1st Sign of Shrinkage

Jump Dance Celebrate!
Monday 8-24-15 came with fun news! Slight shrinkage on my tumors and swelling!!! Yes!!!! Chemo seems to be working.

Backstory/Update/What this chicks been doing since I last posted on here:

Summertime please don’t leave! I love you so. hehehe. Took sometime to enjoy the great outdoors this last week during my free time. Drug my mother and little brother out on a mini hike. #2 for the little guy( go Damon ). We went up to Denny Creek Falls about 2miles round trip, perfect for the little guy and the mom that doesn’t get out much 🙂 Picnic, snacks, vegging, water splashing around in the creeks. Perfect place for kids ❤ Oh, Washington so much to offer in free entertainment you keep my heart happy.

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On the way home we drive through Seattle. Little man hasn’t gotten to get out there lots. Heck, I hadn’t gotten to explore Seattle much myself til last year. So, I drag them around town a bit.

Both Mom(I have no idea what she’s been doing all these years to of not seen these, but no worries we’re fixing this) and Damon hadn’t been to Seattle’s famous Gum wall or Freemont’s Troll under the bridge. No Worries though.. Both can now officially be checked off their list. Slight bummer was that we got back to late to manage to wonder around the public market so little guy is still missing out on that. Although now we got another excuse to stop another time. 🙂 Bonus!!

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It was a lovely day and I’m so glad I’m lucky enough to have such a close loving family that I don’t mind spending about 75% of my whole life with them now-a-days. Even though at times it makes me feel as though a teenager or something what woman doesn’t want to feel younger?!? Right?!!? Maybe?! Hehe 😛

That was my most adventurous exciting fun day since freedom happened. So maybe I just wanted to brag and share. Other then that I’ve been relaxing and seeing some random friends here and there. Nothing too remarkable to cram in here and have you get stuck reading.

Or well, thats a lie. Doctors appointments have happened, and yes lets chat about those..

Usual follow up visit. Cancer patients see doctors often. Thank goodness for great insurance. Anyways moving on.. Doc and I chat. Tell him how I still have headaches (nothing like my migraine from that week though) that I’ve been having some issues with seeing, things have been a bit blurry for me at times. Might be because of lack of sleep. Darn steriods keep a girl restless lately I’ve been a maybe 5 hour a night sleeper. Random nose bleed the other AM. Tired Drag Assey-ness. The usual.. Got the doctor curious. Whoops.. Off I go get another MRI to check out what’s going up there. Score! Being the super duper curious mouse I am I love being able to get updates on my issues.

Beep Beep durrrrrrr durrr chug chug.. Loud banging 30 minutes in a claustrophobic’s nightmare. Then waiting… Call comes through. Radiation specialist on the phone. Great news. Tumors have shrank a bit. That’s what I get told. Short and simple. Okay yay! Thank you. Off I go with more pep to my feisty little step.

Wednesday, 8-26-15, back to visit my friendly doctor. Short and sweet. He’s still waiting to hear back from Seattle Cancer Care Alliance so since chemo is doing it’s job were going to do another round while we wait. Monday it is.

Being the curious bugger I am though on my out I wonder on down to medical records. Hello.. May I please have copies of the reports on my pet scans lumbard puncture and MRI’s in the last month. 10 minutes later I leave with factual answers.

Compare and contrast……

7-27-2015 = 4.4 x 2.6 cm right frontal lobe and 3.6 x 3.0 cm left temporal lobe

7-30-2015 = 4.4 x 2.6 cm right frontal lobe and 3.8 x 2.8 cm left temporal lobe

8-24-2015 = 3.5 x 1.8 cm right frontal lobe and 2.9 x 2.2 cm left temporal lobe

So, maybe not a huge difference but almost a full cm of shrinkage on both of those suckers up there!
Having only done 2 rounds of treatment and being one month I’m pretty happy with it although I’m unsure how impressive it really is in the doctors eyes.

Reading reports written by doctors can be very informative and interesting. I found some mistakes in them which is different, but natural and human right so I mean just because you are of superior intelligence doesn’t mean you won’t make mistakes constantly, I suppose. Still had me thrown off at times.

