Consolidation #2 day 1

Saturday 19th,2019

First and for most I would like to update on my most recent weekend. Everything is still different on a daily basis, always taking it day by day or one step at a time. I have puked twice in the past 2 maybe 3 weeks which a new record for me in a while. Unfortunately Friday was one of the days I was sick to my stomach but I was so excited for Saturday to see my brother and his family but I barely slept the night before, my stomach felt like poop. I tried moving around but all that did was give me a pounding headache(not anywhere. ear close to the horrid migraines from the Atra. I still have that cough from when I was In the hospital 2.5 months ago but I also woke up with a stuffy nose which thankfully faded a bit during the day and then my cousin tells me his sick so I start overthinking it since I also had all around big ache but it doesn’t feel like a cold, still I didn’t want to risk my niece and nephew getting sick so I rain checked for later time. I ended up just not having the want to do anything other than stay in bed to avoid any confrontation.

January 20, 2019

I woke up Saturday feeling way better, it ended up being a very productive day and wonderful day. I woke up feeling better than Saturday, finally slept through the night and was pretty dissapointed that there was only rain and no snow, not even an inch as predicted. Mom mentioned she was thinking of going to church, I said to mom I was tagging along, this will be the only chance since I felt crummy most of last week and this week while I’ve been off chemo and since I’ve been on the chemo break the white blood cells have been recovering according to Thursdays lab work and they will drop once I’m back on #arsenictrioxide and oral #chemo so I decided to take advantage of today. I was pretty dang emotional during mass and was happy to see family there. I had been thinking of my godmother for a while now but I haven’t had the chance to swing by, in the middle of mass I asked mom if we could visit since she lives so close. We had so much to catch up on so we sat and talked for a little over an hour.

We came home to have a late lunch and I really wanted to try to walk a while and the mall was closing in an hour, I thought I could catch my friends if they were working and we ended up having dinner and drinks,we had a fantastic time. Came home right before the game between the Patriots and the chiefs went in to overtime and won! All in all yesterday turned out great, I was able to go for a good walk, surprise and spend time with sissy since I won’t be able to celebrate with her on her birthday, I made new friends, I saw a childhood friend and got attacked with hugs. Once I got to bed I was achy all over, I felt exhausted but I can already tell I’ll have a hard time sleeping but I’m hoping for the best. I figured Monday was bound to be exhausting day.

January 21,2019

Monday consolidation:2 day:1

This morning I had 3 hours of sleep becore 5am meds, I stayed up a little and dozed off for a cat nap and woke up with a migraine and my ears sounding like I airplane propellers turn on. Nothing was helping but I wasnt going to let that ruin my day. Mom made carrot juice since breakfast and pt exercises didnt happen, I was super drained and it was freezing so that was a no go. Finally drug myself into the shower before having a bowl of Pumpkin #cheerios and heading to see @irenesbattle (on IG) before I had the ekg and start the arsenic treatment. It was freezing out and I was super bundled up.

I have been really wanting to see her for a while and I knew today will be the last chance I have until my next break off chemo. I love being able to see a fellow friend/warrior that completely understands where we are each coming from. I’ve truly missed her so much, if you have some time please check out her page and if you can donate to her #GoFundMe, every little bit helps her and her family.

I arrived for chemo, I ended up taking an hour nap because the migraines were pretty dang bad and I was given ativan.

Before my port was being accessed I had asked if the ativan was ordered for the headaches and nausea and then I had the nurse questioning me on am I going to eat what I bought and how do I plan on eating if I’m nauseous. And once I started to explain that it is 3pm and I only had a bowl of cereal and that I’m willing to take my chances since I took my stomach meds to help digest and the main reason i wanted the ativan was for the migraines from the oral chemo which causes brain swelling, she then lost interest in what I was saying and was pretty much over it. It was freezing and she didn’t even ask if I wanted blankets when usually everyone knows I take two blankets all the way open which she refused to do after I had asked when I was going to start chemo and if I could please have two blankets. She gave me a tone and said that the meds are being prepped and she will bring them when they are ready which is odd since I was scheduled for 2 and by the time I received chemo it was 3:30 and usually the chemo is prepped right before or less than 15 minutes of being accessed. There are a few nurses I’m I fan of in the oncology treatment center, thankfully I know I don’t have her every time, unfortunately I’m with her tomorrow too. Let’s give Tuesday a chance to arrive before I start visualizing how it’s all going to play out. I just really dont appreciate people questioning what I eat since I eat what I can handle and unfortunately when i’m on the chemo even safe foods make me sick. So it’s always a coin toss or a daily vomiting after eating. Let’s hope for a good month of arsenic treatment.

You can see in the before and after #chemo pictures that it drained me more than I can remember and by the time I got down there the migraine was worse. When I got home I felt worse than the tin man, I could barely get up from the couch, my body felt sore like I had done the lot exercise but it also felt bruised like. This chemo truly drains the heck out of patients.

After an hour of being home I was still shaking from how cold I was and how more out of it and you can tell how crummy I felt just by looking at my eyes.

The great news:
I was told my white blood cells were 9.6 which means on my down time from chemo my cells are recovering well. This cycle will once again drop the numbers back down but it seems like everything is going according to plan. In 6 weeks i’ll be having a bone marrow biopsy to check on the process.

Half of my day was great and the rest drained me to the point that I didn’t even get to do my pt exercises but tomorrow is another day and I’m not letting anything stop me now. I will never stop fighting for my health.

