From Thriving to Surviving

I’m not going to lie. The last 4 months of 2017 were rough. Radiation to the head is no joke. The fatigue was rather debilitating and losing 3/4 of my hair was an emotionally tough blow. It’s one thing to know you have cancer. It’s another thing for everyone else to know. It’s not as if I am particularly private about my diagnosis, I mean I am sitting here blogging about it! But walking around and having the whole world know, whether I want them to or not, is hard. I know I could wear hats, scarves, or wigs, but they’re all very itchy and uncomfortable. If there is one thing I don’t need is to voluntarily add to my physical discomfort. So, since the beginning of October, I’ve faced the days bald. The up side is I’m saving a ton of money on haircuts, coloring, and shampoo and styling products.

As soon as radiation ended, I began a new cancer drug combo Aromasin/Afinitor. I was warned about Afinitor. Apparently, it can cause some pretty mean mouth sores. So I prepared. I took everyone’s advice. I bought the expensive mouth wash and put the pills into gel caps to keep them from contact with the inside of my mouth and throat. The result? NO MOUTH SORES! I celebrated my successful avoidance of the nasty side effect! Other than that, some fatigue but otherwise not too bad. The best news came on November 6th when a PET/CT scan revealed the drugs were working. My tumors were smaller and less active than the scan at the end of July. Things were looking up!

On November 17th, we closed on our new house. Life became pretty busy. I was juggling work, moving, cancer, a new pet (our rescue kitty-Hazel), and I was tired! At a routine oncologist appointment I decided to be a good patient and get a flu shot. My reward for being good was a nasty infection at the injection site which required a nice week long course of antibiotics for Thanksgiving.

Things really went downhill health wise in December. I developed large, red, painful bumps on my scalp. I went to see my oncologist and she diagnosed it as foliculitis. Another fun side effect of my drugs. A topical antibiotic was prescribed. Turns out that mouth sores and foliculitis  are not the only side effects from my new drug combo. Blood work revealed sky high blood sugar levels and liver enzymes that were more than 4 times higher than normal. My oncologist had me stop taking the Afinitor immediately until my blood work normalized. It took a couple of weeks, but things normalized and now we had to make a big decision. She said we could try the Afinitor again at a lower dose or move on to the next option which is a drug called Xeloda-an oral chemotherapy. After some painful deliberation, we decided to move on. The deliberation was painful because it’s hard to give up a drug that you know is working. However, the toxicity and risk to my internal organs was just not worth it. So moving on to Xeloda.

One more fun little side note for December…..I came down with the ear infection from HELL! Seriously, I felt horrible. I had vertigo, stabbing pain in my ear, my eye was swollen, and of course it spread! The first antibiotic didn’t help. I then received a shot of a strong antibiotic and a new oral one as well. When even that wasn’t helping, I ended up in the ER and threatened with hospitalization if the infection had spread into my eye or my mastoid bone. Luckily a CT scan showed that it remained “pre-septic cellulitis” and I was not hospitalized. I literally crawled into school those last few days. I wasn’t sure I was gonna make it! But I did. I had never been more thankful for a break to arrive!

So on December 28th I started the Xeloda. Possible side effects…..too many to list! But it doubled the number of pills I am taking per day! I’ve been tired, had some mild nausea, and stomach upset. This drug is two weeks on, one week off. I’ve been warned about the major side effect, hand/foot syndrome. Apparently, the palms of my hands and soles of my feet could become very red and burn, maybe even blister. The skin could peel off and it could be quite painful. It sounds like very few patients escape this, but it does take a couple of cycles for it to kick in. Something to look forward to for sure.

Prior to this tumor on my head, I would tell people that I am not just surviving, but thriving with my cancer diagnosis. I fear it’s changing. I’m still surviving, but I no longer believe I can use the word thriving. Each day is a bit of a struggle, some days are worse than others. I’m going to try to make it through the semester, but I will have to call it quits at that point. I just don’t have the physical stamina to teach for 8 hours a day. It’s really hard for me to give up teaching. I still love it. I think I’m still good at it. I’ll miss the kids, I’ll miss my colleagues, I’ll miss feeling like a contributing member of society. I suppose I should feel lucky that I’ve managed to continue for 6 years post diagnosis, but it’s still a huge blow. I know it’s the right decision, as I may actually survive a little longer with less stress and more time to focus on my health, but it will be the hardest thing I’ve ever done. I hope I can get through the semester and cherish these last days of my career.

Happy New Year to everyone. I wish you all a year of health and happiness!

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The Other Shoe

When Nick was a pre-schooler, I remember reading a specific book with him that viewed many English colloquialisms through the literal mind of a child. The main character was a little boy who was very concerned when his father expressed that purchasing an item had “cost him an arm and a leg.” The boy imagined his father with only one arm and one leg. He was very confused when his mother told him a secret and then said “don’t spill the beans.” Of course the boy imagined tipping over a jar filled with beans. It was a wonderful book and I doubt Nick, at the age of three or four could truly appreciate it’s humor. However, I found it very entertaining………at least the first 40 or so times I read it to him.

