 If you remember from the beginning, I named this blog, "The Good, the Bad, and the Ugly".....I now introduce you to some more ugly! You have good days and you have bad days. Some days I don't come out of my room, other days I'm on the couch sewing all day with Brodie. The key is to enjoy your good days and realize there will always be bad days. Someone asked what the infamous cancer/chemo mouth sores look like...here's the best picture I could get that definitely falls under the ugly category, sorry not sorry. #ItsMyLife I'm lucky to which I don't get too many and they usually don't last too long. I do however, have the fun bad taste in my mouth most weeks. Usually my week before chemo it wears off a little....and you eat everything in sight because you can actually taste it! Then chemo weeks come and your doomed...but of course you still eat because....well hello, a girl's gotta eat! Finally, I wanted to talk about attempting make up when you're bald. Who knew this would be such a feat! First, when you have hair you know you obviously blend in your makeup to your hairline. Cough cough, well when you don't have a freakin' hair line thats a bit hard. You don't want to put make up on your head but you also don't want to have a visible color line change on your forehead. As you've read, I'm not a fan of wigs, but at least it helps in the makeup catastrophe. However, if I'm able due to the "occasion" I choose to be bald. Theres no feeling normal with cancer, being bald or with a wig on either. But I am more comfortable without it than with it. Med update below...  My levels have been the lowest they've gotten lately, which
A) means I never want to leave my bed B) means I can't be around people and C) means I have a chance of having to get a blood transfusion. He brought it up again yesterday after my red count was the lowest it had ever gotten. So fingers crossed thats not a going away present I get after my last chemo! The clock is ticking! Only a few days left till my last chemo day and I couldn't be more anxious! I've been applying for jobs and so far have one interview so fingers crossed I'll be back in a school come the first of the year!
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As you've seen, I haven't updated in a while...for many reasons, but the biggest being my fingertips are still numb and tingly from chemo and everyday things such as holding a pencil, typing or even using my phone is much more tedious and difficult than you'd think. So theres my excuse, take it or leave it! Health updates: I got my first "bad" news on my levels. All my counts were low which is probably why I was tired ALL the time. I was told I was basically on house arrest and not to be around anyone and was given a prescription to take if I got sick or a fever. Also, when you have a 100.5 fever or more you have to be directly admitted to the ER with my cancer (not sure if thats with all)....so it was another fun week in my room sleeping! Because my red count was still low last week it was brought up I may have to have a blood transfusion. I'm assuming this would happen Monday when I start my chemo round. TBD! On the plus side, Monday is my 2nd to last chemo week!!! December 1st can't come soon enough! On a work note: As you know I have been teaching for VIPKID to make some money till I can get a teaching job again. The actual teaching part isn't bad at all, but the being on China time has been killing me! I pull all nighters teaching from 8pm till 8am (yes, 12 hours) then sleep as much as I can during the day. Not my preferable life situation at the moment, but beggars can't be choosers! I have already started to apply for AP and teaching jobs starting ASAP, so fingers crossed!  I tried to think of words to explain this day for weeks now and I am still speechless so I'm just going to put my Facebook post about it : ) When you go to school to surprise your Beachers and get hugs from your BCE family and THEY surprise you with the school all wearing lime green and crazy socks, flowers, a million sweet notes, hugs galore, and even a get together with every past Beacher in the library plus Beachers parents! I mean, words just can't express how amazing not only they all are, but how great it was to be there, see everyone, and each and every one of those awesome hugs! I can't count how many parents came up to me to tell me my past sweet Beachers pray about me every night and always ask about me! Just Speechless...but definitely made my month and beyond grateful! Cancer definitely can't win when you have a whole school behind you 😉#BeachersForLife #LoveMyBCEFam A little bit of this and that with some updates. Why yes, I have been MIA/slacking on my blog. I have no good excuse. I would like to say that Cancer/Chemo has a lot of symptoms: ~I can deal with the nausea ~I can deal with the headaches ~I can deal with the nonstop fatigue/tiredness ~I can deal with my tastebuds being on protest and everything tasting horrible ~I can deal with my whole body hurting and being swollen ~I can deal with the ends of every finger being numb 24/7 I can deal with all these symptoms and more...but what has gotten me the worst is the depression. Man, is it brutal. On the rare occasion I do feel like I can do anything and break my house arrest, you just don't want to. You're always upset, angry, or sad because....well everything. Obviously, cancer turns your whole life upside down and it sucks. Yes, many people say to enjoy my break while I can yada yada... but this is the worst break ever. Cancer/chemo not only effects you physically, but mentally, emotionally, and most of all financially. Not having an income has to be the worst thing ever. So theres my pity party for 1..... A few updates: ~Good news, my last chemo is actually December 1st so earlier than I had thought/planned, so hopefully by Christmas I'll feel decent ~I'm in week 1 of my labs/drs...after next week I will officially be halfway ~I started working for VIPKID to attempt to make at least a little money and my first class is Friday ~My levels have been good so my chemo was upped (my symptoms are unfortunately always the worst the first few days after chemo) ~I've taken up sewing....yes, sewing, you read right and don't judge...the whole fingertips being numb doesn't help but oh well, it burns time What makes me feel sane or like a normal person?! Watching Ellen everyday and at least getting to laugh for an hour out of my day : ) Let's talk about wigs, baby...let's talk about all the colors and the styles that may be....let's talk about wigs ; ) |
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I'm sure not many people would say Cancer was meant to be, but let me give you my thoughts on why I think Cancer, specifically Lymphoma, was meant to be for me! Crazy? I know : )
If you know anything about cancer, there are a ton of different kinds and subcategories of each. Each main "category" is represented by a different color ribbon and celebrate a certain month for awareness. You have probably seen a million pink ribbons which represent breast cancer....but we're not all pink!
If you know me, you know my favorite color has always been lime green, not just green, but LIME green! Well, what are the odds that my cancer, out of a ton of different colors... is represented by lime green?! Yup, meant to be! (I have other reasons, but I know I would sound totally crazy if I said them!)
So, it's finally here....MY cancer awareness month, September! So break out your lime green (and watch for my shirts to buy that are on the way) and support not only my lymphoma journey, but so many others too!
If you know anything about cancer, there are a ton of different kinds and subcategories of each. Each main "category" is represented by a different color ribbon and celebrate a certain month for awareness. You have probably seen a million pink ribbons which represent breast cancer....but we're not all pink!
