Defying Death

It has been way too long since I’ve posted. There has been a lot. I’ll do a quick recap so you can catch up and I can organize my thoughts:

August 2019-Clean Scan

Oct-Dec 2019-Chemo/Treatment Break

January 2020- New Chemo-Doesn’t Work

April 2020-New Chemo-Doesn’t Work

August 2020-New Chemo-Hospitalized due to side effects

October-Back to Chemo-Back to Hospital due to very low blood counts

November 2020-Referral to Sarah Cannon Cancer Center for Clinical Trial

November 2020-January 2021-Clinical Trial

So this is where I will pick it up. The clinical trial was not easy. The drug had to be taken at very specific times and under specific circumstances. It made me nauseous and I threw up on occasion. Overall, I felt worse and worse as the trial went along. When my January scan came back, it showed more progression. In other words, the trial drug did absolutely nothing. On my last day, they were concerned about my breathing and mobility and sent me for a chest CT. It was determined that I had a pulmonary embolism (blood clot in my lung.) I was quickly put on blood thinners. I had to get two shots a day in my stomach for two weeks and began taking an oral blood thinner as well. I was shocked that they didn’t hospitalize me, but I would always rather be at home.

I’m not sure if I can stress how horrible I felt at this point. I needed help getting up and down. I needed help showering, I couldn’t walk more than a few feet without being completely out of breath. I spent most of January and February contemplating death. I felt it was coming quickly and I had no energy to stop it. I cried a lot, I wondered how painful the process would be. I thought about my family and if there was anything I could do to make this easier on them. I really, truly thought this was it. No one wanted to talk about death with me. It’s funny because everyone is going to die at some point, but no one wants to acknowledge it. It seems like just talking about it makes people think it will somehow summon the Grim Reaper.

Then came the call to my oncologist. I told her I wasn’t ready to give up and asked what was left on the menu. She said the only thing left was a harsh chemo and given my physical state, she worried it would/could do more harm than good. And then, here is the turning point…..the suggestion that saved my life. I told her I had read some medical journals and there was some anecdotal evidence that some women who had been treated with a drug called a CDK inhibitor, actually got better results when some time had passed and they went back to the same class of drugs. I fit into this particular category. I had been on a CDK inhibitor back in 2016/2017.

Here is my soapbox moment: This is why you must be proactive with your health. Don’t just accept what the doctors are telling you. Do your homework. Read about your disease and treatments. Ask good questions. Never allow someone else to make decisions about your health in isolation. Insist on being involved and get a variety of opinions! Now stepping down from soapbox.

Another hurdle was the insurance company. They don’t like to cover treatments that are super expensive and not considered “standard of care.” Just because there is anecdotal evidence that this has worked for some women, it isn’t considered clinically significant until clinical trials have been conducted. My doctor had to go to bat for me and talk them into allowing me to go down this road. I’m not sure what the conversation was, but she did get it approved.

I started the drug at the end of January. I did not get my hopes up because I didn’t want to deal with the disappointment. Keep in mind I’m still not in great physical shape at this point. Mark had to take me places in a wheelchair, I was sleeping about 12-15 hours a day. Most of my healthcare was taking place at my house via home healthcare. I did physical therapy, occupational therapy, nurse visits, and blood draws……all at my house. Which was so wonderful. I am definitely a fan of the home health care system!

Over the next couple of months, things got better…..very slowly. I’m still not anywhere near 100% but in comparison to January and February, I am doing great. And my scan at the end of March confirmed that I was responding to the treatment. There was significant improvement in both my liver and my bones. There is still plenty of cancer, but a lot less than there was prior to the medication. Part of me is still in total shock. I’m so thankful that this treatment is working for now. I’m hoping it buys me some more months with my family. I dare not hope for years at this point, but I’ll take whatever I can get.

We have a trip to Hawaii planned for June. It will look different than trips of the past. I will need frequent breaks, help with mobility, and lowered expectations as far as what we can see. But, regardless of my limitations, I’m thrilled to be going. 12 weeks ago, a 15 minute car ride was a challenge, now I’m about to embark on a 6 hour plane ride to fulfill a bucket list item,

I think that catches everyone up. I know a lot of people knew what was happening to some extent. The outpouring of love, support, and food was unbelievable. I am so incredibly blessed to have so many people willing to support me and my family. I will never be able to thank you all enough or repay the level of kindness I have been shown.

I promise not to wait too long until the next update.

