Days 0 through Now

 

So they have their own wierd unusual ways to do things around here like my count up is what I’m doing now , but before it was chemo went in it as -9 thru -1. Cell day is like zeroing out for a new time. You saw I got a card and all from this medical bday I now possess.
Right now it’s Day +11 . Thinking about these past few weeks is harsh. I can’t believe what I’ve struggled and made it thru.

Days now consist of working hard to not go stir crazy. I think, my butt checks are flatter from laying/sitting on them ALL the time. Here’s some more some far to honest and others like yikes lame.

First I get okay skip this is things are gross to you, but some serious liquid bowel movements. I mean 10+ times a day is a bit excessive.I think, it’s worse then nausea, well maybe cause I barely experience that.  That’s more of a hold up since I’ve seemed to wobble back and forth in-between that and being stuffed up there because of all the pain killers I’m given, wouldn’t of made it without it them painkillers but man is it messing up my stomach. This is my nifty drug pump. I had my own button I could press every 6minutes that I was in pain. Strong stuff.

unnamed (20)

Then its been that darn musous doesn’t want to leave got switched over to being a IV Fluid Bag eater, and liquifier. I didn’t drink except when i was required to take a pill. although because of it they did have me cross over into nothing but IVs basically. I also got to use my own like dentist suction tube for when I needed it. Helped lots with swallowing at times when the musous was intense.   Can’t wait till I taste and enjoy food again.

3rd weakness of mine? a rash or well two separate rashes that currently cover like my  whole body. Couldn’t figure out why and where from at first but last night after another dermatologist came to view me they think it’s from chemo and is just two different forms of it. So now I get to lather myself up 2x’s a day.

Being so close to done is hard. It’s just now working to adjust to being normal again and waiting for my blood levels to raise up. which they are doing at a remarkable speed, even the doctors are a bit shocked. Thinking I might get out tomorrow. YAYAYA! At first they were Not for sure on that tho. Had to prove I can get back to swallowing and taking my pills along with eating again since I really haven’t for awhile since they have me on a nice IV that fills my belly so I dont have to hurt my mouth.

unnamed (21)

 

Transplant Day

unnamed (13)

BOY OH BOY finally reached here!! Only been waiting about a month now. Phew so much has happened it’s wild. Can’t express how happy I am to of finally made it to the last leg of my treatment needs( hopefully ).

My day started off with vital checks that made my doctors nervous since all night and still this AM my heart-rate has been a bit high. So that got me to get an EKG. Easy peasy they put stickers on you connect some wires to them and hit a button on the machine to test it. About 10mins. Guessing good results since I didn’t hear anything else about it.
unnamed (10) unnamed (9) unnamed (11)

Then with having a low enough amount on my hematocrit levels I got to get a bag of blood, and tons of fluids. Why do I sound happy about this well it sure has its magical way of perking a girl up. They say low levels cause people to fell fatigued and when we get the blood transfusion it helps boost our energy and it worked yet again. Slept most of yesterday and today I only took one drug induced nap. YAY.

unnamed (14)    Stemcells look like blood. Cell Bath      524de73a-2364-4b12-8118-98ce2aaa8993

12PM Stem Cell Transplant time. Hour long process. 4 bags. 4vital checks. Lemondrops and orange slices. Bags of cells have been frozen so they de-thaw them right before putting them up. Lemondrops and orange slices are to help with keeping your mouth damp and unscratchy. Wasn’t thinking I was going to need them but once I started to cough up a lung 😛 I gave in to their expertise. Also get vital checked before swap out of stem bags to double check the body is handling it. Once the last bag is empty its over unless you count the every 30min vital checks over the next 4 hours. No free time.  Doesn’t seem as scary as everyone makes it huh? I’m in agreeance. Although the tough part is to come as my blood levels continue to drop and take their time  to rebuild back up. Crossing my fingers I’m a champ and recover quickly, but time will just tell.

unnamed (8)

 

 

UW Life.

