radiation fun

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Krist cat ears

Hello dear readers,

Well, I’ve done a week and a half of radiation so far and I’d love to say that all is going swimmingly.  Actually, radiation is not so bad.  You lie down topless (whoo-hoo) on the treatment table in the exact same position every time (arms over the head, looking to the right) and then they line up the lasers (I always say this word in my head in a Dr. Evil voice – LAY-zerrrs).  They all scurry from the room and the machine moves around you, making these weird squeaky noises that make you feel like it’s going to just fall on top of you one day.  Then they help you up and you put your robe back on and go about your day.  The whole process takes fifteen or twenty minutes.

Also, I saw my oncologist today and she said the masses felt smaller and softer, which is great.  But I’ve had a hell of a week.

I’ve had a cold for the past three weeks and I cannot shake it off.  I’ve tried everything, including several prescription options.  Last week I started coughing really badly and then I started throwing up every time I had a coughing fit.  So of course I stopped eating because who wants to put something in their mouth only to find out a few minutes later what it tastes like coming back up?  I saw both of the radiation docs and other than prescribing cough meds, they kind of shrugged their shoulders.  But today my regular oncologist gave me fluids and has me coming back on Friday for more.  That made a big difference.  I was able to drink a smoothie today and so far it’s stayed down, which is a huge victory.

I also got my radiation tattoos today.  They’re the little dots on your skin that they use to line up the LAY-zerrrs with.The way they do it is by putting little drops of ink on your skin, then sticking a needle into the ink and sort of swirling it around under your skin.  I felt like a bit of a badass because the tech was like, “Wow, I’ve never seen anyone not jump or flinch at all when I do this.”  And then I was all, “Let me tell you about my FOUR bone marrow biopsies…”  So yeah, I’m kind of hardcore.  She made me bleed and I didn’t cry!  Although it totally hurt.  Not gonna lie.

So I’m eight treatments down and seventeen to go.  Every day except on weekends.  And of course not on Thanksgiving.  Which means I should go to transplant in December.  Slowly but surely, we’re getting there – Lord willing and the creek don’t rise!  Obviously I’ve lived in Georgia way too long.  🙂

moving forward

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I have now completed six treatments of Opdivo, the semi-experimental chemo drug.  So far, things have gone well.  I’m not puking my guts out every day any more, and I can feel that the masses are getting smaller.  I don’t mean that in an existential way.  The masses are so big and hard that you can actually palpate them with your hand.  And now they’re smaller.  So hooray for that.

On Wednesday of this week I had a CT scan done.  Can I just say that I hate barium?  That stuff is so nasty.  I had to drink a bottle of it the night before, a bottle of it the morning of, and then the tech had the nerve to hand me a cup full of it when I got there!  Needless to say, I threatened to puke on him.  And we all know I can make good on that promise.  Then he shoved a needle in my arm for the IV contrast.  That stuff is awful, too.  It burns like the dickens going through you and then makes you feel like you just peed your pants when it hits your bladder.  I suppose having cancer is not unpleasant enough.  Trying to take pictures of it needs to be as miserable as possible, too.  Okay, cranky rant over.  But seriously, my insides are still angry with me.  We’ll just leave it at that and spare you the details of the barium leaving my body.

Thursday morning the CT report came in, and I got a text from my oncologist in ALL CAPS – EVERYTHING IS SMALLER AND NOTHING NEW!!!  I love it when my docs and nurses get excited over good news with me.  It reminds me that they have a vested interest in my well-being and that I am more than just a patient to them.  Then my Dr. McDonald talked to my transplant doctor.  He was happy with the results and ready to move forward to the stem cell transplant.  He wants me to do radiation on the big masses in my chest first.  (They are smaller, but still there.  He wants to try to break them up even more to give the transplant the best chance possible of working.)