Ever heard of Moon facies? Me either sounds kinda cute though right? Googled it..

Moon facies, or moon face, is a medical sign in which the face develops a rounded appearance due to fat deposits on the sides of the face. It is often associated with Cushing’s syndrome or steroid treatment (especially corticosteroids), which has led to it being known as Cushingoid facies (“Cushings-like face”).

Makes sense everyone’s been mentioning my adorable new rounded out chipmunk cheeks. Last chemo left me skinnier and thinned out. This time I’m running around on lumberjack man status. Constantly shoving food down my mouth never really full. Can’t decide which I prefer, yet.

Most positively crushing thing to see on the reports though is that my doctor seems at a loss on what to do with me. Appearently this must be pretty rare.

Direct Quote:

8-24-2015 = 4. I will discuss the patient’s case with Seattle Cancer Care Alliance as to direction for further therapy; should we stop the high-dose methotrexate and proceed with the whole brain radiation therapy, should we consider stem cell transplant?

I like that he’s open to get more opinions and help, but it’s not really comforting that I’m continuing to get treated when he seems at a loss. Although, obviously with my slight shrinkage it’s doing something so that’s better then nothing. Yet is it enough? How long do I do have till there’s more issues? No real predictability, LIFE ughhh..

Round 2 Down the Gutter

Home free Home now. What a nice relief. Friday thru Monday. Weekend robbery. Whats a girl to do though. Wasn’t to bad of an experience. I did find myself feeling out of character and getting rather annoyed on occasion with my nurses. Going to blame it on the steroids. Don’t understand why else I’d be short fused. Maybe the lack of sleep didn’t help. Although that was only like 50% there fault. They do have a job to attend to.
Showing up Friday at 1030am and not getting to start my 4hour run of Methotrexate until 1230am was kind of a bummer. Since then everything runs late for the whole trip. Every night I was getting woken up at 3am then 4am then 6am if I was able to sleep at all so that they could trade some drug out or get a blood sample.
Other then that though it went smoothly. I eat CONSTANTLY. My belly feels like an empty pit no matter how much CRUD I cram down it. Which I guess is better then not being able to eat so maybe I should quit complaining. Although being hungry at 5am and not being able to get any food isn’t fun either. Probably should bring more food for myself next trip.
Off I go to unload my bags and grab a snack!

How my Journey Started

Hi There! My names Harmony. True Washingtonian Lady. 24 year young Gemini. Trying to live life to the most extreme happy times I can. Dealing with the strange and uncommon on a daily basis now-a-days. 2015 showed up giving me new meaning and outlook on life. I’m a walking strange one. 😉 Brave, courageous, and inspiring to others is what I get called commonly now. Funny how learning you have Stage 4 Cancer can alter life in such amazing and different ways. Christmas Eve 2014 came with a phone call that brought me a whole new life. Here’s how my story began.

During November 2014 I was conquering life. Living on my own for the last 5 months for the first time ever. It was such an amazing experience. Working at Sol Food Bar and Grill, my first waitress job. Hanging out with great friends going out tons to make new ones. Just thriving and having such an awesome time. Then I started getting tired lots. Maybe I was just doing to much not resting enough. My upper body started aching. Horribly. It became hard to get out of bed. Couldn’t figure out why I was so sore. Thought it was because I was still using the futon I bought back when I was 16 and that it had just gotten so flat and old it was causing me to not get a good nights sleep. Then one day I was checking myself out and I noticed this lump on chest. Odd but maybe it was just from how I’d been sleeping on my sides. So, I just didn’t think about it much. Yet it continued to grow and become more and more sensitive. By December it hadn’t gone away it had actually grown so much more that I started to call it my,” Third Lady Lump”. Being the natural not into doctors kind of girl I kept putting off going to get it checked out, but finally a friend noticed it and had me promise to go get it checked out. So on December 17th while I was having my car fixed I got my dad to take me over to the walk-in clinic so we could try to get some answers, and boy did they deliver.