If you know me, you know my favorite color has always been lime green, not just green, but LIME green! Well, what are the odds that my cancer, out of a ton of different colors... is represented by lime green?! Yup, meant to be! (I have other reasons, but I know I would sound totally crazy if I said them!)
So, it's finally here....MY cancer awareness month, September! So break out your lime green (and watch for my shirts to buy that are on the way) and support not only my lymphoma journey, but so many others too!
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Now to go to the hospital to get my port put in!!
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This was the beginning. Starting Saturday, my hair just started falling out everywhere. When I say everywhere, I mean EVERYWHERE! It was like I was leaving a trail everywhere I went...and not a cookie crumb trail which I would've much rather. My bed was filled with hair, taking a shower was a joke, and finding hair in your food had a whole new meaning...considering I couldn't blame it on anyone else. These pictures were just from Saturday...
Above was just two days later, Monday. Handfuls at a time were falling out at this point. As you can see from the below pictures I had lost about half my hair at this point and you could see my scalp. I was tired of shedding everywhere, waking up in a bed of hair, feeling it all over me, and was tired of finding it everywhere...so I made my shave appointment. I wanted it to be actually shaved i.e. bald skin like it is going to be, but the person cutting it ended up just shaving it on a zero, which works better probably anyway. The little hairs left I'm sure fall out shortly.
Just a heads up (hahaha pun intended)...people notice when you stare. Not gonna lie, I used to be one of those starers. It's like rubber-necking, you just have to look! However, I forget Im bald until I look in a mirror, feel cold, or see people staring...which happened when I went to the store later today and was definitely something to adjust to and get used to. I go for a wig fitting tomorrow morning so we'll see how that goes! Maybe I'll finally go blonde....or curly....or lime green?!
As for medical tidbits for the week:
~My levels came back good so I "get" to have my port put in at the hospital Friday afternoon...and hopefully this time it won't be aborted again after I get put under because it's too risky with my levels
~I will be admitted into the hospital Monday and staying thru Saturday for my next chemo round (darn holidays)
~My chest pain and cough has gotten much better, now my biggest symptoms are headaches, hot flashes, lightheadedness, and of course the lovely relentless night sweating
As for medical tidbits for the week:
~My levels came back good so I "get" to have my port put in at the hospital Friday afternoon...and hopefully this time it won't be aborted again after I get put under because it's too risky with my levels
~I will be admitted into the hospital Monday and staying thru Saturday for my next chemo round (darn holidays)
~My chest pain and cough has gotten much better, now my biggest symptoms are headaches, hot flashes, lightheadedness, and of course the lovely relentless night sweating
It takes a special person to be a teacher, I am obviously biased but agree, but mannnn does it take a special person to be a nurse! First off, I'm a fainter. Not just getting my blood either....all the time. The pure sight of hospital rooms, iv's, blood, and even just the talking about it makes me go 2 sheets to the wind. I don't know how nurses deal with all they do, not even just the medical side, but the constant caring and concern they do nonstop. Nope, I couldn't do it. Just like there are special teachers such as our amazing special education group and behavior unit, I feel like there are special nurses like cancer nurses and hospice nurses (yes, they are all wonderful, but it takes an even more special individual for these roles.)
I have been lucky enough to have AMAZING nurses at my oncologist office. My one main RN, Cynthia, is probably my age and the most amazing person/nurse I could ask for! Being a cancer nurse, you know that some of your patients unfortunately aren't going to make it, as with hospice, but yet these people give their all to make your last days a little bit more bright and less stressful. I've been brainstorming what gifts I can start bringing her, although I'm sure (like teachers) sweets may be overdone so I gotta get creative! She makes my chemo and lab trips bearable which takes a lot!
As for my personal, in-home nurses, my parents. Poor things, this year has been a complete crap chute for them when it comes to me! First, in February I broke my foot and had to get a screw put in and wasn't able to walk for months and had to live with them for several weeks since my apartment is on the 3rd floor. Then I had a tonsillectomy and even though I only stayed with them a night or two, they still had to do the whole hospital fun with me. And now cancer....till at least January. By the time the year ends they should be honorary RN's : )
I have been lucky enough to have AMAZING nurses at my oncologist office. My one main RN, Cynthia, is probably my age and the most amazing person/nurse I could ask for! Being a cancer nurse, you know that some of your patients unfortunately aren't going to make it, as with hospice, but yet these people give their all to make your last days a little bit more bright and less stressful. I've been brainstorming what gifts I can start bringing her, although I'm sure (like teachers) sweets may be overdone so I gotta get creative! She makes my chemo and lab trips bearable which takes a lot!
As for my personal, in-home nurses, my parents. Poor things, this year has been a complete crap chute for them when it comes to me! First, in February I broke my foot and had to get a screw put in and wasn't able to walk for months and had to live with them for several weeks since my apartment is on the 3rd floor. Then I had a tonsillectomy and even though I only stayed with them a night or two, they still had to do the whole hospital fun with me. And now cancer....till at least January. By the time the year ends they should be honorary RN's : )
This week was thankfully just a lab/dr week. Tuesday after my appointment I was having some pretty brutal pains in my chest and throat so my dr called in a couple prescriptions which thankfully helped tremendously. Unfortunately, one of the many symptoms from chemo that I've had lately is bone pain. I'm just sore all over...but I guess I'll take that over throwing up any day!
I'm crossing my fingers my levels will be ok and my mass a little smaller soon to finally get my port put in! We shall see...
The last picture is my Care Box delivery. It includes lots of medical, comfort, and drink items that should help me the next few months. If you haven't heard of Care Box and are looking for something to donate to or be a delivery driver it's definitely a great program to look in to!
I'm crossing my fingers my levels will be ok and my mass a little smaller soon to finally get my port put in! We shall see...
The last picture is my Care Box delivery. It includes lots of medical, comfort, and drink items that should help me the next few months. If you haven't heard of Care Box and are looking for something to donate to or be a delivery driver it's definitely a great program to look in to!
You always hear the saying, "Money doesn't buy happiness"....I feel like this can be debated heavily. Money may not buy the actual happiness, but it buys food, clothes, pays the bills, and quite frankly buys your health, amongst many other things.