1-5-16
WooHoo made it to inpatient day. Welcome to a new year and hopefully the last chemo round I experience. Yay!

So this stay requires a check-in with no real check-out date. BUMMER!! Showed up knowing it’ll be around a 2 week stay since I do 9 days of chemo then just got to wait til I’m healthy enough to be in public. My mind a few days like 5. They keep warning me it would probably be more around 2 weeks after my cells are given back to me. 😦 Time sure adds up . I suppose, we shall find out later.

9 days of chemo is broken up into 3 different types.

Thiotepa. Busulfan. Cyclophosphamide.

Thiotepa was given for 3 days. Usual side effects that most chemos come with, but this one requires 4 showers a day because of how it excretes out of your body and can cause rashes and irritation. Doesn’t seem like a big deal but its just more work specially having to wrap up your dressing areas. Just a timely thing and not as enjoyable as a regular shower.

Busulfan was another 3 days. Requires 5 days of pre-meds to help avoid getting seizures. Yup I’ll gladly do so don’t wanna join that club. Another bummer with this type.. It’s given every 6 hours. Doesn’t seem like much but boy did I not sleep these days. 6am chemo 7am nurse swap out 8am Daily meds and vital signs 12pm chemo 4pm vital signs 6pm chemo 7pm nurse swap 8pm vital check 9pm nightly meds 12am chemo and blood draws then 3am vital signs and repeat for those 3days. Not much free time in the night to get straight heavy sleep for yourself. Survived napping as much as possible but was glad to swap over to the next stuff.

Cyclophospiamide accompanied by Dexamethazone(not a fan favorite this is the stuff that made me swell and gain serious poundage.) steroid and mesna which is to help out the bladder and tons of extra fluids. Half the time I lived in the restroom they were giving me so many fluids.

Haven’t had any major issues. I do have mucositis which is just like a having sores all over mouth. Right now its not that bad sore and swollen but actual sores haven’t busted thru yet, yay. Experienced those with previous chemos wasn’t my favorite, and don’t mind waiting longer for it to happen or not at all.

After all the chemo I get a rest day. Just lots and lots of fluids. Waiting till the next morning to get the transplant. I made it! YES!!

unnamed (6)unnamed (7)

Whats been happening.. 12/30/15

Whew, its been awhile since I’ve posted. Apparently no blogging champion here. I’ll try to work on that. Nothing major has happened.

My meeting with the neurologist got me the info that my tumors are now half the size of what they were last time. So I believe that’s about 2cm X 2cm each or so. Can’t remember the sizes exactly and I don’t get print outs so we’ll just go with it. Also, I received 2 appointments for lumbar puncture chemo sessions and a whole spinal MRI.
Not a big fan of lumbar punctures. My last post I had gotten a normal one done without the chemo and during that session I had received a  decent amount of IV sedation and lido-cane( the same goods you get injected with while having a cavity filled)  shots in the area of enterance. With these appointments I was only given the lido-cane shots. Man is this girl not the toughest cookie around. Couldn’t do it. Got poked 3 times and tensed up so much that the doctor wasn’t able to draw out some spinal fluid or inject in the chemo. Since she was unable to achieve her goal they gave me some anti-anxiety pills and had me go down to radiology to try to get the procedure done since they can take picture of the spine and would know the best to enter in at causing them to have better luck. DIng DIng DIng. Accomplished first try ,YES!

Snapchat-1878263599288109912

SInce it went smoother down there in radiology my 2nd time was just set up with them and went just well by the same doctors. Sweet people.

Spinal MRI smooth sailing just like any other of the many I’ve had. Laid in machine for an hour listened to 90s radio to help distract for the very loud noises the machine takes while snapping its pictures. Haven’t heard anything back about it yet.