Thank you for take a moment out of your day to update yourself on mine. Please remember we are all warriors in our own ways and it ok if you feel you need to talk to someone about what is clouding your mind. This morning I had 3 hours of sleep for 5am meds, I stayed up a little and dozed off for a cat nap and woke up with a migraine and my ears sounding like I airplane propellers turn on. Nothing was helping but I wasnt going to let that ruin my day. Mom made carrot juice since breakfast and pt exercises didnt happen, I was super drained and it was freezing so that was a no go. Finally drug myself into the shower before heading to see @irenesbattle before I had the ekg and treatment start.

I have been really wanting to see her for a while and I knew today will be the last chance I have until my next break off chemo. I love being able to see a fellow friend/warrior that completely understands where we are each coming from. I’ve truly missed her so much, if you have some time please check out her page and if you can donate to her #GoFundMe, every little bit helps her and her family.

I arrived for chemo, I ended up taking an hour nap. You can see in picture 6 the before and after #chemo, it drained me more than I remember and by the time I got down there the migraine was worse. When I got home I felt worse than the tin man, I could barely get up from the couch. As picture 7 shows, even after an hour I was still shaking from how cold I still was and how more out of it and crummy I felt just by looking at my eyes.

The great news:
I was told my white blood cells were 9.6 which means on my down time from chemo my cells are recovering well. This cycle will once again drop the numbers back down but it seems like everything is going according to plan. In 6 weeks i’ll be having a bone marrow biopsy to check on the process.

Half of my day was great and the rest drained me to the point that I didn’t even get to do my pt exercises but tomorrow is another day and I’m not letting anything stop me now. I will never stop fighting for my health.

Thank you for take a moment out of your day to update yourself on mine. Please remember we are all warriors in our own ways and it ok if you feel you need to talk to someone about what is clouding your mind. This morning I had 3 hours of sleep for 5am meds, I stayed up a little and dozed off for a cat nap and woke up with a migraine and my ears sounding like I airplane propellers turn on. Nothing was helping but I wasnt going to let that ruin my day. Mom made carrot juice since breakfast and pt exercises didnt happen, I was super drained and it was freezing so that was a no go. Finally drug myself into the shower before heading to see @irenesbattle before I had the ekg and treatment start.

I have been really wanting to see her for a while and I knew today will be the last chance I have until my next break off chemo. I love being able to see a fellow friend/warrior that completely understands where we are each coming from. I’ve truly missed her so much, if you have some time please check out her page and if you can donate to her #GoFundMe, every little bit helps her and her family.

I arrived for chemo, I ended up taking an hour nap. You can see in picture 6 the before and after #chemo, it drained me more than I remember and by the time I got down there the migraine was worse. When I got home I felt worse than the tin man, I could barely get up from the couch. As picture 7 shows, even after an hour I was still shaking from how cold I still was and how more out of it and crummy I felt just by looking at my eyes.

The great news:
I was told my white blood cells were 9.6 which means on my down time from chemo my cells are recovering well. This cycle will once again drop the numbers back down but it seems like everything is going according to plan. In 6 weeks i’ll be having a bone marrow biopsy to check on the process.

Half of my day was great and the rest drained me to the point that I didn’t even get to do my pt exercises but tomorrow is another day and I’m not letting anything stop me now. I will never stop fighting for my health.

Breakfast was pumpkin spice cheerios, my lunch during chemo was a couple of wings and for bedtime mom made me a tea in Hope’s that it would help

Oh and when I finally had enough e ergy to lift myself off the couch, this was the obstacle I conquered, I was more exhausted than usual (with having a pulmonary embolism in mind) it was still more challenging, I felt like a climbed a mountain, I truly forgot how weak I become even after only day 1 of treatment.

TMI:

My body is acting funny, I had intestines cramp up which I havent had in a while. I need to post more for me to look back especially with cramps like spasms before ended up at the bathroom having a bowl movement. Typing things out I can read through at the end of the week to follow up with how I’ve felt all week.

Thank you for take a moment out of your day to update yourself on mine. Please remember we are all warriors in our own ways and it ok if you feel you need to talk to someone about what is clouding our mind.

Remember Warriors, Stay Strong, Be Brave, Stay Positive, Positivity is Key, Keep Fighting, Be You, be your own advocate, you are resilient and if you need someone to listen, I’m here. #Invisibleillness #spoonie #mindbodysoul #positivity I am so thankful for all the #Love and #Support and beyond #Grateful the #Leukemia was caught in the nick of time and I’m thankful for every day I wake up even if I don’t always feel like it when i wake up.
Remember Warriors, Stay Strong, Be Brave, Stay Positive, Positivity is Key, Keep Fighting, Be You, be your own advocate, you are resilient and if you need someone to listen, I’m here.

Don’t forget to smile.

