In January 2015, I was diagnosed with Stage III Hodgkin's Lymphoma. This is a blog about my battle. I'm going to turn into a blog about me kicking ass and winning.
Hello! I'm still here! It's been a long while, I know. Life has gone back to normal!
A year ago, I definitely couldn't see what life would be like now. It's the 1 year anniversary of the end of treatment (radiation, to be specific)! I've had 2 PET scans since January and they've both looked very good. The clump of scar tissue has shrunk even further and there has been no increase in uptake indicating badness. My oncologist won't use the words "cancer free" but he tells me it's a great thing that there's been no increase in activity. My next PET is sometime in December. I'm going to a 6-month cycle for scans! I see my oncologist every 3 months. I still have my port in.. Just in case. That surgery to put it in was a bitch (my phone keeps autocorrecting "bitch" to "bit challenging". Stahp, phone) and I still have that fear in the back of my mind about recurrence. It's been no bother and makes getting my biannual Zometa infusion a snap. I do have to get it flushed every 6 weeks but that takes the nurses a literal minute.
But really, I hardly think of cancer now. My life is filled with my husband, my family, my friends and work. Oh, and Luke Cage. I've been incredibly lucky and loved and my life is awesome.
I have attached of pic of me and hubby and we are incapable of taking normal pics.
It's been exactly 1 year since I was officially diagnosed with Hodgkin's Lymphoma. It's wild thinking about all the things I've done since that day.
Over the last year, I've had:
3 cardiologist visits and heart echos
4 PET scans
11 Lupron, Neulasta, and Neupogen shots (I've lost count of all the fertility meds I had to inject into my belly fat)
12 ABVD chemo infusions + all the supporting meds
20 radiation treatments
~20 oncologist visits
~42 blood tests/CBCs done for fertility and blood count monitoring
And I feel like I got off easy knowing that other cancer treatments require daily infusions or continuous round-the-clock infusions. My oncologist visits have tapered off since I stopped chemo - I see him every other month now. I'm still getting monthly Zometa infusions (I think I've got 3 more to go) to help reduce calcium leaving my bones. I've got another PET scan coming up in 3 months. A year ago, I was so scared with the cancer diagnosis but took comfort in my both my cardiothoracic surgeon and oncologist's confidence in my treatment. Today, I'm so relieved, happy, grateful that I made it through treatment and all the shitty side effects. I stood in my closet this morning while getting ready for work taking deep breaths and just being SO HAPPY I could do that without pain. A year ago, deep breaths made gurgling sounds (phlegm?) and sent me into bad coughing fits because that stupid tumor Betty was in the way of my left lung. I was popping pain pills like candy (no but seriously, narcotics addiction crossed my mind a few times, but I'm clean, guys). These days, the only pills I pop are allergy pills. Fuck cedar. :( I will beat cancer but I will never beat cedar pollen.
Happy 2016 everyone! I hope your holidays were awesome, just awesome. It feels like the beginning of a 'new chapter' in my life (so cliche)!
Our Boston trip in December was so much fun. We walked the Freedom Trail over the course of 2 days and took almost every tour on it. We ate SO MANY lobster rolls! We saw so many historic sights and I (re)learned a ton of American history. The full album of pics is HERE! They're good, I plomise. Here's a sneak peak!
Walking to Bunker Hill
One of many many lobster rolls
Me and an ass (not Damien)
In the new Massachusetts State House
Signing our names onto copper sheets to be put onto the USS Constitution
Throwing some tea into the Boston harbor
Walking around the MIT campus
Ice cream at Toscanini's
We spent some time in Dallas during the weekend of my brother's graduation (you guys, he finally graduated!) and also around Christmas. It was great to see family and celebrate!
Happy Birthday!
Christmas!
Fam
Congrats Kevin :)
And we went to our company holiday party too. We did so much in December.. it was all that pent up energy from not doing anything but cancer things for 11/12ths of 2015. January is so tame by comparison!
Studio 54 holiday partaaaay
I saw my oncologist between all the activities above and got good news about my last PET scan in November. The mass has shrunk some more!! and the radioactive uptake has decreased!! The mass in my chest is still being a little bitch but I don't have any cancerous activity below my diaphragm anymore. I also had some uptake in my esophagus indicative of reflux (oops?). My next PET is in April.
Honestly, I haven't thought much of this whole cancer thing in the last month. It doesn't really cross my mind since life has been so distracting. And then David Bowie, Alan Rickman, and Rene Angelil (Celine Dion's husband) die of cancer and it's all over the press and social media. It's a jolt back to reality. I'm so so so lucky.
So lucky.