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2020…Zero Stars, Not Recommended

If I had to write a review of 2020, it would not be good. The world has gone mad, there is a global pandemic wreaking havoc on everyone’s lives, and it’s a presidential election year, which always seems to bring out the crazy in everyone. But this blog is about cancer so I will stick to the subject at hand.

From a cancer point of view….. 2020 has sucked as well. In August of 2019, I had my best scan ever. No evidence of cancer so the chemo was working great. I remained on the chemo for another two months and then went on a “break” until the end of the year. The break was great. My energy came back and the neuropathy calmed down. It was so nice not to be on chemo for the holidays. Then came January 2020 when it was time for another scan. As expected, the cancer popped up again and so we went back to the chemo that had been working so well. Then, surprisingly, my April scan showed additional progression. The chemo that had worked so well, stopped working. So we agreed to go onto another chemo called Doxil. It’s a rough one, so I had to have some tests to make sure my heart was strong enough to handle it. The good news was that this chemo was once a month instead of once a week.

Fast forward to the end of July and scan number three for 2020. More progression. Some areas of bone were stable or improved but my liver was full of lesions…..including one large one at 3.5 centimeters. I know that doesn’t sound big, but in cancerland, it’s big. And so it was onto another chemo called Gemzar. Back to once a week for three weeks with one week off. I’d love to say that the new chemo is going well, but nothing is that simple.

My first dose was easy. I had a couple of flashes of nausea, but I took some meds that quickly took care of it. Then came dose two. About 48 hours after the dose, I started to feel pretty bad. Chills, fever, headache, fatigue. It was not good. And of course, it was the weekend. I emailed my oncologist who called Monday morning and sent me to the ER. [insert eye rolling.] I hate the ER and the hospital.

They spent several hours testing me for everything under the sun (including Covid), started me on IV anti-biotics and told me they were going to admit me. Then, when all of the tests came back negative, they pulled all of the tubes and said it had to be side effects from the chemo and sent me home. It was a pretty quick 180 degree pivot. However, the rest of the week, I just continued to get worse. On Thursday (chemo day) I told my oncologist that I didn’t feel up to coming in. She said…..go back to the ER! [more eye rolling.]

ER visit number two for the week landed me in a hospital bed for three nights. The doctors were still convinced that my symptoms were side effects brought on by the new chemo. I argued with them and told them that I was far enough out from the chemo that the side effects should be getting better, not worse. They were having none of it and I continued to spike fevers about twice a day. Finally, they reluctantly put me on some anti-biotics. And, guess what? The fevers stopped. Go figure. After three nights, I went home and my doctor and I decided to put off chemo until the next cycle scheduled to begin on August 27th. That was last week and so far so good. No fevers or other horrible side effects.

The worst is that I’m tired. I know everyone knows what it’s like to be tired. But this is a much different tired. Like I literally have to give myself mental pep talks just to get off the couch. Like I wake up, shower, get dressed, and I’m ready to go back to bed. Like a day without a nap is unheard of. I feel so guilty too. Guilty that my dog’s walks have to be shortened. Guilty that I can barely contribute to housework and cooking. Guilty that I am not a lot of fun to be around right now. Although none of it is my fault, I still do not like this lifeless creature I am becoming. It scares me.

There are other things that scare me as well. Since May, I have lost 26 pounds. Normally that would be cause for celebration. However, unintended weight loss in cancer patients is not a good sign. At first I thought it was due to the fact that I no longer needed to be on steroids for chemo. But the weight loss continues. Slow and steady, but it scares me.

My last visit with my oncologist was also a scary conversation. She said that if this chemo doesn’t work or when it stops working, it’s time to think about clinical trials. Clinical trials aren’t necessarily scary in and of themselves, but there is that lingering feeling that we are coming to the end of what the tried and true treatments can do for me. Scary.

What is most scary is that I may be in my final months, years (hopefully) and my travel dreams are completely on hold. Thanks Covid-19. I have the desire and ability to travel, I just can’t. I have dealt with the disappointment of two big trips being canceled this year. One to Hawaii and one to Europe. Hawaii shut down just like every other state in March and Europe will not allow Americans to travel there because of our high number of cases. I guess that I may have to accept that my traveling is over. I hope not, but who knows what the future holds. I’m glad I took advantage of the past couple of years and took some pretty fabulous trips.

So that’s the update from cancerland. Not the most uplifting, but I always try to balance optimism and reality. Right now, I’m drowning in reality. 2020 has just not been good in so many ways. I won’t wish away time, but I also won’t be disappointed to see this year come to a close!