Advertisements

Full day 2

Waking up at 2:30 is never fun, unfortunately between 2 and 4 is when it was a routine of bathroom breaks and ativan or phenergan when I was at the hospital. The headaches would be the worst and the nausea was unbearable in the wee bit morning morning and hours but often I never vomited or feel stomach it acid, it was the perk of having a hospital bed that kept the knees alleviated and the the back up some. Before going to the hospital the acid reflux was under control and it had been for a long while but my second night sleeping at home after not being able to keep food down for the first time in a little over 3 weeks, it wasn’t the case. It wasn’t a tremendous amount, last time I ate was roughly 5:30 last night and the meds as usual, i don’t think ive ever woken up vomiting food and bile in the middle of the night just bile. I couldn’t go back to sleep so i stayed up til 4:30, I was cold from the draft that comes from the old windows and was going to put on a sweater cardigan I had near me but decided not to and doozed back off until 7ish, upon waking i felt cold draft and the moment I opened my eyes, like it happens at in the middle of the night I become so hot I feel overheated. I go and do the bathroom things and come back to only wake up with this cough I’ve had since the hospital and start to throw up sour gross bile with bits of lunch from yesterday. This next year seems never ending and the next 8 or so months will be a true challenge with not being able to take the reglan for motility and hoping the dexilant starts to take effect because I can’t handle this bile, thankfully I’ll see the old GI at the clinic this week.

I finally sat down to look at the discharge papers, the medical care providers are incomplete and it has doctors that I had never consulted or seen, internists that was a cheerleader than a doctor, the internist that found the PE and DVT Blood clots, radiologists that ordered three echocardiograms and two pain managements specialist( one of them mentioned to me that their names would be on the discharged papers). I signed up for the hospital records online so I can have my copies, its frustrating and confusing.

After the midnight vomit with bile and morning bile continued, this was lunch, half a fresh baked frech roll and a strawberry Gel with peaches. The gel felt like it wanted to come up, thankfully it didn’t. My legs are weak, walking is ok other than the laps are so short and boring in a narrow walk way from the room to the window, my thighs feel unreal walking up the stairs. Lets get real, even going the the bathroom I can barely rip toilet paper with the right arm because the port on my chest, I have to hold on the tub to reach and rip. You may, well Erika why not just use your left, I’m a righty and a creature of habit and even when I have I put the right arm flat on the sink. The mix between chlorhexidine wipes and the chemo have made my skin so has gone haywire, skin is flaking, cracked and looks scaly, my hands are peeling, lips arent cracked and as dry as they were but feel like snake skin that peel daily, I scratch my scalp and skin gets lodged under my nails(never had I had a dried scalp), my face has filled with acne and scabs. I will probably have to lotion up the rest of my life with aquaphor, eucerin and baby lotion just to look smooth and look like tight leather. Most of you probably will say skin is just skin, routine is normal to have but I put lotion on every nook and cranny and probably wont have the energy. The port incisions are still healing and since getting home I have had to wear a bra or it feels like the stitches are ripping, if I move a certain way the incision hurts, I can’t lay on my sides, last night it felt more comfortable but getting up hurt. My tiny benign cyst on my pelvic kidney has been uncomfortable all day and the tingles of my hands & feet continue oh and my hair is shedding more than I have seen before.

This doesn’t just effect me but my mom, we share a bed, when I wake up feeling miseable or throwing up through the next 8 or so months of chemo pills and arcenic iv. Last night was only night 2 and she’w had too take a day nap because she hasn’t gotten much sleep, I know I know, a mother will do anything for her child, she has been telling its not something i should worry about but she’s already been through this with my aunt Martha before she passed from breast cancer and it spreading she shouldn’t have to go through this again, she reassured me that she can sleep during the day and it will be fine. I can go without sleep, I can throw up all night, I could cry myself to sleep on my own but one thing I can’t see is my mom worrying about me, wondering if I’m going to be ok. The nurses in high school would tell me I worried more about my mom than myself when I would tell them my daily which at this point I don’t remember but I do remember trying to keep her from knowing i didn’t feel well until senior year when I ended up out of school more than half the year and somehow graduated high school on time to make her proud. What she wanted most was for me to go to college, I tried but my health wouldn’t allow me to and still I feel like I disappoint her because my health just doesnt allow me to keep moving forward even though I became a workaholic and got my work ethics from her but even went down hill when I went from working 60+ hours to barely being able to 24 tops before being laid off and got weaker as the months went by. I know its never to late to go back to school and now there’s online classes but my memory is even worse now than it’s ever been. I know she loves me but I know she worries about my future. Sorry this got real deep real quick but it’s something thats always on my mind and I want this to be something I can look back to to see myself a year from now when I was know I stayed strong through it all not just for myself but for her, this is a journey I thought I would battle cancer some day but not at 28. I even tried to see if I could see if i had the gene a bit ago but the doctor never got back to me for blood work, I should’ve done a 23 and me or something. I figured years ago that cancer runs on both sides of the family and on moms side it skips every generation and I would end up being me then my cousin being diagnosed with lupus 5 maybe 6 years ago and this past August I was getting frustrated with beinf weak I said I wouldn’t be surprised if I would have cancer by 34 not knowing that white cells were dying off and I had leukemia already. Let’s stop the babble and get back to paperwork. Wait I lied I’m Grateful I will not be on chemo for moms birthday and Thanksgiving. Mom is so cute, she has been seeing that facebook will donate $2 if she ask for donations for her birthday so we set it up for St.Judes children’s hospital.

