So that happened

Ok, kids. So here I am, alive on the other side of chemo treatment #1. Definitely not my favorite thing I’ve ever experienced, but significantly better than it could have been! I’ve been a bit of a recluse since Friday when it happened, because, in all honesty, the side effects hit me harder than I had expected. And I’ve been sort of a pathetic heap of feeling-sorry-for-myself on a couch ever since. But here’s what’s been up.

As of today, Wednesday, I am still tired and have some discomfort in my mouth and throat. The other strong side effects have been nausea and heartburn (let me tell you, having never really had heartburn before, I was freaking out when that one showed up and I didn’t know what it was). Friday, the nausea hit my like a brick right before Dad & I left Georgetown and into the night. I was bent over on the couch for hours trying not to vomit while watching Ratatouille with the gang, and I finally realized – chemo actually hurts. Chemo is not just a walk in the park. And there is a big difference between knowing it and knowing it. Now, ich kenne Chemo.

I had mentally prepped myself for the fatigue. And the hair loss (which will set in in a few weeks). But I’d heard the nausea could be 100% controlled (by medication, a lesson I’ve quickly learned), and everything else, like mouth sores, sort of faded into the background like white noise. But mouth sores are my current main enemy. The problem with chemo is that it is meant to kill fast-growing cells (like cancer). But along the way, it also demolishes my naturally fast-growing cells, notably the ones up and down my digestive tract. I can already tell that some foods taste different, due to my taste buds dying off (strawberries have lost their charms, I’m afraid). To combat mouth sores, I must do my salt/baking soda rinses, brush with my special non-sugar/alcohol toothpaste, and use my numbing Magic Mouthwash. One big thing that doesn’t help, though, is that I’m a habitual lip/inside of mouth biter. So many sores…

As for the nausea, my meds are the bomb. Seriously. It is so easy to control. But it also means I’ve been living off of the blandest food possible. And all I want are big doses of chocolate and cheese and burrito and things that I cannot eat for fear of making the alien in my stomach rear its ugly head. I had a grilled cheese on Sunday that brought me the closest I have been to actually vomiting – but success of successes, I have kept everything down with the power of meds!

Regarding the actual chemo administration, it is TIME-CONSUMING! Dad & I were at Georgetown Friday from 11:30 when we parked until 5:40! Good grief, is basically what I have to say to that. I mean, I got to read nearly all of Game of Thrones Book 2 while I was there, but come on…

For the record, I’m part of the study at Georgetown. Only because I can pull the plug on it at ANY time in case I decide I don’t want radiation if I don’t respond well to the ABVD. Being on the study will be good to provide information to future patients, which I’m a huge fan of, having done those studies at NIH and contributed to science before with my healthy body. Now my cancer body can help out too!

The beautiful man you see on the right up there is the lovely violinist who serenaded us as Dad and I arrived at Georgetown’s Infusion Center. For about 3 songs only, sadly, because the place was DESERTED Friday at noon. The woman who registered me and brought us sandwiches actually left as soon as we got there, and I spent the next 6 hours watching everyone giddily slip off to their weekend plans, including the sole 3 other patients I saw. My nurse was lovely lovely lovely, though (and also has a daughter named Elizabeth, who goes by ‘Bithy’ – a nickname that I’ve never heard ever).

In terms of the process, it goes as such –

1) Arrive, sign in (10-15 min)

2) Have blood drawn so it can go to the labs (30 min) – This is so they can make sure my white blood cell (WBC), red blood cell (RBC), and platelet counts are high enough so I’ll be able to tolerate the drugs. This took a looong time Friday, because my blood simply did not want to come out of my body via the Mediport (left side of my chest, under my bra strap area). Hopefully this will get faster in future…

3) Blood analyzed in the labs (1 hr) 

4) Blood approved, send down for meds from pharmacy (1 hr) – Yes, it takes an hour to get the meds, because they can only start MAKING them once my labs are approved. This is because they are making them specifically for me, Elizabeth Almen Stone, based on my BMI and metabolism and lab results and such.

