Thursday, December 31, 2009

Nobody's Gonna Break My Stride. -Matthew Wilder

Happy New Year, 2010 a new decade. I am ready to purge. I want to move things out of my life, make room for new things, good things. I want to recycle and take many trips to the Goodwill with stuff that has been in my life for too long. I have folders from high school, college and nursing school. I have old clothes and notes. I like to look back on these items for a trip down memory lane, but it is time to let them move on. I need to hit the restart button with "stuff" in my life. I want more freedom from my physical belongings. I want to make room to attain our family goal, which is to hit the road in our vintage travel trailer, the "Aloha", and see odd road side attractions and other beautiful sites in the US. We will take a few months to see the sites, show our boy the beauty and strangeness of America.
I am also excited about going back to school to becoming a nurse practioner, I plan to move back into direct patient, yes and yeah! I am still undecided about a specialty: Family, Women's or Pediatric? I am going to apply at the end of this year 2010 for fall of 2011. I am not sure what school I will go with but I am excited for the future of my career.
I am excited to see my baby grow and communicate more. He is now trying to jump which consists of him bouncing up and down on his tippy toes. He is a sponge for learning and fantastic. He points at everything and wants to watch wheels, fans and laundry spin. He is pure joy and fun.
This will be the decade of health for me and my family, I will soon be completely cancer free and work to stay healthy and spiritually wealthy. I hope to run again or dedicate more of my time to yoga and meditation. Eat more organic and less sugar.
oh sugar, how much I love thee. I love mike and ikes, good and plenty, gummy anything and licorice. Candy is so fun. Sugar is so sweet. However, I tend to believe that cancer likes sugar. When I had my PET scan they used a dextrose solution that "attracts cancer cells" so wouldn't that mean that cancer and sugar work well together? Well, I am trying to minimize my sugar intake, or at least my candy intake. It is like saying goodbye to an old friend.
2010 will be filled with life

Wednesday, December 30, 2009

Breathe Me. -Sia

I am tired tonight. I decided to post a journal entry I made at the beginning of August, just a month and a half after my first round of Chemo and radiation treatment ended. It is a sad story, but one I needed to express. I still cry every time I read this. It actually sums up "my cancer story". Well, I am glad to be out of this stage of grieving, I know there is more to come, just continuing to ride the roller coaster of life. Hopefully I can spiritually evolve and suffer less- wouldn't that be great.