I haven't quite kicked cancer's ass yet but I sure feel like I have! I started the Couch to 5k program with my friend Craig and he's been keeping me honest. I got to week 4 and then started slacking due to holidays (although I did run at the hotel gym in Boston and on my parents' treadmill!) and due to an ingrown toenail (boo). This is apparently a common side effect of chemo nails. My nails darkened and thickened due to chemo. 6 months post-chemo, the dark chemo parts are STILL growing out. I saw a podiatrist and got the ingrown portion removed. I was so squeamish and couldn't bear to see him do whatever he did to my toe. I thought giving myself 3-4 shots in the stomach for fertility meds was bad... but this was worse. UGH anesthesia shots in the toe SUCK. So C25K is on hold for now.. hopefully for not much longer.
My hair is growing out nicely! It's more salt and pepper now but whoooo cares. I do want to dye it though but haven't found a color that appeals to me.
Today is the 1 year anniversary of my fine need biopsy. Happy biopsy-versary to me? Jan 7 was the 1 year anniversary of when I found out I had a mass in my chest. I remember sitting in the left-turn bay of Braker Ln waiting to turn left onto Jollyville after leaving the doctor's office to return to work after I had had a chest x-ray and CT scan back-to-back. My nurse called and said they were going to schedule me for a biospy consultation. I pull into the parking lot of Great Hill Baptist Church and park so I could talk and process the info. Everytime I make the same turn and pass that parking lot, I always replay the sequence of events. I replay texting Damien to tell him. I just didn't understand the gravity then. It's so surreal looking back.
I went through so much in 2015. It's overwhelming to reflect back on it because I just want to move forward. 2016 is going to be so much better because how can it not be!?! Damien and I are planning our honeymoon and our wedding celebration (but honeymoon first, because...priorities). We're also coming up on 1 year of mawwiage! Time flies when you're happy.
Today, I'm thankful for modern medicine and what's it has done for me in the last 11 months. I'm thankful for my husband who's been by my side through the whole cancer shittiness and continues to be my mind reader and best friend. I'm thankful for my family who have spent so much time making me comfortable through all this. I'm grateful for my in-laws who check up on me and send frequent words of encouragement. I'm thankful for my friends who think of me, support me with their messages, and allow me to do normal people things with them. I'm thankful that treatment is over and life is resuming!
I had my post-treatment PET/CT scan this past Monday 11/23. This scan comes 4 months after the end of chemo (7/24) and 1.5 months after the end of radiation (10/5). I'm not sure what to really expect out of this. Obviously I'm hoping for a clean scan, but my radiation oncologist had said that "it takes time for the radiation to work." what does that mean?! I asked him what he thought the PET scan might show and he dodged the question. I mean, he's not a psychic so I get why he did that. My medical oncologist wanted a scan a month after radiation ended, so that's what we did. I went through the same old spiel with the radioactive tracer and the contrast being injected in me. I could actually feel the contrast flow through my body. Extremely weird. This is the stuff that makes me flush and feel warm. It started in the back of my throat like I had ingested hot water. Then my belly got hot and the heat went through my arms to my hands and fingers. It flowed to my pelvis and made me feel like I had wet myself. I instinctly tried to reach down to make sure I hadn't actually peed on myself but they had strapped my arms down hah. Then the heat went down my legs and into my soles. It was like a slow moving hot flash that lasted 30 seconds. I of course fell asleep inside the scanner because I was in there for 30 minutes and the whirring noise is so comforting. I even woke myself up a few times snoring.
We won't get results for another 1.5 weeks because we'll be going on vacation!!
We're going to Boston this next week to do touristy things and dive into history. It'll be COLD. Ever since I lost all that weight (30 lbs) due to cancer and nausea from fertility treatments, I've been so susceptible to shivering and being flat out miserable in the cold. However, I've gained 25 of those pounds back, so I might be in better shape... Who knows. I'm still preparing for extreme cold (which will be like 40 degrees really). It'll be our first vacation in over a year so we're really excited to get away.
The last part (LAST PART!!) of my treatment was daily radiation at the cancer center in the hospital. I went everyday for 2 weeks from 9/22 to 10/5. Radiation was intimidating at first. I go back into a huge room with the machine, take off my shirt and bra, drape a pillow case (yes, a teeny pillow case) over myself and get into the table. The techs move the table around and align me with the green lasers that great a grid on the table. They then leave the room and close a thick heavy door and I'm left alone in that giant room. The machine comes to life and starts by taking an x-ray of my chest left-to-right and top-to-bottom. The radiation arm then starts to move to my left side. It starts radiation and makes a buzzing sound while it's radiating me. It radiates for 10-30 seconds, rotates 15 degrees clockwise, continues radiating in that new positions, and keeps doing that until it's in aiming at my chest from the top of me. It takes less than 10 minutes but it feels like an hour because I'm in this awkward position staring at the most boring set of ceiling tiles. I got over the intimidation factor after about 3 days. Those 2 weeks did fly by!