Cancer and Covid 19

And so I find myself in another unique situation. Having terminal cancer in the midst of a global pandemic. A decade ago, I couldn’t really imagine living through either one independent of each other, let alone both together. Nonetheless, there are advantages and disadvantages to my situation.

Some disadvantages may seem rather obvious. I do not have the luxury of postponing treatments and therefore limiting my exposure to the virus. My weekly chemotherapy is no doubt what is keeping the cancer from killing me, so those must continue. My weekly visits do look quite different. I am screened each time I enter the building, my temperature is taken and I am quizzed as to my destination and purpose for entering the facility. This doesn’t bother me. I know it’s about keeping me and others safe. On the plus side, I haven’t had to wait for blood draws or infusions in well over a month.

Another disadvantage is of course, having a compromised immune system. My doctor explained to me that it is not less likely I would survive if I caught the virus, but more likely that I catch it in the first place. There really isn’t much that can be done about this. We discussed that chemo would be on hold if I were to become ill. So far my blood counts have been good and I have not been sick. I have been back on chemo since mid January and it is again beginning to take a toll on my energy levels. I had been doing acupuncture prior to society shutting down and was hoping it would lessen the side effects of chemo. But acupuncture is not deemed essential and so it’s been about 5 weeks since I was able to go.

I’m surrounded by fear and anxiety. People are experiencing unprecedented circumstances, so it’s understandable why the uncertainty is unsettling. For me, fear and anxiety are feelings I had made peace with many years ago. Living with cancer is a constant stream of emotions and uncertainty. It’s not pleasant, but you eventually get used to it. I guess this is an advantage for me. I do feel great empathy for those that are not used to uncertainty. Not only does the fear revolve around health, but also jobs, money, school, social events, and family. This is a very difficult time for those that like to have things planned out.

I was very disappointed in March when my trip to Hawaii had to be postponed. It was a trip that had been a year of planning and the timing could not have been worse. We were supposed to leave March 18th, just as shut downs and stay at home orders were beginning. Right up until the very last day, we were contemplating whether we go or stay. We definitely made the right choice as all of our planned activities in Hawaii ended up being canceled, but it was still a hard decision. I know that it can and likely will still happen at some point. Travel is so important to me right now, and I hope that I will be able to get a few more trips in before my time is up.

Another interesting situation was the fact that our basement finishing project was well underway when all of this stuff started. I was worried that it would come to a grinding halt but it did not. Construction is deemed essential and so work continued and finished on time. There was rarely more than one tradesman in the house at a time and there was no face to face contact. They entered and exited out the basement window so I felt pretty safe.

On April 3rd, my mother fell and broke her ankle. Talk about bad timing! She broke it in two places and surgery was necessary. This is not a great time to need surgery or to be in the hospital. I was able to be with her pre-surgery, but no visitors were allowed in recovery or in the hospital. Again, I know this is in everyone’s best interest, but it’s hard to not be able to be there with my mom. She is now in a skilled nursing facility for some rehabilitation. Same rules, no visitors. I don’t like it, but I understand.

People seem to be getting very bored and cabin fever is setting in. While there are things I miss being able to do, staying home is not an issue for me at all. I have plenty of things to keep me busy. I can’t say I’ve felt bored for any length of time. I cringe at the people who are beginning to protest the stay at home orders. As a history teacher, I know all to well what happens when restrictions are lifted too early. The virus makes a comeback and the second wave hits harder than the first. The flu pandemic of 1918 is proof of that. I’m amazed that we don’t take history lessons to heart. I hope we don’t make the same mistake.

My next scan is on April 30th. I’m hoping for stability and the ability to continue on my current treatment, at least through the summer. At that point, another break may be needed. I hope everyone is staying home, staying safe, and staying sane. And I especially thank all of the people who do not have the luxury of staying home. Their work and efforts are what will carry us all through this difficult time.

 

 

 

Welcome to the Club

The club of cancer patients, is one that no one really wants to join. It is also one that I never want to have to welcome anyone into. However, there are hundreds of people diagnosed with cancer on a daily basis, so it’s only a matter of time until someone you know becomes one of those hundreds.

On October 26th, it was the final day of my Caribbean cruise. I was blissfully sitting in a lounge playing cards and enjoying a cocktail, when my phone buzzed. It was a text from my friend K. She wanted to let me know that her husband, M,  had been diagnosed with a brain tumor, and they suspected it was cancerous. I was shocked to say the least. Apparently, it had all happened very quickly and he was scheduled for brain surgery the next morning. My mind began spinning with thoughts, mainly revolving around being there for K and M, and questioning what could I possibly do to support them.