I remember a specific colloquialism that always confused me when I was growing up. I didn’t understand the meaning of “waiting for the other shoe to drop.” Of course I quickly learned that it meant the anticipation of a bad situation getting worse. Today, I feel like I understand it on a completely different level. I’m afraid when it comes to my health, the other shoe has dropped.

It started on the evening of August 31st. I came home with a bad headache. I didn’t think much of it until it woke me up in the middle of the night. For me, the “middle of the night” means about 11 pm. The pain was intense. I tried switching positions, getting a drink and taking some Tylenol. Nothing worked. I couldn’t sleep and the pain was bad. I began to feel nauseous. I reached for my stronger pain meds and eventually fell asleep. I woke up again around 3 am with the same pain. I decided not to take more pain meds as the alarm was only 2 hours away.

Standing up and moving around made the pain slightly more bearable on Friday morning. I went to work but knew I needed to call the doctor as soon as possible. I taught a class and then called on my break. I described my symptoms…….debilitating headache, slightly flu like feeling, and a sore bump on the top of my head. The bump has actually been present since Spring, however, the soreness seemed to come and go and the bump was hardly even noticeable to anyone but me. Remember my main focus for the past 8 months has been the pain in my legs. My oncologist was not in that day, so the nurse had me see Dr. S. He is the one I had seen this time last year while Dr. L. was on maternity leave.

Mark and I spent about 15 minutes with Dr. S. kicking around the possibilities of what could be causing my pain. The obvious first choice when you’re sitting in an oncologist’s office is cancer. But, Dr. S. examined the area of concern and really thought it was unremarkable. He said skull metastases usually were more pronounced and skin metastases usually meant some discoloration. An infection seemed unlikely but a possible reappearance of shingles wasn’t ruled out. Bottom line, we needed to see what was going on inside my head so he sent me downstairs for a CT Scan. I was very lucky they were able to squeeze me in on a Friday before a three day weekend.

The scan was a horrible experience despite having taken pain meds right before it. It took four attempts to get into a vein since the first three veins blew up. I now look like a drug addict, but the scan did happen. We were sent back upstairs to oncology and told that Dr. S. would meet with us when he got the results. We ate lunch and headed back to oncology. I think we waited about an hour when Dr. S. appeared and we followed him back to a vacant room.

The CT scan revealed a 7.5 centimeter tumor on my skull and dura. The dura is the protective layer between the skull and brain. In the world of cancer, 7.5 centimeters is pretty big! Tumors of that size do not just appear overnight. I asked why the tumor would not have shown up on the PET/CT scan I had on July 31st. Turns out that the scan on the 31st only went to about my chin. Yeah, I was shocked by that. I really thought my head was part of the scan.

Dr. S. said that I needed to be seen fairly quickly in radiation oncology as the tumor is close to some important blood vessels and of course the size is of concern as well. It’s hard to describe the shock. After dealing with this crappy diagnosis for over 5 years, I really felt like I was prepared for anything. Each and every scan I prepare to hear that the cancer has spread to my liver or lungs. The brain is always a concern as well, but it’s less common than other organs. Dr. S. made it clear that they do not believe this is in my brain. It’s on/under my skull. While that is a relief, I still feel like I was caught off guard!

So it’s back to radiation. The new meds I’ve started will hopefully begin to fight the cancer systemically, but they usually take about six weeks to really build up in your system and begin doing their job. Dr. S. said that we really can’t wait that long.

I’m not a radiation newbie, but, radiation to the head can be a little more difficult than radiation to other areas. We met with a radiation oncologist, also a Dr. S. on Thursday September 7th. He laid out the options, even though I knew what I wanted to do. I just can’t risk being in that kind of pain again if it can be avoided. So, I made arrangements to go in the next day for a simulation and to have a mask made. The mask is necessary to hold your head immobile while they deliver the radiation.

Dr. S. is supposed to call on Tuesday and give me a start date and time for the actual radiation. It is likely to be 10 treatments. Side effects are mainly scalp irritation, fatigue, and hair loss. He seemed nervous to mention the hair loss, but in the large scheme of things, that’s the least of my worries. I just want to get this done and kill the tumor on my head. I was also sent for a brain MRI, just to confirm that the cancer was indeed on the skull and not in the brain. The MRI confirmed this.

Perhaps I have dodged yet another bullet, but after 5 1/2 years of dealing with this diagnosis, I do feel like the other shoe has dropped. I think it’s obvious that the cancer can be aggressive when it wants to be and grow fairly quickly if left unchecked. I’m still in a bit of shock over this. One minute you think it’s all under control and you start new meds with the hope of even further control, the next you’re being rushed into radiation to try and beat it back before it enters your brain! I can only describe it as absolutely shocking and surreal.