Upon first sight by the doctor I could tell something was up. She kept giving it an odd look and sent me over right away to get an x-ray. Once getting those results she called upon another doctor in the office to come take a look who then suggested that I needed to get an MRI asap. They didn’t have an opening in their office to do one so they had me drive to Providence Hospital to get it done in the next hour. Get there get it done and then am told that I’m not aloud to leave afterwards. They are requesting me to stay so I can receive the results and follow up with what they say. An hour later my phone is ringing. Its the walk-in clinic they need me to come back they have the results and would rather not mention them over the phone. Off we go. Back to see them to hear her say,” You have a tumor and because of all the tissue and bones it’s taking over it’s cancerous.” Disbelief and horror surrounds me. How can this be happening I’m too young so healthy or so I had thought. They get me to give them some blood so they can send that in for some other testing and set me up with an appointment for 2 days away with Dr.Congdon. My night was ruined the next day was catatonic. Wednesday shows up. I go in and get my first meeting with my oncologist. Who then ships me over to go meet another doctor to have a biopsy done on the tumor. Simple easy process. Stuck me with a numbing shot and then poked me 3 times to take out some samples bandaged me up and sent me home. One week later I get the call. Good news Bad news.. Results came back negative, YES!, Bad news: Didn’t make sense so I needed to get scheduled to have a larger more invasive biopsy done, YUCK!, but okay I should make sure. Days later in I go for my first major thing to ever get done to my body. Even got stuck not being able to work for 10 days talk about unwanted unplanned vacation. This time though results came back positive. Sitting around with family trying to enjoy Christmas Eve I got told I had Diffuse Large B-Cell Lymphoma and was in need of getting a Pet/Ct Scan soon so we can figure out how serious it was, and start a treatment plan. Turns out I had a few areas of growing tumors that were hanging out in my belly. Stage 4. Apparently I’m the go big or go home type of girl.

January 19th I went in to do my first of 6 treatments. R-EPOCH. A 5-6 day Chemo regime that would require me to stay at the hospital each time.Boy is that a shocker. Sticking to that go big or go home thing, I suppose. The plan was to do treatment once every 3 weeks and after 3 treatments I’d have a scan done to see how things are working and then continue onto finish.

Man oh man did my life change. Ended up not working. I mean who employs someone that needs so much time off. Plus doctors don’t recommend working a job that you are constantly dealing with people when you have no immune system to fight away germs and stay healthy. Ouch. Can you imagine being 24 living alone paying your own bills and then unexpectedly not able to continue working. Thank goodness I’m a frugal girl and had a saving account that lasted long enough for me to pay all my rent up till my lease was up but man was I broker then broke for anything else. Oh well I survived. Made me feel like a strong independent women.

Chemo is interesting. Sometimes its okay other times hard. Some days I’d feel normal others not even close. My first half of the treatments went okay. I had minimal side effects. Which was empowering. Made me feel more confident that I was going to manage to survive this whole ordeal. During the first half I only experienced the lack of appetite  ( lived off chicken broth for a few days after leaving the hospital) alopecia ( hair loss ) and tiredness at times. Didn’t seem so bad. Got my scan done told things were shrinking and working great. YEAH!      

Half number 2 was a bit more surreal though. My body was over it. Tired of being such a trooper. I started getting bad mouth sores. So much so that it was even hard to drink my chicken broth. I was exhausted due to the lack of red blood cells. I was hanging out on the ledge so close to needing blood transfusion every week it was risky. My feet started blistering and peeling. Catching up to me, but I was still driven I was going to make it and beat the heck out of this annoying little bugger in my body. I ended up neutropenic and had to get hospitalized after each of my last 3 treatments. Major bummer extra 4 or so day stays at the hospital. Complete misery. Yet I kept going and ya know what …. I BEAT IT.

June I got a CT scan and ya know what came back…EMPTINESS. NORMALNESS. My insides looked like the girls sitting next to me. Well besides the hole that’s left in my chest bone because of the fact that the tumor ate through it basically, but hey I’m down to have a bit of a tender hole left there. As long as there’s no disease. I’m totally happy !! Celebrate Time!!!!!!!!!!