As you may or may not of read, here is the timeline of what went down:
~decided to move to Port A to help myself financially since Austin is ridiculous in cost of living and to financially help my parents (now that plan obviously went the complete opposite way)
7-19~ Interviewed in Corpus and got the job on the spot
7-27~ finally heard from CCISD HR to make it official and set my signing date (scheduled for 8/2 when I was heading down to Corpus)
7-27~ since it was finally official I didn't want LT to be waiting on me to fill my spot so late in the summer so I turned in my resignation, as well as put in my notice to my apartment
7-29~ my health was just getting worse and worse by the minute and I couldn't handle it anymore so went to the ER, they then sent me to hospital by ambulance and the journey began
8-1~ LT filled my spot after conducting interviews so no matter if I tried to go back I couldn't unfortunately (obviously no ones fault by any means)
8-2~ lab results came back diagnosing me with Cancer (this was also my CCISD scheduled day to sign my contract....IE I never got to sign with my new district leaving me now resigned from LT and jobless...not to mention no insurance after this month because of the above)
The financial side you may not be able to envision or understand:
~I obviously will not have insurance since I am jobless through this huge medical bill time of need
~we have looked into Cobra which seems to be the only option given my circumstances, but if you know anything about Cobra it is super expensive (even though obviously way less than being completely insurance-less) and will cost me about $600 a month (not sure how they expect that when you are unemployed) and this doesn't cover labs, prescriptions, parking at the drs which you have to pay for every time...and many more expenses
~we also found out my apartment complex will not let me break my lease early so I will essentially be paying for my apartment for 2 months of me not living there...another $2,400 cost I obviously don't have income to pay for
~we are trying to sell my just now 2 year old car so I won't have to pay my car payment and insurance since I won't be able to drive much and/or can use either of my parents vehicles
~not to mention, since I graduated with my masters in May all my loans will be coming out of deferment for undergrad and grad school so I'll have to start paying those lovely things again....Ellen, seriously, where are you when I need you?! : )
We initially didn't know how much to set the GoFundMe for since we really didn't know what to expect. We have now raised it since the bills are starting to roll in. Between the ER, ambulance, 7 day hotel/hospital stay, CT scans times a million, biopsies, X-rays....you get the picture we are now just trying to chip away at them one by one. And of course, this is just the beginning of more to come and there is talk I may be having a lovely extended stay at hotel Seton in another week or two....stay tuned : )
As you may or may not of read, here is the timeline of what went down:
~decided to move to Port A to help myself financially since Austin is ridiculous in cost of living and to financially help my parents (now that plan obviously went the complete opposite way)
7-19~ Interviewed in Corpus and got the job on the spot
7-27~ finally heard from CCISD HR to make it official and set my signing date (scheduled for 8/2 when I was heading down to Corpus)
7-27~ since it was finally official I didn't want LT to be waiting on me to fill my spot so late in the summer so I turned in my resignation, as well as put in my notice to my apartment
7-29~ my health was just getting worse and worse by the minute and I couldn't handle it anymore so went to the ER, they then sent me to hospital by ambulance and the journey began
8-1~ LT filled my spot after conducting interviews so no matter if I tried to go back I couldn't unfortunately (obviously no ones fault by any means)
8-2~ lab results came back diagnosing me with Cancer (this was also my CCISD scheduled day to sign my contract....IE I never got to sign with my new district leaving me now resigned from LT and jobless...not to mention no insurance after this month because of the above)
The financial side you may not be able to envision or understand:
~I obviously will not have insurance since I am jobless through this huge medical bill time of need
~we have looked into Cobra which seems to be the only option given my circumstances, but if you know anything about Cobra it is super expensive (even though obviously way less than being completely insurance-less) and will cost me about $600 a month (not sure how they expect that when you are unemployed) and this doesn't cover labs, prescriptions, parking at the drs which you have to pay for every time...and many more expenses
~we also found out my apartment complex will not let me break my lease early so I will essentially be paying for my apartment for 2 months of me not living there...another $2,400 cost I obviously don't have income to pay for
~we are trying to sell my just now 2 year old car so I won't have to pay my car payment and insurance since I won't be able to drive much and/or can use either of my parents vehicles
~not to mention, since I graduated with my masters in May all my loans will be coming out of deferment for undergrad and grad school so I'll have to start paying those lovely things again....Ellen, seriously, where are you when I need you?! : )
We initially didn't know how much to set the GoFundMe for since we really didn't know what to expect. We have now raised it since the bills are starting to roll in. Between the ER, ambulance, 7 day hotel/hospital stay, CT scans times a million, biopsies, X-rays....you get the picture we are now just trying to chip away at them one by one. And of course, this is just the beginning of more to come and there is talk I may be having a lovely extended stay at hotel Seton in another week or two....stay tuned : )
Chemo week one is officially DONE! Unfortunately, got another sneaky surprise yesterday that we weren't aware of. I may of gotten rid of my wolf pak for the next 2 weeks during my lab weeks, but then they slapped an "on body injector" on me for the weekend. Basically, I am supposed to get a shot at the end of my chemo weeks to help my white blood count since they will be pretty bad. I was initially told this was a shot I would get on fridays before I left treatment. NOPE! The shot apparently can't go in until saturadyas, to which they are obviously closed, so they put this lovely contraption on your arm (on the other side of my picc line....my poor right arm). They then prick you with the needle while your there, then 27 hours later since the needle is still in, it shoots my shot in my for a duration of 45 minutes. Apparently, its too rough if it's put in any faster. So, I will have this thing beeping at me later today and shooting me full of more meds BUT at least I can take it off after its dispensed and somewhat have a normal night sleep....aside from my picc line (that thing can't come out soon enough).
Whether it being overly ambitious, hard headed, or just not wanted someone to have to drive me everyday, I decided that I was going to drive myself tuesday to treatment. I needed to go to school first to drop some things off, pick some things up, and of course see my BCE fam. I learned quickly this was not my brightest moment. I instantly went downhill just walking down the halls. I ended up pretty much passing out on Keri's table in her classroom and thankfully had two sweet BCE people there with me to grab me some water and make sure I didn't croak. Needless to say, it took me a while to get color back and not feel/look like death. I stayed a little longer to talk to my awesome team and let my body recook before driving to chemo.