Reading through the discharge papers this morning I read the above. When being told there are some old cells with pml-rara and that all 3 tests results showed that all the smalll cells had no leukemia blasts I was in the clear, that my numbers were coming up from a .33 to a 3.2 before leaving the hospital. I was given the impression that I am Leukemia free, upon reading the paperwork, I did not reach remission. I researched pml-rara and I guess I just didnt understand or just wanted to be in the clear. I know it takes a year or so to try to get in remission sometimes longer but it was pretty upsetting to tell mom this morning that I wasn’t in remission, she said it was ok and we still had the next year ofnour journey. I am so thankfully to have such a strong, amazing, caring mother that will be by my side through anything. I know there are many people in this world that may not have their mom anymore, may disagree or even not talking to each other. I have a dad that cares from a distance, amazing family and friends that are irreplaceable and will stand by my side and keep me strong through this battle and many more that may cross out paths.

For dinner today is breadbaked with cheese this morning ( should’ve probably eaten half but it was frozen to keep fresh) I’m trusting an egg on a dry pan even though I’ve had bad luck the past 3 weeks. It’s crazy how long it takes me to eat these days, super chewing every bite in hopes it stays down. And yes a piece of chocolate bar from Colombia for dessert.

I wish I could say that I have exceeded my expectations for today being day 2, I have walked very little, I have had no appetite, I haven’t drank enough water, I have spent the day to take the last 2 months in, I have vented to 2 amazing friends, watched my mom nap, attacked my cousin with a hug he could get out because if he elbow moved it would’ve hit my fresh and tender port, chatted with my aunt, walked up and down the stairs a couple of times in the narrows walkway of both floors and hung out in the living room. Bumped the back of my arms on everything, oh it hurts every time. And yes I know use I & and too much, I’m working on it just not in this post. Today is a wrap, it is 6pm, not much more is happening today, I’m just hoping mom and I get some rest tonight.

First Real Day Home

I woke up at 11:30, there’s a draft from the old windows, my hand hanging a bit off the bed was freezing cold but I was super hot. After that my thought was gosh dang it I took the mid day blood thinner twice, went for a bathroom break before freaking out. The last time the blood thinner was too high I ended up a nose bleed

I can’t seem to find the energy to want to finish blogs.. maybe tomorrow

Finally Home

It’s been a long day i will try to type it all up tomorrow. It was a shit show of a release day

Lets start off I truly felt the patient relations was really not listening to the concern in care I had during the stay of 2 months and 2 days. The nurses were almost all great minus a couple but it was fine, there were 2 in particular that I spoke to the nurse manager about because I felt if i had them again i would be tol upset. The first the nurse manager said would nevee be put on in my care, the second she seemed a little annoyed bur listened and said she would speak to her and then om the 7th i asked to speak to her and she said she had a couple of meetings but wouls try to swing by. She was not able to make it nor did she stop by to say tomorrow for sure or anything, i figured she was busy. This morning I spoke to the over night charge nurse about possibly getting my favorite nurse because i truly wanted a smooth transition out of the hospitsl, i knew i wouldn’t see her much, only for meds and if i needed anything else i would see the nurse assistant but it was explained to me that she would be in a different pod and it was not possible. I totally understood but i still had a mini panic attack as anxiety kicked in, I mentioned i didn’t get to speak to the nurse manager the day before and the charge nurse asked if

Day #2 of release, day 3 is the charm.

The past couple of days are a blur, they blend together, (I was naive to think I was going to have a team of advocates on my side thia time but leta lets start off with how my sday began before shit hit the fan.) the couple of things I remember from the past recent days are the doctors wanting to put me on topamax qnd one of the big side effects is Cognitive dwelling, tingles of the hands and feet which I still have after being a diamox and I’ve been off of diamox for over 2 weeks and it still lingers. I hear the topamax works great for some people, the doctor says that a lot of people get on in because of the massive weight loss and haha’d after which was a hit at my weight and then i hear first hand stories that friends have gained weight on it and some of the side effects they have had. I have said no to this drug which was recommended for the migraines I now have after being ln chemo for 50+ days. And though it might help for that I have also reached out to facebook groups I’m in for input on Topamax and many have said it helped for a while and then it didn’t. My body has a tolerance for meds that adjust to quickly so I have said no since there wasn’t a neurologist that could tall to me about it, just doctors that have never prescribed it any of his patients and tried to tell me he has friends on them and stumbled on his words and almost said and statistics show but caught himself and tried to recuperate, he thought I would look past it.

Another drug they tried to loop me in and I’ve again heard good and bad things which I refused to take even before I asked for friends, families and friend in the field about lexapro except yesterday or maybe it was the day before they tried to trick me by giving me the generic name which really irritated me since I said no to it from the beginning. The doctors also wanted me to see an inside psychiatrist 2 days before I’m leaving which seemed unreal since I won’t been seeing that person possibly ever again. After hearing maily horrible things and some good I declined the inpatient therapist and lexapro. I will continue to take the anxiety I foster on the road with me and when I decid the anxiety is taking over my life only then will I reach out and find myself a psychiatrist but for now will continue therapy and work on the anxiety I have had since I was probably 4. 28 yrs and all doctors have ever wanted to do is treat me for depression, no one until the past year has brought up anxiety.. so it I can control it most of my life, I’ll be ok until I feel I’m not. Seriously, being in the hospital for 2 months with out pf no where Acute Promyelocytic Leukemia would produce all sorts of anxiety when all you did was go to the hospital for hydration from not being able to keep down solids or liquids and unbearable stomach pain (when you’re used to having Gastroparesis).

