I wanted to write a quick update since I chose to share about my recent health concerns here.
Too Soon? 🙂
I got my MRI results today and the words that continue to ring in my ears are “it is definitely NOT cancer”. It has been 1 month since my bone scan showed an area of increased activity and an xray confirmed there was definitely something in the bone. They were focused on a part of my hip that had been hurting for over a year but I had dismissed thinking it was tendonitis from running. It was difficult to calm the anxiety during the day and sleep became almost impossible. Cancer patients call it “Scanxiety” because we’ve already been on the receiving end of bad news. Often when we go for scans and wait for results we relive the trauma of the original diagnosis…
the way it felt when the earth dropped out from beneath our feet…
how time seemed like it was moving at warp speed and standing still in the same moment…
how we feel our dreams and plans for the future evaporate in an instant. Not because the disease will ultimately be fatal but because we are forced into an unexpected battle and immediately focus on the near term threat…
how even though we felt perfectly healthy a Dr is telling us we are sick and in the end the treatment will make us sick…
because we know that with this beast of cancer we are never really free.
It became an act of will to keep my mind from constantly wandering through all the scenarios and wondering whether I will re enter an active cancer treatment with chemo and radiation. The 5,000 miles that separate me from my family felt like an insurmountable chasm and at a certain moment the waiting here was too intense that I booked a last minute trip to Seattle. These past few weeks have been overwhelming.
But today my oncologist told me that the results of the MRI were a “Synoviale inclusiecyste” (a certain kind of cyst – this is where the Dutch/English thing can get a bit tricky and I need to do more research). My onc admitted that this was not her area of expertise and proceeded to call some orthopedic surgeons to see what it was exactly and what I should do next. It took a few phone calls and some persistent questions on her part but we reached a level of information I am comfortable with. An orthopedic surgeon looked at the MRI while she was on the phone and also confirmed it was benign and suggested I schedule a consultation with the “hip experts” for how to proceed.
So that is what I will do…in the next few weeks I will meet with a “hip expert” to discuss my options. The most common treatment paths are letting it go and seeing if time will take care of it or surgery. This saga is not over but I am much more comfortable waiting knowing that it is something benign and that it has nothing to do with the breast cancer. Deep breath out.
Someday soon I might be up for cautiously celebrating but right now I just feel like I need a nap.
I just got back from the hospital and it looks like I am good for another year. Phew!
Thank you everyone for your thoughts and prayers.
It’s been three weeks exactly since my final chemo infusion. I woke up thankful that I didn’t have to prepare my “chemo food” or worry about the IV and side effects. It feels good to know that every day I will get a little bit stronger and I don’t have another infusion coming to knock me back down.
I spent the morning getting some things done around the house and putting things back in order. My plan was to work around the house in the morning, run some errands in town in the afternoon, write this blog post…then go to my first radiation appointment at 6:00 pm. Things were running along smoothly. It was a beautiful afternoon here in Groningen so I took a longer walk through the center and the park enjoying the sun and trees. I made it back to the house around 3:50 tired and hot, grabbed glass of water and sat down to relax and write for a couple hours. I checked my phone just to verify the time of the appointment…Oh crap! My appointment was at 16:10!! (dang that 24 hour clock) My brain had turned that into 6:10 pm when in fact it was 4:10 pm…in 20 minutes. Good thing I checked and good thing the hospital is close. So much for relaxing! I threw my shoes on grabbed my bag and was off for my date with a snorkel.
The appointment didn’t take long…10 minutes getting everything set up and aligned and 1 minute of actual radiation. Here’s a photo of the set up Jonathan took when I was practicing.
It’s quite involved. Nose plugged…weird mirror glasses so I can see the screen the nice lady is looking at…panic/control button in my left hand…and the snorkel. It’s not that bad. I actually spend more time thinking about the sensors they use to monitor my breathing and the code behind LabVIEW program controlling it all. Here’s to the next 6 weeks. 🙂
Well folks the time has come…number 6. I have my last heavy duty chemo infusion in my treatment plan tomorrow. It has managed to come fast and slow at the same time and, to be honest, I have mixed feelings about it. Don’t get me wrong I am SO excited to not have poison pumped through my body every three weeks. I am ready to de fog my brain and re grow my hair :-). But it is odd to get to the end and wonder if I accomplished anything with this challenging process. Emotionally and spiritually I have grown in profound ways but I will never know if the chemo actually did anything. I just get to the end, walk out the door and wait…hopefully wait years without any sign of the cancer returning.
When I started on this cancer journey it seemed like running a half marathon/marathon was a good metaphor for the process. I would be tested physically and mentally and would have to rely on mental fortitude to push to the finish. There are many similarities but where the comparison breaks down for me is at the “finish”. Tomorrow I will be done (minus the side effects) with the tough chemo but my journey with cancer will continue in a different capacity. There is not an “I made it” moment and now I get to leave this all behind me. I get to leave this particular physical challenge behind me but the race is not done. I am now thinking a better metaphor is a long distance hike and I have just crested a summit but the trail continues before me. There will be times that are more physically demanding and others I get to stroll along enjoying the scenery. However, I am now on a cancer path and it will forever influence me.