5) Get drugs, administer anti-nauseants & steroids (1 hr) – These are the beautiful drugs that stop me from puking as soon as the chemo enters my body.

6) Get chemo (1.5 hrs) – Adriamycin, Bleomycin, Vinblastine, and Dacarbazine. There’s a link from another blogger in the Links section of my blog where she talks more about these. Suffice it to say, they are my enemies. EXCEPT….

 

(Big secret – the tumors have already gotten smaller)

😀

The nurse at Life with Cancer (INOVA Hospital’s cancer program) said it could happen. And it is, which I’m taking as a sign that I’ll hopefully be a fast-responder and finish out my 4 cycles of ABVD on November 2. I can literally no longer feel a lump that had appeared up behind my collarbone. The group of masses on my right chest wall has shrunk. It is a glorious feeling.

And I think I’ll stop there for now. I like texts & phone calls – in my pathetic slug state, I have been isolating and not reaching out to people because I’ve been scared. I’ve basically been relying 100% on the goodwill of the Browns (Beth, Tim, Katie, and Annie, for the record), and not extending myself much further. But I love you all, and I miss you, and would love to hear from you.

On the Edge

So I am guilty of the worst blogging offense – silence. My apologies, for I have had many thoughts, and many impulses to write, and yet I keep finding myself creating excuses for why I can’t write anything just yet, or just yet, or just yet…
Which is especially unfair to everyone because things are moving forward and there is news! So here we go.
Surgery went very very well – my Mediport is in place on the left side of my chest, and the lump that started it all has been gorgeously excised from my right armpit! My right arm has some tenderness and needs stretching still, and the Mediport is definitely a sensitive foreign body under my skin (I am a cyborg!), but I’m feeling 100% strong. There was a small ER visit when I was feeling short of breath, but I had a chest x-ray and CT scan, and there were no pulmonary blockages. I was very likely just restricting my lung capacity while the muscles in my arms/chest were held in funny positions to reduce pain. (Did that make sense? Basically – I’m fine).

 

Last week, we met with Oncologist #3, and I was able to make my final decision about which doctor to proceed with! I’ll be working with Dr. Catherine Broome of Georgetown’s Lombardi Cancer Center. She’s got a great reputation, Georgetown is top notch, and I’m feeling confident in this decision.

 

What I’m still waiting to know more about is the exact plan of treatment I’ll be on. I’ll know more after I’m able to talk to Dr. Broome on Thursday morning, but in essence, it’s between using the standard 6 cycles of ABVD, or to participate in a clinical trial where I would have a PET scan after 2 weeks. If the PET scan comes back clean, then I’ll have 2 more cycles and be done. If the cancer is still there, then I would go on a more intense chemo cocktail called BEACOPP (which is the standard in Europe, and in the US is used for more advanced stages of Hodgkin’s) in addition to some radiation.

 

To say the least, I don’t want to do BEACOPP or radiation. Not if given the choice. Both have much higher risk for harsher side effects than ABVD, including infertility and secondary cancers down the line. But I will do whatever is necessary to get rid of this evil thing. So I need to ask some questions on Thursday before I can know for sure.

 

What I do know for sure is that the first step to either treatment plan is starting ABVD. And accordingly, I am starting ABVD….

 

Friday.

In less than 72 hours.

At Georgetown.

 

And that is a mildly terrifying thought.

 

I know I’ll probably feel fine after this single treatment. But it means that the next one is only 2 weeks away. And the next one in a month. It means my hair will be gone that much sooner. It means it’s real and I will start to FEEL sick instead of being able to live in this tolerant denial.