So yesterday afternoon I went to see the radiology oncologist to do my initial visit.  Have I mentioned lately how much I love my doctor?  She got me in to start the radiation process the SAME DAY they decided I needed radiation therapy.  I went back this morning to do another CT scan and start the simulation process.  Before they hit you with any gamma rays, they scan you and write all over you with Sharpie to make sure they are hitting the precise spot to be radiated at the correct angle.  They’ll finish the simulation on the computer next week and I’ll go back next Friday for a dry run to be sure everything is correct.  Then I’ll start treatment on Monday, November 2nd.  I’ll do 25 doses of radiation – Monday through Friday for five weeks.  After that I’ll go straight to transplant.   I haven’t heard from my nurse coordinator at BMT yet, but I’m assuming I’ll do the transplant workup and all the preliminary tests while I’m doing radiation.  So my transplant date should probably be sometime in December.  It’s funny, I feel like I’ve been waiting and waiting since May and now all of a sudden, everything is happening super fast.  Before I know it, transplant will be here and done.  Crazy, right?  I mean, crazy that all this is happening so quickly.  Not me.  Well, maybe me too.  I’ll let you be the jury on that one!  Love and hugs!

slow and steady wins the race

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I had my PET scan last week.  Or was it two weeks ago? Time flies when you spend it asleep! Anyway, I had my scan and got my results. They were mixed. The large masses in my left breast have gone down. The spot on my liver looks the same. But there is a small mass on the right side of my neck that is brighter and some small spots in my left axilla  (aka armpit) that are also brighter. My regular oncologist and my transplant doctors talked it over and decided to have me do a few more treatments of Opdivo and then scan again. It does seem to be working, as I don’t look like I have three boobs anymore. But we still need to get the masses down smaller before we do a transplant. I’m doing pretty well on this drug. My numbers are stable, my weight is steady, and my hair is coming in dark brown. I do sleep a lot during the day, but I’ve also been able to get out and do things since my white count is close to normal. Bobby and I went to a wedding last weekend, and I’ve been to church and Target several times (yes, those actually are two separate things for me).

Opdivo works differently than the older chemo drugs (many of which I’ve taken, like Adriamycin and Dacarbazine). It doesn’t kill all fast-growing cells like they do. It works with your immune system to help target only the cancerous cells. That’s why my hair hasn’t fallen out with Opdivo. And I’ve only thrown up twice since I’ve been on it. That’s a huge improvement over the Brentuximab! I have another treatment this Wednesday. My awesome personal nurse Mary Ann takes me to my treatments. I don’t know what I would do without her. I’ll be sure to let you all know once I get the results of the next scan. I leave you with this picture of my sweet husband and me having fun. So glad I remember how to do that! 😉

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Opdivo for the cancer diva

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Hello my lovelies!

kristi and david and dad

I am feeling much better than I did when I last posted.  This picture is me with my brother, David, and my dad, Mike.  You may notice than I’m a bit thinner.  I’ve lost about 60 pounds since May, mostly due to all the puking from the Brentuximab.  Thankfully, that drug is finally out of my system and my weight has plateaued.  I don’t need to gain any back, since I had gained a ton from all the steroids and fluids, so I think I’ll stay where I’m at now.  Thankfully, no more vomiting!  It’s hard to believe now that I went through that every day for 20 weeks.  Whew.  And, even better news…no more vomiting means no more AVM’s in my stomach, no more bleeding, and no more hospital visits!  My numbers are much better and I haven’t needed a blood transfusion since July.

My insurance company didn’t approve payment for Opdivo treatments since it’s not approved by the FDA yet for use with Hodgkin’s lymphoma, so we applied with the drug company, Bristol Myers-Squibb, for their drug replacement program.  Basically that means that the drug company gives me the Opdivo for free and I’m only financially responsible for the clinic costs of infusing the drug.  We were approved for this, so we moved forward with treatment right away instead of wasting time appealing with the insurance company.  My masses were growing daily and starting to spread again, so there was no time to waste.

I’ve now had three infusions of Opdivo, which I get every two weeks.  My masses have noticeably gone down, and I have a PET scan scheduled for next week to check my progress.  Once we get the PET report, then we will have a better idea of when we’ll be able to move forward with my next transplant.  This transplant would involve an outside donor (which we’ve already found) and would hopefully prevent the lymphoma from returning.  But we have to get the masses down to a manageable size before we’re able to do the transplant.  Radiation therapy is still on the backburner as another possible way to shrink the masses, but hopefully this drug will work and radiation won’t be necessary.  There have been some small studies with Opdivo and Hodgkin’s, and they show promising results, so we have high hopes for my Opdivo results.  So far the main side effect I’ve had is extreme fatigue, with lots of sleeping.  But I can handle that if the drug is working.  I think it is, since I no longer look like I’ve had a bad boob job on the left side.  Seriously, I looked like I had a third boob above my left one.  Now they just look uneven, so that’s big progress.