Once at chemo, I passed out 2 more times...however, I guess if you're going to pass out somewhere the dr is the place to do it! It was the worst I had undergone thus far and the nurses were super sweet helping me with cold packs, fans, meds etc. I mean my lips turned blue and everything. This has been happening more frequently lately. My RN went to go discuss with my oncologist and this is what was said. There obviously be a mulitude of reasons this is happening:
~because I was taken off steroids and I degrease so rapidly without them
~the tumor/large mass is growing making it even harder to breath
~starting chemo may of just pissed everything off
~my heart may be filling with fluid again
Because of all of this, he wanted me to do another echo yesterday to check my heart and I should be getting these results today. Either way, he put me back on steroids which help tremeondsly.
Tonight (thursday) will be my last night with my wolf pak attached for the next 2 weeks and I can't even begin how to describe how excited I am about that. Forget attempting to sleep with this thing, get dressed, and just move around in general, the true test is taking a bath! It's pretty much impossible.
You always hear there is no tired like teacher tired, which I can 100% vouch for, but I now know there is no tired like chemo/cancer tired! It just wipes you out completely. Even though I wish I were with everyone on the first day of school, it was great getting to see and hear how it went from my BCE fam ad past Beachers. I know they will all have an outstanding year!
Now off to chemo for the day!
Once at chemo, I passed out 2 more times...however, I guess if you're going to pass out somewhere the dr is the place to do it! It was the worst I had undergone thus far and the nurses were super sweet helping me with cold packs, fans, meds etc. I mean my lips turned blue and everything. This has been happening more frequently lately. My RN went to go discuss with my oncologist and this is what was said. There obviously be a mulitude of reasons this is happening:
~because I was taken off steroids and I degrease so rapidly without them
~the tumor/large mass is growing making it even harder to breath
~starting chemo may of just pissed everything off
~my heart may be filling with fluid again
Because of all of this, he wanted me to do another echo yesterday to check my heart and I should be getting these results today. Either way, he put me back on steroids which help tremeondsly.
Tonight (thursday) will be my last night with my wolf pak attached for the next 2 weeks and I can't even begin how to describe how excited I am about that. Forget attempting to sleep with this thing, get dressed, and just move around in general, the true test is taking a bath! It's pretty much impossible.
You always hear there is no tired like teacher tired, which I can 100% vouch for, but I now know there is no tired like chemo/cancer tired! It just wipes you out completely. Even though I wish I were with everyone on the first day of school, it was great getting to see and hear how it went from my BCE fam ad past Beachers. I know they will all have an outstanding year!
Now off to chemo for the day!
I can almost guarantee this will be one of the only days I do two blog upates on the same day BUT I figured since it was my first day I should update how it went...
The good: initially we thought/were told I was going to have to do chemo EVERY week for the entire 18 weeks. Now it's been clarified that I do a full week of chemo M-F with my additional shot on Friday for my white blood count, then have 2 weeks "off". Now during my 2 weeks "off" I still have to come in T/Th to get labs done to make sure my levels are ok and this determines how much higher or lower dosage they give me my next chemo round.
The bad: However, apparently the 2 "off/lab weeks" are when you are the sickest so not sure if that's an upside of not having to come in for treatments or not. BUT, only 30 total days of chemo/6 full weeks sounds a whole lot better than 18 full weeks so I'll take it! So, I will have 3 days a week on my 2 consecutive "off/lab" weeks we wont have to drive into Austin...even if I am feeling bad, I'll take it! I'm hoping I will feel ok enough to sub on these days unless it's a time where a lot of sickness is going around and then I can't take the chance. I was told if I get sick at all during my 18 weeks they have to postpone and push back a week which would then bring me in to still have chemo treatments in January which I will do anything to not have to do. So, my plan on subbing may or may not work out...tbd.
The ugly: Oh dear, the biggest surprise of all.....I also found out today I have a new best friend that gets to go everywhere I go 24/7 that's attached to me...he's officially named the Wolf Pack (no I didn't choose the name, and no the liquid in him unfortunately has no connection to any Hangover movie or I might like him a little more)! Apparently, I'm one of the lucky ones that not only has to continue chemo at home during my full chemo weeks 24/7, but I also have the largest quantity you can have so my Wolf Pack is quite the lug around. So, showering, sleeping, eating, and just doing pretty much anything is going to be quite the sight! I will have this lovely contraption hooked up to me 24/7 from M-Th on full chemo weeks then they keep it Friday after my treatment and I don't have it for 2 weeks until my next full chemo week. So much for being cancer incognito until my hair falls out, this thing is quite the fashion statement!
The good: initially we thought/were told I was going to have to do chemo EVERY week for the entire 18 weeks. Now it's been clarified that I do a full week of chemo M-F with my additional shot on Friday for my white blood count, then have 2 weeks "off". Now during my 2 weeks "off" I still have to come in T/Th to get labs done to make sure my levels are ok and this determines how much higher or lower dosage they give me my next chemo round.
The bad: However, apparently the 2 "off/lab weeks" are when you are the sickest so not sure if that's an upside of not having to come in for treatments or not. BUT, only 30 total days of chemo/6 full weeks sounds a whole lot better than 18 full weeks so I'll take it! So, I will have 3 days a week on my 2 consecutive "off/lab" weeks we wont have to drive into Austin...even if I am feeling bad, I'll take it! I'm hoping I will feel ok enough to sub on these days unless it's a time where a lot of sickness is going around and then I can't take the chance. I was told if I get sick at all during my 18 weeks they have to postpone and push back a week which would then bring me in to still have chemo treatments in January which I will do anything to not have to do. So, my plan on subbing may or may not work out...tbd.
The ugly: Oh dear, the biggest surprise of all.....I also found out today I have a new best friend that gets to go everywhere I go 24/7 that's attached to me...he's officially named the Wolf Pack (no I didn't choose the name, and no the liquid in him unfortunately has no connection to any Hangover movie or I might like him a little more)! Apparently, I'm one of the lucky ones that not only has to continue chemo at home during my full chemo weeks 24/7, but I also have the largest quantity you can have so my Wolf Pack is quite the lug around. So, showering, sleeping, eating, and just doing pretty much anything is going to be quite the sight! I will have this lovely contraption hooked up to me 24/7 from M-Th on full chemo weeks then they keep it Friday after my treatment and I don't have it for 2 weeks until my next full chemo week. So much for being cancer incognito until my hair falls out, this thing is quite the fashion statement!
