Tuesday, November 11, 2014

My Gratitude

Thank you to everyone who helped me through this journey!

Thank you to the UC Davis medical staff and everyone who was a part of my diagnosis and especially my healing process.


Thank you to local businesses for donating art supplies, and for occasional discounts (this is by far from a regular occurrence, but when it happened it was a mini miracle!)


Thank you strangers for offering kind words and complimented my baldness, and for survivors sharing their stories with me.


Thank you friends and relatives for visiting me, sending gifts and cards and texts and emails, chatting and commiserating with me, "liking" my Facebook posts, and leaving words of encouragement through Facebook and blog post comments.


The biggest THANK YOU THANK YOU THANK YOU goes to my family for taking me to every doctor and chemo appointment, crying with me, putting up with my shenanigans, running errands, babysitting me on chemo weekends, and supporting me emotionally, mentally, physically, and financially.


I honestly could not have gotten through this without everyone's love and support!


Hugs!

Monday, November 10, 2014

My Hospital Adventure 2.0


Hello, my friends! I am glad to report that my days being held hostage have come to an end. Five days in isolation while my captors demanded a ransom of at least 500 neutrophils and no signs of fevers or infections.

Now that I am free, I can finally tell my tale. My story begins on a beautiful, autumn afternoon...



Monday, November 3

1:00 PM: After waiting for nearly a week, I finally received a phone call from my oncologist to report my PET scan results (she had contracted a cold, which is why she couldn't call earlier). Great news! My lymph nodes looked great and we celebrated my completion of chemo! However, my lungs looked hazy and my onc wondered if I had any pneumonia symptoms. Except for a dry cough, which I've had for months, I felt fine. My onc and I suspected Bleomycin—one of the drugs I received as part of my chemo regimen—was the culprit, since it often causes lung damage. Oh joy. Hopefully my lungs will repair themselves over time.


I said farewell to my oncologist, knowing we would meet on Thursday to discuss my post-chemo care in more detail. I also wished her a speedy recovery.


3:20 PM: A massive headache developed, which I suspected was because I hardly ate or drank anything all day since I was anxiously awaiting my oncologist's call. On a whim, I took my temperature. Never can be too careful, especially with pneumonia lingering as a possibility.


Temp = 100.9 ºF


Yikes. But I didn't want to call it in. I figured, let's eat some food and drink some water. That should take care of the headache and hopefully the fever. I could have taken Tylenol for the headache, but it would also reduce the fever and interfere with future temp readings. During the Great Belly Button Fiasco (GBBF) a nurse chastised me for taking Tylenol for that very reason. Things are more complicated as a chemo patient.


I continued to monitor my temperature and created a variety of excuses to delay calling the Cancer Center.


4:00 PM: 101.2 ºF

I should take a shower. If I end up in the ER tonight, I should at least be clean.

4:30 PM: 101.2 ºF

That shower was really hot. I need to cool down.

5:00 PM: 101.8 ºF

No no no no no. I'll just wait until 6:00 PM.

5:30 PM: 101.5 ºF 

See! My temp is already going down.

6:00 PM: 101.9 ºF

Damn it.
I called the After Hours Urgent Care line and left a message with the receptionist.

6:15 PM: The oncologist on-call called back and recommended I report to ER for precautionary tests. *Sigh.* At least I took that shower earlier.


6:30 PM: "Hi, Mom and Dad! Wanna accompany me to the ER?"


7:15 PM: Parents pick me up and we're on our way!


8:00 PM: Checked into ER. Nurse took my vitals.

Temp = 98.6 ºF
Great. I felt like the girl who cried wolf. 
Since I'm a chemo patient, the nurse listed me as a higher priority and gave me a mask to wear as a safety measure.

My parents and I sat down in waiting room...and waited. During the GBBF I was called to triage within three minutes. This time, without an active fever or a known infection, we had a longer wait.

I predicted I would have some tests, everything would look hunky dory, and I'd be home by early morning.

9:30 PM: Taken to a room. Dr. #1 listened to my story and gave me a quick exam, then explained that they treat chemo patients with fevers very seriously. He ordered a complete blood count (CBC), blood cultures, a urinalysis, and chest x-rays. The attending, Dr. #2 came by to confirm the tests I needed, plus informed me if my neutrophils were under 500 then I would have to stay, and between 500-1000 is a gray-zone area.


Nurse A placed IV in left arm. Blood drawn. Given 1 liter of IV fluids. Hello saline, my old friend.


11:00 PM: Informed that my WBC count is 0.9 and I need to be admitted. After talking about numbers in the hundreds, 0.9 seemed especially low. 
I conceded defeat and changed into a hospital gown. If this was anything like the GBBF, then I would be stuck in the hospital for several days.

After that, things got legit. 
With a weakened immune system, anything and everything was a threat to my life. To reduce germ exposure, I was instructed to wear a mask at all times (which I occasionally disobeyed because it was so stuffy). All docs, nurses, and personnel had to wear masks whenever they entered my room. 