I’m not an amateur at this cancer diagnosis stuff, but I’m so used to being the one diagnosed. Being the one on the outside looking in, I’m less accustomed to. I’ve known K and M for the better part of 20 years. I was at their wedding, vividly remember the birth of all three of their children, had worked with, attended social events with, traveled with, and been good friends with them for what seems like a very long time. They knew me when I was originally diagnosed with breast cancer, and again, of course, the second time around.

When hearing of the situation, I felt pretty helpless. I tried to balance sending messages of support and giving them room to breath. K and M are such wonderful people and they have a large network of support. That also means they had a lot of people to communicate with while simultaneously processing this earth shattering diagnosis. I know it consumed my thoughts for the better part of most days, so I could only imagine what they must have been going through.

It took about a week for the tumor pathology to come back and it wasn’t exactly great news. M was diagnosed with glioblastoma, a very aggressive and difficult to treat form of brain cancer. I had done some initial research even prior to the pathology, and I had my fingers crossed that it was anything BUT glioblastoma. Unfortunately, it was not to be.

This is the tough part of being diagnosed. The doctors give you a poor prognosis and it takes awhile to wrap your mind around it. I think it’s like you quickly have to move through the 5 stages of grief…denial, anger, bargaining, depression, and finally….acceptance. I would even argue that you move back and forth through the stages in no particular order. Each day is different. One day you’re angry, the next day you’re in denial. There simply isn’t an instructional manual and trust me, you REALLY wish there was. My heart hurt for K and M, but I knew I could only be there when and if they were ready.

I can’t believe it hasn’t even been two months. It somehow feels like a lot longer. M has begun chemo and radiation. I’ve been fortunate enough to get to take him to a couple of radiation appointments. It has given us a chance to talk, cancer patient to cancer patient, and I’ve tried to share my limited wisdom with him. Yes, I’ve been dealing with this for a long time, but every case is so different. Not only are our cancers different, but life situations are different as well. I can share my experiences, decisions, feelings, actions, etc….but there is no guarantee that any of it will apply to him or help him.

But here is the ironic thing. Spending time with M, has ended up helping ME! It’s been almost 8 years since I received the “stage 4, incurable” cancer diagnosis and I think I have forgotten quite a few of those early feelings and lessons. Talking with M has brought it all back. We’ve discussed how painful it is to watch those we love suffer through this with us. We’ve talked about how you leave a legacy for your children, just in case you’re not here very long. We’ve talked about the delicate balance between reality and hope. We’ve talked about the roller coaster of emotions and how it can change so drastically from day to day. He shared how quickly his priorities changed. Suddenly there is no time for drama, toxic people, boredom, or meaningless activities. It’s been really good to be reminded of these things and these feelings. Sometimes, I think I’ve slipped back into that “denial” stage. Especially since being on my chemo break. When they keep telling you you’re terminal, but you just continue to press on, you sometimes forget. Most of all, this has been a huge reminder to not take anything for granted.

K and M still have a very long road ahead of them. I’m amazed at how strong they are-both as individuals and as a couple. They’re doing the best they can in the midst of a crappy situation, and I admire them immensely. While having lunch with K the other day, she said to me…”I’m sorry that I never really got it.” to which I replied, “I’m sorry that you get it now.” No one really gets it until it happens to them, and I don’t fault anyone for that. I only wish that I could take away the pain of “getting it.”

Anyway, less than a month until my next scan. Each time I start to worry about it, I stop myself and come back to the moment. Today, I’m not on chemo. Today, I feel good. I’m focusing on those things and trying not to get ahead of myself.  Wishing everyone a very happy holiday season and all the best in the new year!!!

Give Me a Break!

This post may be a little bit scattered. I try to stick to one subject but I’ve got a couple of things to talk about right now. The title of this post has multiple meanings, as you will come to find out.

First, I have been granted a three month break from chemo. After 20 weeks of once a week treatments, my doctor decided that the side effects warranted a break. I had asked for two weeks off for an upcoming trip, but after discussing the side effects in more detail she decided that it was time for a longer break. Most worrisome to her is the neuropathy. Neuropathy is pretty gnarly. While it isn’t what I consider painful, it is annoying and a constantly present symptom that causes several issues. First of all, in case you don’t know, neuropathy is the disfunction of peripheral nerves. It causes numbness in your hands and feet.

