I Have Cancer, Now What?

Unfortunately, people get diagnosed with cancer every day. And worse yet, sometimes they are people you know. Sometimes they are family, sometimes they are people who have already lived a long a very fulfilled life, and sometimes they are another young person like you or I. It's never 'nice' though. I know quite a few people who have had scares with cancer lately, some being big and some being small and most being... Cancer.

Those first weeks after diagnosis are a whirlwind full of new vocabulary, new people, scary appointments, and a whole lot of anxiety. I can't help you with the vocabulary, you might need to use flashcards for that. The people and the appointments can be scary, and annoying but often times they're quite pleasant. People who choose to spend their career in oncology are some of the most caring and empathetic people I've ever met. Even though I can't help you with many things, I do hope that I can give some advice that might help with the anxiety though, especially the anxiety of the unknown. The other thing that will help is time.

Disclaimer: The chemotherapy protocol I am on is one of the most intense protocols a person can survive, so I hope that I don't scare you. I also have had some pretty intense radiation and many more procedures than the average person, but I hope that everything I have been through can benefit you, the new patient, somehow.

Here is my advice, In no particular order. 

When something doesn't seem right (dosing, not getting a drug when you usually do, cleanliness things like nurses not using gloves or not wiping your PICC or Port for the correct amount of time, etc...) never hesitate to speak up- it could literally save your life. When it comes to staying alive, you are your most important job.

Do your research. Especially when it comes to drugs, always research their side effects and other important things about them. There are many many times when I needed to diagnose myself essentially when it comes to side effects, and it's likely you'll be on so many different medications at once that it can often be hard to tell which drugs are causing which side effects- that is why you need to be so diligent in your research.

Some days you will have plenty of energy, but other days you will not. It's okay. Remember that while you have cancer, and probably afterward too, you're working with a new normal. Things will never be the same. You'll likely gain insight, and some empathy, but your body might also not work quite like it used to, and your energy will take time to come back even after it's all said and done, and especially during treatment. Be kind with yourself, and let things happen as they will. If you're not familiar with The Spoon Theory, now is the time to read it and to share it with those close to you.

Occasionally you may need help doing if the most menial of tasks. Have someone on hand, just in case. If you're neutropenic it is best for you to avoid crowded places, so you may occasionally need a friend to make a trip to the grocery store for you, or to cook you a meal if your symptoms are too much to deal with.

Symptom management is a full time job- chemotherapy, antibiotics, and symptom relief drugs all have their own symptoms. Many of them mess with your GI tract, so have some medicine on hand if things swing one way or the other, don't just "deal with it" or you'll end up in the hospital for something else. Just believe me on this one.

Be clear with your loved ones about how they can be helpful to you. 95% of people who contact you after you announce your diagnosis will say if you need anything, just ask. It's also not likely you will ask much of those people, because it's human nature to just try and do it ourselves. However, prep those people you really would ask for help from. You might suggest these things to them, so that they can offer specific help rather than "can I do anything?" The things I found most helpful were:

Rides to and from appointments, especially if they're so far that you might get tired driving yourself, or if you'll be given a drug at those appointments that you can't drive after taking such as Ativan or Benadryl.

If someone can deep clean your house once a month or so, it will reduce your risk of getting sick while your immune system is in the dumps and it's also likely that when you do have the energy to deep clean, there are probably other more pressing issues to deal with. 

One thing my family did was anytime they were at the grocery store, they texted me to see if there was anything they could pick up for me. 

Cancer is expensive. You may be able to avoid huge amounts of debt, but it will take work and time. If your cancer center has a business office available to you, talk to them about applying for grants through the society or foundation linked to your diagnosis. Foundations will often pay your medical bills to a certain extent, covering co-pays or pre-deductible costs, and often will even backpay you, if you've already paid these things this year. Do some research, it will likely pay off.

Keep a list handy, I keep mine on my phone. Whenever I think of an issue or question that I need to ask my doctor about, I write it down immediately. I know you do it- you have all those questions, and when you sit down for your 5 minutes of your doctors undivided attention, you forget everything you've been wanting to ask about- I did it too. But keeping a list is so incredibly helpful, and it can really help keep things on track, and keep any of your symptoms from getting out of hand.