I’m going to try and work through radiation. I will probably do better and time will go faster. But I think I do have to think long and hard about continuing to teach after this year. I hate to give it up. It’s so much a part of my identity and I’m not sure what I will do otherwise. But, my cancer patient status in and of itself is slowly becoming a full time job. I also think that perhaps with less stress, maybe my time on earth can be extended a bit. No decisions have been made and I’m determined to at least finish out this school year.

I will keep everyone up to date on how radiation goes and I’ll be sure to post a picture of myself rocking the bald look!

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Plan E? F? G?

I’m not exactly sure what plan I’m going onto exactly, but I wanted to update everyone on the plan of action.

Clinical trials are on the back burner for now. There is only one promising one that is near me that I may or may not qualify for. They would have to send off a tumor sample to test it for a specific protein. This process could take a month, and then I may end up not qualifying anyway. So, I decided to stick with the tried and true for now.

Thursday, August 24th, I will begin a combination of drugs called Afinitor/Aromasin. It is still endocrine therapy, but the side effects can be very “chemo-like.” Just like any medication, however, it doesn’t mean I will get each and every side effect. The most common are mouth sores, lung damage, kidney damage, fatigue. I swear, it’s not the cancer that will kill me, it’s the treatment.

I saw a radiation oncologist on Tuesday last week. He recommended one treatment of high dose radiation to two separate spots on my pelvis. This will hopefully address some of the pain I’ve been having in my legs for about 8 months now. When you’re stage IV, radiation is palliative, not curative. I was very relieved that we could do it in one day. With school starting, daily trips to get radiation would have been quite inconvenient. He also said that if the pain does not subside, I could always come back and we can address some of the other spots at well. I liked Dr. S. a lot. It was hard not to go back to my beloved radiation oncologist at St. Joseph’s, Dr. J. He is, by far, one of the best doctors I’ve dealt with during this whole process. But, driving downtown everyday just wasn’t practical. So I was very happy that Dr. S. and I hit it off because the location is so much closer.

I will continue to get my infusions every 3 months. I see the doctor on September 21st and I will ask how long we wait until my next scan. If these drugs do not work, it’s time to move onto chemo. The first chemo I would start with would be Xeloda. It’s an oral chemo and a little kinder than the infusion chemos. So, fingers crossed, that these drugs work for a long time!

As always, thanks to everyone for your kind words and offers of support.

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Now What?

Summer is such a fantastic time of year! Especially if you’re a teacher. We hate when people throw in our faces the fact that we get summers off, but I won’t lie, it is a terrific perk. No one becomes a teacher simply to have summers off and believe me, they are earned and deserved! Most years, summers consist of a trip, some classes or professional development, and a whole lot of reading, sleeping, eating, shopping, and otherwise enjoying a wonderfully slow pace that almost makes up for the craziness of the previous ten months.

This summer was definitely one of the best ever. In June, I spent 3 weeks in Florida. It was divided into a week of quality time with my mom, a drive through the keys along with 3 nights in Key West with friends, a week in a beachfront condo, and a 4 day cruise to Havana, Cuba. After the stress of wrapping up a school year, and, oh yeah, moving our stuff into storage, selling a house, and moving into an apartment, this trip was just what I needed to feel human again. I enjoyed every minute. There is nothing like the ocean to help me put things into perspective. I can’t exactly explain it. There is a special sense of calm and well being that comes with sitting on a beach and watching a sunset! It is my happy place.

When I returned from Florida, life went chaotic almost immediately. Mark was called to a wild fire in northwest Colorado, I had cancer treatment, and had exactly one week to prepare for my next adventure. On July 12, Nick and I flew to Sydney, Australia. This is by far, the farthest I have ever been away from home. It was quite an adventure. We survived the 15 hour plane ride and landed filled with excitement and anticipation. We weren’t disappointed. Even though it was winter in Australia, we spent the next 2 weeks exploring an absolutely beautiful country. In fact, I believe Australia has ruined United States beaches for me. The southeast coast of Australia has the most picturesque beaches I have ever seen. I can’t say enough about Australia. Incredible beauty, warm and welcoming people, charming restaurants and tourist attractions, and rich culture and history. I so hope I have the opportunity to return! My brother and his girlfriend were excellent hosts and tour guides.

Of course all good things must come to an end. I was ready to return to the US. I was ready for Mark to leave again. I was ready to start focusing on the “back to school” activities. I was NOT ready to have a bad PET scan. I mean, living with stage iv cancer, I suppose you’re always somewhat prepared, but I think this one was a much harder fall back to reality because I was still on such a high from my summer.

