I was just listening the 80’s song…Here I Go Again by Whitesnake (nice rockin hair)…It starts out, “I don’t know where I’m going, but I sure know where I’ve been.” This chemo ground is not new in some ways and in other ways will be completely different. Does knowing about childbirth make it easier the second time, or do you just dread it more because you really know what it is? The song diverges from my path when it gets to the lyrics “here I go again on my own, going down the only path I’ve ever known.” I am not alone, so it should be “here we go again together,” but clearly that doesn’t rhyme as well. It’s a lonely trail going by yourself, but I have family, friends, and faith traveling along with me. Today when I walked into the chemo room, all my favorite nurses were there and a few old-timers too. My friend Izzie has been getting chemo there since 2012. One friend called, another brought me flowers, and another sent pictures of a bunch of my teacher friends waving “hi.” I never felt alone. I told someone that I feel like I have 10,000 hands holding me up and carrying me as I start back in chemotherapy. I couldn’t do it without YOU! (yes YOU!)
Each cycle of radiation or chemo is followed by the inevitable blood draw. It takes about a week for the CA 125 Ovarian Cancer marker to come back. Other blood markers are available in just a few days. Every time they take blood, I wait anxiously for the results. The last CA level blood marker was the harbinger of recurrence. Even “normal” values can cause fear if they double or triple for the previous draw. This go round, the hospital is using a new lab, so the numbers can’t be compared to previous values. There is no joy or heartbreak associated with this number; it’s simply a number. The plan, unless there is some anomaly is that I’ll start chemo next week. Happy to be down with radiation, but remembering the trek that was the last chemo journey. This time will be new drugs, which inevitably means new side effects. In the meantime…trying to get healthy and recommending these documentaries on #Netflix: Mortified Nation, Queen of Versailles, Girl Model, Russia’s Toughest Prisons, Fat Sick & Nearly Dead.
Do you remember The Flying Nun-a TV series in the late 60’s and early 70’s? Along with The Brady Bunch and The Partridge Family…and of course Gilligan’s Island, these made up the favorite TV shows of my youth. My sister-in-law took this picture of me getting set up for radiation and it brought back memories of Sally Field as Sister Bertille, the nun who could fly. (What you are seeing in this image is when they drape warm sheets all around so that you don’t freeze! They keep this room mighty chilly.) I promised my friend J. no belly shots, so you don’t get to see that. I know you’re disappointed. So, what are the tv shows that bring you back to childhood?
Time to make the chemo cocktail decision! First round chemotherapy for Ovarian Cancer was Carboplatin and Taxol delivered through an IV bag into a port located right below my collarbone (surgically implanted in 2012). A tumor assay (study) was conducted to determine how my tumor/cancer will best respond to the various chemo drugs currently used. Just like rum is better with Coke or made into a Mai Tai (clearly the Mai Tai is the better choice), the general consensus is that combining drugs is the most effective of destroying cancer. If you are feeling really nerdy, check out the Oceans study. For my recurrence, we are getting fancy. This time will be three drugs. Because I was in remission for 14 months (woot!) I am considered Platinum sensitive, which is a good thing. That means that for sure, I will get Carboplatin again. The 2nd drug is where we will have some choice. The choice is Doxil or Gemzar (Gemcitabine). The third drug (why are we stopping at 3…why not 4 or 5?) is Bevacizumab otherwise known as Avastin. As I research the various side effects, I was reminded of the 2013 movie Side Effects. The movie is somewhat of a dark psychological thriller about the rocky path that meds can induce. Every cancer patient has to make their own decision about what meds (or not) are the right choice. My doc has been in the business a long time, and I respect his advice, and more importantly, I believe that my best choice for living life is following this path. Our goal is NED (No Evidence of Disease) and PFS (Progression Free Survival)! I am motivated to kick this and get on with the business of living!
1. What’s the geographic center of the US?
2. If I tunnel through the earth, where would I be?
3. Side effects from 13 radiation treatments?
4. Time to travel to UH from Aloha stadium in traffic?
5. Who said, “Every great mistake has a halfway moment, a split second when it can be recalled and perhaps remedied”?
6. Who sings the lyrics, “Every new beginning comes from some other beginning’s end”?
Today marks crossing the halfway point of radiation! Side effects are mostly mild nausea and fatigue. When radiation ends, chemo begins. This patient is less than patient. Still have side effects from the surgical incision that keep cropping up. My fascia is not cooperating the healing process. Evidently, it has never had me as a teacher before. “Fasten your seat belts, it’s going to be a bumpy night.”
1. Lebanon, KS
2. check the map tunneling tool
3. nausea and fatigue
4. 45 minutes on average
5. Pearl S. Buck
6. Closing Time by Semisonic
I always go back to distance running when I think about my cancer journey. A long, long time ago, I ran track, and then for a time in my 20’s I tried/and successfully completed a triathlon. The route ahead of me is arduous and somewhat reminiscent of my younger training days. I have a total of 25 radiation treatments that will launch immediately into 4 months of chemotherapy (with a few weeks off for good behavior in July). So, what does it take to do an endurance event? First, the right state of mind. When my children were little I would read them a book called Those Can-Do Pigs. The message of the book is that there nothing that is impossible! When I teach Physics, I tell my students that we have so much information that it is almost impossible to cover it in our course, but that it can be done one step at a time. I tell them that we will eat that elephant one bite at a time….and we do (Refer to the man who ate an airplane). Your belief in your ability to finish is key! If you think you can’t, you can’t.
