Mind the Gap

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Mind the Gap serves as a warning to train passengers to take caution as they travel from train car to platform. It’s also the title of what is apparently a 2004 film of the same name about “Five people that take huge risks in their personal lives in an effort to find happiness.” One of my favorite reviews of the movie calls it “a very small film with a big heart.”
I am about to travel across a huge gap, literally, as I head back from a well-deserved vacation across an ocean and back to a job and a life that I love. I’ve been gone for more than a few months-first surgery, radiation, and chemotherapy for recurrent Ovarian Cancer. Then I had this lovely little family vacation for two weeks in Washington State. I watched the Mariner’s beat the Mets! I ate too much (including questionable ball park food), I didn’t sleep enough, I was moderately careful about touching the shopping carts, but I did not have my guard fully up. Many hugs were disbursed against medical advice as I tried to pack in many family and friend visits. It was a lazy and fun vacation. I got to hug on family members that I haven’t seen for five years, and some I have only missed for a few months. I ate some of the most delicious food I have had ever! My tummy might argue the point a bit, but even that didn’t deter me from getting out there. If I wanted cake, I ate it. If I wanted cookies, I ate those. Hopefully, I didn’t eat any of the recently recalled listeria tainted produce sold throughout Washington State. All in all, a successful vacation. I also found out there is a rib fairy who delivers ribs to your house, if you’re nice. You probably don’t know her though. The cheesecake fairy exists too, but clearly, she is a different person. The massage fairy was at work too! Busy time of the year for them.
As I travel back, it is time to shift gears back to treatment and back to work. There is definitely a worry about the gap in time between chemo treatments. It settles in the back of my brain reminding me that each day without chemo is another day the cancer could be mobilizing its forces. All I can do is choose to be mindful. I will start back next week with chemo…the following week with school. I need to reintroduce myself to Prilosec and Phenergen, and crank up the water intake. Nurse Jackie will be ready to take my blood and see what damage has been done, if any. As I head back to the love and support on Oahu, I can’t help but think that this gap in medical treatment was enhanced by an improvement in mental health and a reminder to not let my treatment get in the way of life. I can’t thank my family and friends enough. My current chemotherapy should last until mid October (with maintenance chemo afterwards) so a long road ahead.

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Traveling with Cancer

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Traveling takes on a whole new meaning for cancer patients. Every sneeze and every cough on the airplane has the potential to spread unwanted infection. To most people, it’s just an annoyance, but when your immune system is compromised there is so much more of concern. I had the opportunity to fly recently in what is essentially the middle of my chemo treatment. I survived the debulking surgery in March, 25 radiations, and 4 chemos already, but would I survive the passenger on flight 898 who touched the seat-back tray with his germ filled hands on the previous flight. How thoroughly do airlines really clean those planes? What about the recirculated air from the 250 passengers all around me?

I traveled with the blessing of my doctor and my chemo nurses. Nurse Cindy said to me, “We do these treatments so that you will be able to enjoy your life.” That is my plan! I brought my bag full of drugs with me (wondering if TSA was going to wonder about a gallon Ziploc filled with prescription meds). I brought 3 bottles of hand sanitizer, three packs of Clorox travel wipes, and two cloth masks ordered from Amazon. (The only masks I had at home prior to this were from Home Depot made with the intention for home improvement projects.) Not only do the masks ward off germs, I’ve noticed most people subconsciously create a healthy personal zone around mask wearing travelers. Although rather hot and uncomfortable, they kept me insulated from all that swirled around me (even if it was only a mental protection). My Trip is still a work in progress, but a welcome break from cancer, treatments, and hospitals. When I return, I will be ready to pick up arms and begin the fight again…as my sister said…RFM…Relentless Forward Motion. I concur.