My scan was July 31st and I knew that it must be bad because previously, Dr. L. has called me right away when the news was good. My previous oncologist was just the opposite. With Dr. H., no news was good news, but not with Dr. L. By Wednesday morning I sent my annoying email and asked for the results. A few hours later, she sent the report. A few new spots popped up in the ischium and illiac areas (pelvis) and those that were already  there showed increased activity. A new spot was seen on my L5 vertabrae as well. The good news was that no cancer was detected in any vital organs. However, this means I have failed Ibrance/Faslodex. Actually, let me rephrase that……I did not fail, the medications failed. This is the third drug(s) that have failed. I got two years on Tamoxifen, 2 years on Arimidex, and 15 months on Ibrance/Faslodex. I was hoping to stay on the established “2 year” pattern, but it wasn’t meant to be.

The big question, of course, is NOW WHAT? For the 5 plus years I have been living with this, I have managed to avoid the harsh chemotherapy that often comes with cancer treatment. I was sure my luck had run out. But, maybe not. Dr. L. feels there is one more endocrine therapy combination I can try. It’s called Afinitor/Aromosin. But, it’s not quite that simple. First, I am going to consult with a radiation oncologist to see if perhaps some radiation may help with the hip/leg pain I’ve been experiencing. Yes, it’s still there. It seems to have settled down a little, either that or I’ve just managed to adjust to it. If the radiation oncologist feels there may be some benefit, I would do that first before starting the new drug combo. But, wait! There’s more! Another option is to look into a clinical trial. I have searched and found some that I may qualify for. I am especially interested in the immunotherapy drugs that are being tested. I truly believe that these drugs are the future of cancer treatment and perhaps prevention. I would like to be a part of this important research. But (there’s always a “but”) the trial may not take me if I do the radiation.

Ugh! I hate decisions. Especially ones that involve living and dying. So to break it down, here are the possibilities:

  1. Get accepted onto a clinical trial and become a guinea pig……but also (hopefully) put off the dreaded chemo for a little longer.
  2. Do radiation and then start the new drug combo hoping it will work and put off the dreaded chemo for a little longer.
  3. Skip radiation and start the new drug combo hoping it will work and put off the dreaded chemo for a little longer.

To be transparent……my main goal with whatever decision, is to avoid chemo! I know I can’t avoid it forever. It will be a reality that I will have to face eventually. I just want to kick that can as far down the road as possible. Chemo, while usually very effective, comes with unpleasant side effects that present challenges. I know I’m up for the challenge, but why jump the gun before absolutely necessary?

So along with going back to school, I will be seeing doctors and making some big decisions. Yes, it sucks that this is the end to what was otherwise one of the most memorable summers ever. But, hopefully I will look back on the summer of 2017 and remember the “highs” because they have far outweighed the “lows.” I consider myself pretty lucky to have seen such incredible places and experienced such amazing things.

Below are a few photos of my adventures:

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I am a little surprised to find I have not updated this blog for 4 months. I hope no one was holding their breath waiting to find out what became of my pain. So I will start by updating that saga.

More tests showed nothing. I was referred to an orthopedist who I saw at the beginning of March. He said one of the MRI’s did note a slight thinning of cartilage around my knee, which could be causing the pain. He wanted to try a shot of cortisone along with some pain killers in my knee. The shot hurt….. a lot! But it did lessen the pain. It didn’t disappear, but it certainly became easier to deal with. He also referred me to a physical therapist, who gave me some stretches and exercises to try. I don’t believe those helped much at all. The relief lasted a few weeks and then the pain has slowly started to return. It’s not as bad as it was to begin with, but also not as good as it was following the shot. So, tomorrow, I am going back to the doctor for another shot. It’s obvious that it is just a band aid for the pain, but I have some big travel plans this summer and I hope to be able to enjoy my trips as pain free as possible.

Everything else is business as usual as far as the cancer goes. I continue on a combination of Ibrance and Faslodex along with my infusions of Zometa every three months. I will have my bi-annual PET/CT Scan at the end of July.

So, in other news, we sold our house and are now living in an apartment. This was a really quick decision. It wasn’t in our plans to move at all, but we looked at some model homes in March, found out what our house was worth, crunched some numbers and pulled the trigger. This is the third house that Mark has had built from scratch, but my first. There really wasn’t anything wrong with our home that we owned for twelve years, but we are looking to the future. My mom is planning on moving in with us, which I’m so happy about. At present her health is fine, but she is alone in Florida with no family near by. As she ages, I would like to be closer to her and have her near us so that we can help her out. Convincing her to leave sunny Florida and come back to Colorado was no easy task, but a new house with a ranch floor plan finally convinced her! The other consideration of course, is my health. As it declines, it will be nice to have one level.

Anyway, the past few months have been an absolute whirlwind. The new house won’t be finished until November-ish. However, spring and summer are the most favorable times to sell a house and the market is really hot right now. So we chose to go ahead and sell now, move to an apartment temporarily, and then move again. Our decision did pay off as we ended up getting $15,000 above asking price for our home! When I said the market is hot, I meant smoking hot!

