Thursday, July 8, 2010

The life of Riley

This is a long-winded post, but it’s mostly for Riley to read when she needs it.

Five years ago today, my little angel arrived and changed my life for the better ever since. I was elated, a new role as a parent, though I admit I was clueless. I had rarely held newborns and had changed a diaper maybe once or twice. I read all the popular baby books and the baby’s room was ready & waiting.

During my 8 month prenatal visit, my O.B. asked me how long I’d been having Braxton-Hicks. I replied, “I haven’t had any yet.” She looked at me and with all seriousness said, “You’re having one now.” Oh. That frequent, rock-hard tightening of my stomach was a practice contraction? Yep, I was completely naïve to the whole realm of pregnancy. I didn’t want to know the gender of the baby until “it” was born, but I also had a problem with referring to the baby as “it.” I don’t remember exactly how the name “Bean” came about, but it stuck and she introduces herself today as such.

My pregnancy had gone rather well, no complications & only minor discomfort from heartburn, sleepless nights, temporary carpal tunnel and cankles. Hmmm…not much has changed. I had no idea what was in store. The morning of July 7th, I woke up & something just felt different. I can’t explain it in words, but I was at peace and remember thinking, today’s the day Bean will be here. This was the calm before the storm.

I had my weekly appointment with the O.B. that morning. Derek & I were carpooling to work as there was only an hour difference in our shift schedules. He kept my hospital bag in the patrol car, just in case. We went to the doctor’s office before work. After the exam, she said everything looked well and wouldn’t be surprised to see me again that night. This baby was on the way. I wasn’t having major contractions, so she told me to go home and take it easy. I asked if I could just go to work instead. She laughed and said, “Sure, if you want to.” I didn’t want to waste my maternity leave when I just sat on my ass at work anyway, and it was only a few blocks from the hospital.

Following the appointment, I walked across the street to Einstein’s on 500 East for a Tasty Turkey sandwich on a sunflower bagel and Odwalla lemonade (I passed on the grotesquely large dill pickle). I can remember exactly what I ate for lunch five years ago, but not what I had for breakfast yesterday (thank you Ambien!) Then I walked to work. My shift began at 2:00 and usually ended at 11:15 p.m. I made it to 10:45. The contractions had become too painful to sit still. I called Derek (his patrol shift ended at midnight-thirty & he notified his Sergeant that he needed to leave. He picked me up from the station and we went to the hospital.

My O.B. was the on-call that night and just happened to already be there. She did a quick exam and as she started to leave, my water broke. She walked back to me and noted the presence of meconium. The NICU was advised so they would be present for immediate suction of the baby’s lungs upon delivery. That’s what would happen in a perfect world.




You’re probably familiar with my tolerance to pain. I welcomed an epidural and can’t imagine labor without one. It was so effective that I was able to sleep throughout most of the night. I can’t say the same for Derek. My room faced the “U” on the mountainside and I watched the sunrise that morning. As the contractions became closer together my doctor and nurses gathered in my room. Derek was instructed by my doctor to call the NICU and tell the nurses to “get in here now!” as they had not responded to her previous requests. After 11 hours of labor, Bean couldn’t wait any longer. At 9:58 a.m. she was finally here. My doctor did the best she could, but the NICU nurses were too late. Riley (Bean’s a baby girl!) had aspirated meconium. She was cleaned up, bundled, and handed to me. Of course she was beautiful beyond words.



As I held her I noticed Riley’s fingers were turning blue. I held an oxygen mask to her for awhile, but the nurses needed to take her to the NICU. She was having difficulty breathing on her own. Her little body was working so hard at fighting off infection in her lungs that it would sometimes forget to breathe. Throughout the day, Derek would give me frequent updates on her progress. Despite all the efforts made, she would stay the next week in the NICU to be monitored and treated with antibiotics. Having experienced an ideal pregnancy, I was not prepared for the reality that things could go wrong during or after delivery. I was devastated.



Following my discharge, the hospital allowed me to stay there for the remainder of the week at a minimal cost. This allowed me to be with Riley as much as possible. Derek would arrive at the hospital first thing in the morning and didn’t leave until late at night, sometimes after her 1:00 a.m. feeding. At night, the nurses would call my room as soon as she woke up to be fed. I’d go quickly, just short of running, down the hallway to the NICU, scrub in, and try to get situated in a rocking chair. I hated hearing her scream as she waited for me. There was little to no privacy and being a first-time mom, I was awkward and clumsy as hell when it came to nursing her. However, after having a handful of strangers gawking at you below the 50-yard line just days before, for the moment you sort of don’t care.