Lose all sense of modesty. Depending on your diagnosis, this might apply more or less to you. You'll likely need to broach the subject of fertility regardless of your diagnosis though, and odds are you will have some symptoms that you might be a little uncomfortable talking about. You've got to do it though, and trust the fact that what you tell them (or bend over and show them) is likely not going to shock your them. If it does, pat yourself on the back.

Last but definitely not least: Advocate for yourself. There have been times where I have talked my way out of drugs I didn't technically need, and that I have convinced them that I do in fact need certain drugs that haven't been ordered for me (like anti-nausea meds). I have had nurses that had never had a neutropenic patient, and have had to talk them through the procedures they needed to use with me. I have also called out staff that have done things improperly, because my safety is on the line and while it is their job to keep me safe, it is my responsibility to stay alive. Whenever possible, be alert, ask questions, and stay with the program as best as you can.

Find someone who is in, or has been, in a situation similar to yours. Don't be afraid to reach out to those people and ask them question and ask for their support as you go through probably one of the hardest points in your life. It's rough, but when you've got a good network of people to lean on and a mostly positive outlook, it's a lot easier.

If there are any other topics you want me to cover, or questions you have, please ask! I'm an open book!

Should I Laugh, or Cry?

Sorry it's been so long since we've talked, I probably had you assuming everything was fine and dandy! But let's be real, we've already learned that the easy stuff isn't actually easy. Don't get me wrong though, there has been a lot of amazing, wonderful adventures packed into the last couple months. 

We went on a vacation to the Bay Area, then just a few days later went on another one to eastern Oregon, and then about a week later went on another one to the Olympic peninsula. 

In between all of that we've had tons of fun adventures and a lot of sunshine around home, in the garden, at the lake, and up and down the coast. 

But then, in between all of that, there was misplaced lab work, some puking, some signs of wayyyy too high liver enzymes, some new lab work which caused my doctor to freak out (rightfully so) and call me after hours to schedule an emergency bone marrow biopsy because he thought I had relapsed. Results were supposed to be back in 48 hours, and over a week later I finally got the results telling me what I already knew, which was that my chemo doses were simply too high. 

Now I've been off of them for over 2 weeks, but my labs are still absolutely terrible. Unfortunately, after 11 months of this, I couldn't be more sick of staying inside, eating a neutropenic diet, staying out of schools, etcetera. So I haven't been on my best behavior, but fingers and toes crossed that I will not be severely neutropenic ever again, and I can keep myself out of the hospital for a few more weeks at least.*

*I kid you not, I don't know whether to laugh or cry, but not even 15 minutes after I finished writing that I spiked a 101 degree fever. For neutropenic me, that means go to the closest ER immediately. We showed up at 10 pm, I felt pretty darn good. The ER Doctor told me I looked better than last time he saw me, and we joked that we hoped he could find a neutrophil in my blood this time. Last time they couldn't find any (ANC:0). This time the good news is they found one (ANC:100) but that still means I'm severely neutropenic and can't fight whatever is causing my fever, likely an infection of some sort, so antibiotics it is. 

I thought for sure my oncologist would move me over to Riverbend, but he's letting me stay here in Florence. I'll be here until we know what the cause of infection is, and I'm back on the mend. Could be a day or could be a week, fingers crossed that it's the prior! 

Once again, with these darn wristbands. Lessons on properly attaching them should be day 1 of any medical training. 

New Normal

I officially finished my intensive chemo. That was the "hard stuff", and now I'm on to maintenance chemo, which is supposed to be the easy stuff. I've heard all along that even though there are so many less appointments, and so many less drugs, it's still not easy. In fact, I heard it's still very hard. I didn't want to believe those words because I was ready to get started on my "new normal", but now I'm here, and I'll tell you first hand, it's hard.

I got my PICC line out over a month ago, got some time off to remember what it feels like to be human, had a successful bone marrow biopsy, and had some time to let my counts recover from the zeros many of them had been lingering at for a while now. My counts are now great, and I'm back at it, to see where they lead me next. In the last 2 weeks I met my radiation oncologist, had my last meeting with my regular oncologist for the next 2 months, had a lumbar puncture, my first IV chemo injection without a PICC line, started daily chemo pills, started my first 5 day stretch of monthly steroid tablets, and have had 3 radiation appointments with only 9 more to go in the next 11 days. Out of all of those things, I will tell you that the worst has been the steroids. That sounds so anticlimactic, right? Steroids are officially the second worst, cancer taking the top spot, in my mind.