As we have progressed in the process of selling, buying, moving, etc., there is a phrase that I keep hearing often. “This is going to be our forever home.” On one hand, it makes me smile, on the other hand it makes me cringe. Yes, this will most likely be the last house we purchase. We are enjoying the planning and getting to pick out fixtures, colors, designs, etc. I’m thankful Mark has been through this before, because it is an intimidating process. We have a long way to go, but so far, so good.

On the other hand, considering I am already past my “expiration date” and living with a terminal diagnosis, I can’t help but wonder what exactly “forever” means to me? It’s somewhat surreal. Forever is hard to define, but most would agree that forever means a long time. In my situation, forever could be a year, 2 years, 5 years. Who knows? Then of course, we could go down the existential road of “is there really such thing as forever?” but that might have to be an entirely different piece of writing.

The good news is that I haven’t once really questioned this decision. As crazy as it may be, it feels right. It seems the ultimate act of optimism to be building my “forever home” in the midst of never-ending cancer treatment, but I’ve always said that I wasn’t going to make decisions as if I’m going to die, but as if I’m going to live. So there you go. Building a house from scratch is definitely making a decision as if I’m going to live.

While waiting for the house to be built, I will be optimistically traveling to some pretty incredible places this summer. I leave next week for Florida for three weeks. This trip will include several nights in Key West, a week in a condo on the beach, and a four day cruise to Cuba! I return on July 5th. I’m home just long enough to do laundry, go get my cancer treatments, re-pack and leave to see my brother in Australia. Talk about a bucket list trip. Nick and I will spend two weeks exploring Sydney and the south east coast. My brother moved to Kiama, Australia in February and will be living there for 3 years. Who could possibly pass on the opportunity to visit the land down under?

The summer will go by quickly, as always, and before I know it the new school year will be here. Time seems to speed up the older I get. Andy Rooney once said, “Life is like a roll of toilet paper-the closer you get to the end, the faster is goes.” So true!

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Pain and Frustration

Pain is a funny thing. I’ve been in pain before, but in the past, it’s all been temporary. Pain from being ill, breaking a bone, having surgery, etc. Chronic pain is different. Chronic pain consumes you. Not just physically, but mentally and emotionally. It consumes your thoughts, your feelings, your motivation, and your energy. The pain began a couple of weeks before Christmas. Just a nagging pain in my leg. I, at first, wrote it off to a pulled muscle. But even then it felt quite different. With a PET/CT scan approaching on January 3rd and the pain continuing, I was less than optimistic about the results of the scan. To my surprise, the scan results were good. The cancer was stable or shrinking and no new spots showed up. So, why the pain?

Excellent question and one that we still do not have an answer to. The doctor first felt that perhaps the problem was in my back and sent me for an MRI of my back. The results showed small spots of cancer that we already knew about, a small cyst, and mild arthritis. Nothing the doctor felt should be causing me pain. Meanwhile, the pain begins to worsen. It hurts to stand, it hurts to walk, it hurts to bend. For the first time in a long while, I reach for my prescription pain pills. They give a temporary reprieve, but it comes at a cost. It makes me groggy, tired, yet I don’t sleep well on them at all. I wake up more exhausted than when I went to bed. I toss and turn. I wake up nearly once an hour. I become desperate for rest. It’s a horrible choice. I either don’t sleep because I’m in pain, or I don’t sleep because of the pain pills. Either way, I don’t sleep!

So, being that I like to self-diagnose, I suggest to the doctor that perhaps we should check for a blood clot. Somewhat of a long shot, but not out of the realm of possibility. She agrees that it’s probably not the case, but sends me for an ultrasound anyway. Ultrasound is negative for a DVT. Still in pain. So back to doctor google. I then read about an interesting side effect of one of my medications. For 5 years I’ve been receiving a drug called Zometa. It’s typically given to women at risk for osteoporosis, but also to patients with cancer in their bones. It helps strengthen the bones and create an inhospitable environment for the cancer. However, one of the risks is sudden femur fractures. The warnings say that patients can experience thigh or groin pain for weeks or months before presenting with a fractured femur. So I print out this information and take it to my doctor’s appointment on February 8th.

The doctor does not think the femur fracture is likely, but again, orders x-rays just to be sure. Since she doubts the fracture, I ask her what she thinks it is. She answers “cancer.” I guess it only makes sense that an oncologist’s thoughts revolve around cancer. So, I ask what the treatment would be. She says she would radiate and that should help with the pain. Then I ask what the treatment is for a fractured femur. She isn’t sure but would refer me to an orthopedist. After some reading I come to find out it usually requires surgery and putting a titanium rod in my leg. Ironically, I find myself thinking for the first time ever…..”please let it be cancer!”

