Wednesday: January 22, 2020

Happy happy New Year, everybody!

It hasn’t even been a month since I last wrote, but it feels like so many things have happened since then. We’ll start at the beginning of the treatment journey. First things first, we learned that Cladribine (the chemo) can cause your body to develop a wide range of allergies to different medicines. Now, because things can’t possibly just go smoothly and be easy, we’ll start with allergic reaction #1. I was put on Allopurinol to help regulate my uric acid before starting chemo (something about chemo can cause some issues with the uric acid in our bodies). They said I had taken it before, so I wasn’t too concerned. But lo and behold, a couple days after starting it, I woke up with a swollen face, throat, and a rash from head to toe. Not fun. But my doctor called in a steroid pack and I was doped up on Benadryl for a couple days and it went away.

Then we started chemo. The first day wasn’t as terrible as I expected considering I started both of my treatments that day. We started with Rituximab over about 4 and a half hours then moved on to Cladribine for about 2 hours. Nausea and a migraine set in pretty quickly, but a couple of medicines later, I was fine. First day over. The rest of the chemo days went pretty easily and pretty quickly. When I say I was shocked with how well my body took it, I mean I was SHOCKED. Absolutely nothing like the pure misery of my first round of chemo in 2016. The Monday after chemo (6 Jan) was the start of allergic reaction #2. Not to the chemo, but to the tape used in the dressing for my PICC line. Following Rituximab treatment every week, I go get my dressing changed. The first time I had this changed that Monday, they pulled the dressing off, cleaned it and my arm lit up like a firecracker on the Fourth of July. It was bright bright bright red, extremely itchy, and had little bumps all over it. I now have a hypoallergenic dressing instead but the itchiness is still there and still a giant pain.

I’m now halfway through my Rituximab treatments. I see my doctor every week, look at my blood counts (and whatever new allergic reaction I’ve had), and then do treatment. Rituximab is pretty painless. It just makes me incredibly tired. I’ve been in quarantine since finishing chemo which was expected due to my white blood cells dropping to 0.6 (friendly reminder that normal starts at 4.1) and giving me an extremely minimal immune system. Right smack dab in the middle of flu season, I might add. BUT my platelets rose immediately. I started chemo with my platelets around 56,000. The Monday after finishing chemo, my platelets rose to 76,000. That may not sound like much to someone who has normal platelets in the 140,000 to 400,000 range, but it’s a really great sign that my platelets immediately rose 20,000. They continued to rise to 82,000 the week after and have since stabilized there for the time being. My white cells have since climbed to 1.1 so we’re on the up-and-up. But part of getting those white cells to climb up was due to being put on an antibiotic last week. Queue allergic reaction #3 in a months time. Itchy rash all over for the weekend. Slowly getting better thanks to my good pal Benadryl.

SO. I have 4 treatments left so 4 weeks left. It feels like I’ve been doing treatments and had a PICC line for much longer than just a month. But what’s really crazy is I finish treatments, pull the PICC line out, then turn around and get married the next week. Life sure comes at ya fast and hard.

{James 1:12 NIV}

Thursday: December 26, 2019

MERRY (late) CHRISTMAS! I hope everyone enjoyed their holiday and the time off to spend with family and friends. Judging by the amount of food we all consumed, I’d say me and my family overly enjoyed it.

Now that Christmas has come and gone, the real world high-tailed it back. Starting today, we’re making our march to butt heads with cancer again. I got my PICC line inserted this afternoon. In order to prepare, I’ve spent the last couple of days taking a hefty amount of time in the shower so I can really relish in the fact that I have two arms for showering. The next 8-9 weeks will see me struggling and cussing to shower with an arm and a half (I can put plastic wrap around the PICC line to kind of make the arm useable, but I still have to be extra careful that it doesn’t get wet).

