Jan 30 update

My titles are getting less and less creative, bleh. 

Today had its ups and downs. 

Ups
- My oncologist emailed and said my bone marrow looks great and there are no problems there!  I'm still not sure what stage that makes this cancer, but I'm sure we'll know soon.
- Damien and I are more sure now in our choice of treatment here in Austin.  I discussed our decision with our oncologist and he's open to the idea of us getting a second opinion at big name hospitals in Houston.  However, he's sure that the course of treatment will be the same as what he is prescribing according to NCCN guidelines.  Treatment for Hodgkin's is pretty standard and it's been treatable since the 70s.  I have great confidence in Dr. S.
- My portacath was used for the first time today to give me IV iron.  I put some lidocaine cream on the port 30 minutes before treatment to numb the area. The area is still swollen and the nurse used a needle that was too short at first (3/4").  It resulted in saline being pumped under my skin rather than into my vein.  There was a ton of pressure in the area and she immediately stopped. She switched to a 1" needle and this time, the saline went into the vein and there was no discomfort at all.  I barely felt the needle pricks of the Huber needle, yay numbing cream!  There was a lady getting chemo there and she was reassuring me that I wouldn't feel a thing over time.  When her treatment was done, she completely forgot to let the nurse unhook her line from her port and started walking out while dragging the whole machine with her chest port. Like NBD.
- I found some slick hoodies at Costco for cheap to wear to chemo.  One of them has the sleeves with the thumb slits! I'm excited.

Downs
- I had a blood draw and ultrasound for the fertility treatments that I'm going through today.  It turns out my follicles aren't increasing in size and my estradiol levels are dropping.  I've been injecting myself daily with follicle stimulating hormones to up the number of follicles that will be ready to retrieve eggs from (and in turn, upping estradiol).  The doctor and his partner have no idea why my body isn't responding to the FSH drugs.  They've upped the dosage of the meds and we'll rinse and repeat and check again on Sunday.  It's disappointing..  Especially since I postponed chemo 2 weeks to attempt this.  But priority 1 is to get me healthy again, not make babies!

I'm totally ready for the weekend to come.  Tomorrow, we're watching the last 2 episodes of Game of Thrones on a true IMAX screen at the Bob Bullock museum.  Can't wait!

My support system

I am one lucky gal!  I've been saying that since Damien and I started dating 2.5 years ago... and I get to keep saying that for the rest of my life!  We decided to go to the 5th precinct Justice of the Peace to get married by The Honorable Herb Evans!  It was an incredibly small ceremony (me+Damien+judge) and it was amazing.  I couldn't have asked for a better ceremony.  We'll definitely have a bigger celebration with all of our friends and family once I'm better.  I'm not normally this cheesy (but I have been told I'm getting sappier as I get older), but getting married and being his wife just feels SO RIGHT!  I cannot think of a better, more amazing, more caring person to be by my side fighting this with me than him.

I have been so overwhelmed with the support and notes of encouragement.  This is to the people ranging from the ones who I talk to everyday and to the ones that I haven't talked to in a while but took the time out to ping me -- It really is uplifting and makes it easy for me to stay positive.  Like seriously, you guys, it makes me cry and so happy that I have so many people that care about me.  I will do my best to remain positive and fight this cancer so you guys can see me victorious.  

The one with all the doctor appointments

Tuesday morning 1/13, I meet my oncologist, Dr. S., at 9:30 at the recommendation of my cardiothoracic surgeon.  It's a whirlwind of information.  He's talked to my cardiothoracic surgeon about my case and he agrees that it's the best diagnosis I could have gotten.  He's optimistic and says Hodgkin's is treatable and curable.  It's not staged yet, but he guesses that it's stage III with bulky disease (due to the big tumor in my chest).  We won't know for sure what stage until I get a PET scan and a bone marrow biopsy.  The chemo regimen I'll be on is called ABVD (stands for the 4 drugs I'll be using - Adriamycin, Bleomycin, Vinblastine, Dacarbazine)  Before we do anything, we've got to get more tests done and see more doctors -- a cardiologist to check out my heart, a fertility specialist to discuss fertility options, a pulmonary doctor to get a pulmonary function test, PET scan, and a bone marrow biopsy.  The following happens in 5 separate appointments on Tuesday, Thursday and Friday.  Things are moving quickly so we can begin treatment ASAP.