But, x-rays are negative and no problems with the femur can be found. Now what? Back to the MRI machine! Tuesday I will go in to MRI the hip and thigh. At this point, I care less about WHAT it is, and more about what we do about it. I’m tired of being in pain. I want to think about something besides pain and cancer. Every day has become more about “getting through it” and less about “living it to the fullest.” I’ve always said the key to living with terminal illness is to focus on the living part. But when you’re in chronic pain, that becomes so much more difficult.

I fear my journey may be taking a turn for the worse. I fear that the “easy” part might be coming to an end and now it’s all about trying to keep me comfortable. Of course, that’s also a side effect of pain. You’re mind begins to fear the absolute worst and your positive attitude begins to slip away. I’m far from ready to give up. I think I have a few more years in me. I will fight for every last minute to stay here with those I love. It’s just getting tougher and once again, I have to adjust. The mental adjustment is always much harder than the physical.

I will be sure to write an update when and IF we get to the bottom of this ugly pain!


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For those that are tired of reading about anything political, I encourage you to skip this post. Yes, it will eventually link to cancer, but in a very round about way. I will not tolerate or approve any editorial comments about the election or justification for what has happened. You can send me a personal email or write an old fashioned hate letter if you feel the need to respond, but this is not the place to argue. I began this blog to keep friends and family updated about my health situation, which I will do, but it has become more than that. It’s a place to share my feelings about a personal journey that I did not go on voluntarily, but yet, here I am on this road and there is only one way off. This is my place to express my feelings, and hopefully, when I am no longer here, to leave behind my thoughts, opinions, and emotions for those that follow. So, if you continue to read on, buckle up, because it’s not going to be pretty.

So, my muscles are in knots, my head is splitting in two, my stomach has not stopped turning since Tuesday night. Not because a republican has been elected president. I have lived quite happily under republican presidents and am no worse for the wear. However, for the first time in history, we did not elect a democrat or a republican. We elected a sexual predator. A homophobe, a racist, a misogynist, a xenophobe, an absolute lunatic who hides behind the label of “republican.” I’m completely dumbfounded. I’m in utter shock, disbelief, and emotional turmoil. How can the greatest country on earth elect one of the poorest excuses for a human being ever to run our country? We have placed our future in the hands of a man who openly admits that he does not respect women, minorities, homosexuals, refugees, veterans, families of military casualties, and other political leaders. And yet he is going to bring us all together? Unite us? Build diplomatic bridges?

I’m afraid. I’m very afraid. I’m not only afraid for the groups that he has already said he will target, but I am also afraid for myself and for my family. My son is 18 years old. What if this idiot gets us involved in foreign conflicts that lead to more war, destruction, and loss of life? What if we have to go back to a draft? Will my son be forced to fight and possibly die because of Trump’s ego?

I’m afraid for myself. I’m afraid for every person living with a chronic condition or terminal disease. Will I lose my benefits? Will “lifetime maximums” be re-instated by insurance companies who care only about profits and not people? Will I be forced to make a decision between dying or continuing to live while running my family into crippling debt? Will I ever be able to go on disability and afford the medicine and care that I need to stay alive?

I’m afraid for my students. I’m afraid for my Hispanic students, for my gay students, for my female students, for my refugee students. I’ve held students while they sobbed in my arms this week. I’ve tried to calm their fears, reassure them that it’s going to be ok. But I am lying to them. I don’t know if it’s going to be ok. I don’t know if they will be allowed to stay in the United States. I don’t know if they will be able to marry someone they love. I don’t know if they will be allowed to make their own decisions about their health and their bodies. I really just don’t know.

The masses who elected Trump, including some of my own friends and family will say that my fear is unfounded. They will say that I worry to much. They will say that we must give the president-elect a chance. They will say that I am wrong and that my life will get better. They will call me ridiculous, tell me that I am over-reacting and being dramatic. They will tell me that I am just upset because my side lost. Well, losing sucks for sure. No one goes through life and never loses. I’ve lost a lot. But, I always pick myself up, brush myself off, and keep going. I keep trying. I keep working. I keep living. This is honestly the first time in my entire life that I am actually doubting my ability to keep doing any of those things.

If you were hoping that this post was going to end in a rally cry, or on a positive note, it’s not. I’m truly at a loss for words. I don’t know what to say and I don’t know how to keep going. Hate won. Racism won. Discrimination won. Evil won. The republicans did not win. The democrats did not win. We’ve all lost. We’ve lost our compassion, our empathy, our decency, our pride, our respect, our friends, our hearts, and apparently, our minds. I can’t make jokes about it. It simply isn’t funny.

I will see my doctor tomorrow and get my monthly treatment. I have a few questions I will ask about the one good decision voters made in this election. I will ask about medical aid in dying. I will ask if Kaiser is going to participate in this or if I will need to look elsewhere. I doubt I am within 6 months of dying, but the time will come. Depending on if and when I lose my insurance, it may come sooner rather than later. I will not leave my family in debt when I leave this world. I will not turn to crowd funding to pay for medicine and treatment. I will not continue to live when I am nothing but a burden to those I love. I will take control of what little I have control over. I know it’s sad and depressing. But, that’s what life is for me right now. And having a little piece of control amidst the chaos, confusion, and darkness is all that keeps me hanging on at this point.