I was also hoping my neuropathy would improve once I got off the Brentuximab, but that hasn’t been the case.  I was warned beforehand that any nerve damage from the drug would most likely be permanent, so I’m not surprised.  I also have neuropathy in my feet and legs, which makes me look a bit like a Weeble Wobble when I walk, but I’m managing.  I’m hoping that the more I stretch and use my hands and feet, the better I’ll be able to manage the neuropathy.  I’d rather deal with it this way than take any more pills.  I’ve had Neurontin before, which is what is usually prescribed for neuropathy, and that shit sucks.  Seriously.  I hated being on Neurontin (tried it for a few months before I had a diagnosis, when my dermatologist thought my itching was neuropathic).  That stuff seriously messed me up.  So as long as I’m not in excruciating pain from the neuropathy, I will deal with it.  And yes, I’ve had this discussion with my doctor.  She knows I am terrible at taking meds I don’t want to be on, and agrees that the less I’m on, the better.  I am still taking a few things for my stomach and anemia, but they don’t have any side effects, so I don’t mind them.

My hair has been very slow to come in, but I finally have fuzz all over my head instead of in patches.  I also have some tiny little eyelashes and may even need to tweeze my eyebrows soon!  I had almost given up on growing my hair back before my next transplant, but I just might achieve a cute pixie ‘do for a few weeks before it falls out again.

I just want to say thank you to all of you for loving me, supporting me, praying for me, and reaching out to me.  I have the best village.  You all continue to take such wonderful care of me and my family, and we appreciate it more than we can express.  Love you guys!

more and more hospital

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Hello, my lovelies.  It’s been a little while since I’ve posted.  It’s gotten kind of difficult for me to type.  I have neuropathy in my hands because of the brentuximab.  Thankfully I can still button my pants, though it takes a few minutes.  Usually I just wear yoga pants because, you know, I can.

I’ve been hanging out at Wellstar facilities lately.  I was in the hospital three times in the month of July.  My hemoglobin kept dropping, which meant I needed blood transfusions.  I also kept vomiting blood, so we knew I was bleeding somewhere in my upper GI tract.  Last week I nearly passed out while trying to do an MRI (for a look at a spot on my liver) and ended up back in Douglas Hospital.  The GI doctor decided to do another endoscopy and this time found several AVM’s on my stomach.  They are little spots where the blood vessels have burst and are bleeding openly.  So all of those got cauterized.  It’s been five days and my hemoglobin was 9.4 today, which is awesome for me!  And I didn’t puke all weekend.  So hopefully I won’t be having another staycation anytime soon.

I did get the MRI done while in the hospital, and it confirmed that there is a small lesion on my liver.  This basically means the lymphoma is spreading again.  So how do we combat it if the brentuximab isn’t working anymore?  Well, I’m going to try a new drug called Opdivo.  It’s not actually been approved for use with Hodgkin’s lymphoma, but we applied with my insurance company for what’s called “compassionate use.”  So hopefully we will get an approval soon.  Then we can get the new drug in me and get these masses to go down so that I can do the next transplant.

On a personal note, the kiddos started school today.  Fiona is in kindergarten and Elliott is in 3rd grade.  I’m really not sure how that happened.  I mean, wasn’t it just yesterday that I had a baby and a toddler?  I swear it was.  At any rate, they had a great day and I’m very pleased with their teachers.  It is a little weird not to be starting back to school myself, but I know in time I will make it back to the classroom.  Until then, I suppose I’ll just have to content myself with the role of “homework helper!”