I actually started going back to work in the office the week before radiation started! It was such a big step and change for me to actually see and interact with people outside of the cancer treatment environment. There was about a month between the end of chemo and going back to work since I was waiting for my blood counts to recover and the fatigue to go away. I was having such bad anxiety about going back to work in that month. I would wake up in the middle of the night worrying about falling behind and not being effective at work.. even though I had been working (albeit at a much lower productivity level) the entire time I was going through chemo. But the anxiety went away as soon as I started going back to the office and getting things done. I left everyday for radiation and came back to work afterwards. I barely had any side effects from radiation - a little fatigue but not enough to make me stay home.
I'm almost 3 weeks out from the end of radiation now and the fatigue has gone away. I don't really remember what not being tired or fatigued really feels like since I had been feeling that since mid-2014, so I think I'm not fatigued.. But we'll see as I continue to get better! I have some minor darkness on my chest where I was radiated. All in all, radiation was nothing compared to chemo.
So treatment is done! I saw both my radiation and medical oncologists this week and they are pleased with the treatment and how I took it. However, I won't have a PET scan scheduled until the middle of November. That's more waiting, ugh. I don't think there's any cancer left in me other than the scar tissue of my mass, but I don't know for sure for another month.
I celebrated my 30th birthday at the end of August. It was a great celebration with my family and really great friends. I still can't do a mile running and I'm wasn't quite cancer-free then but I still celebrated the hell out of my birthday. Life is getting back to normal. My hair is growing like crazy and I keep meaning to get a haircut. It's so nice!
HELLO! So I really sucked at updating this past month and the title of this blog post totally ruined the PET scan results, so you can stop reading here if you're mad at me and have vowed to never read another post again. I understand. Bye, dear reader.
:'(
OKAY, now that my fake friends have left.. How are you guys!? I've had a pretty eventful August. Let me tell you all about it.
Post-chemo PET Scan
I had a PET scan on August 4th to see how much effect chemo had on the cancer in my lymph nodes and in the mass. Instead of getting the PET scan at the place I had gone to for my previous 2 scans (an external radiology place), I went to a branch of my cancer center that had its own PET scan machine. I asked the appointment people about the switch-up and they gave me some answer about getting results back faster (within 48 hours) from their own radiology people... even though the external place takes about 48 hours anyway to get a report written up.
Anyway, I got what I can only surmise to be a newbie nurse accessing my port for the radioactive tracer injection. Prior to this, my port was accessed every 2 weeks by some really skilled nurses. I mean, there's no avoiding the big poke of the Huber needle, but they minimized the pain and bruising. My experience with this new nurse was a comedy of errors. She vocalized everything she was going to do and moved extremely slowly to the point that I could FEEL the needle sliding. cringe. If you thought that was bad, she had to access my port twice. The first time, she stuck my port at the wrong angle and there was no blood return. I think it's quite a feat to stick a needle into a port that is connected directly to a vein and not get any blood out. She pulled out the Huber needle and I immediately started bleeding from where she had stuck me. I was a little shocked.. and so was she. So here I am with blood dripping down my chest and she was unprepared for the situation. I happened to be holding gauze to my finger where I was pricked for a glucose test and had to stop my own bleeding with that. She then re-accessed my port but not before popping a syringe of saline all over my pants (she was really excited to be doing this). After about 25 minutes of this fumbling, my port was finally accessed and ready to be injected with radioactive tracer. The injection of the tracer took about 2 minutes. hah. That whole access ordeal left me with 2 bruises at my port area and some residual pain (maybe it was in head?).
After that, I had a newfound appreciation for the chemo nurses who were able to access in under 5 minutes with little pain. SO THANKFUL. I emailed them and thanked them. And I thanked them profusely the next time I saw them. omg thank you. One of the nurses offered to access my port a day in advance of my next PET scan so I wouldn't have to have a rando doing it. <3 Enough railing on that other nurse.. the radiology tech was super good though.
I saw my medical oncologist about a week after the PET scan. My expectations about my results were...neutral. I didn't think chemo had taken care of all the cancerous activity and my oncologist had prepped us for that. When we saw him, he said there was still some activity (surprise) and he was going to forward my case to a radiation oncologist to take another look. The radiation oncologist was going to decide if I needed radiation and for how long. He said I had about the best result coming out of chemo that he could have hoped for because all my lymph nodes looked clean. I had mixed feelings - I kept telling myself that this was good news because no more cancer in the lymph nodes! But I'm still not done. At that point, I was 2.5 weeks out of chemo and my energy level was good. My white blood count was still low so I was still avoiding people. I was ready to resume normal activities, but this radiation thing was still looming over me. It's hard to get excited about results when this cancer thing was still not over.