It ended not being the day I was sent home, I asked for patient advocate and she didn’t want to hear my complaints and concers so when I get home I will be typing up a very long letter to rhe hospital administrators. The patient advocate brought in the charge nurse of the day and asked her is someone with gastroparesis would benefit from smaller meals and she said yea, she came here prepared for anything I had to say. I have tried small meals and they never work out and it doesn’t stop thw vomiting. I have been vomiting daily for over 3 weeks and last week and a half I said fuck it I wont eat anything but breakfast, I had a bagel with cream cheese which is not good for Gastroparesis but it was the only thing that stayed down and since I was only eating bagels for the day I also ordered hard boiled eggs (this i did the past 3 or so weeks for breakfast until I started to reject lunch and dinner, that when I stuck to only breakfast) until last Tuesday I started to reject the boiled eggs.

After rejecting the hard boiled eggs I thought if I’m going to reject eggs and have the bagel come up with it why not try scrambled eggs in the infamous BEC quesadilla and so shared with my mom, the first day I puked 4 hours later and not much, just some bacon. Day 2 of trying quesadilla the moment I stopped eating it was none stop puking for hours, the nurse advocated for me ro get ativan earlier since the vomited smelled like nothing I had ever puked before and it wasn’t stopping, it smelled and tastes racid, sour and acidic. It was a mix of everything but more liquid than anything along side loads of eggs.

Let’s get back to today, the social worker, the patient advocate, the charge nurse and doctor cornered me in the bed, ok they really didn’t surround the bed but I felt surrounded as if i tried to run I wouldn’t be able to. I was told this morning I could choose to leave today or tomorrow but if i stayed til tomorrow all the iv meds would be taken away for the night. Apparently the doctor spoke with psych and they recommended to keep me over night to make sure I don’t withdrawl from ativan. When i started to throw up my lunch for dinner the nurse asked why I don’t try something light like soup… the only soup they have is chicken noodle which is gross, vegetable which I probably shouldn’t have, tomato soup which i definitely and broth… if I’m going to be on a liquid diet at this point I would rather me home. The nurse said she would come back after I felt better from puking to give me thw afternoon meds, she offered me te Ativan pill and refused it, I asked why yesterday I was on 5 mg of the blood thinner pills and today 3, I asked what happens from now until Monday if my blood levels change and some one day I need 5mg and the other the 3mg. I know that I ended with 2 cherry sized blood clots in my nose when I was on a high dosage of blood thinners, the nurse raised her voice after I asked her to please answer my question when she kept changing the subject. I guess I’ll be going home injecting myself with a blood thinner twice a day and taking the maybe right maybe wrong blood thinners in pill form until I’m so called therapeutic and can bridge over to just pills. While we’re talking about blood thinners today was the first day I’ve had pretty tolerable headaaches until about 2 hours after taking the coumadin and now I have a full blown headache, fantastic now I’ll have migraines from the chemo pills and headaches from the blood thinners keeping my alive. Fml, I give up.

I always plan on updating and typing out the blog as my day goes by and it never works out that way, today i really thought it would. I’m sorry this is such s long post, its been a long couple of days with finding out uncle John had gone in to surgery ro finding out rhe next day he had pasaes away the night before, i may not have known him as well as my aunt, my little cousin, his daughter and the rest of the family since I saw a different side of him. Then dealimg with a lot of medical nonsense and non supportive doctors and todays nurse was crap.

Yesterday the doctor ordered an internal ultrasound and a pelvis which I was told Thursday that it would be scheduled just like the CT scan would. I was so fed up with the doctor that I became angry and the most anxious I had ever been, I literally exploded and yelled,2 hours later the intern came to tell mom and I that the ct scan would be done. Nothinf was done after that though he had mentioned last week the ultrasound. I was supposed to go home yesterday but that didn’t happen, the doctor came in and told me that he would be my doctor so i didn’t have a new doctor since i complained avout jumping from doctor to doctor withrhe same interns and that the doctors nor interns received much one on one to really get to know the patient, which was loads of bologna he just wanted to cross his t’s and dot hia i’s. Today I went for the ultrasound that should’ve done before discharge day #2, the doctor said I had the choice of leaving today or tomorrow. After the ultrasound was when I felt surrounded, after that ordeal and getting told everything was fine I asked the nurse to call the doctor again. Remembering back to when I had the gallbladder removed it took a very long time, alot of the same tests and no one thinking outside the box until I said enough was enough, I had a gut feeling something was wrong with the gallbladder though all the imaging came up with nothing, a hida scan which is used an imaging procedure used to diagnose problems of the liver, gallbladder and bile ducts. As I type this I start doing research tonight i find out that a Renal scan is a nuclear medicine exam in which a small amount of radioactive material is used to measure the function of the kidneys. Though I was told that we had exhausted all of the scans that could be done to check my kidneys out and after pressuring for answers to why it hurts to walk and sit where the “kidney” is located i kept being reassured that it wasn’t my kidney, that everything was fine when he finally got tired of the same question the doctor told me that there is a benign cyst on the kidney itself and that it shouldn’t be causing discomfort. Are you kidding, trying to make me feel crazy that the pain I felt didn’t exist. There we go ladies and gentlemen I am not yet gone mental, i have a reason for the pain.

Monday was the first time baby girl came to visit since being and beinf way busy on the weekend, seeing her made my day though the say was foggy as heck and rainy all day.