I know I previously mentioned what we “thought” was the path forward. It’s only slightly shifted. First things first, MD Anderson didn’t find anything weird or abnormal from the biopsy that they just HAD to perform themselves (still bitter that they thought a cancer that grows at the pace of an oversized snail would have some crazy movement in a whopping three weeks time). They found 20-30% cancer cells; more than Huntsville found, but not a big deal because MD Anderson digs a lot deeper into the marrow than Huntsville does. No surprises. Treatments are the same as we had thought, except we are no longer taking a month break between treatments. Rather, we are starting them at the same time. Starting December 30th, I go in for my first round of Cladribine (chemo) and my first round of Rituximab. I will finish out the week (30 December – 3 Jan) with chemo and follow up the next 7 Mondays with Rituximab. Obviously we are doing the 5 days of chemo this time vs. the 7 days I did last time. The dosage is a little amplified but it’s administered at my cancer center over a span of about 2 hours. We’ll see if it hits as hard this time, but I’m not really thinking it will. Here’s to optimism.

I’m three days past my cancer-versary, but we’ve pretty much come full circle since December 23, 2015. We’re a little less cancer-y this time and a little more prepared, but we’re bringing in another New Year handcuffed to chemo. But what can a girl do about it besides keep on keeping on?

{Matthew 6:25-27 NIV}

Friday: December 6, 2019

Here we are, 17 days away from four years since I was first diagnosed. It’s weird that it seems like it’s been decades, but at the same time, it feels like it was all just yesterday. Maybe that’s because we’re right back where we started.

Back in November, I had the bone marrow biopsy that I mentioned in the last post. It’d been so long since I’d had one that the pain from it was a little more extensive than I remembered it being. But, overall, it went well and everything was fine. We got the results about 2 weeks ago that there’s about 8-10% cancer cells – they traced it in both my blood and my bone marrow. So while it’s very clear that it’s active and growing again, we caught it right on time. I’ll take 10% over the 70% I was diagnosed with in 2015.

Jump back to present-time and we’re in Houston at MD Anderson. I spent all day yesterday at the doctor’s office meeting with my specialist. And, man are they predictable. Let me preface what I’m about to say with this: I had the biopsy in November at home in Huntsville with anesthesia in order to prevent having one here where I knew I’d be awake. And let me remind you that the last one I had here was the absolute worst of the almost ten that I’ve had. My parents and fiancée were a lot more convinced that this was actually going to work. Me… not so much. I was still willing to bet that they’d want one here and I’d have to suck it up and deal with it. So surprise! They wanted another one done yesterday. And so it was. They prescribed me a Xanax because my nerves were out the roof, but that’s it. I took the Xanax and we waited about 30 minutes before they called me back. I’m a tough girl, but I can honestly say this was the first time I’ve been nervous or worried or scared about a biopsy. The last one I had at MD Anderson scarred me for life. So there I am… laying stomach down on a chair and they start prepping the right side of my hip bone for the procedure. I felt a few seconds of sharp pain every now and then and a few stings here and there, but I absolutely, undoubtedly can not praise this nurse enough. I laid there talking with the other nurse the entire time (and cringing every now and then from the small bouts of pain), but when the nurse doing the procedure said “oh by the way we’re done, I’m just stopping the bleeding now”, I was in shock. She did absolutely phenomenal. I really can’t say enough nice things about her. It was, by far, one of the easiest biopsies I’ve had and I was wide awake. Color me impressed.

So now we’re back in the waiting period. We’re waiting for these biopsy results before officially setting a path forward. Based off the November biopsy results, and assuming they don’t find anything weird or abnormal in these results, it looks like we’ll be looking at a mix of Cladribine (chemo) and Rituximab again. Except this time these two drugs would be back to back. I would do about 5 days of continuous chemo then give my body about 3-4 weeks to build itself back up then start Rituximab one day a week for 8 weeks. I’ll remind everyone that I never really felt the effects of Cladribine until about the third or fourth day, so if I’m only doing five days this time, then maybe it’ll be a little easier. And for those that don’t remember, Rituximab was a walk in the park. All it ever did was make me sleepy because they give me Benadryl to counteract any possibly allergic reactions that could be had during the intravenous procedure. But for now, we wait for about a week to ten days before we officially have a decision. Sounds like it’ll be an extra Merry Christmas this year.