Oh yeah.. remember my double sided bone marrow biopsy I had done? Well, unfortunately it came back odd. Although the doctors believed that was only because of the neupogen shots that I had been receiving before.  Good news right don’t need any need issues popping up. Bad news: only way to verify that was to wait it out a bit longer then take another sample to test. Gosh darn getting stabbed legally again. Starting to wonder if I’m annoying these doctors and they’re just taking out legal revenge on me .. heheh JK.

This time I had to go in on on Xmas EVE ( which BTW is my 1year mark of officially finding out the answer of having DLBCL) and didn’t get my IV sedation but I did get anti-anxiety pills, this unusual pain killer lollipop ( things are sure growing up in my life ) and more lido-cane shots. Went pretty swell not to much pain. Eventually you just pretty much feel like someone who kinda knows what they’re doing has kicked ya in your hip or back area where they stab away at. No answers yet about that either.

20151224_100209

Okay then there’s this…
20151230_091821 20151230_091807                                             20151230_091759

Which is Harmony being a young troublesome rule breaker and having to deal with the consequences. I maybe enjoy alcohol a bit more then I need to. All and every doctor I’ve ever met though obviously don’t recommend drinking. Always have always will with or without cancer no doctor suggests drinking. I’ve drank through-out my whole treatment period. Just got recommend and suggested to slow it down, but it was never a major deal. Till now. Seattle is ALOT stricter. Although I have had other nights of drinking and partying with friends other times. It wasn’t as excessive as this amazing weekend that I had on the 19th and 20th. Raised my liver levels quite a bit and if they don’t drop back down enough they are going to make me wait a bit longer to go into inpatient and start that high intense chemo since the chemo also causes damages to the liver and they don’t want to make it so intense that it’ll cause permanent damages. Makes sense they can damage me as much as they want with all their drugs and pills and what nots but I should be on my bestest behavior BOO. So, now I’m pulling up my big girl panties and learning to enjoy  my holidays and free time completely sober even if not another sole spending time with me is on my same page. Which to be honest isn’t that hard I’m not that much of a lush, but it is a bit of a let down. I’m a slight party animal what can I say. 😀

Anyways, Thats all I got. Tomorrow I go get an ultrasound on the liver to make sure I didn’t cause damages that wont be repaired before the 5th but they don’t believe i did they are just like I’ve said overly cautious and like to double check everything. So, I suppose we shall see.. Moving on .. Almost done. Can’t wait.

Recent Testing 12/2 – 12/8

Wednesday- Breathing. What an odd intense test. Leaves you feeling a bit winded but no pain so it went well in my mind. Sounded like I did a decent enough job but didn’t get an official answer.

Thursday- Once again I got shoved in a machine and got an MRI. Thank goodness I’m not claustrophobic I’d not survive I’m constantly being tossed in one of these type of machines. I got told on this though that things have gotten a bit smaller but think I will find out more with my future appointment with a neurologist.

Friday- I got my long avoided pap smear and check to see if I actually know what kind of birth control I’m using. Which I do and I get to keep. Apparently if I had the other type of IUD I would have to have it removed. Whew glad I don’t. Other then that I got told it all looked normal and still waiting on the results from the swabs they took for whatever reason.

Monday – EOG. basically a ultrasound of your heart. Haven’t heard if it came back with good results or not but I’m thinking I’ll find out all my test results tomorrow or Friday.
It was easy and painless. Just laying there and following instructions.

Tuesday- Bone Marrow and LP testing. Most painful out of all of these, but still nothing extreme. I’m left feeling tender kind of like someone that knows what they are doing got 3 good swift kicks in.

unnamed (1)

Being the special girl that I am I got to get both sides of my hips tested for the bone marrow. Generally it’s one or the other but because of my type of cancer and what not I get more. GO ME>

Tomorrow I get to go see a neurologist and I believe learn more about whats going on with my brain and what he thinks will happen. Kind of nervous about this but excited as well to hear some news.