Please excuse my swollen face/neck and no make up! As you can see the rest of my cancer friends have an easy 40-50 years on me so I felt like quite the youngin' for once! And you just can't beat coming home to gorgeous flowers ; ) sure miss my sweet Beachers! Oh, and make sure you get a good look at my new bestie, Wolf Pak!
It's going to be one long day (and only got abut 3-4 hours of sleep), over 12 hours of fun which includes 6 or so hours of chemo. First, I'm getting my picc line put in at Seton at 8am (we have to be there 2 hours early, coming from San Marcos, so we will be getting up at 4am to head to the hospital). Right after the picc surgery, I will go straight to my oncologist to meet with my Dr and then do labs to see where my levels are to figure out what strengths my chemo drugs will be (they will adjust the levels literally daily depending on what I need). I will then start my first chemo treatment at 9am. I was told the first one always takes the longest because they slowly drip the meds in you to see how you react etc. and typically Monday's are when I get the most combination wise of drugs. So after picc surgery, my oncologist meeting, labs, and then up to 6 or so hours of chemo, it is going to be one long day!
Thanks to the many, many amazing people, my chemo bag is officially packed and ready. Here is what it looks like and it's contents that will hopefully keep me occupied and feeling ok for hours on end!
Thanks to the many, many amazing people, my chemo bag is officially packed and ready. Here is what it looks like and it's contents that will hopefully keep me occupied and feeling ok for hours on end!
Current contents of my chemo bag...I obviously have no idea what I need or will want until I have done a full week. I may be starving, bored, cold....or I may be nauseous, not hungry, and hot! It will literally just depend what drugs I'm getting that day and how long my treatment lasts. For now though, here's what I'm starting with:
~softest blanket ever
~magazines and a book
~Chromebook : )
~coloring and game books with markers
~nausea drops
~planner
~comfy socks
~neck pillow
~snacks
~lemon drops
~yeti
~scarf
~phone charger
~eye cover and earplugs if I actually think I may get to sleep
~headphones
~chapstick
~pig...guess I should think of a name tomorrow : )
~not pictured- small cooler filled with drinks since you are supposed to try to drink as much as possible during chemo treatments
~softest blanket ever
~magazines and a book
~Chromebook : )
~coloring and game books with markers
~nausea drops
~planner
~comfy socks
~neck pillow
~snacks
~lemon drops
~yeti
~scarf
~phone charger
~eye cover and earplugs if I actually think I may get to sleep
~headphones
~chapstick
~pig...guess I should think of a name tomorrow : )
~not pictured- small cooler filled with drinks since you are supposed to try to drink as much as possible during chemo treatments
Sometimes ripping the bandaid straight off is the easiest and less painful way to go in hard situations. However, In all the chemo stories and cancer journeys I have read, they all say that going from long hair straight to GI Jane style can have a pretty big impact on you mentally and emotionally so everyone recommends just chopping your hair short in the couple weeks leading up to baldness. So, today we went and chopped my long hair...goodbye Pocahontas status hair. I've always had long hair so going short isn't really something I wanted, but will make getting ready for appointments much easier and feel less dramatic when I wake up and start to see hair on my pillow that's short vs a foot long! I am told I will lose my hair 2-3 weeks after starting chemo Monday. I will then get it completely shaved.....this may or may not be done at the hat party just depending on timing....TBD Then your hair doesn't start growing back till about 6 weeks after you are done with chemo which will be Febuaryish for me...so I'm pretty much not going to have hair for well over a year.
Things I'm looking forward to:
~NOT HAVING TO SHAVE...ANYTHING (guys, this is indescribably the "perk" of chemo...don't be too jealous)
~no having to get my eyebrows waxed or pluck them
~not buying shampoo/conditioner/razors/hair ties/brushes etc.
~it being totally socially appropriate (at least in my head....which lets face it, that's the only thing that matters) to show up to chemo in a comfy onesie pajama outfit since getting cold is inevitable and who can really be depressed if you're in a onesie pajama?!
~Netflix binging my life away (ok, maybe I shouldn't say my life away in my particular situation...but to my little fluid filled hearts content!)
~watching Ellen everyday!!! (I mean, I should totally be on her show with all this craziness.....totally putting that on my goal and bucket list!)
~after chemo starts: my face and neck swelling going down, being able to breath again, not being as tired, not cough 24-7, hot flashes, night sweats only nightmares of made of (unfortunately, I was told this will be one of the last things to go away....maybe even months after chemo is done...bummer)
~exchanging my teaching/3-4 additional job stress for health and financial stress....but not working for the first time in my life will definitely be an adjustment even if not by choice
~Being home with Brodie everyday....who needs a guy when your best friend and fur child doesn't leave your side?! : )
Things I'm looking forward to:
~NOT HAVING TO SHAVE...ANYTHING (guys, this is indescribably the "perk" of chemo...don't be too jealous)
~no having to get my eyebrows waxed or pluck them
~not buying shampoo/conditioner/razors/hair ties/brushes etc.
~it being totally socially appropriate (at least in my head....which lets face it, that's the only thing that matters) to show up to chemo in a comfy onesie pajama outfit since getting cold is inevitable and who can really be depressed if you're in a onesie pajama?!
~Netflix binging my life away (ok, maybe I shouldn't say my life away in my particular situation...but to my little fluid filled hearts content!)
~watching Ellen everyday!!! (I mean, I should totally be on her show with all this craziness.....totally putting that on my goal and bucket list!)
~after chemo starts: my face and neck swelling going down, being able to breath again, not being as tired, not cough 24-7, hot flashes, night sweats only nightmares of made of (unfortunately, I was told this will be one of the last things to go away....maybe even months after chemo is done...bummer)
~exchanging my teaching/3-4 additional job stress for health and financial stress....but not working for the first time in my life will definitely be an adjustment even if not by choice
~Being home with Brodie everyday....who needs a guy when your best friend and fur child doesn't leave your side?! : )
THANKS TO MY SISTER FOR TAKING ME TO GET MY HAIR CHOPPED! WE CUT OVER A FOOT OFF : / BUT IT'LL ONLY LAST FOR 2-3 WEEKS ANYWAY SO IT DOESN'T MATTER...