Right now I am on my last day of the month that I have to take Dexamethazone, which is the steroid I'm prescribed. "Steroid" often brings to mind thoughts of big and strong people with 'roid rage, but I'll tell you that I am only having the 'roid rage, but not big and strong. It's actually very weird. Most drugs give you a side effect, it's pretty straight-forward, you can deal with it, and it's relatively predictable. Dex makes me feel like a crazy person. I get aggravated, but only in my mind (so far), I feel depressed and emotional (not my usual MO), sometimes I want to eat everything, and sometimes I can't stomach anything, my mouth tastes terrible all of the time and my throat hurts like I'm on the verge of getting sick, and sometimes I have uncontrollable amounts of energy and am unable to sleep, and at other points I have no energy and feel just plain "blah" for hours or days.

I'm ready for my new normal, but hopefully it's more than this. This is very frustrating. My hair is growing back (although it will likely fall out one more time from radiation), summer is here, we've got plans to fulfill and places to be, but I'd rather not do those things while feeling like this. I know that I've got plenty more recovering to do and that it's a long process. I've always known that. But right now I'm feeling a little impatient, and quite frankly, over it.

I imagine tomorrow will be better, it is Monday today, after all.

P.S.. Have I shared "The Spoon Theory" with you all? It's a bit of a read, but it's helped me a ton while first understanding the lives other people who have illnesses that you can't see just by looking at them, and then understanding myself through all of this, and now in conveying important information like how I'm feeling, and my energy levels to people who need or want to know. It's tangible and easy to grasp, unlike many things in the medical world. Check it out when you've got a minute. 

False Summit

Remember that post that I titled "Climbing that Mountain" where I said that I was almost to the summit? That was a false summit. I figured with just a few days until my last intensive chemo that I was in the clear. That all of those scheduled things would happen when they were supposed to. But as I have learned time and time again through all of this, not everything goes as expected. I thought that since I had been fever free for almost 8 months, that I could make it another week. Turns out I couldn't. What would this experience be without at least one trip to the ER with a fever? It would have been just too darn easy.

It's rather anticlimactic, really. I am supposed to go to the nearest ER if my temperature gets above 100.4 and on Thursday I was feeling chilled while I was actually hot, just not that hot. I watched my temperature climb over about an hour, as I mentally prepared myself to head back to the hospital for the 3rd time in two days. When it got there, I walked into the ER with all of my necessary paperwork and was greeted with an "Uh Oh, why are you back here again?!" We were ushered into a fancy new positive pressure room with extra clean air, and every person who came to greet me donned a fancy yellow mask so that I didn't have to wear one. Test after test, poke after poke, they tried to find the source of infection.  Meanwhile the doctor tried to calculate my ANC with a mere 0.0 neutrophil number to work with. After a few phone calls, my usual jokes to lighten the mood, and a few stressed out nurses that hadn't had much experience with a neutropenic patient, they finally did what I never expected they would agree to. They let me stay.

I figured I'd be shipped away to the oncology floor at Riverbend or OHSU immediately, but they were all full. I guess I had been bossy enough with everyone that they figured if they made any mistakes or had any questions about my care, I'd let them know. And I did, for a few days, while my oncologist was away (of course the one time I really hoped he'd be around, he happened to be out of town... doesn't that always happen with OB GYNs also?) Once Dr. Sharman got back Monday morning and learned that I had an infection in my blood, he insisted he felt more comfortable with me at Riverbend even though I had been asymptomatic for three days, and raising hell to get someone to let me go home for nearly four. My logic was sound, a hospital full of people with the flu is not a good place for a neutropenic patient. Looking back, I probably should have just chilled out and let the doctors be the boss, but being the control freak that I am, that's not what I did. I'm also still not home.

