, and the delay is messing with my head. Friends have said that I’m lucky to get a nice break from side effects. True enough. Side effects suck. But I can’t help but fear that the delay is giving cancer a chance to regain a foothold. This is not something I should have to stress about. If everyone had done their jobs and got my cancer meds to me on time, or at least informed me early enough that there may be a problem so we could have started leaning on them sooner, I wouldn’t have a problem. 

I’ve had a rough seven months dealing with the effects of cancer metastasizing around my lungs and abdomen. The first line of treatment did not work and my symptoms were coming back. By fall my shortness of breath and cough started up again. The fluid around my abdomen worsened, and I had pain and a loss of appetite. Over the holidays, I lost weight that I didn’t want to lose. I was exhausted, and generally feeling ill, weak, and frail. After two rounds with my second line of treatment (the pill I’m currently waiting on), these symptoms started to improve. The cough went away. My gut no longer felt like I had a bowling ball in it. My appetite improved. The meds are working. I want my meds. I want my health.

Maybe I’m just cranky because the windchill is 55 BELOW zero.  

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.