Now you can enjoy the agony of waiting with us. I’ll spare you the rest of the details, but all-in-all, I was extremely pleased with the day. My specialist here is the most optimistic person I’ve ever met, so I’ve learned to take that optimism with a grain of salt. But his optimism tends to spread a little. If all goes like it’s supposed to, I’ll finally get to say goodbye to cancer for good after all these treatments are said and done. Between marrying the love of my life, finishing building our new home together, and saying goodbye to cancer…. here’s to 2020 being the most promising year of my life.

{Ephesians 4:29 NIV}

Saturday: October 26, 2019

Welcome back! I guess a year and a half hiatus was long enough.

I’ll start with a brief life update. I’m engaged! I’m getting married in 4 months and 3 days and becoming Jessica Graner. I still can’t believe I would be so lucky. We’re also building a house, so I’ll probably be changing my address and my last name all within a month of each other. It makes for some stressful days having such big life events at the same time, but it makes life pretty damn fun, too.

So I guess it makes it fairly obvious that there’s some news on the cancer front if I’m dusting off the blog after a year and a half. I’m not going to throw around the word “relapse” because the word disgusts me. Plus, my doctor never said it, so why should I? Rewind to 3 months ago. I had my 6-month checkup per usual. My platelets (that as a reminder typically top out around 90,000 these days) were around 65,000. Now nobody was too concerned because everything else seemed normal and I had no symptoms of anything, but as a precaution, we figured it’s better safe than sorry to have an ultra sound, do a flow cytometry with my blood, and follow back up in 3 months. So here we are. I had the ultra sound 2 weeks ago. Results came back and my spleen is about 3 cm bigger than normal and there was something in my liver. Move on to the CT scan 2 days ago. I’ll squash the panic bug and go ahead and say that I just have a fat liver. Some fatty tissue showed up in the scan of my liver, but it’s absolutely harmless and nothing to be concerned about whatsoever. Good news story of the day right there. Moving on… the CT scan simply confirmed that my spleen is slightly enlarged. And my platelets are now around 57,000, so they are steadily declining. If you know anything about my journey, you know those are the first two symptoms of activity with my cancer.

So now you’re all caught up. Next steps? Perhaps you were hoping I wouldn’t say it much like I was hoping my doctor wouldn’t say it but… bone marrow biopsy. Have no fear though because I’m doing it in Huntsville where I’ll be knocked out like I prefer. After that, MD Anderson visit #2. Just like all of the other major decisions that have been made this far with a second opinion, my doctor wants to follow that path regarding what my next steps look like. There are several options for what lies ahead. There is the chance that the cancer cells are isolating themselves in my spleen and not effecting my bone marrow at all, which might lead to a splenectomy. There is a chance they aren’t isolating in my spleen and are effecting my bone marrow, which might lead to more chemo. There is a chance (albeit probably a much smaller chance than the other options) that a stem cell transplant is in my foreseeable future. This option is in the picture solely because it is the only way (right now) to get rid of the cancer completely. A splenectomy, chemo, and most other treatments are simply temporary solutions for a cancer that will likely keep coming back. Take the spleen out and the cancer says “fine, I’ll go back to the bone marrow.” Go through chemo and the cancer says “you clearly didn’t learn the first time that I’ll come back when the chemo is gone.” If I don’t get rid of all of it, I’m putting band-aids on it only to buy me a few years’ time before I have to change out the band-aid again.

Now if you do research, you’ll see that there’s only about a 42-48% chance of “relapse” with hairy cell leukemia. The thing is that I was never able to reach full remission. I reached “refractory leukemia” or a partial remission where there are still cells in my bone marrow but they aren’t active. As long as there are still cells that the chemo isn’t killing off, it will likely come back because I’m young and have so many years left to thrive, but also so many years for it to keep returning.

WELL. There’s nothing like welcoming everyone back to the blog than to write a novel! It’s my favorite past time. So cancer pushed us back a few steps as it so often likes to do, but this isn’t uncharted territory. This isn’t a new path. This isn’t somewhere I haven’t been before. I stood in front of cancer and stared it down until it surrendered last time. There’s nothing stopping me from doing it again.