8/9/09
Who would have thought that life would turn out this way? Maybe I am being dramatic but I went to nursing school eight years ago to follow my passion for birth and women’s health. I learned everything I could about birth and preceded to find work in labor and delivery, teaching childbirth education and home visiting pregnant and new moms. I worked extremely hard to get my Lactation Consultant certification, which I am very proud to have completed. I loved to learn and share information about pregnancy and breastfeeding. It has been my career in nursing. I was excited to get pregnant and have my own experience with birth, breastfeeding and being a parent. I felt like I had the ultimate preparation.
For two years I tried to get pregnant and finally I did. It was my turn, to be the mom, to experience pregnancy, labor and delivery, and breastfeeding. I loved being pregnant, I threw-up every day for 7 months but it was so worth it. I felt so prepared. I felt confident and strong about what I wanted for my baby.
I was most excited to breastfeed. I couldn’t wait to experience breastfeeding. I have helped so many moms problem solve breastfeeding issues and I was waiting to see which areas would challenge me. In fact I was more concerned about my breastfeeding relationship than the birth experience. My plan was to breastfeed my baby at least two years. What a wonderful gift to feed your baby and sustain his life with the most perfect food that was meant for him. I loved breastfeeding my baby. The transition to breastfeeding was smooth aside from sore nipples, which resolved quickly. I experienced some engorgement and I knew to feed my baby frequently and that too resolved. My baby did not loose much weight and was back to birth weight before the two-week marker. He was healthy and ate well.
Around three months post partum I went to my midwife for a follow-up visit because she noticed some abnormal tissue on my cervix. I was diagnosed with cervical cancer. Of course this was one of the worst days of my life, if not the worst. How could this be happening to me I am only 37 years old and I have a new baby? Life is not fair; this was not what I had planned for my maternity leave. 10 days later I was getting a radical hysterectomy. I breastfed my baby prior to surgery, while in the hospital, and after the surgery. I had excellent support from the hospital lactation consultants. My initial plan was to room in with the baby but it was an unrealistic expectation, I was exhausted from the surgery and the baby needed a lot of attention. So my baby was in very good hands with grandma and grandpa for a few nights. The nights after my surgery, my husband would wake with me every 3 hours to help me pump and store my milk. The hospital staff would label and store my breast milk in the floor refrigerator. My baby would come during the day and breastfeed. Once home, I couldn’t lift my son for 6 weeks, I had to have help every day, all day. I was never alone. This was not part of my parenting plan. I spent a lot of time on the couch with my baby breastfeeding and sleeping on my lap.
Unfortunately, the doctors found some cancer cells in one little lymph node and I had to have radiation and chemotherapy. I knew my breastfeeding days were numbered and this was not my choice. How was I to survive chemo and radiation with a new baby but more importantly how was I to wean my baby from breastfeeding? I did not want this to happen. I pumped a lot of milk to feed him via bottle. I pumped every day. The last day I breastfed was the day before mothers day. I didn’t really know it was the last time I was going to breastfeed because I was decreasing the feedings and it just happened that way. I think it was better for me not to make a big deal over the end. I did continue to pump until the moment of my first Chemotherapy infusion. Life is just not fair sometimes. I continued to pump and slowly decrease my supply. There was hope that I could feed him again, but I did my research and knew that the leading expert recommended to stop breastfeeding because the medication could stay in my tissue for a long time.
The beautiful thing is my baby transitioned very well. He is easy and adaptable. I sure miss breastfeeding. I miss being able to feed my baby and how he would look up and smile at me. My breast milk is in the freezer. Some of it I have fed to my baby. When I look at those dated bags of breast milk, I think about my cancer. I had to give up so much and had no choice in the matter. I think about how I was trying to survive on 5/4/09 when I pumped 3 oz. and on 4/24 when I pumped 4 oz. I was doing what I could to make it last. I didn’t plan to give up breastfeeding or start menopause at 38. So right now that breast milk represents cancer to me: the Lactation Consultant, and promoter of breastfeeding. I just can’t bring myself to take it out of the freezer and feed it to my baby who has grown accustom to his “organic” formula. He sometimes rejects the breast milk (notice I use “the” and not “my”) and I cannot handle the rejection.
I don’t know what type of lesson I am meant to learn from all of this. I am just now experiencing the loss and sadness. In addition to everything, at work I was transferred to a different department and do not work with mother and babies anymore. Even my career is gone, for now. It is one loss after another. I am getting used to my new life but it still feels like I have lost so much that I can’t even begin to make sense of it. I know I am thankful for all the support and help I received through all of my treatment. I also have a baby that is healthy and happy. I have a wonderful family that loves my family and me.
Cancer treatment reminds me a little bit of an event-planning job I once had. There was all this build up, planning, hard work and then the big event. The event was exciting and stressful (however way more fun than cancer treatment). Afterwards I was exhausted and relieved but also kind of empty because it had occupied so much of my life and thoughts. I am glad to be finished with the treatment and so much stress but I feel sort of empty. Like what do I do now? My world has just been rocked and I am back to work and trying to sort things out in my head and in my body. Left to figure it out and make sense of a new life, which I did not choose. I hope it gets easier or at least funnier, as in silly ha-ha not ironic, as in more change.

Monday, December 28, 2009

You’re the Best (Karate Kid Soundtrack). -Joe Esposito

It is only a sprain, yahoo! On the 24th day of Christmas I gave my body a lovely right ankle purple bruise. Now, on the 28th day of Christmas I gave my body a splint for my right ankle. Today, I have some fear and loathing of what is to come. I feel like I should be planning for Hawaii but I keep planning for treatment. I want my treatment to be easier this time. Just because I know what to expect it will be easier, but it is still scary and sucks. I am not looking forward to having my own pharmacy to treat every unexpected symptom. I am not looking forward to the highs and lows of steroids. I am not excited about the moon face and flushed skin look that treatment brings. I am not looking forward to not knowing what I can and can't eat day to day. I am not excited to be tired all the time, especially with a toddler. I am not excited to live away from home for six weeks. I am not excited by all the needle pokes and IV's. I can only HOPE that this time it will be less intense because the radiation field is different. The onslaught of appointments have been scheduled, it is a reality. It is happening, my life continues but also feels "on hold". I want a new beginning. I want to sort, purge and reorganize. Throw out the clutter to make room for new possibilities. So this round of chemo and radiation better purge those cancer cells into outer space and out of my body forever! I want them gone for good. I am done with caner already. Please move on cancer cells, please.