 

 

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Hot ‘n Cold

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I wish I could say that I am halfway through chemo, but not yet (should finish with these cycles of chemo in October followed by maintenance chemo once a month). We are running hot n cold on getting chemo treatments. My fickle blood is not liking the Gemzar. My ANC (Absolute Neutraphil Count) is bouncing around from 400 to 7000. Normal range is 1500 to 7500. They won’t do chemo on me unless it is very close to 1000. The cycle of chemo follows a 21 day pattern. Day 1 of chemo is Carbo/Gemzar/Avastin and Day 8 is Gemzar and day 21 is off. (When I had frontline chemo in 2012, my biggest problem was the red blood cell count. I had two blood transfusions to counter that.) Now the white blood cell count is the problem. The combat this, we use Neulasta one day after day 8 of chemo. I’ll do blood count again on Monday even though this is an off week. This time the blood count will tell me how careful I’ll have to be during the next two weeks of vacation. I’ve already been told to wear a mask on the airplane. I will be also watching for Neutropenic fevers. and carrying my own bottle of just-in-case antibiotics. I’m (not) looking forward to going through security at the airport all masked and carrying a large ziploc of all my meds. I’m sure folks will give me a wide berth at the airport. What I am really excited about is two weeks of just enjoying life. What are your vacation plans this summer? What memories will you make?

Skele-Gro

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My chemo journey seems to bring me something new each week! One of my  biggest challenges with the Gemzar has been keeping my white count high enough to even get chemo, and also to avoid bacterial infection. It seems vaguely humorous that you need drugs to treat the side effects of the drugs needed to fight cancer.  It’s like the Inception (a dream within a dream) of cancer.  My latest challenge is the need to generate healthy bone marrow.  The best means of doing this appears to be Neulasta, a drug which stimulates bone marrow production.My cancer fighting chemotherapy is indiscriminate about which cells it kills, and it has been attacking my white blood cells.  Those infection fighting white blood cells are developed in the bone marrow.  We need to get the cell party started deep within my bone marrow.  To say that my last experience with Neupogen (another bone marrow booster) did not go well, would be a huge understatement.  The bone pain I felt from that was just excruciating.  But here’s a fun fact: Evidently Claritin fights bone pain.  Who knew? I always wonder who was the first person to figure out that taking something off label could help something else.  I started the Claritin today and will continue for a 3 days post chemo. The current plan is chemotherapy on Friday morning, and then the dreaded Neulasta on Saturday (24 hours after chemo). Then, let the fun begin. Image

Maybe it would just be easier to take Skele-gro!

How’d de do dat?

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“How do they put the chemo in?” Fair question.  If you are only having a few chemos, the doctor will sometimes just have the oncology nurses access a vein just like a normal blood draw.  If you are having multiple chemos, it is much easier and less painful on the veins to have a PowerPort installed in your chest.  When I had chemo directly infused into a vein in the hand (the very first time before I had my port), my hand burned and they had to keep warm compresses on it while the chemo drug worked its magic. My port  is located on my right side directly beneath my collar bone, so it doesn’t interfere with the seatbelt in a car.  Inserted surgically two years ago, it can remain in the body indefinitely.  It can be used for blood draws, injecting MRI contrast dyes, or administering chemo.  Dr. D says he usually takes them out two years post chemo.  The PowerPort gives the nurses direct access to the veins.  To access the port, they punch a special needle into the port.  There is a cold spray that can be used, but I think the spray hurts as much as the needle, so I always go with no spray.  After the chemo is complete, the port is flushed with heparin and the needle is removed.  A small bandage (just like a blood draw) is put on the access point.

1.  It doesn’t affect your ability to swim or take a shower.

2.  It doesn’t set off metal detectors as airports.

3.  They undersold the pain of insertion, but it doesn’t hurt now.

4. It can be used for regular blood draws, but the needle used is a special needle.

5.  Only specially trained folks can access it.

6. It can be used within a few days of being implanted, but it will hurt few weeks.

7. On some people, you don’t notice the port, but mine pokes through the skin like an alien head.  My daily life doesn’t include a lot of bikinis, so no problem there.

8.  For people with bad veins, this is a life saver!

9.  Only one “stick” takes care of blood draw and chemotherapy infusion.

10.  There are no problems exercising with a port, so get out there!

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Hey Jealousy

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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.

Get Your Burgers Here

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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!

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Your Results May Vary

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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.

“Here I Go Again”

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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!)

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Blood doesn’t lie

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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 #NetflixMortified Nation, Queen of Versailles, Girl Model, Russia’s Toughest Prisons, Fat Sick & Nearly Dead. 

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