I'm currently at Riverbend, getting antibiotics 3 times daily, and getting Neupogen shots to hopefully raise my ANC to anything higher than 0. Once my lab work shows that my counts are in fact improving and that I have SOME sort of an immune system, they'll let me go home. But until then, I'm cooped up here twiddling my thumbs, reading, blogging, and talking too much every time a nurse comes in my room. I feel great, I'm ready to conquer everything that has been delayed (one last intensive chemo and a lumbar puncture) as soon as I get out of here.

I am thankful for qualified medical staff. For kind, compassionate and knowledgable CNAs, RNs, pharmacists, and doctors. Hospital cafeteria staff, you could use some work. Science, you saved my life again.

I'll Pay it Forward

The shock, immediate feeling of gratitude and feeling of an absolute need to pay it forward still hasn't passed, it never will. But today I made yet another nurse cry with this particular story, so I felt the need to share it with a bigger audience. I didn't want to in the beginning, because I know there are people in need all over the world. I know there are people who don't have even half of the support network that I do. I'm not a religious person, but the word blessed comes to mind; as does fortunate, lucky, and just plain privileged. And I am, I know that. But I mostly am because of the amazing people that I have in my life, and that's why I wanted to share this. Sometimes I feel a bit guilty for all the love and support I've gotten not just through this season of life, but through them all. I want other people to know that every small thing they do for good can end up being a part of something so huge in a person's life. Your acts of generosity can make a person feel the way that Max and I felt in early September.

I'll start with a recap of the situation. I was diagnosed with Leukemia after teaching my first day of 6th grade science, a brand new job to me, but a job in the school district I had grown up in. I was replacing a retiring teacher whom I had looked up to for years, and had just become a colleague to almost every teacher I had ever had. After finishing my first day of the school year, I had been told that I wasn't going to be able to teach this year. That broke my heart, but little did I know I would have the opportunity to continue teaching. Right now I want to teach you to keep your faith in humanity. People are innately good. Friends reading this, our 'old' teachers are good people. Parents, your children's teachers are good people. Students, your teachers are good people. Teachers, you are good people.

I had 11 sick days that I would get paid for while away at OHSU, and then I would be on leave without pay. We would lose our main source of income this year, because Max was student teaching. We would lose our insurance because I was the one getting paid to work full time. The only thing that could change that was how good the people we get to call colleagues are.

And boy are they good. A teacher's contract is something around 200 days. And my wonderful colleagues donated that many sick days to my account so that Max and I could still have a paycheck and insurance through this whole ordeal, and through the entire school year. If they hadn't done that we would have lost a huge (especially in our minds) amount of money, and we would already be hundreds of thousands of dollars in debt because of medical bills. To give you perspective, my last bag of chemo is priced at ten thousand dollars. If not for the wonderful people working in our schools, we would be bankrupt and 100 times more stressed that we are now. So teachers, thank you for our house, food, medical care, and our relative peace of mind. Some donated many sick days, others donated just one. But they all added up to make a huge difference in the lives of two people just trying to pay the bills. We owe you a lot.

You don't get this kind of treatment anywhere else in the world. People say that the place to be when you're sick is the big city so that you can get the best treatment, and I've done that when needed. But the more important kind of treatment is the way that people treat each other. I'm from a community that rallies behind its people through the highs and lows. I wouldn't rather live anywhere else in the world. I can't wait to get back to work next school year, so that I can start paying it forward. I owe this place everything I have, and everything that I am. I will pay it forward.

Climbing that Mountain

I'm almost finished with my very last phase of intense chemo. I didn't anticipate that this all would actually fly by, but it definitely has. Between blocking out my memories of the bad days, forgetting about the uneventful days on the couch, and enjoying my good days to the absolute fullest, I've almost done it. I still have 2 years of chemo to go, but I could equate my feeling now with being just a few feet from the summit of a very large and treacherous mountain. To get to where I am, I took all the steepest paths and there were no shortcuts. I felt a great deal of pain, and pushed through- always with the end in sight. But now? I can actually see it. My last intensive chemo appointments are scheduled. There's no turning back. I don't feel so sick. I'll feel like I've really hit the mountain top on the day I get my PICC line removed. I've been staring longingly at every body of water I pass, whether it's the clear cold lake, or my bathtub down the hall. My left elbow longs to be submerged. My maintenance chemo for the next 2 years will (hopefully) be a breeze, especially compared to what I've done in the last 8 months. Once we get everything figured out, I'll only see the doctor once a month and will get my chemo then, by IV. While I'm so happy to have my PICC line out, I'm not looking forward to the 24 lab draws by needle, or the 24 chemo infusions by an even bigger needle. But it's a downhill slide none-the-less. Before we know it I'll be at the bottom of the mountain and ready to carry on with my life. I know there will be other mountains, and I know I can do what I need to do because I've done this. And this has been the hardest thing I've ever done.