Today is officially PORT day! I get my port put in at 10:30am, however since it's a surgical procedure and I'll be going under again I have to get there an hour and a half early....yippie. This will be my 5th time going under since February...surely I should get some sort of award for that?! The procedure should take around 45 minutes and then I'll be in the recovery room "coming to" for about an hour or more so they can monitor me etc. Depending on how I feel we will then go get my last pedicure for my P day later in the afternoon!
Yesterday, I also had my full body scan to check for any other masses that may have spread. I should get those results today or Monday even though they don't really matter because one huge mass or 10 I'll still be getting the same aggressive chemo for this particular cancer. They also put me back on steroids earlier than planned because my health was going backwards again and I was looking and feeling pretty rough. One of the many symptoms for my cancer is a swollen face and neck....I currently look and feel like Quasimodo...it's quite lovely and oh so comfortable! So hopefully these 10 steroid pills a day will make me feel a little bit better!
I also had my info session with my PA yesterday going over...well pretty much everything. I will sum up what I learned in one sentence: I WILL BASICALLY BE LOOKING AND FEELING LIKE DEATH FOR THE NEXT 5 MONTHS. Should be quite fun! I guess I should get over my "I'm only posting pictures I look good in" motto because that is apparently going straight out the window.
Yesterday, I also had my full body scan to check for any other masses that may have spread. I should get those results today or Monday even though they don't really matter because one huge mass or 10 I'll still be getting the same aggressive chemo for this particular cancer. They also put me back on steroids earlier than planned because my health was going backwards again and I was looking and feeling pretty rough. One of the many symptoms for my cancer is a swollen face and neck....I currently look and feel like Quasimodo...it's quite lovely and oh so comfortable! So hopefully these 10 steroid pills a day will make me feel a little bit better!
I also had my info session with my PA yesterday going over...well pretty much everything. I will sum up what I learned in one sentence: I WILL BASICALLY BE LOOKING AND FEELING LIKE DEATH FOR THE NEXT 5 MONTHS. Should be quite fun! I guess I should get over my "I'm only posting pictures I look good in" motto because that is apparently going straight out the window.
At least the nice CT scan guy color coordinated me this time : p
Fingers crossed today will be my last IV when getting my port in today!
Fingers crossed today will be my last IV when getting my port in today!
Port Update
So things didn't go quite as planned today. Got all ready for my port surgery, they hooked me up to iv's, put me under, and bought me back to the surgery room. My oxygen levels were extremely low even with the oxygen mask on high so the dr called it because it was too high risk at that point. Even though this sets my port back, it was the right call....I surely didn't envision myself dying on the medical table getting my port in before I even started chemo! So now the plan is to get a picc line put in early Monday morning at Seton right before I start my chemo at 8. So between getting that in at the hospital, several appointments with the dr and labs, on top of starting chemo which lasts 4-6 hours the first day it's going to be quite the long Monday! As for the picc line, after doing a week or so of chemo they will then be able to put my port in since HOPEFULLY the chemo will start to shrink the mass and my oxygen levels will get better since I'll be able to breath a little more. So even though not what I had planned, I will still be on track schedule wise to start Monday. On the plus side, I got to get my last pedicure today....so at least one of of my P's for P day worked out! (On a funny note, I also make fun of Diana's "gothic"/dark polish she always gets...I've read that the darker the polish during chemo the better....so I'm turning into Diana for the next several months apparently...I know she'll love that lol)
You know, as a teacher you both cringe and get excited when you start seeing school supplies put out. Even though I don't have the money now because of medical bills and being jobless to endure chemo, I would do anything to be able to roam the aisles and buy my Beachers things and new resources for my classroom like I do every other year. Today was the LT convocation, my favorite school event of the year, and yet I didn't get to go since I am no longer employed whomp whomp. I had to attempt to stay off my phone so I wouldn't see all the social media updates of my BCE fam and teacher friends there. A tad depressing, but that's how the cookie crumbles! Hopefully, I'll be feeling ok in the next couple weeks to go up to school and see everyone and live vicariously through them getting ready for the big day!
Today marks exactly a week since I was diagnosed with cancer. When talking to doctors and researching these are the words you'd rather not hear:
~Aggressive
~High Risk
~Rapid Spreading
`Vomit potential: moderately high
Obviously amongst many other lovely descriptors, but those are my fav : /
Yes, my cancer is one of the most rapid spreading there is. I will be going thru EPOCH chemo which is basically the strongest chemo there is. So it should be an interesting 5 months!
Today I was supposed to get my port put in but the surgeons office apparently made a mistake and called us when we were already on our way for the appointment. So, around we turned back home to wait on the call to see when it is rescheduled for. I also have a dentist appointment today because chemo apparently wreaks havoc on your teeth and you're unable to get them cleaned etc. while undergoing treatments. It also destroys your nails so getting my last pedicure this weekend before all the fun begins!
Tomorrow I have a scheduled info session with my oncologists PA to go over everything that will be coming, what to expect, what to do etc. so I am sure that will be interesting! Then, I have an appointment to get my last CT scan before starting chemo. This will be a full body CT to check if I have any other masses in my body that have spread. Fingers crossed!
Thank you to all that have texted, messaged, donated, sent something, or just followed this journey of mine along with me!
Today marks exactly a week since I was diagnosed with cancer. When talking to doctors and researching these are the words you'd rather not hear:
~Aggressive
~High Risk
~Rapid Spreading
`Vomit potential: moderately high
Obviously amongst many other lovely descriptors, but those are my fav : /
Yes, my cancer is one of the most rapid spreading there is. I will be going thru EPOCH chemo which is basically the strongest chemo there is. So it should be an interesting 5 months!
Today I was supposed to get my port put in but the surgeons office apparently made a mistake and called us when we were already on our way for the appointment. So, around we turned back home to wait on the call to see when it is rescheduled for. I also have a dentist appointment today because chemo apparently wreaks havoc on your teeth and you're unable to get them cleaned etc. while undergoing treatments. It also destroys your nails so getting my last pedicure this weekend before all the fun begins!
Tomorrow I have a scheduled info session with my oncologists PA to go over everything that will be coming, what to expect, what to do etc. so I am sure that will be interesting! Then, I have an appointment to get my last CT scan before starting chemo. This will be a full body CT to check if I have any other masses in my body that have spread. Fingers crossed!