Monday night I went to bed early and couldn’t have anything to eat or drink because the port for chemo was being inplanted on Tuesday. They tried ro twilight me but nothing helped twlight me or knock me out, the area was numbed but I still felt things happening, at the very end the student realized a piece was missing and so they plopped it on top, it’s a small round circle that is supposed to be in between the skin and the needle, like a barrier. They say it’s fine since it was done before but when I asked no one responded, I felt so much discomfort and anxious because of the pain and that the dressing rolles up almost to the incision and the next day was even worse. I felt sore, getting up hurt so much, I even felt weak enough that i could barely walk, almost like it was my first time walking, my legs felt like they were giving up on me. Ms.P was my nurse and i voiced my concerns and she mentioned why everyone was so hesitant on changing the dressing on a new incision but she went ahead and did it because she has done plenty and that’s when ahe realized and i was informed that the little circle should be a barrier and not sitting on top and in excruciating pain i screamed as she put in a new one where it should be and dressed the port back up and told me to make sure it doesn’t get wet and not to shower for at least a week, to possibly baby wipe myself down or at least my upper half and if i had a removable shower head and could clean the bottoms half. Day 2 and I could barely walk, my legs felt out of place and felt physically not like myself eveey movement hurt ,by Wednesday night I figured out that holding up the twins would give enough support to give some relief for the port and to hold my boob in the middle of the night on my way to the bathroom, just to make my life more or a joke but you’ve gotta do what you’ve got to do for easier access than living with the PICC for another 8 months to a year and not being able to shower freely because the picc cannot get wet where the porr can once it’s healed. Here are pictures of day 1 and day 3 of me and the port. You can tell were the disk was laid on top and then fixed on day 2 and yes I use the unicorns belly as a neck pillow to help the stiff neck I’ve had from the hospitals flat pillows and now with the swelling of my neck vein from this port, it helps keep everything in place. And if I didn’t mention it before I i no longer have a team just a doctor that doesn’t sound like he knows what he’s talking about

Oh yeah, remember me telling you or maybe it skipped my noodle 2 out of the 3 tests showed no live leukemia cells in the 2 tests from last weeks biopsy. The third teat finally came in amnd the only thing that showed up was this thing called PML-Rara which was explaines to me as some old white white cells that had/have leukemia hadn’t completely died off were still around but nothing to be concerned since they did have the explosive marks that leukemia has. But for technical purposes.
Promyelocytic leukemia/retinoic acid receptor alpha or PML-RARA refers to an abnormal fusion gene sequence. It is a specific rearrangement of genetic material from two separate chromosomes (chromosomal translocation) and is associated with a specific type of leukemia.

I was also given a date that is still not set in stone of when I’ll be starting chemo back up again to get me to remission ans so our best to keep this Leukemia away, hopefully for good, oh the wishful thinking for the holiday begins.

This 28 year old battling to keep acute promyelocytic leukemia away, has gastroparesis, endometriosis, fibromyalgia, pinched sciaticas , malrotated disk with degenerative tissue and spondylolisthesis is beyond grateful to be alive being able to living life day by day with so much love and support. I want to thank you for taking the time to read my daily blog and joining the rollercoaster that I call life.

Hey guys,

Let start off with I slept like a baby and the nurse last night drew blood while I was sleeping at one and five in the morning. I started typing this up thinking I may have a fantastic day even if I wasn’t the biggest fan of the nurse that was assigned to me, that the student/intern that listens to me every day didn’t stop by. Dr.S stopped by and mentioned getting the port for the continuous chemo that lies ahead, she mentioned that every time I go in which is Monday through Friday that the site will get numbed with a needle and poked so the chemo can flow. So I asked how am I supposed to take a shower or bath and she said they will put a dressing on it. *mind blown* no seriously what the hell is she thinking, does she not know how sensitive my skin has become, that every time I pull off a dressing or even a sticker from the heart monitors the top layer of my skin peels and scabs? Oh she has no idea and at the time I really wasn’t thinking about but it will be brought to her attention in the morning. Then after came one of the interns(she might’ve came before of after him or with him, my days kinda blend together)the new attending on board, I met him yesterday and told him about the concerning throbbing nub I felt upon waking up yesterday, he presses all over the belly and ouched where it hurt or tell him where it felt uncomfortable. He could see how upset ans anxious I was and said he would give me a dosage of ativan seeing that I needed to calmed down, I wish I had documented my day as it happened, it’s really been a shit show. I asked him for the full dosage and not the half.. the intern must’ve been with him because we talked food options for breakfast is egg something, french toastin variety and cereal…. I even tried their gross cream of wheat and that came up, they suggested a Bread Rice Applesauce Toast which leaves me with toast and by the time it gets to the room, its more of a chew toy. I remember going off and telling them they shouldn’t lower the dosage since they saw how anxious I became trying to figure out what to eat. My nurse is giving me the morning meds and I look down and ask where a specific medication was and she didn’t see it on my list, I was the pain in the ass and asked her to back track it and she still said she didn’t see it. The medication had dropped after 30 on Halloween and though the interns domt always see it or probably was like eh she doesn’t need birth control, she’s in the hospital or for whatever reason… I need it to keep the Endometriosis at bay or somewhat under control. The nurse gives me the pills she can give me and send the doctor and interns a message. The nurse notices that the ativan came up and went to go grab it, by the time she went out there they were gone, I asked her the dosage and I knew she was going to say a .5. The .5 was the old dosage that really didn’t help but the doctor did say he didn’t want me sleeping all day. I gave it a try, the anxiety was still going strong, I ordered breakfast because I was becoming angry. I decided to go for a walk to help the anxiety and then round 2 I was on the hunt for the doctors which I never found. Ate breakfast but of course it didn’t settle so there goes the only meal that usually does. Day 3 or breakfast not staying down.