Now let me give you a quick rundown on the last month or so...

I had a headache for about 3 weeks which was pretty terrible, and they still come and go but less frequently now. In the beginning it was full blown migraine symptoms, with my hearing fading in and out and being super sensitive, tunnel vision and sensitivity to light, and them often lingering for days and keeping me awake at night. I finally gave in to doctor's orders and got an MRI. The crazy part (other than the fact that the MRI machine looks like a spaceship) is that they could actually see the area in the left side of my brain that had been impacted by the migraines. The MRI machine sounded like a jackhammer, which of course gave me another migraine, and I can't get my nose ring back in. But all is well in my brain.

In the last 2 weeks I spent 8 days getting chemo in Eugene. I can say I'm getting a little sick of the drive, although it has been absolutely beautiful out and at least it's not trips to Portland! It is curvy though, and last week they didn't give me any nausea meds, and I didn't notice until the trip home. Then I noticed, and I puked a lot, and now I really appreciate the nausea meds because they work (when you get them)! When I started chemo I absolutely pictured it just how it is in the movies: bald, pale and puking a ton. For me only 2 of those things have been true the majority of this time, and fortunately I've missed out on the worst one for the most part.

Last week I had a terrible terrible (worse than all the others) lumbar puncture. You know it's going badly when the doctor has tape across the bridge of his nose from the last patient, and he says to you (after the 3rd try at getting spinal fluid) "I'm going to go get the other doctor, he's really good at these" My thoughts, you ask? Wow, we should have started with the really good doctor, shouldn't we have? This of course came after our 5 hour wait to even get the procedure started, and afterward I still had to lay flat for 2 hours. Needless to say, it was a long day, and lumbar puncture #13 was NOT a lucky one. I was supposed to have another one this last Thursday, but I asked that it be delayed because I was still sore and bruised from the last one. The delay is almost up, and lumbar puncture #14 is happening on Tuesday. Fingers crossed it goes a little better!

For those of you who remember me mentioning that I could potentially be done by April 18th, obviously that's not the case. At the beginning of the month my ANC had to be over 750 to move on to the second half of the phase, and it was 500. That meant that I had to delay by a week. But it's okay, because I ended up being able to take a trip to Washington with the family for my cousin's baby shower! That means I'll be an aunt soon, right? right? Yeah, something like that.

And this is the part of my blog post where I would normally update you on my chickens and my garden, but Max told me that he's pretty sure everyone knows everything about my chickens. So if you don't, go look at my Instagram. It's become my Chicken-gram. And my garden? It's doing great so far! I picked a spinach leaf out of the raised bed yesterday and right as I was about to eat it my dad reminded me that it could have bird crap on it, and it had just grown straight out of compost. I reminded him that my ANC was over 1,000 and ate it anyway. It was delicious.

It's far too beautiful of a day for me to spend more time writing, and I'm sure that'll be a pattern here for the next couple seasons. I'll try and keep you posted, but don't count on it. If I'm feeling good, I'll be outside with my big floppy hat, my sunscreen, my garden, my chickens, my dog and my husband.

Hibernation

It's been almost a month since my last blog post, I apologize for not keeping you in the loop! Unfortunately the reason for most of my lack of blogging has been because I haven't been feeling too great, but I have had some great moments mixed in there and I am very appreciative for that.

