Remember that song from the Gin Blossoms called Hey Jealousy? That was rolling through my head when I failed my blood test today-low white count and low neutrophils. My body is forcing me to take a break. It’s bad when you’re jealous of the person sitting next to you getting chemo when you can’t. Pretty pathetic actually. My neutrophil count was too low to even think of getting chemo. Normal neutrophil numbers are 1.5-7.5. Last Friday I was at .4 and Monday .7. Today, I was sure the numbers would reach that magic 1.5, but no. The neutrophils are just barely .8. White Blood Count was 1.5 and normal range is 3.5-11.0. The white blood cells and neutrophils fight against infection. Simply put, I don’t have the defenses to fight against bacteria and infection. I’m a hugger, and there will be no hugs! You’ll have to get your hugs elsewhere this week. So what now? I wait until next Thursday and we try again. This is messing with the whole schedule in my brain and will most likely extend chemotherapy into October. But, as I was reminded, it’s not a sprint, it’s a marathon. My husband observed last week that I am completely up to speed with the positive thoughts aspect of fighting cancer, but my body needs to get with the program and catch up to the mind. Time to listen and do what needs to be done. Rest and allow time for recovery. We will try again next Thursday. I wish it was like school and I could just study hard! I’m such a “head down and power through” type of person, so you can imagine my frustration with all of this. I need a zen moment.
There are a few moments in life, when you have no choice but to “live in the moment.” Vomitting being one those. I threw up 12 times last weekend, which was a world record for me. My vomit-free streak lasted from November 16, 2013. Like Seinfeld, I do keep track of these things. Still not sure what caused the Linda Blair episode (which was accompanied by a migraine style headache) but I am praying it will not happen again. I’ll get a chance to test it next Thursday when I have my next chemo. Last Saturday seemed to be shaping up like a normal post chemo day….a little tired and a little nauseated. I even took at short walk at 5. At about 730 the headache came on and by midnight, I was revisiting my dinner (In other notes-I no longer like hamburger). This weekend made me realize how fragile our bodies actually are. One nurse said, “We are more delicate than we imagine.” I also found that neither Zofran, Reglan, or Phenergen really work once you really get sick. Nothing does. More importantly, I found out that Nurse Jackie (my nurse Jackie) is there for me 24 hours a day as is my husband, who patted my back and made me feel slightly less horrible. I also learned that when you throw up violently, you get a beautiful petechial rash on your face…..vaguely Howdy Doody looking. If there is a badge to be earned with all of this, I think I earned it this weekend. Still unsure how this weekend fits into the general side effects of chemo category, but I can guarantee you that I was completely in the moment!
My friend asked me what the chemo regimen was like each week, so here goes-
Wednesday: Blood work-checking for platelet and Red Blood Count. Pack my bag for the chemo room which includes a pack of Twizzlers and a downloaded movie (nothing dark and depressing Lis). Wednesday night, I am always a little nervous anticipating the next day’s events. I know what it’s going to be, but I still get nervous the night before.
Thursday: Arrive at 730 so I can get one of the 11 chairs in the chemo room. Sometimes, it’s so packed, there is very little for visitors. Re-check of the blood work, if the numbers were not great from the day before. First med is the steroids and the anti-emetics. Takes about 45-hour to run that through. I usually get a little tired during this. Also, 2 liters of hydrating fluids get pumped through. (Today’s Movie was Shaun of the Dead)
Drug 2 is the Carboplatin. The Dex (steroids) are to help with the nausea of this. One of my chemo friends calls the Dex her 10 Little Indian drug since it makes her feel like she can do 10 things at once. Carboplatin has the most nausea side effects. Next treatment will be Carbo #7, so that means we have to start watching for allergic reactions.
Drug 3 is the Gemzar (Gemcitabine). This one goes through in 30 minutes and one of the primary side effects to this is rash and fever. I usually get a nice red face on day 2. Combined with the steroids, I look like an Oompa Loompah on day 2 (Friday). One side effect of Gemzar is thinning hair. The other side effect is tongue and mouth sores…serious fun!
Drug 4 is the Avastin. This is a drug that is supposed to stop the growth of new blood vessels. I love this line from the side effect warning…
“Although some people may have a life-threatening side effect, most do not.” The life-threatening side effect? Yikes!
Once all is done, they disconnect the port and I head out! I usually have some extra energy right at the end, so it’s a good time to run errands. Crash time happens a couple of hours later. But then, I usually have the insomnia the first night again. When I get Carbo, I have to take steroids for three days post chemo which messes with my sleep big time!
Most of my side effects seem to be nausea and fatigue. Not very glamorous, but I just deal with it.
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!