Two different IV antibiotics were ordered: Vancomycin and Cefepime. The nurse hooked me up to machines to measure my heart rate and blood pressure. I was given some blankets to keep me warm.


Then, the sliding glass door to my room was pulled shut.


Hospital Adventure: Take Two


Tuesday, November 4

12:15 AM: Sent parents home. They had work in the morning, and I didn't anticipate getting a bed for several hours. (Meanwhile, Fate laughed in the corner. Ha.Ha.Ha.)


Initial attempts to sleep were unsuccessful.


3:00 AM: Dr. #3 informed me that the Oncology/Hematology ward had no room available, so the Internal Medicine department would accept me...as soon as they had a bed available. He also congratulated me for finishing chemo. =)


Side note: Throughout his visit, I admired Dr. #3's hair. He had a buzz cut, thick and full and nothing like the Gollum sprigs currently growing on my noggin. I hope to have hair like his one day...



December 2011, days after the charitable buzz cut.
I can't wait until I my hair is this thick again!

November 2014, note how excruciatingly thin my hair is,
and the lack eyebrows and eyelashes.

Back to my story.


Lying alone in a room with nothing to do can lead the mind overthink everything. As I contemplated my predicament, I was not convinced 0.9 was as low as I initially thought. When Nurse A came to check my vitals, I asked what 0.9 really meant. He confirmed that those numbers should be multiplied by 1000. After doing the math I realized I had a 900 blood count, which is at the high end of the "gray zone" and super close to 1000, so did I really need to be admitted? (Yes, I did. I confused my total WBC count with my neutrophils-only count. Then again, nobody informed me that my neutrophils were 30 out of a minimum 500, which would have made my hospitalization feel more justified and less hellish.)


A moment of happiness in my dark dungeon: Nurse A taught me how to raise and lower the gurney backrest. I set the backrest aaalllll the way down flat so that I could maneuver onto my stomach to sleep. Ahhh! So happy! A smile twinkled across my face, which was hidden under a stupid mask. (Bye-bye mask.)

I'm a tummy sleeper. I can sleep on my side if I have to. Forget about sleeping on my back. As soon as I flip onto my tummy, I slip into blissful unconsciousness...
Even though it wasn't ideal and the IV in my arm was uncomfortable and patients in the other rooms were moaning in pain and a nurse was asking a new patient if he recently took crack...didn't matter. I was on my tummy and as content as one could be given the situation.

8:00 AM: Time for morning rounds! Attending doc and her four residents (including Dr. #3) came to examine me. My captors went to great lengths to keep their identities hidden by wearing overprotective gear: blue face masks, yellow paper aprons, and purple gloves. At the end of my interrogation, one of the residents (Dr. #4) informed me she would be my doc for the day, and another one (Dr. #5) offered a few words of sympathy. I don't remember exactly what she said, just that it was comforting, and I appreciated her extra effort.


9:00 AM: My potassium levels were low and I needed take a supplement. Bananas wouldn't count. After reviewing my options (3 hours of IV potassium, a giant horse-pill, or foul-tasting liquid supplement) I settled on the liquid, which I had once before during the GBBF. Nurse B said she could mix it with orange juice to mask the salty, metallic flavor.



This is what happens when you combine 
regular schmegular orange juice with liquid potassium supplement.
It looks like a second grader's volcano experiment gone wrong.

It tastes like horrifically salty, artificially flavored orange soda.

Nurse B also gave me a heparin shot. In the stomach. Yeouch! Burned like a bee sting. Not as bad as a navel piercing, though. Pain diminished within a minute.

12:00 PM: Nurse C came to transfer me to a new room, and I was relieved because I had been waiting for so long...and disappointed because she moved me to a different ER room. Ugh! I went from being stuck in limbo to being stuck in a different place in limbo.


One benefit of moving: I no longer had to wear a mask unless I ventured outside to use the restroom. Everyone else who entered my room had to wear a mask, and my door had to remain closed.


12:30 PM: I felt a little peckish. I hadn't eaten anything since the night before and completely skipped breakfast (other than that fabulous potassium-orange "smoothie." Meh. I was too riddled with anxiety to eat breakfast anyway). We didn't know where my lunch was or if it was coming at all.


Nurse C was fabulous! She pulled some strings, got a voucher, and personally went down to the hospital cafeteria to get a turkey sandwich for me. As it was, with anxiety and irritation interfering with my normal hunger instincts, I only ate half the turkey sandwich and had a few sips of apple juice. When my lunch arrived thirty seconds later, I took one look at it and said, "Nope." Nurse C offered to refrigerate my sandwich for later.


The IV in my arm also started to leak, seemingly because one of the cap-screws near the puncture site had come loose. Nurse C adjusted the connection and voilà! All was better.


I hate waiting. Waiting is stupid.