Thank you to all that have texted, messaged, donated, sent something, or just followed this journey of mine along with me!
Since I was discharged from the hospital saturday, after my 7 day extended care luxury package, I couldn't wait to get home. Only home has changed now. For health and financial reasons, I have moved in with my parents in San Marcos for the duration of my chemo which will go through the end of December. Yes, I SHOULD be done with chemo literally a couple days before Christmas!
I wanted to give a little back story about my current situation so it makes a little more sense. This summer I decided moving to our condo in Port Aransas would financially help not only myself, but my parents as well. Although I love being at BCE more than words an explain, I literally could no longer afford the high Austin housing costs on a low teacher salary, on top of my loans now being out of deferment since I graduated with my Masters in May. I was stuck between a rock in a hard place to say the least. So I applied and interviewed in Corpus and was offered a job. After the offer I let LT know of my resignation so I wouldn't hold anyone up filling the position so late in the summer. I turned in my resignation on a Friday, ended up in the ER and hospital the next day, they filled my kinder position Tuesday (for obvious reasons), and I found out I had cancer Wednesday. I was scheduled to sign my Corpus contract on Wedneday and that obviously didn't happen. Because of this, I am now jobless (even though I won't be able to really work on this chemo journey) but now I am also insurance-less making the situation a million times worse. In fact, if I were honest, I am more stressed about not working, making money, and not having insurance during this whole process than the chemo and cancer itself! If you know me, you know I am always working 3-4 jobs just o pay my bills, so this is going to be a tough one!
Now an update from my oncologist appointment today!
I am scheduled to get my port put in wednesday, have a full body CT scan Thursday to make sure I don't have an other masses, and then have "class" with my oncologists PA on what this whole experience is going to be like and what to expect etc. I also found out, my mass is actually the size of a grapefruit, not a tennis ball....I wouldst preferred the tennis ball at this point! However, at least I know when this is all over I will be able to breath with this lovely grapefruit out of my chest!
My first chemo is monday the 14th and was told it will take about 4-6 hours the first day. I will be undergoing EPOCH if you know anything about chemo. My official diagnosis is "Mediastinal Lymphoma" which is apparently one of the most rapid growing and takes one of the strongest chemo regimens to get rid of...my luck right?! : ) My oncologist has also made sure to tell me on a few occasions that if I hadn't gotten this "discovered" and taken care of...well let's just say in just a few shorts months I wouldn't be around...so glad I actually went to the ER and finally got answers after being misdiagnosed for months and just trying to deal with it! LESSON LEARNED!
Here is a link with a short blurb if you're interested in reading it!
www.macmillan.org.uk/information-and-support/lymphoma/lymphoma-non-hodgkin/understanding-cancer/types-of-non-hodgkin-lymphoma/mediastinal-large-b-cell-lymphoma.html
I wanted to give a little back story about my current situation so it makes a little more sense. This summer I decided moving to our condo in Port Aransas would financially help not only myself, but my parents as well. Although I love being at BCE more than words an explain, I literally could no longer afford the high Austin housing costs on a low teacher salary, on top of my loans now being out of deferment since I graduated with my Masters in May. I was stuck between a rock in a hard place to say the least. So I applied and interviewed in Corpus and was offered a job. After the offer I let LT know of my resignation so I wouldn't hold anyone up filling the position so late in the summer. I turned in my resignation on a Friday, ended up in the ER and hospital the next day, they filled my kinder position Tuesday (for obvious reasons), and I found out I had cancer Wednesday. I was scheduled to sign my Corpus contract on Wedneday and that obviously didn't happen. Because of this, I am now jobless (even though I won't be able to really work on this chemo journey) but now I am also insurance-less making the situation a million times worse. In fact, if I were honest, I am more stressed about not working, making money, and not having insurance during this whole process than the chemo and cancer itself! If you know me, you know I am always working 3-4 jobs just o pay my bills, so this is going to be a tough one!
Now an update from my oncologist appointment today!
I am scheduled to get my port put in wednesday, have a full body CT scan Thursday to make sure I don't have an other masses, and then have "class" with my oncologists PA on what this whole experience is going to be like and what to expect etc. I also found out, my mass is actually the size of a grapefruit, not a tennis ball....I wouldst preferred the tennis ball at this point! However, at least I know when this is all over I will be able to breath with this lovely grapefruit out of my chest!
My first chemo is monday the 14th and was told it will take about 4-6 hours the first day. I will be undergoing EPOCH if you know anything about chemo. My official diagnosis is "Mediastinal Lymphoma" which is apparently one of the most rapid growing and takes one of the strongest chemo regimens to get rid of...my luck right?! : ) My oncologist has also made sure to tell me on a few occasions that if I hadn't gotten this "discovered" and taken care of...well let's just say in just a few shorts months I wouldn't be around...so glad I actually went to the ER and finally got answers after being misdiagnosed for months and just trying to deal with it! LESSON LEARNED!
Here is a link with a short blurb if you're interested in reading it!
www.macmillan.org.uk/information-and-support/lymphoma/lymphoma-non-hodgkin/understanding-cancer/types-of-non-hodgkin-lymphoma/mediastinal-large-b-cell-lymphoma.html
We may be having a "hat party" in the next few weeks after my hair is officially MIA (in 2-3 weeks...yikes) if you are interested in coming! I will share more details when they become available!
In case you haven't followed my Facebook fun, below are my posts from my duration in the hospital, finding out I had cancer, and the following steps I had to take.
July 29th:
You know it's gonna be bad when the ER Dr brings in the tissues and tells you they're transporting you by ambulance to the main hospital. Guess I'll get to check off staying overnight in a hospital off my bucket list!
Take away lesson: if you think something is wrong even after going to 2 different drs and them both not helping...more than likely it's not all in your head and you were misdiagnosed. Took getting so bad and having to come to the ER for them to find issues. Hopefully after more tests we'll get some answers of why I've been dying for weeks.... even if it's not what I want to hear. #WorstTimingEver
July 30th:
Hospital Update:
First, I was transferred from ER at Seton SW bc they found a mass in my chest and fluid around my heart.