Sunday, December 27, 2009

Life in One Day. - Howard Jones

Time to blog. hmmm, not sure what to write about, my day has been filled with toddler chasing, cleaning, cooking, toddler chasing and grocery shopping. Today was possible from the help of my mom. I am still in awe of the difficulty of parenting and trying to function as a family with a toddler. I guess my house is not "baby proofed" which could make a difference. I seldom sit down until he is in bed after 7 PM. It is non-stop action, which can be exhausting for this late in life mother of 38. In some ways I can see how it would be easier to parent in your 20's. More energy and less experience with having your way for many years. Well, I am blessed and thankful to be a parent now. My little man is a sponge for learning. Every day is a new word or sign. He is fascinated with wheels right now. We spend the day looking at a lot of wheels or things that go round, like car wheels, fans and laundry. We walk, walk and walk some more.
Next month, we are going on a trip to Kauai, prior to my treatment and every once in a while I get waves of fear about the 5 hour plane ride with my 13 month old that doesn't want to sit. What is going to happen? How will it be? Worst case scenario is that he will scream for 5 hours straight during the flight, which would be distressing to me, all the passengers and not to mention the baby. I guess what ever happens it will be temporary and realistically I can't imagine Finley will scream for 5 hours. I will do my best to prepare with a multitude of distractions. Once we're in Kauai, all will be good, it is just getting there and back that creates a pang of stress in my mind. Before baby, during a flight I would listen to my ipod, watch the in-flight movie and read, not this time. This flight will be another lesson in surrender and trust. Ultimately I do not have control. I can prepare and plan for the flight with baby but I also have to roll with the punches and trust the process. hmmm, actually this "lesson" is true for all of parenting, cancer treatment and life. Ok Mama, now just take a deep breath and be.

Friday, December 25, 2009

Free Fallin' - Tom Petty

Christmas is a time for giving, sharing and visiting with relatives, in theory. However, a lot of people scurry around finding gifts and rushing to get ready in a last minute fashion( I am guilty of this too). I usually have 3 to 5 Christmas' per year. There is a lot of preparation and anticipation for one day. I love the anticipation but every year I find a common exhaustion and let down at the end of the holiday. This is not disappointment but an acknowledgment of another transition and end to the holiday season. At the end of December my husband and I vow to do it differently next year, go to hawaii or to a cabin in the snow, then enough time passes and I get excited about reliving my Christmas childhood memories and want to have the 3 to 5 Christmas'. Maybe documenting my reflections will remind me next year to try something new or create our own family tradition.
At one, Finley was fairly clueless about the onslaught of gifts that were coming his way. He was just excited to walk and shake a ribbon or push a button on a toy. He has not gained an understanding about having "stuff". He is precious and innocent. The holidays are filled with extra stimuli, that mess with his nap and eating schedule which makes mom nervous. Why nervous because of the potential of meltdown and I try to work hard to meet his needs as best I can, but, hey life is not a "schedule" right. The reality is if he has a meltdown I am sure I could deal with it. I think it is about having some control over my life with a toddler and trying to be a good parent.
As for myself, I again received a reminder from my body to slow down. You would think that because I have "cancer" I would be so in tune with my body and know my limits, nope. On Christmas eve I was getting into the car to drive to our 2nd Christmas of the season and I stepped off the curb and rolled my ankle and went down for the count. I was down like the lady in the "I've fallen and I can't get up" commercial. I was stunned by the pain and that I actually fell down. I called for B but he was in the car waiting for me, the baby was strapped in his car seat ready to go. Finally, my husband realized that I disappeared and I must have fallen. He bolted out of the car to help me up. The pain passed and I was able to walk to the car to watch the top of my foot swell. I iced it all the way to the party. luckily it was just a strain, I think.