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Updates from Cancerland

I haven’t posted in quite awhile. I’ve thought about it. Had several ideas, but frankly, summer was tough. I lost another good friend to this dreaded disease on July 6th. My friend S., whom you can read about in the post entitled “Friends in Low Places” (August 2014) passed away. She fought cancer for what seemed like a lifetime. This past round they gave her 6 months, and true to form, she lived two years. She was the embodiment of life and living. She was an amazing woman, who everyone wanted to be around. Losing her stung and will for years to come. Losing my cousin in January and S in July……… there are just no words.

Anyway, I wanted to update my health situation on my blog. It’s all good news. In July, my scan showed the active cancer areas had either resolved or become less active. It looks as if the new medications are working. I am truly grateful and happy, but there is also that sense of guilt. Watching others struggle, slowly fade away, and eventually die, while I seem to be given second, third, fourth chances…….It’s called survivor’s guilt. I’m sure most are familiar with the term. I know I shouldn’t feel guilty, but I do anyway. I don’t think it’s something that can be avoided.

My oncologist is on maternity leave until November. I will see a physician’s assistant on Monday, receive my shots, and hopefully another cycle of Ibrance. Blood counts are the deciding factor and for the last few cycles, while my counts definitely go down, they do not drop low enough to justify stopping the medication. Especially if it is working. Other than the blood counts, side effects are minimal to none. I think I actually feel better on this medication than I did on my last one. I seem to have more energy and my joints do not hurt nearly as much. I’m exercising more and even walked a 5K in August with my friends. My new routine has me walking one 5K per week and hopefully building up to a 10K walk in October. I will let you know how it goes. I continue to work full time as well.

Sorry for the solemn post. My creativity just isn’t flowing as usual. Too much loss in too short a period of time. I’m hoping to emerge from my emotional slump soon.



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On November 14, 2001, I woke up from surgery and heard the confirmation that I did indeed have breast cancer. The memory is vivid and so are the thoughts that ensued. Cancer? I’m 28! I’m a single mom! My child is 3 years old! I can’t die! It was a mix of disbelief and panic. How could this happen?

I didn’t have a lot of time to ponder the hows and the whys of the situation. I had to make some decisions. I was told my cancer was stage IIA. The tumor was 2.5 centimeters (anything over 2.0 is automatically stage II) but there was no evidence of cancer in the lymph nodes that were removed and dissected. Because of my young age, it was recommended that I undergo chemotherapy to “clean up” any rogue cancer cells and then radiation if I chose to keep the breast or a mastectomy if I wanted to forego the radiation. I began chemotherapy before the end of the month and was bald by Christmas. It’s amazing how quickly it all happened. I had only found the lump (by accident) on November 2nd.

Anyway, during my chemotherapy, I decided that I was going to do anything and everything to stay alive. I wanted to raise my son. And, if for some reason I couldn’t stay to watch him grow up, it would not be because I hadn’t done absolutely everything I could. I think losing a parent is hard, no matter what your age. But, I certainly didn’t want my premature death to scar him for life. I set my goal as his high school graduation. 15 years. Practically a lifetime for a cancer patient. I had my conversation with God and asked that he give me those years. I wouldn’t get greedy, I wouldn’t ask for more. Just get me to that magical day in 2016 and I will die a happy woman.

After the 5 year mark, I started to relax a bit. The doctors said that most recurrences happen in the first 5 years. I was also told that if I made it 10 years, I could say I beat it. So, November 2011 was the 10 year mark! I celebrated big and let out a huge sigh of relief. That relief lasted all of 10 weeks. In March 2012, re-diagnosis. Stage IV. No cure. Average survival 3-5 years. It was at this point I began to seriously doubt whether or not I would get to that high school graduation.

However, on May 18th………….IT HAPPENED!!!! I saw my son walk across the stage and receive his high school diploma. Talk about a sigh of relief. Not to mention a world of emotions……pride, joy, sadness, love, gratefulness. It was an amazing moment and I truly could not be more thankful that I actually got to see it. Although a big milestone for Nick, I think an enormous milestone for me. Publicly, it was all about Nick, privately, I celebrated MY accomplishment.

So, now what? 19 days from now, Nick will turn 18. We will be in Puerto Rico to celebrate. Can I say I officially “raised” him? I met my goal, reached my milestone. Can I die? Yeah, I guess. But here’s the thing……I don’t want too. I want more. More years, more life. I guess it’s inevitable that it’s never going to be enough. Do I dare ask for more? Am I tempting fate? Am I being greedy? These are the questions that I contemplate. I am also contemplating setting a new goal. I don’t know what it should be. Nick’s college graduation maybe? My nephew’s high school graduation in 6 years? Or, something else?