The night before she was released, she was able to breathe on her own. One nurse was shocked by my patience as I sat with a sleeping Riley in lap and using a Q-tip, slowly worked baby oil under the sticky tape on her cheeks that held her cannula (the small tube that delivered oxygen to her through her nose) in place. I couldn’t imagine ripping them off like a Band-Aid from her delicate new skin.



As with so many of life’s lessons, this too was bittersweet. I learned a lot during that week, albeit the longest week of my life. Nurses taught me things that were not in books. I cried as hard as Riley did when the doctor had to relocate her I.V. I’ll never forget the nurse (not one of Riley’s) that told me I was starting a bad habit by sitting in the rocking chair, long into the night, and holding her while she slept. Seriously? She had to be kidding. I couldn’t stop staring this perfect being and was enthralled by every little movement she made. Bad habit or not, I didn’t want to leave her.



You can imagine the delight in being able to take her home. Riley was healthy and thriving. The wait lasted all morning before she was finally discharged. This was the middle of July and a summer I’ll never forget. Daylilies in bloom, hummingbirds & thunderstorms to be watched from the balcony to ease colic, a month later Katrina wreaked havoc and death would knock on my Dad’s door, only for him to say, “I’m a little busy right now, you’ll have to come another day.



It’s no secret, I’ve always been proud of my little Bean. From the start, she’s been feisty, stubborn, very independent, and strong willed. Sound familiar? She’s also quick to forgive, tender-hearted, and the most loving little creature I know. I still have a lot to learn from Riley.



HAPPY BIRTHDAY!

Thursday, June 17, 2010

This pretty much sums things up.

Of all the cancer-swag, this is one of my favorites. Thanks Derek.




The only thing missing from this list is the immeasurable support, prayers and love from friends & family.

Today was my last treatment. With a few more items of cancer-swag, Chewy, graduation certificate in hand, and a significant amount of tears shed between the staff & I, it was bittersweet leaving the Huntsman Radiation Department. It was one of those moments when the reality of it all hit me again, and life seemed to move in slow motion for a few minutes. Five months ago, upon hearing my diagnosis & treatment, it felt like it would be an eternity before this day would be here. Here it is.

Many of you have commented on what you perceive as my super-human strength. Well, take a step back and look at where that strength came from. All of you. You unknowingly and effortlessly provided something more powerful than any chemical concoction could do. I only hope that I can return even a portion of that to you in this lifetime. You are the super heroes.

What will I do now? First, I'll enjoy doing NOTHING for awhile. I'll still post my random thoughts & rants, experiences about the never-ending mischievous ways of Thing 1 and Thing 2, maybe blog about other blogs (I'm so embarrassed I used that word twice in one sentence) and updates from the few remaining scans that I have over the next 5 years.

Love you all,
Shel
Shelly
Roach
Rasha
Raco
Rach
Achelle
or however else you may know me
*Rachelle*

Wednesday, June 16, 2010

100% awesome is right!

I have a couple of dates with Chewy (my medieval radiation mask) and 360 centigrays* of radiation left this week.
*Each daily treatment is a healthy dose of 180 centigrays and you're smart people so I'll let you do the math.



Sunday, May 23, 2010

Chemo Strikes Back


You have got to be kidding me! It’s been 3 weeks since I’ve been off the juice and NOW half of my eyebrows & eyelashes decide to abandon ship??? If you listen closely you can hear the sigh of utter disappointment. However, I am sporting a nice start of peach fuzz on the noggin. It’s very translucent. I can’t tell if I’ll be completely grey or the natural blonde I’ve always wanted.

Oh yeah, I did go swimming a few times this week.
Chlorine, I missed you so.

Friday, May 21, 2010

Claustrophobic’s Nightmare

Last week I was prepped for my radiation treatments at the Huntsman Cancer Institute at the University of Utah. The first step was having a mask made that covers my head, neck, and shoulders. The mask attaches to the table I lay on, much like having a CT scan or MRI. It keeps my head from moving and aligns my body in the same position for treatment. It also hyper-extends my neck to keep as much of my throat out of the field of radiation as possible, and my shoulders pressed back. The mask is made by placing a warm, wet, pliable plastic mesh over my face, and then it’s secured to the table. It shrinks as it dries, becomes tight, and conforms to my face. The longer you can lay there to let it dry, the better fit it creates. This took about 30 minutes.
It was so tight I could not open my eyelids and as you can see in the photo, it left indentations on my skin. I had to tell myself, “Just keep breathing.”


