Transplant plus 3 days

Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer.[1] Mucositis can occur anywhere along the gastrointestinal (GI) tract, but oral mucositis refers to the particular inflammation and ulceration that occurs in the mouth. Oral mucositis is a common and often debilitating complication of cancer treatment.

So this is what I've dealt with today. Ouch! The next few days are supposed to be the worst, but we must press on! I'm guilty, I didn't get out of bed and walk today but then again I had to get two units of blood so I couldn't really go far anyhow! Tomorrow will be better and bring new beginnings! Fight, Fight, Fight,

Katie

New Birthday! (Day 0 or Transplant Day)

This is Jenn, Katie's sister, I wanted to share with you how today went.

Yesterday a 23 year old male somewhere in Europe was generous enough to donate stem cells for Katie, a complete stranger. What a blessing! Then the cells were hand carried to Katie in Dallas. Her transplant started around 2:30 and finished around 4:00 pm. She did very well throughout the transplant! Katie was surrounded by family today...Mom, Kim, me, Adam, Dad, Linda, and Sherry.

Now the waiting game begins. Katie will probably start having side effects next week from the chemotherapy used for conditioning. From experience, we know that this is a rough time for her. We should start seeing the new cells engraft in 10-14 days. They predict Katie will be in the hospital 4-8 weeks.

I can't thank you all enough for your prayers, thoughts, email, texts, cards, and gifts for Katie and our family. We are truely blessed to have each of you in our life.

Love,
Jenn

T -6 (Six Days Until Transplant)

Today started early, like 4 or 5 early!  I just couldn't sleep last night. I actually wasn't too anxious, I think I was a little uncomfortable from this picc line in my jugular vein.  It's much better today.  Chemo started promptly at 8 am (Etoposide) a chemo I haven't had yet. It runs for 24 hours. It's almost 9 pm now and it's been tolerated fairly well.  They run this chemo with tons of fluid and between that and me drinking 4 bottles of water and Gatorade I went to the bathroom every 15-20 minutes (drinking that water KJenn! hear that!)  The main side effect are those awful mouth sores so I've been swishing my mouth with whatever solution they kept bringing me today.  Trust me, I will do anything to avoid the mouth sores, had them one time and I never want one again =(  I had so many people in and out of my room today.  Physical Therapists, Doctors, Nurses, the head of the department, my WONDERFULLY AMAZING MOTHER for lunch, social workers and trust the list goes on.  So I'm pretty exhausted right now.  Tomorrow will be two chemo's (Etoposide and Cytoxan) and with the cytoxan they give that with 5 or 6 bags of IV fluid and the bathroom breaks will be even more frequent...how annoying but that's okay, we're going to make it!!!!!!  Still Fighting!  Katie

March 9th

Well, today I was admitted to the Baylor transplant floor.  It's been a little overwhelming to say the least.  I feel a little better than I have the last two days (full of anxiety), after having a full tour of the transplant center and meeting quite a few nurses and the head of cardiac surgeons (who just so happened to be the guy to place my triple arrow lumen in my jugular vein)! OUCH but it had to be done and I'm so glad it was him, he did a wonderful job on talking me through it and getting it on the first try.  Other than settling in, signing lots of paperwork, having this JPICC put in, it's very quiet around here.  They will start my prehydration fluids at 10pm then Chemo (Etoposide) at 1 am.  I will fight, and I will never give up!  Thank you from the bottom of my heart to all of you supporting me and your continuous prayers, I cannot express my gratitude enough! It is this time right now that I need the most support and prayers, prayers not only for me but for my Doctors and also my donor who chose at such a young age to want to be the miracle in someones life....MINE!  I will continue to update (hopefully on a daily basis now leading up to transplant) depending on how I feel after chemo and radiation. I truly love you all!  STILL FIGHTING......Katie