Let’s begin with the feet. The biggest issue is balance. When you can’t feel half of your foot, there is a delay in the message being relayed to your brain with each step. It takes slightly longer for me to realize my foot is on the ground and stable. This slows me down, and I feel like I am walking funny. I’m not sure if anyone else notices, but it’s very apparent to me. My hands are numb from the 2nd knuckle to the tips of my  fingers. Sometimes I drop things when I feel like I’ve got a good grip on them. Fine motor activities are difficult. Opening cans, peeling tape, picking up small objects…..don’t always go so well.

Although the neuropathy is annoying, the biggest problem for me has been fatigue. I get up, shower, get dressed, and I’m out of breath. Short walks feel like marathons. I can hardly do 1/2 of what I used to be able to do. Sleep does not help. That’s the hardest thing to explain. It’s not the type of fatigue that a couple of extra hours of sleep will help. I feel like I’m twice my actual age.

The other side effects, gastro-intestinal stuff, dry skin, baldness, finger nails separating from the nail beds, etc. are just icing on the cake of suffering. At one point, I began to truly understand how cancer patients can be kept alive, but at the same time, they don’t have any quality of life because of the treatment. When my last scan came back clear, I was so happy and excited, yet completely unable to show those emotions physically. For a second I thought “YES! I get to live longer!” The next thought was “But do I want to?” The mental toll is real as well, but that is perhaps a subject for another post.

So, what else could “Give Me a Break!” possibly mean? It’s the whole PINK thing! Every October I get on my soap box and preach to the world…..”Enough with all the pink awareness crap!” I don’t find pink necessarily offensive, I just want people to realize a couple of things. One, we have to move past awareness. It’s 2019 and everyone on the planet is aware of breast cancer. I was aware of it back in 2001 when I got my first diagnosis. It didn’t stop me from getting it. I was also aware of it in 2012, when I was re-diagnosed stage IV. Awareness didn’t stop it from spreading. People live under the delusion that wearing pink clothes, painting themselves pink, buying pink cars and pink food, painting their nails pink etc. is actually DOING something. It’s not. The only thing that truly does anything is RESEARCH! And, like everything else in the world, research costs money. I would much rather see someone donate $5 to an organization that funds research, than buy a pink t-shirt. See the end of this post for two organizations that I have found give 100% of all donations to fund actual research.

Two, being stage IV is different than having early stage breast cancer. For patients diagnosed stages 0-III, there is a beginning and end to treatment. There is still hope that they’re cured. There is reason to celebrate. For stage IV, there is no cure. The “average” survival time is 3-5 years. There will never be an end to treatment. All we can hope for is prolonged life. We hope that they will find new drugs, new treatments to keep us alive a few more months, maybe years if we’re lucky. We can’t call ourselves “survivors.” I would never deny the early stage patients the pleasure of celebrating their recoveries, it’s just that we can’t be included in that group. No one wants to talk about the 40,000 plus men and women that die of breast cancer every year. That’s not nearly as much fun as celebrating the survivors who “beat” it. I just want people to realize that cancer is not pretty, it’s not easy, it’s not fun, it’s definitely not pink.

If you’ve read this far and you’re still with me, thank you! Here are those organizations I was talking about:

http://www.metavivor.org             www.standuptocancer.org

Your support is so appreciated!

 

Complete Response to Therapy

Back in July, the pain in my right leg escalated to a pretty serious point. I had been having a little trouble with it on my trip in June, but I had chalked it up to the extra walking and activity on the trip. However, when we returned the pain continued to worsen. My doctor first ordered an X-Ray and everything looked normal. But because the severity of the pain, she ordered a bone scan. Unfortunately, the bone scan looked ominous. Cancer seemed to be everywhere. My pelvis, my arm, my spine, my ribs, my skull, and, yes, both femurs. Which likely explained my pain.

Guess what……RADIATION again! The only reason I didn’t blink an eye was because it was going to possibly reduce or eliminate the pain in my leg. 5 shots to the right femur, and honestly, it was pretty easy. What wasn’t easy was the mental toll that scan took on me. I questioned my oncologist about progression. In April, when we did a PET/CT, there was nothing reported on my femurs or ribs, so it seemed as if  the chemo I am on, might be a bust. The femurs were easily explained as the PET/CT did not go low enough to see the spots on the femurs. The ribs, she reasoned, were possibly just too small to see at the time. She told me to do at least three more chemo treatments and then get another PET/CT. I reluctantly agreed, but was not so optimistic about the chemo doing its job. The good news is the radiation did reduce my pain. It did not eliminate it, but it is much more bearable.