I was set to do an ekg to see how the medicine I’ve been taking for years effects my heart, why they didn’t think to do this while I was on chemo is beyond me since the end game is to have me on it while on chemo so I am able to digest my food. The assistant doing it always has a hard time with the ekg, I’m not sure why but she does. She put on all the stickers and all the leads and as always she starts to move them around and change them out because it’s not working, I went from 0 to 60 and ripped off all the leads and told her to get out. Another thing with her is she’s been coughing and i heard her sneeze, I’m already sick I dont need any more germs around me and she shouldn’t want my germs since she’s pregnant and I told her this morning when she did my vitals that she should wear a mask to protect her and baby from hospital germs especially going in to room when patients have a cold like I’ve had for the past week. Plus the ekg should’ve been done in the early morning not at noon or 11 when she first tried nor should she have weighed me on the bed like she didn. As you can tell my morning wasn’t starting off the greatest.

I decided I needed a nap since there’s no start button for the day. Mom stopped by but I was to worn out to turn lay on my back because it took too long for my body to adjust to laying on my side facing away from the window and I really wasn’t up for talking or even visitors which isn’t like me, it was a very off day.

As I awoke I asked for the doctor to stop by, all in all I was frustrated with the scheduling of the reglan and that a gastroenterologist was not consulted on how to bridge the meds the right way. I’m still puking breakfast lunch and dinner which is frustrating, I didn’t sign up for it but thats my life. As the doctor arrived I started talking and all of a sudden I became angry and frustrated that I had to fight for my care, that I had to continue to be my own advocate because these doctors don’t stay on ome case but rotate doctors every couple of weeks. I’m frustrated but thankful that Dr. F jumped on board of no one would’ve found the blood clots I have. I’m frustrated that the migraines and painfully sensitive eyes that caused the nausea wasn’t a concern until the liver counts were too high so they had to stop the arsenic for 5 days and the chemo pills for 2.5 days and only when we introduced this poison back in to my system did anyone try to help and not much. Time for me to go home is around the corner, though the chemo is on pause for a couple of weeks the day headaches and eye sensitivity continue and the migraines are strong when I wake up in the middle of the night. I was completely fed up that the doctors did not want to

The cloud that hovers over

Thursday 11/1/2018

I have felt like I’ve had a cloud hanging over me all week, I can’t seem to shake it. This morning I should’ve been in better spirits, unfortunately I had bad night and morning with the nurse with no soul. She arrived with the day nurse to introduce the night shifter, I was nauseous so I asked for the phenergan and the day nurse said yup, it’s already up here. I gave thw nurse some time bur then I’m becoming more sick to my stomach and no I don’t expect to be priority, every time I would call she would forward me to her assistant which then I would ask for the nurse amd she said she would tell her, at one point one of the fave assistant nurses came to check on me and said she would let the nurse know. It was closer to 10 when she finally arrived with none of my meds nor the phenergan. She rudely asked me what I needed, I asked for my night meds especially the lyrica and the phenergan. She said oh yeah I had to order that and it just arrived, she then shows up with 2 pain meds that isn’t supposed to be given together since its either one of the other so she asks me which one i want and back primea and hangs the phenergan with half of a huge iv fluid bag so she doesn’t have to come back in 20 minutes. I get woken up by another nurse stopping the beeping and I asked to be detached, she gladly did. I woke up like usual in the middle of the night with my eyes hurting, my head throbbing and nausea, I ended forcing myself to sleep and trying not to cry. The next morning without knocking the nurse and her assistant barge in to the room and turn all the lights on, mind you they dont know me or my case so they have no idea I’m light sensitive. I start saying 1 & 2 1 & 2 and the nurse chooses 2, the assistant starts with the vitals while the nurse man handles my arm to get the morning blood draw, the looms have been giving nurses a hard time all week but she believes its all positional and says that to the assistant. At one point the nurse asks the assistant if thats enough blood, she had done a couple of them already, this must’ve been the last vile, it made me uncomfortable that she wasn’t sure. After that ordeal the nurse gets called and wouldn’t go to another room until she was a part pf an EKG which is a one person job. That finally ended and knew I didn’t have to see her again.

The usual faces came around for rounds, the oncologist said that the 2 out of 3 biopsy results had come back and that I am free of Leukemia cells but the 3rd was more sensitive and it is still pending. As she is leaving I start to anxiously freak out, when she opened the door the PICC nurse that did the dressing last week was there, i think Dr.S probably asked her to move to the next patient and then my day nurse kept telling me the importance of getting it changed and I didn’t care, I would rather wait another day , as I’m getting the morning the picc nurse pops her head in and says she hears I don’t want the picc changed and she only has a small open window and will be too busy, I replied no. When she left I was left feeling anxious with nothing to help with anxiety and a nurse that is new to me but too busy to really check on me or even have the time or much say in how much she could advocate for me. Tracey stopped by and we talked a while and after that I just laid in bed, I walked a lap and a half, I was too much on edge and tried calming myself down

Thankfully I had a nurse that knows this creature of habit, she only hears bits and pieces and summarizes because i talk too much, we chit chatted and i laughed and couldn’t breath from coughing and i asked her when the last time she’d see me laugh or smile like i had, she replied never. Day 1 without chemo is done neither of my looms are good for blood draw, one is actually a dud.