Great Weekend

I was ecstatic when my best friend for the last 10 years called me Friday evening to let me know she was coming on Saturday....(she said we discussed it last week, ha I don't remember even talking to her)! Sad, I know.  But what a breath of fresh air.  It was a good two days of non-stop laughing and reminiscing on all the funny (and stupid) things we've done.  Sunday (today) we decided on a whim to go to the Fort Worth Zoo!  I walked the entire time!  It's never felt better to exercise as my legs have been so weak  but not today!  Rebecca couldn't believe how big our zoo was, because in Austin the zoo has like 5 animals all together haha (not kidding)!  Then we rode the train around Trinity Park, I haven't done that since I was a child, so relaxing and a perfect 71 degrees with a little wind.  So sad she has to go but I know she'll be back soon enough.  My transplant was moved to March 16th,  I'm kind of glad it's not on the 15th (the Ides of March) lol...the 16th is a good date, Ryan and Rachel were both born on the 16th so that's a special date for me!  This coming week we will be getting Ryry and Rachel and thanks to a generous donation and my sister Jenn's idea, we will be taking them to Great Wolf Lodge (a hotel with a huge indoor water park)!  Surprise Babies!  This will be the last time I see them before I go into the hospital on March 9th to be prepped for transplant.  More chemo, breathing treatments to prevent pneumonia, radiation (which I've never had...yet) then transplant (Happy Birthday new immune system!)  This is the last leg of the journey (tough part) then I will be able to say I "HAD" Cancer! Praise the Lord!  He has pulled me through this far and will continue to be by my side even though I have a little apprehension...(who wouldn't)?  But I trust in Him wholeheartedly and know success is only a few weeks away now!

Feeling Great

It feels so good to feel good after being sick for what seemed forever!  Now I just need to stay well for two weeks and two days! That's when I go back to be prepped for "my new birthday" March 15th.  As far as I know being prepped consists of 3 days of radiation twice a day and chemo....I'm over chemo, my body is not handling it well at all now, I have severe neuropothy in my hands, I take medicine 3 times a day for it but it doesn't do much =( , blurry vision, I now have places on my thighs that are numb..its very weird, my legs feel very weak no matter how much walking I do at the hospital to keep the strength up, my back spasms now from where I've had intrathecal chemo I guess, whatever it's from, it wasn't there before chemo!  It amazes me how the body can handle all of this. But all in all, I am strong and well right now. I'm grateful for my life no matter what obstacle I now have to live with, God is good!

Getting Close!

Well it's time for a good update, so much has happened.  After getting out on Superbowl Sunday, the very next day I was unable to hold anything down.My stomach and throat burned pretty bad. Luckily we had a doctors appointment the very next day.  I still lost more weight aside from the six I already lost the week before. Dr. Vance took one look at me and my counts and said he was putting me back in, news to my ears because I really wanted to have testing done to fine out why I have vomited now for three weeks!  Sure enough all tests came back negative....good but I still didn't have the answers I wanted, they concluded that the chemo caused toxicity in my intestines, stomach etc. It would just have to run it's course. Now that my care has been transferred to Baylor in Dallas, it's not easy for everyone to just come and drop by to see me any more.  I didn't realize how bad this would make me feel, but I sure get lonely. So I called my dad and he had no hesitation to drop everything.... and come see me for a few days. He did exactly what dad's do, made me feel better, we shopped together, oh and yes when we woke up one morning dad said "hey kate, let me see your hair brush" with out even thinking....we both looked at each other and laughed up a storm...its moments like that I will remember forever. So Dr. Vance came in shortly after to give us news we've been waiting for...March 15 will be my new "Birthday" or transplant day! yay!  so on March 8th I will start the radiation. The babies were here for Valentines Day visiting me in the hospital. Ryan lost his first tooth so that was the highlight for him lol.  Well that's all I've got right now!

Methotrexate and ARA-C

I started getting sick on Thursday after Mom and I ate at Friday's restaurant.  I vomited from then until Sunday when I finally came to the hospital clinic which luckily is open on Saturday and Sunday.  They determined I was extremely dehydrated and admitted me to the hospital then instead of Tuesday which was the original plan to start my last round of chemo. I finally saw Dr. V on Monday. He said he believes I got some weird toxicity to my A round which is like 5 different chemos. I still get a severe reaction to vinchristine, severe pain in my legs they don't believe is linked to the nulasta or nupogen and I cannot feel my fingers at all at this point.  That's cool because I've had my last A ROUND EVER! Woo Hoo! And in fact this is my last B round ever as well!  So just 48 hours of ARA-C and chemo is done, now onto transplant! I got out Superbowl Sunday, Mom came yesterday morning and "sprung" me. All the way home we saw cars decked out with either Green Bay or Steeler fan memorabilia. The Green Bay people all were nice and waved at us...that's how we deciced who to go for this year since our beloved cow girls didn't do so well. Being at home is nice....I get extreamly bored but it's still nice. We have an appointment tomorrow with Dr. V and hopefully he will tell us when our exact date of transplant is, we would all like to know. While in the hospital this last week, I went through a battery of tests, blood tests, EKG's, ECG's, etc...all were negative.