After the mask was dry enough to remove, I had 3 permanent markings (tattoos) placed on my body, they are used for alignment too. They are small dots that look like a mole or a freckle. It was not painful getting them, but the 2 on either side of my ribcage tickled and that was hard to sit through without flinching.

Wednesday of this week I had my simulation or dry-run for treatment. The therapist made sure the mask fit and everything was aligned where it should be. Then a series of X-rays were taken. All systems go.

Yesterday was my first of 20 treatments. After changing into a flattering hospital gown, patients wait in a gender specific waiting room. The therapist comes to get you when they’re ready and walks you back to the treatment area. Prior to treatment, I have to stop at a desk where my patient information and photo is displayed on a computer screen. I have to tell the therapist my last name and date of birth. I can see why this precaution is necessary. Hordes of people must by trying to sneak in for some free radiation. Ok, I understand it’s to make sure they have the correct patient, because all us bald heads walking around in hospital gowns look the same and that could cause some confusion.

Once I’m aligned on the table and the mask (which by the way, I taking suggestions on what to name it) is secured, the therapist leaves the room. The machine itself is a large arm that rotates around me. I get a low dose of radiation to my back and one to the front of my chest. The whole process is about 2 minutes long and it’s very loud & noisy. Even worse is the music they play in the room, one day it was country and I have no idea what the crap I was listening to yesterday. I miss my iPod for those 2 minutes of my life.


Here’s an observation I’ve made during my visits. While in the waiting room, it’s very obvious that many of the other patients are smokers. I’d guess 1 out of 3 reek of cigarette smoke. You know they’re patients for radiation because they’re fighting off some nasty disease too, but at the same time they’re putting themselves at risk for another one. It’s like a skin cancer patient jumping into a tanning bed everyday. What the hell? I did find the 70-something year old patient lounging around in his SpongeBob Squarepants jammie bottoms pretty cool. He made my day.

Friday, May 7, 2010

Luminous Beings - Part II

Leia: I love you.
Han: I know.

I had a love/hate relationship with my PICC line, Han. Hated him at first, then he grew on me, and finally, I came to love him for the mere fact that he prevented me from being stabbed with a needle every week of treatment. Now that chemotherapy has been completed, and the PET scan results were excellent, it was time to say goodbye to Han. It's been a good three months buddy.
Now I'm going swimming.

Ready, set, pull. Gross huh?
It was completely painless coming out.


As for the results of the PET scan, the report indicates there is no significant residual activity identified within the mediastinum (marla), no new areas of abnormal PET accumulation.
Or just look at the pictures.
February 5, 2010
Three months and a myriad of chemicals later...
May 5, 2010

Wednesday, May 5, 2010

Luminous Beings - Part I


Luminous. Sounds better than radioactive. I had a PET (positron emission tomography) scan today, which shows exactly where the remaining cancerous cells are located. This information will be used by my Radiologist to map where the radiation is needed. The PET scan itself is, for the most part, painless. Preparation begins 24 hours prior to the scan. Following lunch, I was forbidden to eat carbs, sugars, and caffeine, only proteins. I had to avoid exercise & strenuous activity as well...ok, if I must. After a protein breakfast, it was nothing but water.



My appointment was at 11:30 am. Upon my arrival, I was presented with a tasty beverage consisting of Crystal Light Lemonade & iodine, the oral contrast. Just delightful, much like the glucose drink when testing for gestational diabetes. Chug it as best you can, leaving 1/3 of it for later.

Afterwards, I had to sit in a small room in a comfortable recliner. The experience is very new-age-ish: dim lighting, warm air, relaxing music (I highly recommend taking your own), a small water feature, and my personal favorite, lavender. A Q-tip is dipped in essential oil of lavender & placed beside you. It's amazing the calming effect something so simple can have. Then a radioactive solution was injected in my vein. I had to wait about an hour for my body to absorb the solution. The cancerous cells of a tumor will appear on the scan bright or luminous.