Fast forward to August 9th….PET/CT day. This was tough as I wasn’t feeling good about it. I’m not sure why I scheduled it on a Friday knowing I would have to suffer the weekend wondering about the results. Maybe, underneath it all, I just wanted time to prepare for the worst news.

Sunday night I was hit with a major wave of anxiety. I knew the results would be in my email Monday morning. I started researching what type of chemo might be next on the menu. I got on my cancer discussion boards and asked for some encouragement. I didn’t want to go to sleep. Eventually, I decided it was time and headed to bed. But, not before deciding to clear out my email inbox.

I opened my email, and there it was. “Message from Kaiser.” I almost didn’t open it because usually when messages come through that late at night, it’s only an appointment reminder. But I opened it anyway and it was the results from my doctor.
When I clicked on the report, the first words I read were “Complete Response to Therapy.” Wait, what? What does that mean? I’ve never had a report say those words….EVER. As I continued to read, it meant that NOTHING was lighting up. No cancer was detected! If you know how a PET/CT Scan works, they inject you with a radioactive sugar and cancer consumes the tracer very quickly, thus “lighting up” the spots that are cancerous. And, as I said before, nothing was lighting up. Unbelievable.

So, anyone confused about how my bone scan had me planning my funeral and a PET/CT detected no cancer just a few weeks later? Yeah, me too! Bone scans do not “light up.” They show basically black spots where something is detected on the bone. “Something” could be cancer, could be scar tissue, could be old fractures, etc. Basically, it doesn’t discriminate between cancer and everything else. It was assumed that all of the black spots were active cancer because of my history and because that’s what we’re looking for. As it turns out, comparing PET/CT’s to Bone Scans is pretty useless. As my doctor said, we’re comparing apples to oranges.

What is useful is comparing a current PET/CT to a previous PET/CT. In April, I had three vertabrae with cancer, pelvic spots, a spot on my arm, and the ever present spot on my skull. If you’ll remember, this is when it was decided that I had to move on to IV chemo and I began the drug Taxol on a weekly basis. I knew the IV chemo would be tough, but had high hopes that it would also be effective. I never imagined it would be SO effective.

Now there is always a flip side to good news. The good news is my scan is clean for now, the bad news is the chemo is most definitely taking a physical toll. Neuropathy has kicked in so I have numbness, tingling, and pain in both  hands and feet. I’m tired and get tired very quickly. I’m bald. Gastro-intestinal symptoms are constant. I never know what or when those will hit. Everyday I wonder will it be heartburn, bloating, diarrhea, and occasional nausea. I’m on more meds to address side effects than I am to address cancer. That’s how this whole thing works. My oncologist told me that she cannot leave me on this chemo indefinitely as the effects will be cumulative. But, there are other options and possibilities that include dose reduction and/or taking breaks that can help with the side effects.

Now it’s important to note that the result of this scan DOES NOT mean I’m cured. There is currently no cure for Stage IV breast cancer. If I’m lucky, the drugs will hold the cancer at bay for many months, maybe years, but, in the end, it will return. We can only hope that it’s later and not sooner. For now, I’m just thrilled that it’s all under control and I can breath easier for at least a few months. I can count on being alive for some more trips and milestones. Thanks to everyone who always sends words of encouragement and love as I make my way down this road. It means so much to me!

For Real

I sometimes struggle writing this blog. Cancer is a ride that takes me through many twists and turns, ups and downs, highs and lows. Part of me wants to always be positive, look at the good and downplay the bad. At the same time, it wouldn’t be honest to do that. It would feel like a betrayal to myself and all other cancer patients to hide the real cancer experience. So, I’m not going to do that. But, I am going to start with the positive.

In April, I went to South Africa. It was a trip of a lifetime. There are simply no words to describe what it’s like to see animals in the wild. To be so close and observe their magnificence in their natural habitat is simply awe inspiring. I will never be able to enjoy a trip to the zoo ever again. I was never a zoo fan to begin with, but this sealed the deal. Not only did we do the safaris, but we spent time in Capetown and went to Victoria Falls on the Zambia/Zimbabwe border. I had only dreamed of visiting such exotic locations and to actually do it…….sometimes I feel like it must have been a dream.

After I returned from Africa, it was time to face the music and figure out what was happening with the cancer. I was scanned on April 30th and the news was not good. Definite progression this time. Three new vertebrae and a spot on my left arm. At least there was no question that it was time to move on. But, moving on was a real slap of reality. IV chemo once a week, every week, indefinitely. I had another trip coming, so they wanted to get things started and get a few treatments under my belt before I left. In a matter of three weeks, I had three IV chemo treatments, lost my hair, had a port surgically placed, and prepared for another major trip.

