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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Forever

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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Fear

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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Milestone

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?

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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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