Cardiologist (Tuesday 1/20) - I get a 2d echocardiogram to check my heart valves and an EKG.  For the echo, I lie on a teeny table in a hospital gown and the tech moves a handheld transducer around my chest to get a visual.  He also gets recordings of my blood swishing and the valves' operation.  It's really relaxing to be lying down listening to sounds of your blood flowing through your heart.  The cardiologist says my heart is "beautiful".  I am so flattered.

Fertility (Tuesday 1/20) - The oncologist recommended we talk to a fertility specialist because there's a small chance that the chemo drugs could cause permanent menopause.  I want to have options for kids later on, y'know?  We talk to a fertility doctor who is very frank with us about freezing eggs/embryos - it's about a 40% chance to get pregnant with 10-12 frozen embryos.  It's almost a no-brainer to me - I want the option of having kids in case chemo does ruin my baby-making insides. 

Pulmonary Function Test (Friday 1/23) - this test took about 20 minutes.  Upon my poor showing at the tests, the nurse asks if I've had breathing problems in the past, such as asthma.  No, no asthma.. but I have this huge ass tumor pushing on my left lung.

PET scan (Thursday 1/22) - this one was actually a PET-CT scan.  I get injected with radioactive sugar and left me alone to fall asleep in a warm room to the sounds of heavy rain in Austin.  I was awoke an hour later and strapped to a tiny table that was going to move me back and forth inside the PET scan machine for 20 minutes.  I fell asleep again in the machine.  All in all, a pretty relaxing scan.  The results of this scan were not surprising, says Dr. S.  The lymphoma is in and around my chest and neck lymph nodes and has made its way down to my lower back.

Bone Marrow Biopsy (Friday 1/23) - This one was nerve wracking.  I wasn't prepared for this one and just kept nervously talking and asking questions.  My nurse did a good job of hyping down the pain and trauma though.  Dr. S performed the biopsy in the exam room while I lied facedown on the table fully clothed.  The biopsy spot was hip bone a little above my butt.  I got lidocaine shots and was numbed so I didn't feel anything while it was going down.  The heavy downward pressure was disconcerting though, but that was to be expected.  He was going into my bone!  When he was pulling the marrow out, it felt like someone was pulling my thigh muscle from the inside.  It tickled and hurt at the same time.  Afterwards, Dr. S showed us the marrow sample (he said he got more samples than anticipated and it was possible the lymphoma had spread there) and a piece of the bone he took.  I feel incomplete.  The results of this biopsy wouldn't be back for 1-2 weeks.  Recovery was tough - if I sat down wrong or turned my body a certain, I'd get this dull ache in my butt/back and have to re-adjust immediately.

Phew, I think I've caught you guys up to realtime.

Through all this, I learn how wonderful pain management and pain drugs are.  I am on some strong stuff and can lead a semi-normal life before starting chemo.  It's like the calm before the storm and I forget I have cancer when the pain's gone.

Biopsy numero uno

Tuesday 1/13 finally comes (finally!). I have a biopsy consultation with a cardiothoracic surgeon at Capital Cardiothoracic Surgeons. I don't know what to expect, but I've made a list of questions related to the tumor.

The surgeon is great - he totally makes me feel at ease. He examines the lumps around my clavicle and sits me down. He tells me that it is for sure malignant and the biopsy would tell me what is. He explains that this mass could be a couple of different things, such as thymoma (thymus gland tumor) or a thyroid thing.  It has probably been growing for a year and has diminished my left lung capacity to 1/3. He says it is serious and that I need to tell my parents because it's cancer. However, he advises that I hold off until we get more answers from the biopsy.  The biopsy gets scheduled for the very next morning.  I pulled out my list of questions at Damien's prompting and the questions seem so insignificant.  Can I still drink coffee? Yes. In fact, he says caffeine from coffee and teas could open up the airway just a tiny bit.  Can I go to NYC for my cousin's wedding in 2 weeks? No, no traveling.  Is it treatable? Yes, technically all cancer is treatable.  Is the mass in the lung? No, it's in the chest cavity that houses your lungs and other things.