Those that LOVE me <3

Some things help you realize just how much someone really feels about you and now that I’ve spent the last year with cancer I’ve gotten a good jist on that. So many friends were so close and sweet during the first half of the year, but as it continued on its sure dwindled down. Not that I believe they stopped loving me completely we’ve just become distant friends. I’m down to a small number of amazingly true loving friends that are still sticking by my sickly butt. Here’s some loving photos of all those close and true.

family friends

Brittney 2007 Party. Big get together for me to cut my hair and go bald. Look at all my adorable buddies.

kj

The two most amazing girls( Jacqueline and Kate ) that have been there for me an unbelievable amount. I love them like sisters. p.s. That was my first concert. Go Foo FIghters !!

unnamed (3) Kate unnamed (2) Jax

11017857_10206079041169365_57001995971254295_n

Alyssa Alyssa Alyssa.. You just blow my mind with how insanely sweet you are. I’m truly blessed to of had the chance to meet you and become friends with you! Even though we’ve only known eachother for a short while I hope it doesn’t stop anytime soon and we can continue enjoying hanging out.

prom

Some of the best from Adult Prom came off with the idea while creating my bucket list and a friend push the idea to the best local bar and they went with it. Yes I was Queen…
prom

My proof. The KIng and I. Mr. Nigel. Tons of long days and nights together. My number one friend for those first 6 months of dealing with the big C. Even though we aren’t together as much as before he’s still a loyal friend I cant imagine not having in my life.

4d12781b-bb9e-4129-918e-325fcc720b18

Lee 😀 oh boy is he wicked awesome and my co-hockey watcher. Kept me entertained with vibrant conversations and kick ass games most this year.

unnamed

OH Drew. Been there with me on some crazy nights and taken me on so many great adventures. HIking and driving up mountains I’ve never had the nerve to adventure upon myself at the time. He’s honestly one of the greatest guys I know and I can’t believe my luck to of landed him as such a loving friend.

unnamed (5)

Keiran Keiran Keiran … Great Buddy I am so very greatful I got to meet him at Miss Amber’s( the other sweetheart in the picture)  birthday party. Through all the hospital visits and downtown hang-outs I can’t imagine not having him involved in my life.

unnamed (4)

Then there’s this truely nifty lady. Miss Khristina. My part friend full time boss. I had tons of fun on “work” tasting and researching outings such as this day was. She was such a loving soul that aloud me to work when I could and hasn’t shoved me away even after I’ve had some honestly bad days in front of her. I owe her a huge THANK YOU for getting me into serving and teaching me so much as well as all the great memories I have with her.

 

 

Caregivers

As per hospital rules I had to get caregivers. Someone to stay with me 24/7 to make sure I’m staying healthy and safe. This early in time I find it pointless except on the days I need assistance(mostly just a ride home) after getting knocked out for some surgery type thing or something, but doctors orders.

Later on they will have major responsibilities, but I’ll try my best to minimize them as best as possible. Don’t need these loving characters  to be disappointed they agreed to help me while being sick.

Anyways soo my thanks go out to these loving souls:

Shane aka Dad

Snapchat-9007550876087258672

That’s my loving father one hour after showing up to start his watch he got this set up in his room and began playing. BOYS. hehehe Besides the solo time at video-gaming he’s been great company 🙂
Tara aka Mom

mom

Mother dearest. Even though she hasn’t been around much yet I still appreciate the weekend days I get to spend with her and Damon (my little brother) I’m saving her for the tough job when I get done with my transplant and need the most assistance shes my go to gal. Can’t ever stop appreciating her for all her help on my road to recovery.

 

Catch up

So, it sure has been awhile since I wrote anything. I’ve been distracted plus I’ve also been just trying to set up the site to something more useful and lovely looking. Took awhile having no clue really what I was doing. Thanks though to my Aunt J I got some tips and was able to figure somethings out.

Anyways medical update: A lot sure has happened since I got to post about my last chemo experience. I ended up not continuing the methotrexate chemo since it wasn’t doing anything and my tumor actually started to re-grow a bit. YIKES! Thank goodness my Doc is into being worried about my aches and pains and had decided to do another MRI to find that out.