When arriving to main, I did more tests and the cardiologist said I needed surgery in a few hours on my heart to drain the ample amount of fluid I have and then have a drain come out of my chest for a couple days. (Lovely, I know....this coming from someone who gets sick at the sight of blood or broken bones)
I believe Monday is when they will be going in and taking samples of my mass to see what it is. This mass, regardless of what it is, will need to removed in the following days. So it looks like my hospital stay is much lengthier than I initially thought.
No, I obviously will not be able to move this week.
No, I don't know how this will affect my new job since I was signing Wednesday and starting Friday.
Yes, I could have had these two issues for literally years and and have been misdiagnosed by multiple drs. A simple chest X-ray was all they needed to do.
Hospital Now I Knows:
- first and foremost, wear the right underwear
-don't plan on sleeping
-don't plan on eating
-when offered morphine, take it whether you are currently in pain or not, you will be soon
-you look just as horrible as you feel...suck it up
(Sorry I haven't gotten back to texts)
July 31st:
Hospital Update Day 3:
First, if I had the energy and physical ability, I would send each and every one of you a thank you for your sweet words! I'd say heartfelt but apparently that isn't working at the moment lol. Seriously though, I appreciate all the kind words and texts!
So update......first thing Sunday morning I was immediately sent to have surgery around my heart to get the fluid out. Apparently I had a lot...3 cups worth a lot (ya, visualize that for a minute! No wonder I've had issues!) Then the drain was left in my chest for the remaining loveliness to get out. Hopefully this will be taken out tomorrow. Also, the liquid was sent for testing to see what and why and what we need to do.
Next, this morning I was sent in for surgery to get a biopsy of the mass in my chest to also be sent off for testing to figure out what it is and how/if I can treat it etc since we can't remove it till we know what it is. I was told the mass is as big as a tennis ball 😳 So between these two pretty large masses in my chest I am kinda blown away I've made it this long....but answers many questions and obviously I've been misdiagnosed for years....literally.
I was thankfully moved to a "normal" room tonight and am no longer needed in the "immediate care" since I've had the fluid around my heart removed.
In conclusion, I still have no idea about the fluid around my heart or what the mass in my chest is and we are waiting ever so patiently for the results to come in so we can get a game plan. My breathing has gotten better after surgery, just very sore from everything. Looks like I'm on the extended stay spa package and will be here a few more days
August 3rd:
Hospital Update: Day 6
Gonna try to keep it short.
My results came back from my testing late yesterday. The mass in my chest is cancer.
They also took me back for a 3rd CT scan bc they are worried I also have a blood clot in my lung and/or something else we are trying to figure out since I'm still having severe breathing issues and they don't know why.
Just met with my oncologist and I'll be starting chemo asap, 5 days a week for 18 weeks.
I will no longer to be able to move to the beach or teach/work in general during the duration of my treatments since my chemo is apparently a pretty tough one.
Hoping to be released this wknd if not before.
July 29th:
You know it's gonna be bad when the ER Dr brings in the tissues and tells you they're transporting you by ambulance to the main hospital. Guess I'll get to check off staying overnight in a hospital off my bucket list!
Take away lesson: if you think something is wrong even after going to 2 different drs and them both not helping...more than likely it's not all in your head and you were misdiagnosed. Took getting so bad and having to come to the ER for them to find issues. Hopefully after more tests we'll get some answers of why I've been dying for weeks.... even if it's not what I want to hear. #WorstTimingEver
July 30th:
Hospital Update:
First, I was transferred from ER at Seton SW bc they found a mass in my chest and fluid around my heart.
When arriving to main, I did more tests and the cardiologist said I needed surgery in a few hours on my heart to drain the ample amount of fluid I have and then have a drain come out of my chest for a couple days. (Lovely, I know....this coming from someone who gets sick at the sight of blood or broken bones)
I believe Monday is when they will be going in and taking samples of my mass to see what it is. This mass, regardless of what it is, will need to removed in the following days. So it looks like my hospital stay is much lengthier than I initially thought.
No, I obviously will not be able to move this week.
No, I don't know how this will affect my new job since I was signing Wednesday and starting Friday.
Yes, I could have had these two issues for literally years and and have been misdiagnosed by multiple drs. A simple chest X-ray was all they needed to do.
Hospital Now I Knows:
- first and foremost, wear the right underwear
-don't plan on sleeping
-don't plan on eating
-when offered morphine, take it whether you are currently in pain or not, you will be soon
-you look just as horrible as you feel...suck it up
(Sorry I haven't gotten back to texts)
July 31st:
Hospital Update Day 3:
First, if I had the energy and physical ability, I would send each and every one of you a thank you for your sweet words! I'd say heartfelt but apparently that isn't working at the moment lol. Seriously though, I appreciate all the kind words and texts!
So update......first thing Sunday morning I was immediately sent to have surgery around my heart to get the fluid out. Apparently I had a lot...3 cups worth a lot (ya, visualize that for a minute! No wonder I've had issues!) Then the drain was left in my chest for the remaining loveliness to get out. Hopefully this will be taken out tomorrow. Also, the liquid was sent for testing to see what and why and what we need to do.
Next, this morning I was sent in for surgery to get a biopsy of the mass in my chest to also be sent off for testing to figure out what it is and how/if I can treat it etc since we can't remove it till we know what it is. I was told the mass is as big as a tennis ball 😳 So between these two pretty large masses in my chest I am kinda blown away I've made it this long....but answers many questions and obviously I've been misdiagnosed for years....literally.
I was thankfully moved to a "normal" room tonight and am no longer needed in the "immediate care" since I've had the fluid around my heart removed.
In conclusion, I still have no idea about the fluid around my heart or what the mass in my chest is and we are waiting ever so patiently for the results to come in so we can get a game plan. My breathing has gotten better after surgery, just very sore from everything. Looks like I'm on the extended stay spa package and will be here a few more days
August 3rd:
Hospital Update: Day 6
Gonna try to keep it short.
My results came back from my testing late yesterday. The mass in my chest is cancer.
They also took me back for a 3rd CT scan bc they are worried I also have a blood clot in my lung and/or something else we are trying to figure out since I'm still having severe breathing issues and they don't know why.
Just met with my oncologist and I'll be starting chemo asap, 5 days a week for 18 weeks.
I will no longer to be able to move to the beach or teach/work in general during the duration of my treatments since my chemo is apparently a pretty tough one.
Hoping to be released this wknd if not before.