I leave the doctor's office and Damien and I sit in the car for a bit.  Strangely enough, I feel a bit relieved to learn it's NOT in my lung.  Nonetheless, I'm devastated to hear that it's cancer from a doctor who said it to my face.  Damien's dad had prepared us for this so the news was not surprising, but to hear it said to you in person is something else.  I call Peggy and Kevin in the car with Damien listening on and break down.  I tell them that it's cancer and that we'll find out more after the biopsy.  They react with a mix of emotions - anger at the first doctor for not finding it earlier, reticence because Phan men can't emote, sadness.  Damien urges me to tell them something positive and the only thing I can think of is "I got better pain meds!". That doesn't have the intended effect of cheering them up.  He tries to explain to them that it's not in my lung which means probably not lung cancer, but it's lost on them.  Their big sister has cancer.

The next morning (Wednesday 1/14), I wake up before the sun, which, if you know me at all, is something I never do and despise.  I pop a vicodin (I turn into House, M.D.) and get ready to go to the hospital for a CT-guided needle biopsy.  It turns out taking one of your first doses of vicodin on an empty stomach is the worst idea. I get nausea and hot flashes on the way to the hospital.  It is literally 36 degrees outside and I've got my coat off and am dripping sweat.  The procedure goes by quick for me because they sedate me.  The only thing you see is a little nick on my chest where they put the needle in.  I sleep off the sedation throughout the rest of the day.

I work from home the rest of the week.  My boss and his management have been so supportive and understanding about this whole ordeal.  My boss keeps telling me my health comes first and to do whatever is needed medically.  I am so so lucky. 

Friday afternoon creeps up and I still haven't heard anything back about the biopsy results.  In the middle of the afternoon, my surgeon calls and tells me they still don't have results, but he will call me Monday with an update.  He tells me to take a deep breath and that we'll make it through this.  Something about the confidence of a cardiothoracic surgeon is totally reassuring to me. 

Over the weekend, Damien and I get engaged!!  We had been talking about marriage for so long and just waiting for a "good" time to get engaged and get married.  We both decide this is the best time of all!  I am ecstatic!  He wants to completely and totally take care of me through this journey as my husband.  I can't even begin to describe how much I love him. The best part is I can be totally selfish now and do a courthouse wedding and plan a bigger celebration when I'm better. 

On Monday 1/19 around noon, my surgeon calls me back as promised.  The diagnosis is Hodgkin's Lymphoma and it's the best diagnosis he could have hoped for me.  Hodgkin's lymphoma is a cancer of the lymphatic system.  The prognosis is very positive and it generally responds well to treatment.  It is a good bad-thing.  It's conflicting but I'm relieved.  It feels like I'm lucking out even though I have cancer.

My parents take it hard and we bawl on the phone for an hour.  Telling my parents was the biggest stress up to that point.  I wasn't sure how my dad was going to take it since he had just had a heart attack 4 months ago. Peggy helped me explain and stepped in and spoke up for me when I didn't have the energy to tell them why it wasn't found earlier.  My sister is like a mind reader and I love her so much.  She has yelled at people for me (she's very effective at yelling, I highly recommend her services) and kept them off my back.

And that's how I found out I had Hodgkin's lymphoma.

Freaking out

Story time!  When Peggy and Ham were in town, I showed them the lump and told them I was going to get it and the alcohol pains checked out.  I mean, nothing stops me from drinking without me getting to the bottom of it!  I distinctly remember saying in my KP never-serious way, "This is either a swollen joint that I don't need to worry about or it's lymphoma." And Peggy scoffs, "Psh lymphoma." You see, I had googled chest pains when drinking alcohol and found old forum posts about lymphoma. But I'm not one to actually self-diagnose on the internet and much less with cancer!  That explains my flippancy.