Minutes before the scan, I had to finish the remaining glucose drink. While the scan took place, I had to lay (or is it lie, I never remember) still for 30 minutes. During the scan you can listen to a cd of your choice, no iPods allowed. It was easy to fall asleep during this time, as the scanner makes a soft whirling noise. That was it. I am literally radioactive for the rest of the day and will be emitting radioactivity. I was advised to stay about 6 feet away from people. Next time, (I'll be doing this again in 3 months) I'm going to take a tour at Hill Airforce Base or walk around Dugway, just for fun.

Tomorrow I meet with my Oncologist for the scan results and possibly say goodbye to Han.


Wednesday, April 28, 2010

Dr. Evil

I'm only kidding, he's not evil at all. I met my Radiologist/Oncologist Monday. My radiation treatments will begin in about 2-3 weeks. I will have another PET scan next week to see if there are remaining cancerous cells. Following that test, I will have a planning session where the positioning of the radiation on my body is determined. Side effects from this treatment can be a sore throat & heartburn due to the location of the treatment. Long term side effects can be a secondary cancer. I will receive 20 treatments, Monday-Friday for 4 weeks. The actual procedure, or laser, will be a low dose of radiation for about 2 minutes each day.

After we finished the consultation, and my Radiologist was walking us out, he asked if I had any other questions. I'm not sure why I even thought of this, but I asked him if he were in my shoes, would he go through with this treatment? He laughed a little and replied, "I have been through it." He had Non-Hodgkin's Lymphoma. Despite all my anxiety & hesitation about this, I know I'll be in good hands.

Did I mention tomorrow is my last day of chemotherapy? I'm breaking out the last of my hoarded Reese's peanut butter eggs.

Monday, April 19, 2010

Kick-the-can anyone?

Let's get a few items of business out of the way. To my knowledge, no Nitrogen Mustard has been located, so we'll just move forward without it. My red & white blood counts are getting very low. I'm not exhausted & still functioning as normal, hopefully, I can avoid a transfusion altogether. I still have my eyebrows & eyelashes, they didn't fall out. If everything (my body) could just hang in there for 2 more weeks, this will all be over with soon.

To alleviate some apparent confusion, yes, I am totally bald.


So the big question, how am I feeling? Let me tell you. I have thoroughly enjoyed the onset of spring and with it, the warm weather. It recharges me, much like the scent of chlorine. I've spent several days working in the yard when the munchkins allow it. Dividing & transplanting, pulling a few weeds but mostly the encroaching grass in the flowerbeds, it's all therapy to me. I watched my parents & grandparents work in their yards, it was inevitable that I'd become just like them.

I did not appreciate yard work (much like dark chocolate) until I was an adult. I hated pulling weeds as a kid. Why would I enjoy it when there was that weird clown with a hat sprinkler to run through, dirt hills to ride our bikes on and kick-the-can to be played? I'm either that old, or we were just that cool. During the age of Atari and before every toy was battery-powered, we played kick-the-can.

Monday, April 12, 2010

Pardon me,



It’s difficult to believe, but there is a shortage of Nitrogen Mustard. This is one of the, ever so lovely, components in my chemotherapy. When I arrived Thursday, the beginning of my last cycle/round of treatment, I was informed that there was a little problem.

I’ll back track a little to explain. My presentation of Lymphoma is unique. Marla, my mediastinal tumor for those of you now joining us, went all out and had to be large & bulky. As such, my Oncologist felt it was best to treat me with the Stanford V regimen. This includes Nitrogen Mustard, Adriamycin, Bleomycin, Vinblastine, Vincristine, Etoposide, and Prednisone. Once a week, I get a specific combination of drugs injected in my PICC line. It takes one cycle (4 weeks) to go through the different drug combinations, and then repeat. This treatment is completed after 3 cycles. Most Lymphoma patients are now treated with the ABVD regimen, which includes Adriamycin, Bleomycin, Vinblastine, and Darcarbazine and 4 cycles long. So what’s the big difference? Stanford V has lower amounts of Adriamycin and Bleomycin. This lowers my risk for a secondary disease such as Leukemia or breast cancer.

There is just not enough demand (I guess that’s a good thing) for Nitrogen Mustard, as it is no longer being produced fast enough, if it is being produced at all. My Oncologist was unable to locate any after calling all over the country. My response to treatment has been so successful, that maybe skipping this one won’t make much of a difference. That’s what I hoping for. I still marvel at medical advances. I try not to think too much about how chemotherapy was really developed. I like to imagine a group of bored scientists going out to Utah’s west desert, digging up some dirt, extracting some chemicals from it and deciding to inject them into cancer patients to cure them. Fight poison with poison.