Love you all.  Thank you so much for your many good vibes and prayers these past few weeks.

hospital

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Two weeks ago I woke up at 6:30 in the morning and had to throw up as usual.  Bobby was in the restroom, so I ended up vomiting in the sink.  It was a little too dark and viscous, so I turned on the bathroom light.  Red.  Blood red.  A sink full of blood.  Ew.  I washed it out and went back to bed, trying to reason in my head that it was just red stomach acid.  I mean, I’ve thrown up some pretty funky colors of stomach acid (green, yellow, orange).  But then I ended up throwing up several more times, all of which were blood.  I even made Bobby look at it to make sure it was actually blood.  He took one look at the toilet bowl full of clots and immediately said, “Get dressed.  We’re going to the doctor.”  So I got a shower and called our friend Jackie, who graciously agreed to keep the kids for us.  We got to the doctor’s office right when they opened at 8:30, and of course when I said “vomiting blood,” the doctor agreed to see me right away.  Dr. McDonald is awesome, and would have probably seen me no matter what, but I learned really quickly that “vomiting blood” makes things happen.  Some things I’d rather not have happen, like an endoscopy.

We got back to see the doctor and I asked, “You’re going to stick something down my throat, aren’t you?”  She smiled and said, “No…someone else is going to stick something down your throat.  I’m going to read the report.”

I had to laugh.  And then I started worrying about having a camera on a tube shoved down my throat until she told me that I’d be asleep for the procedure.  But then she told me that the quickest and easiest way to get the test done would be to admit me to the hospital and call in a GI consult.  So off to Wellstar Douglas I went.

I saw the GI doctor that afternoon and thankfully stopped vomiting blood, which made the doctor think it was a tiny tear in my esophagus that had already closed up.  I had to stay overnight and then had the endoscopy the next afternoon.  It was quick and easy, and the GI doctor even took pictures for my curious kiddos to be able to see Mommy’s insides.  All he found was some gastritis in my stomach, so he doubled my Protonix prescription, put me back on Carafate, and sent me home.

So that was my fun hospital trip.  Thankfully it was short.  I’m still throwing up a lot from the chemo, but thankfully no more fountains of blood.  And hopefully no more last minute hospital stays!

hospital selfie with bobby

fuzzy head and high times

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So the pot pills did not work out so well.  The kids went to my parents’ house for Memorial Day weekend, and on Saturday morning I started feeling sick.  I took a pill at about 10 am, and I was fine for about an hour.  But around 11, all of a sudden something in my head just clicked and I immediately had to sit down.  I asked Bobby to bring me a pillow, and I spent the next few hours on the couch in a weird state of semi-hallucination.  The world was spinning, I couldn’t stand up, I could barely talk.  Bobby said every so often I would halfway sit up and ask him the same question I’d asked 20 minutes earlier.  It was horrible.  I don’t know why people pay money to feel like that.  I hate being out of control.  Finally, after a few hours, it started to wear off and I could finally fall asleep.  Needless to say, I won’t be taking any more of those pills.  I’ve decided to just stick with the Zofran for when the nausea gets really bad.

On a more positive note, I’ve got more hair on my head.  It’s growing in really dark.  I have a lot of fuzz on the back of my head, and then some on the top and left side.  For some reason, there’s not so much on the right side yet.  It looks pretty funny right now, but I’m hoping I might have a full head of fuzz by the time my next transplant rolls around.  And my eyebrows are almost completely grown back in!  No eyelashes yet, though.

K with fuzz

Yesterday I went to see my transplant doctor, Dr. Solh.  The plan for now is to do a few more treatments of brentuximab, since it seems to be working.  Then we’ll do another PET scan to see what the masses are up to.  If we need to, we’ll do some radiation at that time to finish shrinking them.  If I can get to remission (no masses), my chances of the transplant working will be higher.

Another positive note – they found a 100% match for me through the registry.  So with radiation and getting everything worked out with the donor, we are probably looking at a transplant date sometime in September.  If you are interested in doing something to help out, please consider going to bethematch.org to become a registered donor.  Even though I won’t know my donor, I will forever be grateful to them for their selfless gift of life.  You can also donate blood or platelets.  Locally it’s AtlantaBloodServices.com.  Many thanks to Stephen and Wendy for their recent donation on my behalf!

So that’s where we are right now.  Still taking it one day at a time, and still praying for energy, health, and remission!