Oh joy, what are you telling me body, what now. These are the questions I ask myself to analyze why this happened:

1. Am I still weak from surgery and recovering because it has only been 10 days?
2. Am I getting old and not paying attention to my surroundings?
3. Am I unbalanced and need to focus on grounding my energy and slowing down?
4. Do I need to be compassionate, give myself a hug and say I am sorry to my body?

Well, yes, yes, yes and yes. I do have to add in one more question I ask myself a lot, Why me? There is no answer to that one. I am reminded again that my body has needs, and by golly, I better listen to it. Merry Christmas body, I appreciate you, need you and will work hard in 2010 to listen and honor you. I will try to be present in my surroundings and be compassionate with myself.

Wednesday, December 23, 2009

Do They Know Its Christmas? -Band-Aid

I am tired of being tired. Recovering from surgery takes time and I am impatient. The holidays are here, I want to make carmels and cookies, play with Finley, wrap presents, clean house and run errands. There is just not enough time in the day, nor is there enough energy in my body. Realistically, I can accomplish one maybe 2 of the items on my list. Then I have to let go of the rest. Easier said than done. 
It gets old listening to my body, wondering about the symptoms I feel and what they might indicate. I am constantly trying to manage my symptoms or prevent new ones. It is exhausting to think about it. I did too much today. We are not a culture that slows down, we are a culture of multitasking and doing. I am a doer, before I had my baby and cancer I could do so many things in a day. I was a doer. 
When I was in West Africa in the Peace Corps, I was happy to accomplish 1-2 items per day. These items were simple tasks like walk through the village, eat and read. The culture I lived in was more about relationship and community and less about stuff and doing. They have a saying that is so contrary to our work-obsessed culture, in the U.S. we say "nice work" and "good job. In West Africa I often heard people say  " Bonne Assise (good sitting)". I was actually complimented on how well I sat. That's it, I am having a Peace Corps kind of day. I know what I can do, I can look at my body like it's foreign land or language that I am trying to learn (well it is). "Bonne Assise". Well that made me feel better about if for a second or two. I am done with today, I hope for more energy tomorrow. 

Tuesday, December 22, 2009

It's my life, don't you forget... Talk Talk

The cyst was cancer, the plan was to get a PET/CT* scan and look at my whole body to see if there is anymore lingering cancer in lymph nodes or elsewhere. Since I was already admitted to the hospital they decided I should do the procedure prior to my discharge. Makes sense to me. I had some explanation of the procedure but it still seemed like a mystery until I was actually being photographed. The one question I wanted to know was the length of the procedure. The fellow said, "up to and hour" the R4 said, "45 minutes or so", but the answers were somewhat vague. So I really did not know how long this will take. 
Residents are interesting, I understand that I am receiving care at a teaching institution and I am all for it, but, I can tell they are learning and some are still developing their bedside manner. I have no doubt they are dedicated and smart to make it to UW as an R4 or fellow. As a patient I want my doctor to be real with me. Sometimes there is a lingering pretension in the room, when the residents make their rounds. Maybe it is the competition, or the lame news they have to share in oncology all the time, or just a bad day. However there is a fine line for communicating with people scared for their life. You can't be too up beat and you can't be to solum, it is best just to tell it like it is and cut the bullshit. I understand some Docs are trying to be compassionate and caring with concerning looks, which to me reads as "oh this poor patient only x number of months to live". Then there are other Residents who want to make some small talk to "connect" with me, break the ice if you will. For example, "so it looks like your baby is turning 1 this week, how exciting do you have any plans."  I know it is thoughtful of the resident to show interest in my life but during a presurgical appointment all I can think about is
 1. they're gonna stick their hands up my crotch and butt in a few minutes.
2. I might have cancer, AGAIN
3. because of this surgery I have to postpone my baby's 1st birthday which totally sucks and I do not want to be reminded of one more way that cancer has created a loss in my life. 