I can’t project myself too far into the future. I think I know better than to go as far as a wedding or perhaps a grandchild, although those aren’t impossible, they are unlikely. My doctor says I need to set a new goal, but I never really thought about what I would do after I made it to graduation day.  Maybe I don’t set any specific goal. Maybe, I take my own advice and live each day as it comes, not worrying about the future. I guess I should be thankful for the opportunity to look into the future. I have to say, in 2012, even buying green bananas caused me to pause.

Anyhow, I’m open to suggestions. Any advice?


A quick health update: Cycle 3 of Ibrance starts tomorrow, providing my blood counts are good. Cycle 1 left me neutropenic…….meaning my white cell count was very low which leaves me open to infection. I did not get sick however. Cycle 2, blood counts were low but not as low as cycle 1. The hope is that my body will adjust to the medication and my white cell counts will not drop as drastically as they did in cycle 1. Otherwise, it could be a very long and miserable winter full of colds, flus, and who knows what else. I still get the faslodex shots once a month. The shots don’t hurt while getting them, but the injection sites are EXTREMELY sore for several days afterward. They are literally a “pain in the butt!” Next scan is probably going to be in September.

In 9 days I’m off to Puerto Rico and the Caribbean! Maybe some time away will give me some perspective. Let’s hope I come home with perspective and NOT the zika virus! 😉

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Even Years

I’m beginning to dislike “even” years. 2012-re-diagnosis, 2014-progression, and now 2016-more progression. It’s probably nothing personal, but these even years seem to bring cancer back into the spotlight of my life.

I had a scan on March 25th, and sure enough, the cancer is again on the move. I think I was mentally prepared for it. I hadn’t had any physical symptoms of progression, it was just a feeling I had inside. It’s funny how you really get to know your body while dealing with a terminal illness.

So the report showed a prominent and “glowing” spot near my sternum, as well as cancerous activity in the pelvic region…..right where the pelvis meets the femur. And it’s on both sides. The radiologist was also kind enough to note in his report that I’m fat and constipated. I’m pretty sure those diagnosis could have happened without an $8000 scan. Thanks doc!

We are moving on to new treatment. I am receiving shots of Faslodex (fulvestrant) every month. I have to have an extra loading dose so I received the first dose on March 25th and another dose on April 8th. After my April 25th dose, then it goes to once per month. Besides being very sore at the injection sites (my butt cheeks), side effects seem minimal. I have a bad taste in my mouth and feel a little tired for a couple of days.

On Tuesday, I started Palbociclib. This is a brand new drug, just approved by the FDA in February of 2015. It’s only been approved for use with Faslodex since February of 2016. It’s hard to get much newer than that. If you Google the drug, it’s hard not to notice that it retails for about $9,800 monthly. Luckily I will pay $50 a month. Thank goodness for health insurance. The jury is still out on whether this drug is officially a “chemotherapy” drug. The doctors say no, but the package insert says yes. I’m not sure who to believe. Regardless, my main concern is the side effects. The list is long, as it is with most medications. The one that frightens me most is the likely drop in blood counts around day 15 of the cycle. I take the drug for 21 days and then go off for 7 days to allow my blood counts to hopefully rebound. I am currently on day 6, so we will see what occurs. Who knows, maybe I will be the lucky one who’s blood counts tolerate the medicine with no trouble. My only side effect so far is a slightly upset stomach.

In the midst of all of this, my oncologist has decided to retire! Many may be thinking this isn’t a big deal, but you tend to become very attached to your doctors when your life hangs in the balance. I really like my doctor and this just isn’t a good time for him to retire! I tried to convince him to stay but he said the only way he’ll ever get caught up is to retire! So I guess I have to let him go. I have to feel somewhat bad for my new oncologist. I hope she can handle me. I’m sure she can handle my cancer, but can she handle my attitude and sick sense of humor? Another “wait and see.”

Life is somewhat surreal right now. On one hand I have all of this cancer crap, but on the other there is a  very big milestone about to occur. Nick graduates in about 7 weeks! Way back when I was first diagnosed with cancer in 2001, my goal was to live long enough to see my baby graduate from high school. It looks like it’s about to happen! 4 years ago, when I was re-diagnosed, I wasn’t so sure it was going to happen. It’s a huge milestone for Nick, but also for me. Any time I get from that point on, truly will be “icing on the cake.” And, I have to say, I think I have some more years left in me!

Shortly after the big graduation, we leave on a Caribbean cruise.  And then of course the summer will allow me to get caught up, relax, and rejuvenate so that I can hopefully start the next school year strong.

Here’s hoping the new drugs are kind to me and that my next update will be filled with good news. I will likely be scanned again over the summer so stay tuned………

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