According to my daughter’s 1500 meter track coach, Coach Jimmy, you need to set the pace right off the blocks. As I am 8 radiation treatments into 25, I can say √…to that. My side effects at this point are some fatigue and nausea, similar to training days of the past but nothing unmanageable. In a cancer race….good nutrition, rest, and exercise are all part of the training process. Sounds easy, but not always so. It also helps to have some motivational quotes and faith to bolster your race. The hardest part in a triathlon (for me) was coming off the bike and then running. I love this quote…”Running after riding a bike is different from running on fresh legs. Prior activity makes you feel heavy-legged and uncoordinated when you start running.” My guess, and it is a guess at this point, that chemo directly after radiation is harder than just going directly at it. I have a bonus in that my doctors and chemo nurses are amazing! Plus, this is not my first time in the cancer race. Race experience in both traithlons and chemotherapy is a bonus. Just like in traithlons, it pays to have a race strategy! I am pretty sure Coach Jimmy also said to end strong! That’s the plan!
This week began my journey into radiation. In 2012, I had 16 rounds of chemotherapy (Carboplatin and Taxol) to “cure” the first round of Ovarian Cancer, but I am at it again. Four weeks ago I had surgery to remove a recurrence of Ovarian Cancer in a Periaortic lymph node (let me Google that for you-Periaortic ) My doctor feels like the radiation is important because of this lymph node’s proximity to major vascular networks and would make for tricky future surgery if any cells remained. Following this, I’ll jump back into some more chemo (my old friend). The radiation part of this is the new aspect. Here are ten things I didn’t know before I started. (As I progress, I’ll give you “the rest of the story”)
1. Radiation uses high doses of radiation energy to kill rapidly dividing cells (cancer cells)! My dosage is 180 Centigrays per day. Total radiation dosage will be 4500 Centrigrays. (Rads are out-Centigrays are in) I feel like I am becoming a super hero ala Spider Man with each beam of energy from the linear accelerator! Just so you know, it doesn’t hurt while they do it!
2. Every area radiated has its own list of side effects I assumed radiation was radiation….not so. Preparation is also different for different areas. One of the most important lessons I have already learned is that radiation is different for different people! You may have an easy or tough time of it. Listen to other people’s experiences, but you are unique!!
3. Every radiation patient is unique! You get your own “simulation” prior to the initial radiation, so that doctors make a plan unique to you. You will receive individual tattoos-yes, permanent-that will mark where the machine will be aligned. I received 3 and each is the size of a Sharpie point). As you begin radiation, preparation and dosage will vary.
4. There is never ever parking in the “reserved” radiation spots…ever.
5. You should let the folks know if you have any side effects …they need to know! Evidently, there is an expectation of when side effects might occur, so if it happens too early…they should be informed.
6. The actual time of being zapped is only a couple of minutes. It takes a lot longer to get changed, get situated in the machine, align the marks and get set. My machine makes two compete arcs around my body.
7. This one is just for someone that asked me…Chemotherapy (for me) was infused through an IV over a period of several hours. Chemotherapy is systemic and Radiation is targeted.
8. You can still exercise while you get radiation, and chemotherapy too. Exercise is one of the great gifts to healing our bodies. Come on, if I can exercise, surely you can do it too! For me, prayer is the other gift!
9. Same thing for handicapped parking….don’t count on it.
10. Water, water, water. This, along with trying to eat healthy, are also critical during treatment. Plus, my sources inform me that Diet Coke does not count as water. Drink it up!
Photo below is the linear accelerator!
Yesterday marked my 45th check in to Tripler Army Medical Center (TAMC) on Foursquare. Surprisingly, I am not actually the mayor. Plenty of folks are in far dire circumstances than I am, and every time I go there, all the handicapped spots are full. My weekly trips to TAMC do feel somewhat like an arranged marriage. I didn’t really want it, but parts of it seems to be working out better than expected. I have heard other complain about military care, but in my case it is quite the opposite. Two successful cancer surgeries, and now radiation with state of the art machines. I have been blessed by wonderful doctors and nurses throughout this journey who truly care. I can tell you that a civilian doctor has never given me their cell phone number (in case of emergencies) I can’t imagine another place that could care for me so completely. Yesterday was a double whammy of getting a small part of my ear removed in a biopsy (skin cancer will have to get in line behind ovarian cancer) and a visit to the surgeon to check on fascia pain. The doctor seems to think the fascia is fighting back. Clearly, the fascia doesn’t know me well enough. I look forward to the time when a weekly hospital visit is not the norm, but for the time being. this is the way of things.
I am contemplating things that I would want to do for 25 days straight (minus weekends) and radiation was not one of them. Things I would definitely want to do for 25 days: walk, teach, read, play Scrabble, watch Scandal, eat Twizzlers, and drink Diet Coke. Instead, I will begin my journey with radiation treatments on April 8. The nurse warned me that even if I was sick, or had a flat tire (is this a common problem in Hawaii, because it’s happened to me recently?), or fill-in-any-other-excuse, I am to come every day. I wanted to ask her if she was willing to help me get the flat tire changed, but she didn’t seem like that type.
Right now, it’s the calm before the storm. I am feeling better post surgery, tooling around my block without gasping for breath, and I made it through three seasons of HBO’s Girls. I have one more week before the 25 days start. I finished my last Arixtra shot, but I still have more painkillers left. So, for now, it’s one day at a time….
What are you thinking about for your 25 days?
The Urban Dictionary defines “Loaded for Bear” as to be prepared mentally and physically for extreme opposition; typically used in reference to an aggressive or potentially violent situation. Yesterday, as I prepared for my blistering .71 mile walk, my mother-in-law used this phrase-Loaded for Bear- to describe me (…except she said “ready for bear”). This devolved into a family discussion about whether this phrase actually exists. It does, and I am. (I also spent most of the evening using the phrase in various sentences until I’m pretty sure everyone was tired of hearing it.) Which leads to the activities of this morning. Today, I bent the needle taking the cap off my daily Arixtra shot and just went ahead and gave it to myself anyway-Loaded for Bear.