So my advice for those who work with me is talk about the hear and now and cut the bullshit. That being said, I am thankful that doctors go into the gynecology/oncology field. Please keep researching for a cure. 
Back to the scan, so I couldn't eat for 12 hours or so because they needed to inject a dextrose(sugar) dye into my veins and flush it through my bladder. Lucky me. So this required replacing my current catheter with a 3 way catheter so they can flush dextrose through my bladder. Apparently, cancer is attracted to sugar and that is how they find the hot spots. Note to self: maybe I should eat less swedish fish, good and plenties and cookies, cut back on the sugar - easier to say then do. At noon a transporter pics me up in the wheel chair to wheel me and my bags (bladder/IV) to radiology. It is across the hospital so I get to watch people in the elevator look at me compassionately, wonder in their minds what is wrong with me. I haven't had a shower or brushed my hair so I am sure I look pitiful. The transporter explained to me that she once wore a pedometer and logged 8 miles in one day transferring patients here and there, she was fast. 
We finally arrive to a windowless clinical hallway with exam rooms and rooms with big machines waiting for their human bait. I meet the tech, she wheels me into a small closet size room with a stretcher. She says " this is going to take about 2 hours". Okay I've got time and am rolling with the punches, my husband who is waiting is clueless about the length of this procedure, I hope he doesn't worry. The Tech said "It takes 45 minutes for the dextrose dye to circulate through your body and then the scan lasts 45 minutes." I am looking around the small clinical room, lying on the stretcher, there are no magazines, tv, I brought nothing to distract myself. The tech prepares the injection. I comment, " that is and interesting block/syringe contraption," she responds, "it protects us because the injection is radioactive." I hear the mama warning bell in my head.  I ask, "are there any restrictions in holding my son or sleeping with him? In a nonchalant way she responds, "You can give him a quick hug or a kiss but best not to sleep in the same room with him or hold him very long". Another note to myself, glad I asked, it would be nice if they had a handout or some literature to describe these restrictions, I did ask for time limits which I never received, just that the drug has 20 1/2 lives and will be out in 20 hours. Again, this process is more rolling with the punches, learn as you go. Although there are a lot of medical "protocols" the communication flow and patient education needs some work. To use the buzz word in public health, the hospital departments are like mini silos and cultures. To each there own.
So I am lying on my stretcher receiving radioactive dye, curious if I will glow in the dark (ha ha, the joke I seem to hear a lot these days). The tech says, I'll leave you alone to rest. Gee thanks, here I am left alone with my thoughts in a clinical room without media distractions. Luckily, I was in a place of strength and took the time to apologize to my body and feel compassion for the trauma it has gone through and faces. I let myself cry a bit about the overwhelming amount of loss in my life. I visualized healing light from my top to toes and occasionally prayed and hoped that this scan will be cancer free, or bear good news for a change. I had no choice but to face my feelings, which is important, but not easy. There are always more feeling to be had.
Finally my body was fully radioactive and I was placed on the machine for 45 minutes with my arms over my head. This is an awful long time to have your hands over your head. First I closed my eyes and rested then my arms started hurting around 35 minutes. All I could do was think about finishing, lets get it done. 
My first PET/CT scan was complete. One more medical experience to add to my life. Another transporter took me back to my room. Back from a three hour tour. Did you hear that Residents, Fellows and medical folks. Three hours. My husband was pacing the halls wondering why it took so long. He asked the front desk at one point about how long it might be and someone said, "maybe they found something so it is taking longer. " WRONG answer lady, you do not say that to the spouse of a cancer patient because you do not know. I told my nurse of the comment my husband received and she apologized. Now we just have to do what we do best wait for the results tomorrow. 

*Positron Emission Tomography (PET) and Computerized Tomography (CT) are imaging tools that allow physicians to pinpoint the location of cancer within the body before making treatment recommendations