Chemo 1, some pretty major fatigue, followed by some major back pain. Pain as in can’t sleep, taking the narcotics, lying in the fetal position waiting for it to kick in kind of pain. I was x-rayed and no source of the pain was discovered. It did slowly improve….thank goodness.

Chemo 2, muscle aches. I felt flu like and again, pretty lethargic.

Chemo 3, nausea and stomach upset, along with hair loss. I was also quite upset when after having my port placed, they decided it couldn’t be accessed because of possible infection. I was so looking forward to NOT being stuck and having the IV, only to be told it was “on hold” until I complete a course of anti-biotics.

And then it was time for my trip to the Baltics. I know I said chemo would be once a week, every week, indefinitely, and it will be…..except when I travel. My doctor knows I have some pretty lofty travel goals and that those will always come first, as long as I’m well enough to fulfill them. She is in complete agreement. So now I know a sure way out of chemo is to plan a trip!

My trip was incredible! I absolutely loved the Baltics. St. Petersburg, Russia is by far, the most beautiful city I have ever seen in my entire life. It was unreal. Everywhere I looked there was unbelievable architecture, picturesque scenery, and unrivaled history and culture. I was in awe. We also visited Tallinn, Estonia, Stockholm, Helsinki, and Copenhagen. Not to mention our days in Amsterdam and Belgium prior to the cruise. The weather was wonderful and I saw and experienced so much! I consider myself so lucky!

I returned on June 13th and it was back to chemo just a few days later. As I write this, chemo was three days ago. Today has not been a great day. I’m tired and for whatever reason, my leg hurts. That’s the fun thing about cancer in your bones, pain seems to randomly come and go in weird places. The good news is they were able to access my port this time. On Monday I go in for blood work and Tuesday I get another treatment.

My doctor asked me how I was doing and I told her that I feel like this cancer stuff is “for real.” It’s harder to ignore or bask in denial when I’m being treated every week, dealing with chronic pain, and managing a new slew of side effects. It’s also hard to look when I pass a mirror and see Uncle Fester staring back at me. I’m not a vain person, and I know I should feel lucky to be here…..with or without hair, but sometimes I just look at myself and want to cry. I had to have a new passport photo taken today and it just kind of broke my heart to compare it to my picture from 10 years ago. I’m pretty much unrecognizable, and truth be told….it hurts. Who knows if I will ever have hair again.

My next scan will be around September. Hopefully we will see some improvement, or at least stability. Hopefully my body will adjust to the new chemo and side effects. Hopefully I will get to continue traveling and spending time with my family and friends. While I feel it getting harder, I don’t think it’s time to throw in the towel just yet. I’ve got a lot more to see and do. I try to set small goals and big goals. When I was first diagnosed terminal, I just wanted to live to see my son graduate high school. Now, with a little luck, I may actually see him graduate college! It’s not too far away. And in a few weeks, guess what……..another trip. Just a short one this time, to New York City. But, I’ve never been and I’m very excited to see it. I think my travel plans really help to keep me going through the treatments.

Realistic Optimism

My January Pet/Ct scan came back as a “mixed bag.” Overall, the cancer is stable, except for 2 spots in the lower pelvic region that progressed. One progressed in both size and activity. The other progressed in activity only. These are perhaps the most difficult scans to deal with. The options: 1) Do nothing. Stay the course and see what happens. I’m not usually a “do nothing” fan. I’m more of a proactive kind of person that likes to address issues before they become bigger. 2) Call it progression, ditch my current chemo and move on to the next drug. The problem with this option is that I am at the threshold of IV chemos. IV chemo meaning, have a port placed in a major artery, go in once a week, get an infusion, lose my hair, etc. Certainly not fun, but something I always knew was coming. 3) Radiate the two problem areas, stay on the current oral chemo, and re-scan in a few months. This way, if there is truly progression, we will see it in other areas. With my oncologist on maternity leave, I consulted with the radiation oncologist and chose option 3.