I finally had a consultation with a radiation oncologist on August 20th. He actually pulled up my PET scan results from back in January when I was diagnosed and walked us through the different views of the bulky mass in my chest and what he thought about it. It was the first time I had seen the PET scan from January and it was slightly jarring, but so fascinating. I'm not a biology person (I got my first B in high school in biology and I still hold a grudge) and I know embarrassingly little about human physiology and anatomy (although dealing with cancer has taught me a great deal). I had the physical dimensions of the mass from the PET scan written reports but I could not and had not pictured it inside my body. After seeing the scans, all I could think about was how could I let this thing grow inside of me for so long and why did I ignore and downplay my symptoms?? To the layperson (me), it looked like the the mass almost spanned front to back in my chest. NO WONDER I had breathing problems! Where the hell was my lung supposed to go!? As for the radioactive tracer "lighting up" the cancer mass, it was like the sun was in my chest. The radiation oncologist also pulled pulled up my interim PET scan from April to compare (this was the scan taken after 2 cycles of ABVD chemo) and the difference was stark. The mass had shrunk so much relative to January. The funny thing was that he did not have access to the PET scan from early August. You mean, I went to your in-house radiology department AND had the worst port access experience in the last 8 months and you still couldn't get my PET scan results into my medical record after 2 weeks!?!? I was still grateful that he took the time out to walk us through the scans and talk through my case with me. He said my case was a little unique since bulky masses in Hodgkins cases usually are more centered in the body, but mine was to the left a little. He ended talking to my medical oncologist about the whole case, looking at my recent scan, and recommending radiation (20 sessions). Since the mass is right behind my left breast, there was no getting out of radiating that. We discussed side effects - short term is fatigue. Long term side effects (which are really rare) are heart problems (I'm going to be monitored by a cardiologist with annual exams) and secondary cancers (such as breast cancer. I will probably be starting mammograms early). He assured me that the radiation was low dose and the risks were low.. relatively.
I had a radiation planning meeting the week after that on the day before my 30th birthday. The radiation planning meeting consisted of a CAT scan and drawing on my chest. The nurse wished me a happy early birthday and then asked me to take a pregnancy test. She hadn't "realized I was that young" and since I was of child-bearing age and about to get scanned, they had to be sure I wasn't pregnant. Hearing her say I was really young really put me in a weird state of mind for 10 minutes -- I'm sitting here while she tests my urine on my last day of being 29, hoping I'm not pregnant (even though I know I'm not because abstinence really does work and I have an IUD to prevent immaculate conception), and thinking I'm waaaaaaay too young for this shit. But I guess it's better that I'm young? I've got the energy and resilience to fight this... I guess. It's hard to see an upside to getting cancer at 29, but that's one of them!
I got CAT scanned and got 3 dots tattooed onto my chest - 1 on each of my sides at about boob level and 1 between my boobs. The dots are going to be used to plan where they radiate and then during actual radiation to line me up with the machine so they can radiate the same spot each and every time. Getting those 3 dots tattooed hurt like a bitch! I don't think I'm ever going to get a voluntary tattoo. I did not and have not taken a picture of those because they are the most uninteresting tattoos ever. The dots aren't even the same size and you can hardly tell they're there. I also got a "vac bag" body imprint made. That sounds cooler than it really is. It's this moldable cushion (cushion is a too strong a word since it was hard and uncomfortable) that the tech molded around my body by using a vacuum to suck the air of this bag of stuff that will hold me in place during radiation.
My last chemo was Friday 7/24. It started like any normal chemo day and ended with me ringing the giant bell that signals the end of chemo. I hugged all the nurses and techs and shed a few tears. I had seen these people every week for 6 months and now, abruptly, I'm done. It was/is surreal! I slept and played Borderlands Friday through Monday. It was rough though. I got a new low in feeling bad - it was the most tired I had ever been. I had 0 energy and just wanted to sleep nonstop. I finally became lucid Monday and realized I was done with chemo. Oh man, the emotions. I cried tears of joy. The whole chemo experience was so hard and I had made it through. I felt amazing. It definitely got really hard towards the end but I did it!!!
I have been slacking off in the walking/running department. The fatigue and dizziness lasted for a week after chemo so walking then out of the question. The rest of the time, I took it easy and just walked around the neighborhood. I'm not gonna make my goal of running a mile by my 30th birthday :( it's still a goal of mine but I realized I have to slowly rebuild. This experience has brought me lower than I imagined it would and I can't jump back in 100% yet. One day though! I will get back there.
I have a PET scan tomorrow to see the current state of Karen. Will update again when I know more!