Except, it wasn't. Major frustration set in. I hadn't been assigned a bed and I had no idea when or if it would happen. I couldn't stop thinking about being symptom free and 
my WBC count being so close to 1000. And I was bored. And lonely. And had no cell phone reception. And my texts weren't going through. And Internet was slow. And I really really really wanted to go home. And I wondered, "What's the worse that would happen if I put on my normal clothes and walked out of here? Probably wouldn't look too stellar on my patient record. Or to the insurance company. Might as well stay and wait this out."

3:00 PM: I asked Nurse D (there were a lot of shift changes while I was in the hospital) what it would take to be discharged at this point. I semi-joked, but was actually completely serious when I said, "I feel like at this rate I'll be discharged from the ER before I get admitted to a room upstairs." (Apparently this did not go over well. Later, Nurse F and Dr. #4 separately asked who told me I would get discharged from the ER and I told them no one, just my overactive imagination. I really hope no one got in trouble for my sleep-deprived, frustration-induced, misinformed assumption.)


Nurse D told me the doctor said I could leave upon two conditions: 1) I remain fever free for 24 hours, and 2) that the blood cultures develop no signs of infection. No mention of neutrophil counts needing to be higher. I started hoping the earliest I might leave was 11:00 PM, because the blood cultures had a minimum 24-72 hour incubation period, and apparently I had the mildest of mild fevers (99.something ºF) the night before. I was grateful to have a time to look forward to, totally understanding that things could change. I hate uncertain waiting periods.


Nurse D also attempted to give me another heparin shot. Wait. What? I already had one of those. I asked her what the purpose was (I've become better at being a proactive patient and inquiring what each med or treatment is for). Nurse D said heparin was given once every eight hours to prevent sedentary patients from getting blood clots, but as long as patients are mobile, they didn't need it. I asked if occasional walks to the bathroom counted as patient mobility or, if not, offered to do ten jumping jacks to avoid the heparin shot. She said walking to the bathroom was fine. From that moment on I refused every heparin shot a nurse dared suggest.



Pointing to the bruise the heparin shot caused.
Above my belly button, my "division sign" scar from the GBBF.
Next to that, a freckle.

4:00 PM: My IV started leaking again, this time from the vein. Nurse D pulled out the IV and we decided it would better to access my port. 

Due to the ever-changing shifts, Nurse E came to access my port...which he failed. Twice. I've never had a nurse fail to access my port before, and now I know what that failure feels like: a sharp, rusty nail impaling the chest.
Another nurse finally accessed my port. First try. No pain (other than the mild prick of the Huber needle itself).

7:00 PM: Dinner arrived. Nope.


8:30 PM: Parents and sister Julie visited me. Omg! Relief! People! I missed people all day long!


10:00 PM: Ooh! Hunger! Finally. But my family ate my dinner (at my insistence). I requested the other half of my sandwich. Perfection.


11:00 PM: No lab results. No release. Family returned home. I requested meds to help me sleep.



Wednesday, November 5

3:30 AM: Nurse F had good news! (Yippee! Can I go home?) A bed was available and they were ready to transfer me. (Oh. Okay. That's better than being stuck in the ER.)


Finally, after THIRTY HOURS!!! in the ER, I was transferred upstairs to the Accelerated Access Unit.


The AAU is basically the Hufflepuff ward of the hospital; they accept everybody! They're also another limbo zone, a holding place for patients until beds become available in the specialty unit the patient should be in. For example, I should have been the Oncology/Hematology ward, and my next door neighbor should have been in the Orthopedic ward, and another patient should have been in the ICU.

One benefit of being neutropenic: I got my own room.


Internet and cell phone reception = excellent!

Same rules as before applied: I could be mask-free in my room, had to wear a mask if I ventured out. Hospital personnel needed masks while in my room. Visitors could be mask-free (or maybe they were supposed to wear a mask or I was. Oh well).

Not pictured: next to my room was a cart full of masks, gloves, and paper aprons.


8:00 AM: Daily visit from Dr. #4. She informed me my blood cultures showed no bacterial growth so far and my neutrophil count was at 70. This was the first time I learned how low my neutrophils were and it made me feel a whole lot better about being incarcerated. Yeah, 70 out of 500 is dangerously low. 


Source

Over the next few days, seven different nurses took care of me while I was in the AAU. All of them were super friendly and nice and low key.

2:00 PM: Sisters Julie and Christine visited me.


3:30 PM: I couldn't help wondering about my Thursday appointment with my oncologist. With my neutrophils so low, it was unlikely I would be discharged before my appointment. If it were a normal oncology visit, I wouldn't care. But this was my big post-chemo follow-up. 

I asked Nurse G if I could arrange to keep my appointment because the Cancer Center is literally across the street from the hospital. I was willing to wear a biohazard suit if I had to. Nurse G recommended calling the Cancer Center for their opinion and promised to talk to my current docs. Cancer Center receptionist suggested I keep my appointment and consult my docs the next day.

5:30 PM: My oncologist is pure awesomeness. She stopped by after work to visit! Love her, love her, love her!