{Romans 15:4 NIV}

Monday: July 9, 2018

We’re over halfway through 2018 and I haven’t so much as given y’all a peek into my life. Let’s start by giving cancer the spotlight first, as usual. I met with my oncologist just a few days ago as part of my 6 month check-up. No worries, no concerns, and no surprises. Dr. Hachem did give me a nice, lengthy list of shots that I need to get – a couple of those being pneumonia shots that normal people don’t get until they’re 65, of course. It also turns out that, even though we assumed otherwise, my spleen likely didn’t go back to normal size after all the treatments. If you remember, my spleen was 3x bigger than it was supposed to be when everything first started. We assumed after chemo and Rituximab that it would just shrink and go back to normal. Apparently (and I might have understood this wrong, so don’t hold me to it) because the treatments didn’t kill off ALL of the cancer, my spleen is likely still a little bigger than it’s supposed to be. With that revelation, I had an ultra sound done to put the mystery of the size of my spleen to rest. We’re still waiting on results. In other news, I asked whether there were plans for more biopsies in the future or if I could rest assured that I didn’t have to endure one anytime soon. I was told a biopsy will only happen if and when my blood counts start to drop, symptoms emerge, or things just start going awry. News to me was that there’s a specific type of blood test that can be done to tell us everything we need to know about the cancer’s current situation in my blood. This test was usually done on the extracted bone marrow from the biopsies. While they had to do biopsies for other reasons as well, the test was incorporated into the biopsy and taken care of there. Now that I have minimal traces of cancer and there’s no reason to go digging around my hip bone, the blood test is sufficient. This more in-depth blood test will likely happen next time I see Dr. Hachem in January – if not sooner. Aside from these minor eye-openers, everything on the cancer front is pretty calm and steady.

In what an MRI already determined is non-cancer news, I’ve managed to stifle my headaches for the time being. I got the infamous “migraine piercing” AKA the daith piercing. A daith piercing is a piercing located in the innermost cartilage fold of the ear. It helps to prevent migraines and headaches because it is a piercing that attempts to replicate acupuncture. The “belief” is that wearing an earring in your daith provides constant compression to an acupuncture pressure point in your ear which can apparently alleviate pain. None of this is confirmed, but go ahead and ask me how many headaches I’ve had since I got it. A whopping two. Migraines weren’t/aren’t a common thing for me, but headaches are. While I’ve only had a few migraines in the recent years, it was pretty rare that I ever went a day without a single headache. And I’ve only had two in almost three weeks – even though one of those was the day after the piercing and it was likely just from the pain of the new piercing.

Since I haven’t written as a post-grad yet (a week after graduation doesn’t count unless you’re the alumni association that begs for money the second you walk across the stage), I guess I can brief on that. I’m in full swing with my position as a RAM engineer at AMRDEC. I’ve actually just transitioned to the Cargo Program Management Office (Chinook project office) with the same responsibilities as before and then some. I really like it. Helicopters – especially the Chinook – are massive and consistently in use throughout the Army so there’s never a shortage on things to learn or components to analyze. There’s a lot of exciting news and work with the Block II CH-47F and a ton of opportunities for really cool travel. It’s all mostly right up my alley.

My circle of people that I spend most of my time with has changed a good bit since moving back to Huntsville and meeting new people, so the cancer bomb has been dropped a few times unexpectedly. I forget things like asking for headache medicine and having to clarify that “I can’t take blood-thinners” triggers questions. Or just this week having to tell my boss that I’ll be late for work because “my oncologist ordered an ultra sound”, only to realize I haven’t brought up the fact that I have an oncologist yet. The reactions never change and everybody’s instinct is to go directly to pity and sympathy – which I’ve gotten more and more accustomed to. But I have to say, it’s pretty nice to keep growing my little circle of support because where on Earth would I be without my people – the new and the old?!

{Psalm 29:11 NIV}

Friday: December 22, 2017

Mama, I made it.