 

I went shopping with Katie last week, and she wanted to go into an accessories store. Loving things like scarves and headbands, I was a pretty happy camper. And at first, nothing was striking my fancy. Until, when trying on a scarf, I tried putting it on my head. And then spent a rather solemn half hour standing in front of the mirror in the far back of this bright and girly store and feeling sorry for myself. Which is not the feeling I want to have. I am trying desperately to get out of that mindset. So I bought those damn scarves. And a new Nats cap. And now, my summer scarves collection has grown beautifully (to say nothing of my already lovely winter scarves collection!), and they are ready to go on my probably bald bald bald head.
This isn’t necessarily coherent. I am prepared for this week. It will probably be no big deal. Dad and I will chill out in the Infusion Center. We’ll be given sandwiches and probably some popsicles. Maybe I’ll make my first fellow Hodgkin’s friend. At this point, I know everything, yet nothing, to expect.
But for now, life goes on. I’m off on an evening adventure, and I will try to write more tomorrow.

Post Surgery

Greetings from Elizabeth on Percocet!

Surgery today went very very smoothly, y’all. Apparently my dear Dr Brenner told everyone that it was so routine and with no complications that he was on the verge of boredom 😉

The big original node has been removed, I have some dissolvable stitches in it, and I’ve got an ice pack strapped to it to reduce the swelling/pain. The Mediport is in on the left side, just about where a bra strap meets the cup, so that way when it comes out, the scar will be hidden for me to wear cute clothes still. The Mediport is my access point to receive chemo, so that my one good vein in my left elbow won’t get worn out as I move deeper into the cycles. It’s entirely under the surface of the skin, but it does mean I’m a cyborg now 😀

So besides waking up from anesthesia shivering uncontrollably and nauseous, recovery so far has been immensely smooth. I’ve been a little weak, a little tired, but my appetite came back and I’ve been having some grapes, pita chips, trail mix, water, and a peanut butter/chocolate/banana smoothie! Nom. I have to keep flexing my toes and moving around my legs to prevent blood clots, but I’m feeling pretty great overall.

So very good recovery, I’m perfectly clear in my mind, I’m not in massive amounts of pain, my vitals feel fine, and now it’s time to just relax and heal up before more doctors next week!

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State of the Anatomy

Ok, so with all of this information coming together on this beautiful sharing platform, here is the first update to bring everyone up to speed on what is happening NOW (as opposed to what has happened so far, which has a synopsis on the page ‘The Timeline’)

The basics as of this moment:

1) I have Hodgkin’s lymphoma, diagnosed on 6/27.

2) It is in an early stage (2, because it’s only in my R axilla but creeping up behind my clavicle) and I am asymptomatic (no sudden weight loss, night sweats, fevers, etc), both of which mean it should be more easily treatable.

3) I will definitely undergo chemotherapy, and very slightly possibly radiation as well. My chemo cocktail will likely be ABVD, the current standard for Hodgkin’s. I also have a consult with a radiological oncologist on Tuesday to learn more about using radiation possibly.

4) Treatment will likely last somewhere between 4-6 months.

5) I’ve consulted with 2 different oncologists, and will consult with a 3rd on Tuesday afternoon. After I meet with them all and hear their experience/opinions and get a sense of how well we mesh, I will choose one to move forward with for treatment.

6) Tomorrow I have surgery for my excision biopsy, which will confirm the diagnosis 100% (by looking at both the cellular makeup of the cancerous lymph node and the architectural structure of the node) and provide important information for my treatment.

 

All of that isn’t meant to be scary, but if it seems worrisome — don’t panic. Everything is under control for now. I have the cadre of post-surgical elves waiting for me tomorrow, all of my appointments are scheduled, and I’m really hoping to start treatment by the 23rd!

So go team, and email, comment, or text if you have questions/love/presents/etc 😉

 

Welcome Wanderers

March 22, 2012

Dearest Darling Friends & Family,

As promised, here is my means of updating you all from the wonderful world of cancer! Here is where you will find the newest info from the medical front lines, along with my thoughts and (oh no) feelings that come along the way.

Who can say where we will all travel together on this road? Certainly, though, I am determined to have us travel together. You all are collectively my bastion of strength, the people who I hold dearest, and the ones I can always rely on. You are my mothers, fathers, and sisters. My cheerleaders and Valkyries. And together, we happy few are a band of brothers and those who Keep the Faith and Take Care of Each Other.

So small amounts of corniness aside (but gods, you must know I love you), let us begin.

<3,

Elizabeth