The most important question I had: Am I officially in remission? 
I had not yet heard her use the word "remission," so I was hesitant to mention anything to friends and family and Facebook.
Her answer, "Yes, you are in remission." HURRAH!!!!
We chatted for a bit and decided to reschedule our appointment, since we'd have to meet anyway after my hospital adventure.

9:00 PM: My friend, Ryan visited me and we watched an episode of House, M.D

Watching medical shows is weird after you've lived through the drama yourself.


Thursday, November 6


Neutrophil count: 320

Woot! That's over a 400% increase in 24 hours! At that rate, I expected to return home by Friday.




7:00 AM: During my daily doc visit, I asked if I could get a Neulasta injection to boost my WBCs. Dr. #4 said she'd look into it. Blood cultures still clear of infection.


11:00 AM: Julie and Aunt Debbie visited me.


1:00 PM: Michelle visited. Sneaked in a McDonald's chicken nugget Happy Meal for me. My d
ocs had placed a restriction on my diet: low microbial only. Meh. McDonald's tastes better. Nurse G brought in my special low microbial lunch and caught us ketchup-handed. She was cool with it (phew!), especially since hospital lunch looked as appetizing as the other gruel they attempted to feed me. (I exaggerate. I mostly had no appetite for anything. Only ate one and a half chicken nuggets and five French fries.)

4:00 PM: Three days without bathing. Time for a much-needed shower.


Preparing to shower. Gotta keep my port dry.
Nurse H thought I would enjoy the "biohazard" plastic bag. 

She was right!

5:00 PM: Dr. #4 tells me instead of Neulasta, my oncologist recommends Neupogen. The two are similar, both boost WBC production. One difference is Neulasta is given once every two weeks and Neupogen is given daily. With my neutrophil count rising as quickly as it was, I decided to hold off on the injection.


8:00 PM: Spiked a 102.3 ºF fever. Weird. Except for feeling flush behind my ears, I felt no different. Nurse J gave me Tylenol to decrease the temp. Dr. ??? ordered more tests as a precaution. Round two of blood cultures, urinalysis, and chest x-rays. 


Please, please, please, please, please don't let this prolong my hospitalization.



Friday, November 7

Neutrophil count: 414


Crap. Should have gone with the injection.


Nurse J was surprised I was disappointed the number increased. When the goal is 500, 414 is disappointing. With the previous night's fever spike, I was doomed to another day.


7:30 AM During my morning consultation, this time with Dr. #5 (the one who offered the kind words on Tuesday), I requested two things: 1) The Neupogen injection and 2) Could I have my complete blood counts (CBC) tested earlier? Although, it wouldn't have made a difference since the random fever reset the 24-hour timer. 


9:00 AM: Upon admiring autumn's glorious colors from my fourth-floor window, alternate escape plans emerge...







If only I knew parkour and how to hot-wire a car. I spend the day writing in my journals and surfing the Internet for How-To articles.


5:00 PM: CBC test done early, as requested.


However, Dr. #5 said I would still have to stay overnight. Discharge wasn't until morning.


8:00 PM: Neupogen arrived. Nurse J injected me. Again in the stomach. Practically painless compared to the heparin shot.

9:00 PM: Neutrophil count (based on 5:00 PM test): 1200! Yay!

No fevers for 24 hours: Check!

No bacterial growth in blood cultures: Check!
Neutrophils above 500: Double check!

As long as I made it through the next twelve hours, I would most likely be free in the morning. No broken glass or parkour required. Fingers crossed!!!



Saturday, November 8


4:00 AM: Another blood draw for a CBC.

Neutrophil count: 8000!!!!!


Wow! My body really responded to that Neupogen.


9:00 AM: Attending doc, plus residents Dr. #4 and #5 came to announce the good news: I WAS FREE TO GO HOME!!!


10:00 AM: Given a final infusion of IV antibiotics.


11:30 AM: Parents arrived to pick me up and take me home!


For the next few days I will be on oral antibiotics. My docs are treating me as if I had pneumonia, just in case. Whatever. FREEDOM!!!!!


So that's my tale. Five days in the hospital with zero signs of infection, thank goodness. My docs' best guesses are that neutropenia caused the fevers and Bleomycin is responsible for the hazy lungs. At least it's not pneumonia. And best of all,



Thursday, November 6, 2014

My Good News: REMISSION ACHIEVED!!!

I received official word from my oncologist yesterday:

I AM IN REMISSION AND CANCER FREE!!!

So long, lymphoma. FarewellchemotherapyAuf Wiedersehen, Reed-Sternberg cellsAdieu, Power Port!

Let the celebrations commence!

Saturday, October 25, 2014

My Chemo Course

Welcome to Café Chimio, where we serve the finest chimiothérapie cuisine!

Today our special is the ABVD full course chimio delight, a classic choice for our Hodgkin Lymphoma patrons. Each entrée is served with complementary nausea, vomiting, hair loss, mouth sores, and a low blood count which leads to fatigue and an increased risk of infection.