I’m officially an Auburn Alum now. I finally graduated last week and got to say farewell to Auburn University. I loved Auburn… most of the time. Of course, right in the heart of my college experience (two years ago tomorrow), everything changed. Because I can be a bit of a dramatic, there was a point during spring semester of 2016 that I literally thought graduation would never get here. Cancer was forcing me to take that spring semester off and it meant that graduation got pushed further away and was likely just never going to get here. Honestly, that was probably the lowest that my cancer ever got me. It wasn’t the chemo or the hospitalization. It was the fact that it took school away from me. Crazy, right? School symbolized a lot for me, though. It was where my friends were, where my future was, where my normal life was. At this point, I hadn’t told many people yet, so going back to Auburn meant I was leaving cancer in Huntsville. But, we all know, cancer didn’t like that plan so I withdrew from the semester and came home. That was the moment I really felt like cancer was winning. So I took the semester off, healed up, and trucked back down there for summer semester. Five semesters later, I finally made it. I finished college with a 3.49 GPA and a job waiting on me in January. I’ve accepted a position as a RAM (Reliability and Maintainability) engineer at AMRDEC (Aviation and Missile Research, Development, and Engineering Center) on Redstone Arsenal in Huntsville. I’m really excited for this opportunity to do some really cool work for a really great company.

As far as checkups go, I saw my “new” oncologist a couple days ago. Per usual, everything looks good. In his words exactly, “we’re not unhappy at all with the way things look.” Of course, dad had to go and ask the question that we all really knew the answer to but didn’t want to hear. “At this point, is it a matter of ‘when’ not ‘if’ it comes back?” Bingo. Yep. As if it hasn’t been beat into my head enough times, I’m a young person with an old person’s disease. When you’re 70+ years old with this disease, its high probability of relapse may not be so significant. Because it could take decades before it relapses. Well, I was 21 when I got diagnosed so I likely have plenty of decades for cancer to come back. Which sucks. But the number of decades that I have to wait for cancer is also the number of decades that doctors and scientists have to develop new medicines, new treatments, and new answers. I still get my blood drawn every 3 months and see my doctor every 6 months. So, when it comes back, we should catch it early. Not to mention, it’s a slow-growing cancer. Catch it early, catch it quick, kill it, move on. Simple as that.

Happy Cancer-versary (tomorrow), Merry Christmas, and Happy New Year!

{Philippians 3:13-14 NIV}

Tuesday: October 31, 2017

Well, Happy Halloween! Let me start by saying that I realize I never gave an update about how the MRI of my brain went. Good news: my brain is certainly still there and doing just fine. I had some allergy buildup but that was it. Everything looked good. Which is great news, as far as my health is concerned. Maybe not so great news as far as my headaches are concerned. But that’s a different story.

I did have my blood drawn a couple weeks ago as a sort of “check-up” and basically to make sure I was okay with not seeing my oncologist at home until December. Everything looked great! My platelets are still “low”, of course, but “high” for me (around 113,000). Which is confusing still. My white blood cells took a little bit of a hit but considering the weird weather that Alabama has and the flare-up of my allergies with this weather, it really doesn’t surprise me. So overall, things look good and I’m in the clear until December!

In other news, I’m about a month and a half away from graduating college. I’ve ordered my cap and gown, ordered announcements, and could not be any more excited for my extended family to come see me graduate. I’ve been on several interviews, received a few job offers, and can finally start to see the light at the end of the tunnel. Now I know to a lot of people, graduation isn’t even that big of a deal. I can’t even count the number of times I’ve heard “I don’t even want to walk at graduation, but my mom is making me”. And this surprises me on so many levels. I can’t wait to walk at graduation. I know I’m not alone in saying that my time in college has been anything but the normal college experience, so I can’t be the only one that feels like this graduation day has seemed so far away for so many years. But it’s finally here. And you’ll just have to excuse how excited I am about it. It’s like I’m getting to close the “cancer” chapter of my life and open up a whole new chapter that isn’t centered around cancer and how I’m going to beat it and how it took away so much time from me. It’ll be centered around who I am without cancer; who I am now that I stopped surrendering to cancer and cancer started surrendering to me.

{Matthew 16:26-27 NIV}

Just one more final note. It’s been just over a month since the brightest smile I’ve ever seen was taken from us. But no matter how much time goes by, we will all love you and miss you forever, Connor.

Wednesday: July 19, 2017

It’s been exactly 3 months since I sat down to write, and I feel like so much has happened since then. So excuse me if this gets a little lengthy.