But, that wont stop me from having one heck of a celebration after cresting this “chemo peak”. After all this I’ve learned you have to party whenever you have an excuse. 🙂
Chemo #4 is in the books and I just now feel like I am coming out of the post infusion fog. It has become quite a familiar cycle at this point. I go in for my treatment on Thursday (IV in on the first time again! I am so thankful) and then spend the next few days in a puddle on my couch passing my time with reading, TV and whatnot. My cheeks and lips get tingly and numb and I can even have some vision problems…but it always goes away. It is difficult to drink a lot of water but I force myself. My brain feels like it’s been removed from my head and there are times when trying to remember a word feels like I am pulling it from an endless abyss. I have a regiment of medicine I need to take at certain times on certain days…it was overwhelming at first but now is automatic and I can apparently even do it without a brain. 🙂
This was my weekend but there always comes a moment when I can feel the side effects shifting. When I feel my energy returning and like I’m coming back to the land of the living. Today I passed that moment and I can feel the #4 post chemo dip moving behind me. I still have side effects but they become less severe the further I get from the infusion. I am thankful that nausea still has not been a problem and that I have the space to be a chemo-zombie for a few days. I have so much respect for people who go through this with major family and life obligations. I can tell there is an accumulation effect from the treatments because the “dip” is a bit longer and heavier every time. I hate this process but I will concentrate on the fact that I have 2 weeks until my next round and only 2 more rounds until I am DONE!
Well…it appears to be that time again. I’m never quite ready for it. I actually almost missed my blood draw this morning because my brain hasn’t quite accepted the fact that I get my 4th chemo infusion tomorrow. This cycle has gone by extremely fast and I was beginning to feel fully like myself. It’s hard to face the fact that my body will get kicked again and I then get to wait and see how it will rebound over the next few weeks. But it’s the 4th infusion out of 6 so after tomorrow only 2 more to go!! 🙂
We were very fortunate to have some visitors last week. If you follow the blog you saw theurgent appeal for my uncle’s bag. It hasn’t shown up yet but we are still praying for a miracle…it’s a lot to lose. But outside the unfortunate beginning to their trip we really had a wonderful time and it was great to see them. On top of their visit my good friend Miciah booked a last minute trip to see us also. She and I took a quick jaunt down to the Rhine valley in Germany for a couple days. We wandered through quaint German villages and were overwhelmed by the number of castles in this region. The weather was decent enough
Jen and Miciah in Utrecht
and it was so good for my spirit to hang out with her and get out of town. On our way home we stopped by Utrecht and stayed with another good friend, Jen, in Amsterdam. It was an excellent weekend. I felt strong and like myself again…I think that’s why it’s especially hard to go in for the next infusion tomorrow. But this will pass.
Also, in case you’re interested my chemo menu for tomorrow (Thanks Casey Evans for the Facebook inspiration 🙂 ):
Avocado Egg Salad wraps and homemade strawberry rhubarb crumble
Click here for the: Avocado Egg Salad recipe
Low Sugar Strawberry Rhubarb Crumble recipe
I modified the egg salad a little bit with some lemon juice and paprika but it is excellent. I’ll put it in a whole wheat wrap for a healthy chemo treat.
Welp the 3rd infusion is done and behind me, got the IV on the first go…Yes!…now comes the role of the side effects dice. Fingers crossed for a big winner. 🙂 This is a post I was working on for a bit and thought it was as good a time as any to send it out to the internet.
Have you ever heard the quote… “It’s about the journey, not the destination?” I understand the idea but honestly I really hate it because it flies against my natural mode of operation. I don’t love the journey for the sake of being on a journey. Just dancing through life soaking up the beautiful moments, I am focused on the goal. What am I working towards? And will I like it when I get there? I enjoy the feeling of accomplishment and checking something off the list. I can remember being on a hike in the beautiful cascade mountains and stopping myself ½ way up amazed at what I was focused on for the first 1.5 hours. My thoughts shifted between… “How far have I gone?”… “How far do I have left to go?” … “How are my legs/knees doing?” … “Do I think they’ll make it?”… I was focused on where I put my feet but never looked up from the trail long enough to enjoy the reason why I was hiking in the first place. These are the moments when I know that I need to make more of an effort to be present in the journey because I don’t want to miss it, but it doesn’t happen naturally for me. I have to choose.
I know that part of the reason why I can’t just abandon myself to the process is a fear that it won’t turn out the way I want. Again, I can feel this most often when I am watching a sporting match or reading a book. I have friends that will religiously avoid Facebook or the internet if they’ve missed a match or TV show so they don’t run the risk of “spoilers”. Those little bits of information that give away the ending and ruin the surprise. I will actively seek them so I know whether it is worth starting the journey in the first place. Jonathan laughs at me when I read because if there are characters I am invested in and the story is intense I will flip to the end and skim the pages for the names I want to make it. I don’t actually want to know what the ending is but I want to know that the characters I care about will make it. Confession: I totally did this with Harry Potter. I want to know that I am free to enjoy their story because in the end it all works out.
Now enter the kindle… I really enjoy the kindle. I wasn’t sure if I would miss holding a real book but it’s been great. The e-ink. The fact that I can carry 1400 books everywhere (not that I do…but I can). I can purchase and download a book in seconds, which is nice in a country where it can be difficult to get the books you want in English. Really, I am a huge promoter of this little device. But the one thing it has changed for me…I can’t skip to the end. It’s a pain in the butt on this digital wonder to get to the end of the book and back to the same spot. So, I’m forced to either 1. Not read anymore or 2. Open myself up for the journey and risk the end not being what I want. I have chosen to keep reading.
Of course this is all a big metaphor for my life right now. I want the last few pages. I want to know that this life I have turns out the way I want. I want to know how cancer plays itself out in the future. I want to know whether relationships are worth the investment. But these pages are not there to know and I am focusing on trying to embrace the journey.