Patrons may experience all, some, or few side effects to varying degrees of intensity. Sorry, no substitutions can be made.


When you arrive, our host will escort you to a private recliner. One of our expert servers will access your port-a-cath and flush it with prepackaged saline syringes in preparation for your chemo treatment. Patrons with a sensitivity to the prepackaged saline may request hand-prepared syringes.

Our servers are happy to accommodate your needs. Do not hesitate to ask for anything, whether it be a warm blanket, a pillow, a plastic puke bag, a light snack or drink, or extra antiemetics. We encourage feedback, so please also report any worrying side effects or discomfort.

While you wait between each course, we will serve you a constant vintage Saline Drip.

For an appetizer you will begin with Emend. This delightful refreshment will ensure you enjoy your full chemo course without side effects like nausea or vomiting. We want our guests to enjoy their treatment while they stay with us.

A second appetizer is a blend of Zofran and Decadron, more antiemetics to ward off nausea and vomiting.


As a palate cleanser, you will receive Tylenol to avoid potential headaches caused by Zofran and some of our main courses. You'll be glad you added it!


Let the main courses begin!


Your first entrée will be Adriamycin, also known as doxorubicin. Some of our patrons affectionately call it "The Red Devil." A server will sit by your side for ten minutes and carefully push small increments through a syringe into your IV. This decadent drug is lightly seasoned with possible heart damage. One course is enough to make your hair fall out! It may also cause savory mouth sores. You may notice a distinct chemical smell or aftertaste. When you sense this, you know Adriamycin is working its wonders! Another marvelous feature is that within a few hours, during your next trip or two to our toilet amenities you will excrete pink or orange urine.



Next, you will be served Vinblastine, also delicately hand-pushed through a syringe in small increments over the course of five or so minutes. This zingy medication is sautéed with peripheral neuropathy that will make your fingers and toes tingle. Painstakingly layered with nervous system changes including sensation changes, muscle weakness and pain, loss of coordination, and jaw pain. Other attributes include constipation and/or diarrhea. A pinch of headaches and a dash of depression perfect the Vinblastine side effect medley.


The third course, Bleomycin is served over thirty minutes as an IV drip. Garnished with possible lung damage, patrons may notice coughing and shortness of breath. Topped with possible chills, fever, and shaking, which subside after forty-eight hours. Many patrons report their skin darkening—who needs to visit a tanning salon? Additional side effects such as itching, shaking, and skin rashes are whipped together to perfection. Although this drug does not contain peanuts or shellfish, a few guests have reported allergic reactions. Our servers are well-prepared and will be on the lookout for any nasty reactions.


The final course, Dacarbazine is slowly served over sixty minutes, also as an IV drip. Like the previous courses, this lovely chemical also causes nausea, vomiting, and a low blood cell count. Headaches, body aches, weakness, and sinus congestion are simmered together for a twenty-four-hour flu-like experience. Sprinkled with just the right amount of metallic aftertaste.



When your infusion is complete, our experts will flush your port-a-cath to ensure you are ready for your next visit.

Before you leave, please stop by the Pharmacie. Your maître d' can recommend a number of take-home antiemetics (in pill form) to ward off nausea in the days to come and, if needed, can prescribe stronger pain relievers and medications to reduce symptoms as they arise.

For lesser aches and pains, many over-the-counter remedies can help, such as Tylenol for headaches and moderate pain (avoid NSAIDs). Laxatives such as Senna and Colace can overcome constipation.

During your many visits to Café Chimio, your maître d' will frequently check with you to guarantee your satisfaction and to monitor any pesky, severe, and/or long-lasting side effects. 

Be sure to immediately report any severe effects to your maître d', including but not limited to a fever over 100.5 °F, abnormal bleeding, and unrelieved pain.

Source: UC Davis Comprehensive Cancer Center Chemo Class slide show


Bon appétit!


❧   ❧   ❧   ❧   ❧   ❧   


Sources
  • Notes my oncologist provided me during my first consultation
  • Individual handouts about Adriamycin, Bleomycin, Vinblastine, and Dacarbazine provided by the UC Davis Comprehensive Cancer Center


Further Reading

LymphomaIngo.net: ABVD
RxList: Adriamycin
RxList: Bleomycin
RxList: Vinblastine
RxList: Dacarbazine


Disclaimer

Every person is different and their experiences will differ from mine. Always discuss your particular symptoms and concerns with your doctor.


I did not mention every side effect listed on the handouts and websites I consulted. Nor did I personally experience every side effect stated on this page. For example, I never developed mouth sores or a skin rash. I definitely experienced infectionfatiguemuscle aches, nausea. The peeing orange/pink thing is totally real with Adriamycin (makes one's urine smell extra bad, too. Blech). Some side effects I experienced weren't listed anywhere, such as the horrific mouth burning and overactive menstrual cycle. As for heart and lung damage, the odds are in my favor against those and so far so good. My oncologist will continue to monitor me in the years to come. 