I had my checkup yesterday and everything went pretty well. My blood counts are all normal – except of course my platelets, but those were in my new “normal” range at least. Things are going well enough that there’s no talk of treatments, drugs, or even biopsies in my near future. Until (and if) my blood counts begin to drop or new symptoms emerge, I just get to pretend that I lead a normal cancer-free life….with a few doctor visits for checkups every now and then. The only hiccup is that I will be having an MRI of my brain done in a couple weeks. “What for? To see if it’s there?” HAHA, I didn’t see that one coming. It’s mainly a precautionary thing to make sure these frequent headaches that I have aren’t cancer-related. Which I doubt they are. But better safe than sorry I always said.

Now that we’ve gotten through the checkup-results-update stage, let’s talk about the real bad news. I’ve seen 6 different oncologists since being diagnosed with cancer a year and a half ago. The very first one I met – and my main one for this year and a half – has been my favorite by a long shot. He’s been the one I’ve felt most comfortable with. He’s been the one I felt most taken care of by. He’s been the one that has helped me through this disease the most. So, almost inevitably, guess who’s moving to New York? You can imagine how upset I was. It’s an accomplishment when you find a doctor you don’t dread seeing and Dr. Younes made every cancer visit just a little bit easier. I’ve said it before and I’ll say it again: I have been unbelievably lucky to have Dr. Younes as my oncologist and I know his future patients will feel just the same. I couldn’t possibly find enough words to thank him for walking me through this sometimes confusing and frustrating, always intimidating journey. I will surely miss having him always ask if I can feel my enlarged spleen and always being a little bit of a bright spot in The Cancer Center of Huntsville.

In other news, I’m just a few weeks away from finishing my second to last semester of college. Now as someone who spent most of last year fighting cancer, you would think I would tough out everything else and not complain. Well, I am here to tell you today that you are wrong. The past couple months have been rough. Not cancer-related, but life-related. There’s that quote that says “sometimes you’re the windshield, sometimes you’re the bug”. Well, lately I’ve been the bug. School turned out to be much more demanding this semester than expected, especially as the weight of finding a career starts to press on you. And life has thrown a few curveballs that I haven’t fought off very well. It’s been a little bit of a struggle to keep chugging along. But I’ve had some encouraging moments of course: I made the Dean’s List for the first time in my college career and in my hardest semester, I made a few new friends, and most importantly I decisively found my way back to God. I strayed from the path for a while and found myself putting God on the back-burner – which probably relates directly to those curveballs that I was dealt. But I feel like my relationship is becoming stronger and stronger every day with God since I’ve found myself delving back into His grace. And what a promising feeling it is when you find your way back to the cross. I would strongly suggest you guys try it out, too.

{Zechariah 1:3 NIV}

Wednesday: April 19, 2017

I am really awful at the whole “blogging on-time” concept.

Having check-ups 3 months apart, you would think that in that time period I would have more to write about than I currently do. I went to Alexander City last Tuesday to have my blood drawn and that was basically all that this “check-up” consisted of. The lab technician took my blood, showed it to my oncologist, came back and said “Dr. Sheffield said it looks great, you’re free to go!” I spent more time in the waiting room than I actually did on my appointment. But I guess that’s not such a bad thing. It’s always good to hear that my blood counts look good after repeatedly hearing how bad they looked a year ago. My white blood cells have reached a new milestone in finding themselves above 5.0 for the first time. My platelets are still normal – remembering my “new normal” is around 100,000. And everything else still looks good, as well! Now I’m doctor-free for 3 more months…….. and that is the gist of the update.

I usually try to have something else to write about when my check-ups are so simple and short, but I’m drawing a blank this week. I guess I could at least mention that a couple weeks ago, I registered for my last two semesters as a college student (summer and fall). Which also means that I officially registered for graduation in December. Call me crazy for being ready to get out of college, but what an undeniably amazing feeling to see a light at the end of the tunnel. Especially one that you were starting to think would never actually get within reach. It’s a good feeling when you get to accomplish things that felt like were never going to get accomplished. Next on my list, you might ask? Getting rid of cancer once and for all.

{Proverbs 15:30 NIV}