When I last blogged I was beginning to feel a bit of "Biop-xiety" because I had a bone marrow biopsy coming up, and it went really well and it also went really terribly. I officially have no evidence of disease in my bone marrow (which is where leukemia originates) so obviously that's amazing. However with many types of cancers, when you get the good news of no evidence of disease, your doctor cheers and tells you that you can be done with chemo and that they will see you about every 6 months just to make sure you're still in the clear. ALL is a bit different, because people with this form of cancer are so prone to relapse. I am very fortunate that I have been able to achieve this sort of remission so quickly and effectively using solely chemotherapy (many people are required to either have a bone marrow or stem cell transplant in order to stay in remission) and hopefully that will continue to be the case, although I am finishing my intense chemo soon, possibly as early as April 18th. From there I will still have 2 weeks of radiation, and 2 years of lower doses of chemotherapy (bi-monthly lumbar punctures, monthly Vincristine injections, monthly steroids for 4 days in the pill form, and almost daily chemotherapy pills called Mercaptopurine)

That's all the good news about the bone marrow biopsy, but as for the actual procedure itself, things went terribly. [If you're squeamish, skip this paragraph] This was my 3rd biopsy, and by far the most painful procedure I've ever had (including multiple broken bones, 11 lumbar puctures, and many other crashes and accidents). The doctor who did it lucked out and picked a spot in my hip that was full of scar tissue because as luck would have it, he chose the exact spot that my last biopsy was at. He used a good amount of lidocaine, but 5 lidocaine shots don't feel great either and they sure don't help the pain of a needle going through your hip bone or into your bone marrow. I've learned my lesson when it comes to asking to see needles and test tubes of whatever comes out of me, but the needle felt exactly like he had gotten a good sized chain squeezed into my hip bone, and then he pulled it back out through a much too small hole. And this didn't just happen once, because he was unable to get what he needed the first two times. Once all was said and done, I was incredibly sore for about a week, and was still sensitive at the site for another week. My next one happens at the beginning of maintenance, so it's sort of already on my radar. I told Dr. Sharman how terribly this last one went though, and he plans to do my next one. He said he's only bent one needle during a bone marrow biopsy and it was on a retired lineman for the 49er's.

At the beginning of March I started my final 2 month round of intensive chemo, and visited my doctor up at OHSU for the first time since October. It went really well, they didn't really have much to tell me, and just answered any of my questions. They also discovered that my body likes my PICC line so much that over the course of the last few months it had sucked my PICC line like 3 centimeters further into my body than it needed to be, so it was tickling my heart. It was nice to get that taken care of, and that whole trip was very uneventful which is fantastic. During the first week I started a brand new chemo drug, and I also was taking a full week of a quite high steroid dose. It all started out fine and dandy through my trip to Portland, but by the weekend I had been on the steroid for almost the full week, and I was about to get another dose of the new chemo drug. Long story short, I hit a wall.

I don't think it was either of the drugs in particular, but rather the fact that my body has been pumped full of chemo drugs for just over 6 months at this point. I went into hibernation for almost 2 weeks. I had headaches and body aches of all different sorts, major fatigue, and a bit less than my usual positive attitude. I cried a few more tears than normal, and the pain from the headaches just absolutely wore me out. I knew that it was coming, and I was prepared to handle it, but it was rough. I finally crawled out of my hibernation in the middle of last week, but I'm still dealing with some headaches and fatigue that comes with the chemo drug. I also started another week of steroids on Monday, but this time I was prepared to deal with it: I deep cleaned the house, reorganized, got myself lined up with some healthy food choices, did some art, and started some pretty nifty crafts. So far, I'm handling it much better and haven't shown any real signs of "roid rage" yet and when I start getting restless I have about 10 unfinished projects to work on right now!

Now on to updates about the fun stuff!

I got my chickens on our way home from OHSU, they're growing like weeds, and yesterday one of them tried to fly the coop already, even though our coop isn't even built yet, so that's the plan for later this week. I thought I would have more time! They are so cute, and they absolutely love their daily worm search time (I bring them a bucket of good dirt and hide worms and potato bugs in it) and today they even got an extra adventure and got to spend some real life outdoor time in a laundry basket. I also have a bunch of raised beds ready to go, and already have turnips, carrots, radishes, peas, kale, swiss chard, cabbage, beets and spinach in the ground! It's starting to feel a lot like spring, especially since the sunshine finally came out! It makes it pretty easy to find joy everyday with all of these cool things going on in my backyard.

A huge shoutout to the awesome little art workshop that Kim Pickell put on,
it totally pulled me out of my funk and got me back to creating things!