You can read more about my personal side effect experiences through My Side Effects series

You can read about other ABVD side effects by clicking on the links above.

Friday, October 24, 2014

My Twelfth Chemo Costume: Katniss Everdeen

Twelfth and final chemo infusion. Yay!

Super strange. And SUPER EXCITING!!!


Also, not very eventful. No anticipatory nausea or vomiting, thank my Lucky Charms. Ditching prepackaged saline in favor of hand-prepped saline proved the biggest help. I still had a few minor bouts of nausea, took a decent nap during infusion time, slept most of the day when I got home, and my appetite is currently nil.

BUT I'M DONE!

Aaalmost, still have a couple weeks of side effects and fatigue to battle through. No biggie. Been there, done that.

Next week I'll have a PET scan to make sure the all nasty cancer cells are defeated, and hopefully soon thereafter I can officially announce that I am a survivor!


Much like the inspiration for my twelfth costume: 


Katniss Everdeen







Oops. Katniss is a better archer than I am.

That's okay. I've got my costumes.

My incredible infusion nurses: Cheri, Mary, Jayne, and Terri.


For Funzies:

(Other favorites include: episode 6, episode 8episode 11, and episode 13)




Monday, October 13, 2014

My First Chemo Costume: Time Warped

In keeping up with my out-of-order crazy tire swinging, here are some pictures and reflections from my first chemo treatment on May 8th. 

Wow, has the time swung by!

–   –   –   –   –   –   –   –   –   –

10:00 AM: Arrive at outpatient infusion center.

Only two days before my first infusion, I had my port placement surgery. Obviously my chest still felt incredibly bruised and sore from having been cut open and a small foreign object crammed inside it. 

I had not yet been able to get my prescription for lidocaine cream, which numbs the skin before a nurse jabs through it and the "soft top" (high grade medical plastic) septum with a needle to access the port. 

Source
Source

Add to my predicament a sharp fear of needles, and you've got a recipe for a hurricane of tears, which I did my best to hold back.

My nurse for the day, Cheri was amazing. She listened to my concerns and talked me through the procedure, per my request. As I braced myself for super intense pain— squeezing Mom's hand, closing eyes, tissue ready, big deep breaths, big deep breaths—Cheri accessed the port faster than a dart hitting a bullseye. 

Whoa. No tears at all. In fact, I distinctly remember thinking, "That was easier than getting a navel piercing." 

(Note: I have to give praise to all of the nurses at the infusion center. Cheri, Terri, Mary, and Jayne are exceptionally skilled at accessing those ports with precision and speed, which leads to minimal discomfort even when I haven't used the lidocaine cream.)

With the drama of needles and port access out of the way, my first infusion continued.

During the first hour while anti-nausea meds dripped into me, Cheri gave me and my mom a quick tutorial on each of the four chemo drugs I would receive (AdriamycinBleomycin  Vinblastine, and Dacarbazine) and their side effects. (Click here to read more about my chemo course.) 

Then, chemo-ification time came! Usually I receive the drugs out of ABVD order. It's more like AVDB or AVBD. The order doesn't matter, as long as it's the correct drug and the correct dosage.

Adriamycin and Vinblastine come in syringes and the nurses "push" each drug in small amounts into my IV. Bleomycin and Dacarbazine hang from the IV pole and are pumped through automatically.

Total chemo time:
Adriamycin: 10 minutes
Vinblastine: 5 minutes
Bleomycin: 30 minutes
Dacarbazine: 60 minutes

Nurse Cheri and the four chemicals she's about to infuse me with.

You will note a lack of costume. The advice I received was to "dress comfortably," and dress comfortably I did. The idea to dress in costume originated sometime near the end of my first treatment.

Almost done for the day! (Oh my goodness! I still had hair back then!)

2:00 PM: First infusion DONE!

I was surprised I felt as good as I did when I walked out of the infusion center. Mom and I went grocery shopping to pick up some grub for the weekend.

Afterwards, I celebrated my first successful chemo infusion by dressing up and nibbling on a piece of pie. Because everything is better with pie. And steampunk gear.


My Facebook friends might be familiar with this lovely photograph:



It's all smiles and silliness for a little while...

By 4:00 PM the chemo caught up with me and my body felt as if it had gone through a blender.

Yuck.

Just…yuck.


Yet I still tried to attend a small family gathering to celebrate my brother-in-law's birthday. This was the result:


I've used this pic before, but it captures the distress of chemo day.

My mom and I left the party early, and I sat in my shower for a solid thirty minutes letting warm water soothe me. I had an evening snack of fruits and veggies, and my body felt better. Lots of rest over the weekend also helped.



–   –   –   –   –   –   –   –   –   –

So, that was my first chemo experience. Of course, over the next two weeks there were a lot of side effects and gross days and ickiness that I'm glad are in the past.

I've adjusted over time and basically become a pro at it now.

Most chemo days have followed a similar pattern: wake up, apply lidocaine cream, rest/nap while getting infused, endure nausea, return home, sleep off the side effects the rest of the day and most of the weekend. Take pain relievers and warm showers as needed.

