I Used to be…….

I used to be a teacher. I used to be a teacher. No matter how many times I say it, I can’t seem to get used to it. These last few days of my teaching career have been pretty emotional. I am so sad to be giving it up. I love teaching and I love the kids. Physically, I’ve been ready for awhile. Mentally and emotionally I’m not even close to ready. I feel like it’s the right decision, but that doesn’t make it an easy decision.

Here is what I WON’T miss………………

Getting up at 5:30 am.  Not being able to go to the bathroom when I need to go. Grading huge stacks of papers. Staff development that does not do much to develop my teaching ability. Spending hundreds of dollars of my own money on classroom supplies. Fighting politicians who refuse to listen to teachers and do what’s best for kids. Scarfing down my lunch in 30 minutes or less. Working when I’m sick because writing sub plans is too much trouble. Planning possible escape routes out of my room in case of an active shooting situation. A confusing and arbitrary teacher evaluation system. Standardized tests. Worrying about my students’ mental and emotional health, home situations, etc. Not being able to sleep as I think about how much grading I have, how many lessons I have to prepare, how many meetings I have to attend……………….

Here is what I WILL miss………………..

The excited chatter of a room full of teenagers. Waves, high fives, hugs, greetings from my kids. Notes of thanks and tokens of appreciation. Seeing the kids achieve academically, athletically, socially. Watching a shy, awkward freshmen grow and develop into a strong, confident senior. Visits from past students. Intellectual conversations with colleagues. Fun, outrageous and not-so-intellectual conversations with colleagues. Friday afternoon socializing. Being a part of a team. Having a “work” family. Putting together lessons that are engaging and effective. Homecomings, sporting events, spirit days, proms. Snow days. Planning periods. Collaboration. Starting a new school year each August. Reflecting on the past school year every May. The eternal optimism, energy, and enthusiasm of youth.  The laughter. The celebrations. Teaching a content that I’m passionate about. Feeling like a contributing member of society. Having a routine. Knowing that my work is important and really matters. Shaping and having an impact on the future.

When last I wrote I had just started my new chemo regimen. It’s tolerable, but side effects are a battle. I’ve dealt with fatigue, hand/foot syndrome, a few mouth sores. I take the pills for two weeks and then take a week off. In February, a scan seemed to indicate that the medication was working. Most spots were stable or had shrunk. One rogue spot had grown slightly. We will scan again toward the end of July.

My hair has still not grown back from the radiation in September. My radiation oncologist said it may never come back. Other patients say it will but it takes a year or longer. I was hoping to have some hair for the summer, but it’s not going to happen.

I leave one month from today for a dream trip to Europe! Finally, I get to see some of the amazing places, ruins, and artifacts that have been a part of my curriculum for so many years. I will visit London, Barcelona, Monaco, Florence, Rome, Athens, Mykonos, Santorini, Malta, and Paris. I can’t begin to express how excited I am.

And so begins my life of early retirement. I’m so lucky that I’m able to do it. However, I would gladly trade my early retirement for my health plus another decade of teaching. My career is not ending when and how I wanted it to end, but I plan on making the absolute best of the situation. I will have to get used to saying, “I used to be a teacher.”

 

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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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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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