Just in time for summer no more treatments to do can get back to living a normal life. YES!! Spent the next month resting the body still need to try to recover and regrow all those blood cells and work on clearing out the rest of drugs and all that. But man was it amazing to not have to drive to the doctors 3 times a week or go stay at my second home on the 7th floor A-WING.

By the end of July I got the courage to go back and ask to work again. My old boss is such an amazing lady and was going to let me start again. Just needed to wait for the next schedule and she’d let me start back slow so I can adjust back into being a real woman. Not working for 6 months is a bit a of a throw off. I get given 4 short shifts for my first week back.Tuesday night, Thursday morning,  Friday Night, and Sunday night. Excited and nervous I’m ready stoked can’t wait for life to go back the way it was last year.

Wake up Monday with the one of the worst headaches I’ve ever experienced. Maybe it’s just nerves got to be couldn’t be anything else. Maybe a flu or something. Spend the day resting. Smart choice . Make it in on Tuesday. Back in action wild crazy hectic Taco Tuesday madness. Gosh was it great to be back even if I wasn’t feeling good. Made it though then headed home and went straight to bed. Woke up miserable. Head pounding. Could barely sleep didn’t want to be awake. Just miserable. Kept getting worse Wednesday was heartbreaking. Couldn’t eat. Couldn’t sleep. Couldn’t Stand loud noises or light. Headache turned into full blown migraine. Then I did the last thing I wanted to do .. such defeat it was harsh. Sent a text asking to have someone cover my shift in the AM. What a blow to my ego! Plus, talk about risk first week back and not showing up for a shift. Ballsy in a bad way. Worked out though and got it cover pheww.. Still though even staying home with a blindfold on resting all day things were not getting better. Managed to force myself to go in on Friday night. Risky. Found myself getting light headed almost fainted 3 times. I had to go the back and sit on the floor if I wasn’t helping anyone. Raced home as soon as I let go. Whats going on .. Migraines don’t normally last for days and days do they.?!? Mine sure was and continued to .. So I buckled down and asked if she could find someone to cover my shift Sunday as well since I did nothing but rest and be miserable Saturday as well. Promised that if I did get it covered I was going to go to the walk-in to figure out what was going on with me. Fair trade, right? So that’s what happened.

Once again I find myself sitting at a walk-in clinic hoping to find out some answers. Can ya guess what happened? Bet not yet… I was amazed. I got sent home. heheh. But it was with an appointment to come back Monday and so they can do an MRI on my head. Can’t be that serious can it. Of course it was. Walk-ins seem to be my cancer finders. 2 new tumors were found on that test. Brain tumors. Who would of guessed that. Yet another life changing event. Got given a prescription for steroids to help with the swelling that was causing me to be in such pain and some pain killers to help calm the hurt. Back home I go to sleep it off or so I thought. One hour later I’m getting called from Dr. Congdon I need to head to the hospital and get admitted so they can take care of me. That was majorly nerve wracking. Off I ran. Spent the next week in the hospital. Got a Pet/Ct scan. Good news that I still had no other tumors anywhere else! yay! At least something positive I could see. Another MRI done 2 days later. No shrinkage yet on them. BOO. Lumbar puncture was done. OUCH. Then Friday I got my first chemo treatment. Talk about a fast moving week. It was so crazy and hectic quite a blur. Got to head home Monday night. What a week.

Now I’m sitting here getting my 2nd round of Methotrexate. Plan seems to be that I will do 3-4 rounds of Methotrexate and then have another MRI to see if it is working to shrink the tumors. Crossing my fingers. Being so young the doctors are hoping to avoid radiation to my head since the long term side effects could cause major issues early on for me. Imagine being useless in your 30-40’s. Harsh sounding future. If working they’ll just continue to give me another 3-4 round of the chemo and then another test to check if they are gone. On the dark side though if after these first few treatments they aren’t shrinking enough my doctors are having me go get a second opinion at Seattle Cancer Care Alliance and probably going to have me do a bone marrow transplant or whatever they might suggest.

Life and it’s lemons. Squeeze Squeeze … Patiently waiting to deal with life now. Kind of thrown off with how unplanned this treatment idea is, but maybe that’s for the best. Just a go with the flow type of thing. So anyways…. That’s my story so far.