Also über important: Take anti-nausea meds on time.

It's weird to think I'm almost done, and also super relieving. The first treatment is rough because neither you nor your body knows what to expect, and it's only the beginning. Looking back is kind of empowering because Hell yeah, I did it!

Well, I've almost done it.

Only one more to go!

Thursday, October 9, 2014

My Eleventh Chemo Costume: Kermit the Frog Princess

My penultimate chemo treatment! Only one more to go!

I love shopping at thrift stores for costume pieces.

A few months ago I happened to find this gorgeous evening gown for $10 and it happened to be a perfect fit. When I told the sales clerk I planned to use it as one of my chemo costumes, she gave me a 50% discount. Yup, that's a $5 gown right there!

As pretty as the dress is itself, I couldn't help adding a little twist.


So, without further ado, I present Kermit the Frog Princess!


This princess has only one wish: for a banjo ukulele.

Frog princesses don't wave. They flail enthusiastically!


As for updates, everything is going smoothly. Side effects have been less severe than they were in the beginning and middle of my journey. I think my body is adjusting. Nausea is still annoying, but at least this time my breakfast stayed down! YaaAaAAaay!



Mahna Mahna, my friends!


Just for kicks and giggles, leaps and ribbits, here is one of my favorite Muppet songs:



Saturday, October 4, 2014

My Dark Moments

Tire swinging would not be complete without its dark moments. Except the monkey isn't swinging because she's fallen off and landed in a pit.

I once cried so hard that I made myself nauseous and almost didn't make it to the bathroom to throw up. I've also huddled up in a fetal position next to my coffee table because I had no energy to pull myself up to the sofa. I've cried in my kitchen, in my bedroom corner, in my sister and mother's arms.

With all of the side effects and everything else, depression happens. And life keeps going on. And that gets depressing because what the hell do you do when your finances spiral down the toilet, but you're too exhausted to work, and as grateful you are that your family is helping, you also mourn the lost aspects of your autonomy, and some days no matter how much you wish everything would just go away and life would be a bucket of rainbows you know that's just not possible. At least not right now. Not for a while.

When I was in the ER back in May, my nurse shared her mom's philosophy with me (her mom was a cancer survivor): 
It's okay to cry. You have to cry. Having a pity party once in a while does not mean you are weak. It means you are recharging. It means release. Getting stuck in pity mode for too long is not good; the party has to end sometime. However, neither is it good to pretend to be happy 100% of the time.

The darkness is temporary. It always passes.

Treasure the good days. Because they happen, too.

So climb back on that tire, little monkey, and keep swinging!



Thursday, October 2, 2014

My Tiny Tumor Adventure Part 3: Port Placement and Other Procedures

The final installment in My Tiny Tumor Adventure and all the tests, procedures, and whatnot leading up to and following my first chemo treatment. Basically the chapter between the beginning of my adventure and my brief hospital visit.

Short version at end of post.

Click here to read My Tiny Tumor Adventure Part 1: A Diagnosis Story.


Click here to read My Tiny Tumor Adventure Part 2: A Cancer Staging Story.


Quick Recap

April 30: Diagnosed with Hodgkin Lymphoma.
May 1: Met with my amazing oncologist.
May 2: Diagnostic tests confirm my cancer is Stage IIA.


Monday, May 5

A much needed night of normalcy. My sister, Michelle and I attended an awesome Ingrid Michaelson concert in Oakland.


Tuesday, May 6

10 am: Port placement surgery at the Interventional Radiology department.

A port is basically a little device surgically implanted under one's skin. A connecting catheter is also tunneled under the skin, over the clavicle bone, and guided close to the heart through a vein. This allows chemo to be administered safely (direct exposure to chemo can cause tissue damage if, for example, the chemicals contacted the skin) and more efficiently (the heart pumps the chemo throughout the body, and the blood in the heart dilutes the chemicals). There are, of course, other options for administering chemo. The port seemed the best for me.

Source
Source

This procedure was done under conscious sedation. Normally this means a "twilight sleep" which means the surgical team can communicate with the patient during the procedure, yet supposedly when the patient wakes s/he forgets everything. 

Well, since I'm slightly crazy/curious, I asked if I could be more conscious than sedated because I wanted to remember the procedure. The nurse grated my request. 

The memories are hazy since I was still sedated via IV. Mostly, I rested and occasionally opened my eyes. When I saw all the blue drapery around me I mentioned the fort a friend and I made last Christmas (I think my speech was too slurred to make any sense). The surgical team probably thought I was nuts. They've probably had sillier patients. As for the gorier details, there isn't much to tell. They used a local anesthetic, which stung each time they injected it (five or six times), but I was so loopy the pain was diminished. I also remember a lot of pressure on the right side of my chest as they tucked the port under my skin. Once the procedure was complete, I glimpsed an x-ray projection of my torso with the port implanted. I also mentioned pirates (the surgical hairnet/cap was covering my eye—like an eyepatch—and I asked if someone could fix it for me because my wrists were secured because they don't want patients Kermit flailing during the procedure, as if I would do ever such a thing). The whole experience was kind of cool. Glad I asked!