Alright, so I'm now in the period of my pre-diagnosis where I don't know that much information but I'm freaking out about what I do know.  My chest x-ray and CT scan reports are put online on my patient portal and I'm able to access them on Saturday 1/10. 

These reports are written and signed off by the radiology doctors interpreting my scans.  They include scary phrases like "abnormal findings with a large mass" and "strongly suspicious for malignancy".  I find out there is a 10cm x 12cm mass in my left chest.  I find out it it pushing into my chest wall causing pain.

I fire off some questions to family medicine doctor - is this mass in my lung? Is the asthma or asthma symptoms related to this? He responds with - yes, it is I'm your lung. Yes, the mass is pushing on your airway and causing the breathing problems. 

Note to remember for later: the mass is not actually in my lung, but I don't know that now. It's actually in my chest cavity pushing down on my left lung.

With my limited knowledge of what's going on inside my body and Google, I begin to think that it's lung cancer.  And since it's pushing into my chest, it's got to have spread, so it's late stage. I begin envisioning telling my siblings and my parents and leaving them and Damien behind. I keep thinking that my parents shouldn't have to bury their child. But I oscillate between despair and hope. We still don't know definitively what is inside me. There's no point in this premature worrying.  I tell Peggy and Kevin about the mass and they echo this sentiment - don't worry until you know for sure what it is.  Damien talks to his father who used to be a hematologist oncologist years and years ago. He looks at the reports and tells us that this is serious. The mass could be many different things but they're serious. 

Damien and I process our emotions and thoughts and we stop googling.  I calm down and become more rational. The biopsy will tell us more and until then, we're not doing ourselves any favors by trying to figure out what it is on our own. Dummies.

I tell my friend PJ about this and he makes me awkwardly photoshopped things to make me feel better. I'm a Doctor Who fan and this definitely helped :)

The beginning

The first sign that this (whatever "this" is) was serious was at my first doctor appointment of 2015.

I scheduled an early morning appointment with a different family medicine doctor at Austin Regional Clinic on 1/7/2015.  I didn't really know what to expect when I gave him my list of symptoms.  Guess I haven't enumerated them yet.  They were lump on my chest, neck and head pains on the left side, sharp pain behind rib cage when inhaling deep, shoulder/neck/chest pains when drinking alcohol.  A new lump further left on my clavicle had started to form in the week before this appointment.  I rattled these off to my new doctor and he countered with a list of questions about medical history and other symptoms I might have that I didn't list.  He felt the lumps and sent me to get a blood test and chest x-ray immediately at Austin Radiological Association located 1 floor below ARC.

The chest x-ray was a stat exam so I got in and out of ARA pretty quickly.  It involved me hunching forward into a grid pattern on this machine and the nurse (?) taking the x-rays.  It took all of 2 minutes.  It took me longer to get undressed and put on the hospital gown thing because it was cold that day and that meant big coat and lots of layers.  I hadn't anticipated labs like this, clearly.

I went back upstairs to wait for the results - and they turned out to not say much.  I was sent back down to ARA for a stat CT scan with contrast.  So once again, I had to unbundle myself and change into a hospital gown for this scan.  It was my first time getting an IV in my arm, so that was exciting.  The nurse wiggled the IV needle around in an unused vein in my right arm but that hurt like none other, so she went with a left arm vein.  I lied on a table and was moved in and out of a donut-shaped machine.  She pumped me with the contrast which made my nether regions warm (did I pee myself?) and reran the scan.  The end.  I was then dismissed after a monitoring period (to see if I reacted to the contrast) and told that my doctor and/or his nurse would call me later that day with the results of the CT scan.

So there I am driving back to work 3 hours after my initial appointment time when I get a phone call from the nurse not even 10 minutes after leaving.  She didn't say much about CT scan results but said they had scheduled me for a biopsy consult with Capital Cardiothoracic Group in 6 days.  My mind immediately begins freaking - WHAT!? BIOPSY, WHy?  She said my doctor would call me in an hour to discuss the results but I needed to get a biopsy done ASAP and that was the earliest consult time they could get.