With Chemo out of use I got switched to Radiation. 20 rounds of whole brain radiation. Then 8 more rounds focusing on the tumors. Good news that got them to shrink for sure. Also made me gain more weight and loose my hair again. 😦 boo.

Two weeks after finishing up my radiation I went thru another round of chemo this time it was Ara-C yet another strong dose that had me do it inpatient style like always for 4 days to just try to have extra care and get rid of any cells that might have re-came back in my body.

Nov. 18th = The start of my new adventure of healing with Seattle Cancer Care Alliance.

Boy let me tell ya they are a tough bunch. Haven’t had a day off yet. To top that sometimes I’m here for 12 hours. Talk about overwhelming.

Oh BTW just in case you didn’t catch the info in my about me story I’m here to get an autologous stem cell  transplant.

They sure have kept me busy and doing a bunch to get all my prep and check-ups done before the actual transplant can occur.

Blood transfusion and Platelet  transfusion are now checked off my medical bucket list. It’s amazing how getting them makes ya feel so much more awake and vibrant. Thanks to everyone that’s ever donated either. Who knows maybe you even helped me  out. 😉

My list of other procedures :
EKG, breathing test, Chest Xray,  MRI, and tons of hydration IV’s. So far and many more to come.

OH and thank goodness but I was about to move into SCCA housing which is only a few minutes from the clinic also comes just a bus to get me here. So very nice to not have to drive 1+ hours each way to get to the clinic and then pay $4 to park. It was starting to get a bit spendy plus tiring.

Other then that I’m doing well. Bored , Very tired ,and pretty queezy all the time, but I’m alive so can’t really complain.

I’ll work on posting more often.
Thanks for checking up on me.

Harms ❤

3rd Times the Charm?

Monday 8-31-15

checkin 11:45
make it to room 12:45

congdon 3:00

first ph level test 330

saline bag started 4 finished 9
methotrexate 10pm

WARNING: Quite a bit of complaining/whining below.
Treatment Patience is a virtue that I seem to not have alot of anymore.  I’m not sure if it’s my steriod induced annoyance , maybe it’s jealousy or I’m just naturally annoyed that it takes so many hours to get things started when I show up everytime. I mean think about it .. This is scheduled weeks in advance basically and for sure atleast 4+ days for sure. Why can the patients that go to the cancer center be prepped and get there medication when their appointment is and then leave hours later after getting pumped with their good poison yet I can’t even get my chemo until after I’ve been sitting in the hospital for 12 hours. Late night chemo isn’t my favorite. It then ends up making it so they do extra testing through-out the night at all these late night hours. Who else is up to get woken up at 2am to have a needle shoved into their arm for testing? Not my favorite.

Carnival Time !

DSCN4133 - Edited (3)Major Event Just Happened!
Damon Turned 9. Holy Smokes time sure does fly.

Last hospital visit we spent the first day I got there planning out events to do a home DIY Carnival Party for the little sucker. 😉 and man can I say,” Planning is so much easier than actually putting together and making it happen.”, but man I do believe it was worth it.

Games included: Gunny Sack Race, Balloon Pop, Shoot the Cans, Build Your own Coaster, Toss the Beanbag, Pin the Nose on the Clown, Scavenger Hunt and a Pinata.

Lots of fun homemade Snacks: Popcorn, Rice Crispy Treats, Fruity Pebbles Rice Crispy Treats, Chocolate Dipped Marshmallows, Chocolate Dipped Pretzel Sticks, Corn-dogs, and Caterpillar Grapes. YUMMMMM! ❤

BIG SHOUT OUT to the BEST FRIENDS of ours MISS JACQUELINE, MISS KELSEY, and MISS MICHELLE. All these gorgeous girls showed up and made the event go so much smoother. THANK YOU!