Afternoon: Infusion Center called to schedule my first chemo. I really wanted to postpone this until after my sister, Christine's 21st birthday because months before I had promised we would get cocktails together. I did not want that moment taken from me. Unfortunately, there were scheduling conflicts, yet I stubbornly insisted on keeping my moment.

Five minutes later: Oncologist called to convince me to start chemo ASAP. Despite some tears, I listened to her advice and scheduled my first treatment for May 8th.


Wednesday, May 7

9 am: MORE BLOODWORK! Because my blood counts need to be checked at least 1-2 days before chemo. Sheesh. Just take it all.

Aaaaand because I’m crazy, afterwards I play at the park with my sisters and nephew.

Queen of the playground!

All right, I’m not that crazy. I spent most of the time sitting at a park table. And I didn’t play so much as saunter around and take silly photos.

Cuts and boo-boos.
Long cut on neck = lymph node biopsy
Small cut on neck = catheter placement
Medium cut on chest = port placement


Thursday, May 8

10 am: First chemo treatment. Mom goes with me.

After thinking about it, I want to give my first chemo treatment its own post, so I'll be brief.

The infusion went extremely well, much better than I expected. That is until later that evening when my body felt as if it had gone through a blender. 

Mom spent night with me.


Friday, May 9

Felt surprisingly well. No nausea thanks to anti-nausea meds. However, also minuscule appetite. Juice was my friend. My amazing mom cared for me all day. 

Afternoon: Attended a "Chemo Class” with my mom and two youngest sisters, Julie and Christine. Learned about all the fun side effects I could look forward to. $#^†. Gonna take it easy, one day at a time.

Source: UC Davis Comprehensive Cancer Center Chemo Class slide show


Sunday, May 11

Celebrated Mother's Day with family.

Mouth burning begins. OMG!!! Like thousands of bees stinging the inside of my mouth!


Monday, May 12

Celebrated Christine's b-day despite feeling ill and lingering mouth burning because nothing was gonna stop me!!!


Tuesday, May 13

10 am: EchocardiogramAs I mentioned in Part 2, this test was required to establish a baseline for my heart's health because one of the chemo drugs I receive, Adriamycin can cause heart damage.

Mom accompanied me. One hour of ultrasound imaging and measurements of my heart. I was so exhausted, I was beyond caring that the male sonographer could see my very exposed chest. Wearing an open-front paper shirt/cover thingy proved pointless. Whatever. I closed my eyes and pleasantly recalled the time I visited Baden-Baden's Friedrichsbad (a nudist spa). 
(P.S. Don't worry. That link goes to the spa's totes appropriate (PG-ish) homepage. If you ever visit Baden-Baden, I highly recommend Friedrichsbad and the Caracalla Spawhich is more family-friendly (swimsuits required)).

2 pm: Biopsy post-op with ENT. Tiny’s scar was healing nicely. I thanked my ENT for his help during the diagnosis process.


Thursday, May 15

Follow up visit with oncologist to make sure things are going well. They are! (Relatively, speaking.)


Friday, May 16

8 am: Pulmonary function testAlso mentioned in Part 2, this test was required to establish a baseline for my lungs' health because the chemo drug, Bleomycin can cause lung damage.

Christine accompanied me. One hour of various exercises breathing into a tube, having measurements recorded by a computer, and feeling like an idiot the entire time. (At least I could wear my normal clothes.) I was terrible at following the instructions the technologist gave me. Inhale quickly, exhale slowly, vice versa, use your diaphragm, pretend you're blowing out a thousand candles, breathe in in in in in yourlungshavemorecapacitythanyouthinktheydoooooo, breathe out out out out out almost theeeeeeeeeere *gasp!* Great. Now let's do that five more times. 

The tech was a nice guy though. Fun to talk with. 

Weirdest aspect of the test: sitting inside a large, clear plastic box (to measure volume and lung capacity). The box was closed for only one exercise, but I had to stay inside it throughout the full hour of testing.

Source


Saturday, May 17

Intense back pain.


Sunday, May 18


And that brings us up to speed on the first month* of my odd little adventure with lymphoma. Phew! It was quite the whirlwind of appointments, a medley of miracles, and a whole lot of emotional tire swinging. 

Super grateful to all of my doctors for their prompt care, as well as all the other health professionals for helping me arrange appointments and complete needed tests. 

*Seriously. Only three and a half weeks transpired from my first visit with my primary care physician ("Hey doc, what's this lump in my neck?") to my first chemo treatment ("So long, cancer!")

–  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  –  
THE SHORT VERSION

May 6: Port-a-cath implanted to make chemotherapy easier and safer to administer
May 8: Had first chemo treatment
May 13: Echocardiogram
May 16: Pulmonary function test