Friday 11/02/2018

Loom 1 is a dud and loom 2 is trickling blood, there was no way that was happening. This morning I had an odd pain in my lower right side quadrant and I was super concerned since it’s nothing I had felt before. Early morning after the intern and Dr.S stopped by a student nurse hung out and asked if she could observe when a different picc nurse stopped by to change the dressing. She also was not patient on dissolving the adhesive with the alcohol wipes and acted like she was, all around the dressing, the top layer of skin peeled up and said my skin was sensitive and we would use a different dressing, she tried to fix both looms and endes up putting a solution in the one that works in hopes that or helps both but that wasn’t the case, she came to try to to fix the other and they are both now up and running.

On the other hand, the moment I finished eating breakfast I was puking it up, there was no chance of it stopping, it tasted and smelled sour and rancid. After puking a couple of hours the doctor and a resident stopped by and asked me about everything under the sun, we might be doing a ct scan and an ultrasound, I did get pretty upset when the doctor asked if this was endometriosis, this uncomfortable throbbing/pulsating stomach issue is not endometriosis. I had pretty much been having a melt down kind of morning and it continued in to the day, nurse Ms.P was being an advocate and got me ativan so I could stop vomiting, so the anxiety would calm down, my head would stop hurting and I would finally relax enough to sleep. I skipped lunch and dinner once again, I would rather try to eat breakfast and hope is stays down, if it doesn’t I skip the next meals, it hurts so much to puke all day, the stomach feels sore.

Mom stayed with me while I was in and out of sleep, I know this isn’t just my journey but my moms too. I’m 28, I wish she would talk to me and tell me whats on her mind. While in and out I was facing her, opened my eyes and looked at her she smiled but then it because I sad smile and she shook her head when I asked her to tell me what was on her mind, she started to wipe away tears. I don’t know first hand how she feels, I can’t imagine as a mother how she is taking in all of this. How vulnerable, heartbreaking and overall scary it is for my mom who’s lost a sister to cancer and to see her only daughter battling one that is curable knowing something could go wrong, how she must worry about me coming home. Though there are probably more germs in the hospital, to her they can take care of me and catch it in time while I’m at the hospital. To worry about what if an infection happen, what if I have to be admitted again. I know the what ifs and the worry has always been there, I’m her one and only baby, this is her first time go around and we truly haven’t had it easy with me being sick.

Story Time

I had the first gastroparesis flare when I was 12/13, I remember hearing my mom truly think I was making it up and suggest to the nurse that I was possibly be bulimic because the flare episode had been going for 3 months and the doctors came up empty in the end it lasted a full 6 montha. Ms.Cook the nurse told her in Spanish that that was not the case, she has Hoovered over me to make sure I wasn’t while at the nurses office and my mom just sighed. I had stomach aches since I was 7, followed me through middle school til my first episode in to the summer before high school and the flare subsided, the stomach pains were all through high school, nothing that lasted 6 months, like the first. Senior year of high school when no one could figure out why i kept having sharp pains, the doctors were at a loss until one day it was so bad that I was told I was turning pale green. Emily and I went on WebMD, we figured it was possibly the gallbladder, i went sent home early to go to the hospital they did different imaging until they did one that showed no gallbladder movement, they went in, took it out and found sandstones that had been building up for years. From then on my mom has taken me serious when I say it hurts, not long after we had to travel to Yale New Haven to a world renowned specialist after having to drop out of my first semester of college during midterns. After the firat ercp of the sphincter of oddi, the muscle wasn’t functioning like it should, 6 months later my second try at going to college rhe doctor said that it was one in one thousand chance I had scar tissue which I did, thw third time i was told that nothing was found and that I would have to learn to deal with it. My mom would sleep at the hospital with me and if she couldn’t she would travel 45 minutes and hours in traffic to be with me even if it was for a couple of hours every day I was admitted. This all happened in less than 2 years and of course we weren’t giving up, at 18 I had a test with radioactive egg salad sandwich and found out I had also been living with Gastroparesis. Though life started out rocky with tummy aches and acid reflux in elementary, I knew that after the gallbladder and New Haven My Mom would travel the world if thats what it takes. I knew she felt hopeless because she didn’t understand what was going on which would frustrate anyone. I wouldn’t trade her for the world, here we are at 28 battling acute promyelocytic leukemia. I have been here 7 weeks and she has been by my side every single say 3 times a day or spends as much time as she can with me. I may come off as ungrateful, its the opposite, I don’t know where I would be without my mom, she is my rock, my best friend. She is my treasure and I treasure my mom beyond the words could say, we have been dealt some shitty cards but we move forward and this journey has just begun. I may not have Leukemia cells according to 2 out of three tests but that doesn’t mean the leukemia gone. The next year we’ll be fighting to keep it away in an outpatient basis, the end game is to go in to remission and hope to never have to battling any kind of cancer again.

This very worned down 28 year old battling acute promyelocytic leukemia, gastroparesis, endometriosis, fibromyalgia, pinched sciaticas , malrotated disk with degenerative tissue and spondylolisthesis is beyond grateful to be alive being able to living life day by day with so much love and support. I want to thank you for taking the time to read my daily blog and joining the rollercoaster that I call life.