Back to radiation I went. Radiation does not hurt while you’re receiving the treatment. It is pretty easy. You lay there, very still, while a huge machine rotates around you. They first take x-rays to insure you’re lined up correctly and the dose will be delivered to the right spots. I always know when the dose is being delivered because there is a very distinct buzzing sound. The techs come in, help you get off the table and off you go. Rinse, repeat for however many days/doses you’re getting. This time it was five. They tend to do 1, 5, or 10 in cases of cancer that has spread. Early stagers (which it’s been 18 years since I qualified for that category) get 35-40 daily treatments. But in early stage, the goal is still to cure the cancer. In my case, they’re not looking to cure anything. The idea is to control symptoms, and prolong life. I thought I had escaped my latest round of radiation side-effect free. But, unfortunately, about 10 days after finishing, I developed a very painful sunburn in the pelvic region. I won’t get graphic, but this is skin that doesn’t see the light of day much anyway. It was so painful! It blistered. It peeled. I had to go commando for a couple of weeks. I was quite happy when it was resolved.

My oncologist returned from maternity leave in February. She agreed with my decision and we scheduled another Pet/Ct for the end of April. So, I bought myself at least 3 additional months of oral chemo. I hope for more than that, but if there is clear progression in April, it will be time to switch. I leave for South Africa at the end of March for two weeks. I’m so excited as this trip has been on the calendar for a little over a year. I don’t suspect I’ll ever be able to afford another South Africa trip, so this really is a once in a lifetime event. I’m lucky that my doctor supports my traveling and is willing to work my visits and treatments around my trips, but that will become more difficult if I have to go in once a week.

I am trying to be “realistically optimistic” about the situation. Realism is necessary in accepting this bullshit diagnosis, for lack of a better term. You have to accept that there is no cure, treatments suck, side-effects are numerous, and you’re never going to be done with treatment……at least until you die. The optimistic side is the fact that I am now over the 7 year mark of survival. At diagnosis, I was told 3-5 years is the average. I’ve managed to avoid the IV chemos for these 7 years, which is rather remarkable. And, I am maintaining a decent quality of life. I won’t say it’s always easy, but I’m still able to work part time, travel, socialize, and keep checking off all of those items on my bucket list. Realistically, I know it will end at some point, but optimistically, that point is still years away!

I’ll post an update after my trip and my next scan! Fingers crossed!

Random Thoughts

Today is my 46th birthday.  Birthdays have a different feel since being diagnosed as terminal. You can’t help but wonder if it’s your last one. Some people feel sad as they get older, but I can only describe each birthday as a sense of relief. Relief as in “I made it!” I think about the people I’ve lost and how old they were when they died. While many of them died young, I still hope to live as long as they did.

This past year has been one heck of a ride. So many ups and so many downs. I gave up a career I loved, but traveled to so many incredible places. My mother’s health has not been good, yet she is living with me so  I can be with her. I started chemo with many side effects, yet the cancer has remained stable. I lost another friend to cancer in November, yet was so fortunate to have spent time with her despite the fact we lived 9,000 miles away. I think life is probably like this for just about everyone, cancer or not. We treasure the good, get through the bad, and try to catch our breath in between.

This year I found myself in England, Spain, France, Italy, Vatican City, Greece, Monaco, Malta, Panama, Colombia, Guatemala, Costa Rica, and Mexico. I loved the different languages, cultures, customs, scenery, and adventures. I learned more during my travels than I could ever learn from a book or a website. However, despite all I learned and all the differences, what struck me most is how similar people really are. I can’t explain why but I can say that I feel a much stronger connection to humanity as a whole. The human experience is universal in my opinion. And this is what drives me to continue to travel and experience new places and new people.

People say that transitioning to retirement is hard. The lack of routine, purpose, activity can be hard for some. I, however, can’t say that I ever find myself bored. In fact, I’m not sure how I ever held a job. There are so many things I had hoped to accomplish…..organizing the basement, catching up my scrapbooks, cleaning the house, volunteering, etc. Some of the projects have been started, but time just gets away from you.

Tomorrow is my 6 month PET/CT scan. Sometimes I have a good feeling about them, sometimes I have a bad feeling about them. This time, I have no feeling whatsoever. I really don’t know what to expect. I feel good, other than the typical side effects from the chemo. The results will be what they will be. Of course I hope for stability or improvement, but if it’s progression, I will deal with it.

I have a lot of hope for 2019. I hope to complete my planned trips. In April we are scheduled to go to South Africa. In June, the Baltics. I’m so looking forward to these trips. Areas of the world that I thought I would only dream of visiting. I’m also looking forward to seeing my brother in a couple of weeks. I’m hoping for more time substitute teaching. I miss the kids so much. I hope to accomplish some of these projects that I started. I hope for more time with friends and family. Most of all, I hope my health remains stable.

I also hope to update my blog more often. Again, one of those intentions in retirement that goes by the wayside.

I hope everyone has a very happy 2019!

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.”