Monday, December 21, 2009

Theme Songs

It all started when I was 14 and 15, my two best girlfriends and I were discovering the world of boys and socializing. School was no longer a learning institution but a vehicle for social interactions with boys and giggling with our girlfriends. We spent time going through our yearbook looking at cute boys and creating crushes. We started "scam" books which is basically a list of boys we kissed, and I am embarrassed to stay I still have mine in box packed away somewhere. 
Our weekends were dedicated to "getting ready" and going to parties or a social gatherings to try out our new found favorite pass time, flirting and getting attention from boys. Oh the hormones of being a teenager. We created "theme songs" to document our weekend party memories. We would update a "typed" list we kept that represented what happened that weekend. Of course, as teenagers we listened to music all the time and mostly top 40 radio junk or MTV videos. We had good luck and bad luck songs. Howard Jones "Things can only get better" was a good luck song and "Crazy for you" by Madonna was a bad luck song. These songs could dictate a good or bad day, they had a lot of power over us.  Most of all it gave us the ability to have inside jokes, be dramatic and to be uniquely connected. 
 I feel nostalgic listening to those songs, remembering the awkward excitement of being a teenager. That time was a beginning of my transition from girl to woman, a rite of passage, the potential was endless, the world undiscovered. So it makes sense to me why cheesy songs bring me such joy. Now, in my post cancer and new mama life, I am experiencing a rite of passage times a thousand. So why not incorporate theme songs back into my life? I want to think about the infinite potential in every day of my life. I want to enjoy this roller coaster ride and feel everything (without going too crazy). I want to laugh and create new "theme songs" for the new cancer free menopause mama that I am. You go girl!

Sunday, December 20, 2009

I get knocked down and I get up again. - Chumbawumba

Recovering from surgery is exhausting. The moment you start feeling better you do too much and then you have to rest again. Lucky for me, I had surgery on my perinium and get the experience of what it is like to have a 4th degree tear. I get to learn about sitz baths and stool softeners. Lets not forget loads of antibiotics to keep pesky infections at bay. It is also important to drink lots of water. What I don't get is the recommendation to have a sitz bath 3 times a day for 15-20 minutes. This means I get to sit on a pink plastic basin filled with warm water and soak my goods for 15-20 minutes. I don't know how anyone can sit on a toilet for 15 minutes a day let alone 3 times a day. The big question is how to do this with a busy walking toddler?  
I have a newly toddling one-year-old in a yet-to-be-baby-proofed house. Toddlers are busy, Finley's job is to dump dump and dump some more, explore and experience. He is inspired by every moment of his day, the things he learns and sees. He is a learning sponge. He says a few words already like "duck", "tree",  "mama" and "daddy". He makes it difficult to rest but provides me inspiration to love life. He walks and tumbles and gets back up and does it again over and over all day. Can you imagine if you or I fell as many times as a toddler does in one day. Oh the bruises. Lucky for Finley he is close to the ground. But he is never discouraged, he walks, wobbles and tips, he plants his hands on the ground pushes up with his thighs and tries again. Sometimes he tries to run with a book in his hand obstructing his view of what is ahead. He just goes forward, takes the next step. That is what we do when we are learning from life, right? We take steps forward, fall and get back up and try again. We keep going. 

I never realized how profound toddlers can be. 

Saturday, December 19, 2009

Here I go again on my own. -White Snake

I got the call on December 3rd sitting in my cubicle. It was my oncologist, Dr. M, with my test results. I knew it was bad news. 

1. The call was the day after she aspirated a "post-surgical" cyst. She had sent the mystery liquid to cytology.
2. My extremely busy oncologist called, not her nurse.
3. She left her personal cell phone number.

Oh shit, I could feel my blood flushing my face, my hands started to shake, everything was spinning, my body expressing its well rehearsed anxiety response. I needed to call her right back, I need to know. My hands are fumbling my cell phone, the damn keys are so small and in the moment seem to be getting smaller. I attempt to call my oncologist 3 times before I successfully place the call. It rang 3 times, she answered. I say "Dr. M this is Addie Case calling you back." She starts to explain my results, "There are no cancer cells, but there are a lot of necrotic cells which is an abnormal result. I think the cyst needs to be surgically removed and sent to cytology. " She then added, "there are some rare cases, around 30, where women have delivered with cervical cancer and some of the cells have migrated during delivery to the episiotomy/tear site, so this may still be primary cancer, if it is cancer." "This surgery needs to happen soon. I made some time in my schedule for the procedure on December 15th." My reaction (externally), "Okay, necrotic cells means tissue death right?" "I will take the surgery date." My reaction (internally), "No way this can't be happening, again. I am just starting to get back to normal. What is happening..." I get off the phone, the rest of my work day is shot. I find my coworkers and burst into tears sharing the news, I have to call my husband.