I go to work, sit in my chair for about 5 minutes and go to lunch with Damien.  I had been texting him the entire time I was at the doctor and at the radiology lab.  He's got a feeling that something is terribly wrong.  He's just worried.  I'm naive and keep thinking the doctors just don't know.  After lunch, I get in contact with my doctor and he tells me there is a mass in my chest.  He says it's in my lungs.  They (he and the doctors that looked at my x-ray and scan) don't know if it's benign or malignant; hence, the need for a biopsy.  He's prescribing me codeine for the pain.

So now it's just waiting and waiting for the biopsy consult.  And Googling, of course.  To see what a mass in the chest means.

I'm going to put what happens next (the period of freaking out) in my next post.  It deserves its own post.

Let's back up

Now this is a story all about how my life got flipped, turned upside down. Haha so cliche.

It started in June of 2014.  I found myself having difficulty walking up the stairs to my usual parking spot on the 3rd floor of the work garage.  I was exhausted and short of breath by the time I got up there.  I sucked it up (ha ha) for 2 months and finally went to see a doctor in August.  She had her nurse run a spirometry test on me.  The test involved me taking huge breaths in and exhaling as hard as I could into a mouth piece attached to a hose attached to a computer that measured lung capacity.  The test showed that my lung capacity was impaired and that I had asthma.  The doctor said it was due to allergies to my cats.  She actually told me to get rid of them!  I was prescribed a rescue inhaler (albuterol) and Advair for maintenance and went on my merry way.

The next few months, I saw the same doctor for a dry cough that persisted and vomiting phlegm in the mornings.  I was prescribed steroids which helped immensely and once again, I skipped off into happy land.  In November, I noticed a bump had formed and was visible on my chest a little left-of-center below my clavicle.  It didn't hurt but itched a bit.  I mentioned this to my doctor at an appointment in December for an unrelated issue. She said it was an arthritic joint and told me to take Aleve to reduce swelling.

We are now in the month of December.  These symptoms have been going on for 6 months by this time.

December was a busy month.  I went to North Carolina for my company's holiday party and went to Dallas for a few days for Christmas.  After the holiday party, I started getting chest, neck, and  shoulder pains that felt like muscle tenseness when I drank any kind of alcohol.  It usually started a few minutes after my first sip and last 20-30 minutes.  It was awful pain that made me squirm and want to hit things.   I tried a few things to alleviate the pain - trying different types of alcohol (beer vs wine), taking pepcid and ibuprofen, and loading up on water before drinking.  None of this mattered.  Funny thing was that after that initial bout of pain, I could continue drinking with no problems. 

I also started getting headaches and chest aches on the daily starting about the 2nd week of December.  I didn't think anything of it and was just popping ibuprofen every couple of hours.  My sister, Peggy, and her boyfriend, Hamilton, came to Austin to celebrate New Year's Eve with us.  I celebrated it completely sober and it was tons of fun.

After Peggy and Hamilton left, I scheduled another doctor appointment but not with the same doctor as before. I no longer only wanted my symptoms to be treated.  I was sick of not getting a good explanation for my illness.  I wanted get answers and an underlying cause for all of these symptoms.

That's a story for the next post.

Allow me to introduce myself

Tada, I made a blog!  This is intended to keep friends, family, and internet strangers updated on my fight against cancer and for me to keep a journal for myself.  Everyone knows my memory sucks!

(Ding dong) Hello! My name is Karen Phan. I am 29 years old and live in Austin, TX with my SO, Damien, our maltipoo (Tesla), and our 2 cats (Volta and Kilby).  I'm a QA engineer for a company that does online advertising software.  I like to knit and watch TV and read internet things.  I was just diagnosed with Hodgkin's Lymphoma.

I'm not a good writer by any means. I like short sentences and I don't like using pronouns.  I also am pretty terrible at keeping up with online journals (I've got a neglected livejournal, xanga, Tumblr, and another blogspot blog). But you, dear reader, can ensure that I continue my updates by commenting and getting my ass in gear. 

Intro over! 

P.S. The Blogger android app keeps FCing when I try to attach a pic to the post. Nexus 7, Android 5.0.1.