28 Days in the Hospital

I got out of the hospital yesterday 01-24-2011. Yes I was in for 28 days. That's a long time without your own bed!!!  It probably would not have been as long if Dr. X didn't leave me in pain so long and we didn't have to transfer...but it was well worth the the transfer.  I have an appointment with the new doctor at Baylor....and this appt. will decide if I have one more round of chemo or go straight to transplant! I vote go straight to transplant so I can say "I had leukemia"!  My sister informed me I have a "MUD" or matched unknown donor.  Thank you MUD for doing everything you're doing and giving up for me...someone you don't know...bless you and your family always.  I will update after my appt. tomorrow!  Still fighting.

Love to all,
Katie

Baylor

It's Monday morning, gray and overcast, looks like rain...again from my 9th floor hospital suite.  It's really something,  all hardwood floors, bigger rooms, my own refrigerator....Awesome!  Oh yeah,  there is a Chick fil A and a Starbucks, for those of you that like to bring me Starbucks. I believe it's on the basement floor and go straight ahead as soon as you get off the elevators and its on your left. LOL jk hi.  Anyway,  I cannot say enough about this hospital!  Every single person, nurse, doctor, housekeeper, etc...has offered nothing less than the best southern hospitality I've experienced in a long time...in a hospital setting anyway! I guess I forgot that some of the symptoms of chemo come a week or two after having chemo, like the neuropothy in my fingers was finally starting to go away and today I woke up and it's just as bad as before. It has also taken to my upper arms...feels like I got ten tetanus shots in each arm...ouch. And I'm still having pain in my femur and upper leg muscles from the Nulasta shot. They think the vinchristine could be causing this also,  who knows, but who cares?  I'm ALIVE and WELL, and well taken care of!  I cannot thank my Mother enough for all she does, has done and will continue to do for me while I'm sick. Thank you Mom, I love you.  If I had to name everyone that has supported me and cared for me through this, I just know I'd leave someone out by accident, but I love each and every one of you.  I'm so blessed to have two sisters that are nurses and come see me and bring me junk.... i.e. (thank you Kim for the girl scout cookies, and Jenn for the Starbucks and body wash and lotion) yeah they spoil me, yeah I like it! And it's fantastic to have an Aunt Sherry close by for when the others are gone....(if you don't have an Aunt Sherry, you should get one ;) ) Well that's all I have for right now.

Still Fighting,
Katie

Playing Catch Up....surprise lol

Well good morning folks!  I'm going to try and bring everyone up to speed the best I can with out writing a novel. Okay, so we talked about Dr.no good not wanting to give me pain medicine for the NEULASTA. Lets go over a few of the side effects of Neulasta....

Neulasta side effects

Get emergency medical help if you have any of these signs of an allergic reaction to Neulasta: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Stop using Neulasta and call your doctor at once if you have a serious side effect such as:

• sudden or severe pain in your left upper stomach spreading up to your shoulder;
  
• severe dizziness, skin rash, or flushing (warmth, redness, or tingly feeling);
  
• rapid breathing or feeling short of breath;
  
• signs of infection such as fever, chills, sore throat, flu symptoms, easy bruising or bleeding (nosebleeds, bleeding gums), loss of appetite, nausea and vomiting, mouth sores, unusual weakness; or
  
• bruising, swelling, pain, redness, or a hard lump where the injection was given.
  

Less serious Neulasta side effects may include:

• bone pain;
  
• pain in your arms or legs; or
  
• bruising, swelling, pain, redness, or a hard lump where the injection was given.
  
  I had:
  1. Pain in both upper shoulders
  2. flushing
  3. fever
  4. chills
  5. sore throat
  6. loss of appetite (big time)
  7. nausea and vomiting
  8. mouth sores (but mine were so far down my esophagus the numbing meds wouldn't reach)
  9. bruising, swelling and a hard lump at site of injection (see photo) ouch!
  10. BONE PAIN
  11. Pain in arms and legs
  
  Whew, but none of that warranted pain medication.  I went 4 days and 3 nights in this condition with no medicine at all, no nurse would come in my room to console me when I lay there crying, praying that the good Lord take me home, then had to reconsider that prayer because I'm fighting for Ryan and Rachel, in fact they came by to shut my door so the other patients couldn't hear me. So I started to pray for strength, and pain relief from God, whom is my ultimate healer, NO DOCTOR, NO NURSE BUT GOD is my ultimate healer and as I lay there as still as I could,  I can guarantee you my pain eased, a little, but it did, and at that point I knew everything was going to be okay somehow someway.  I believe it was that evening Jennifer called me and asked me if I wanted to transfer to Baylor Dallas (and of course I did), so she said she would call me in the morning after working out the details.  Morning came and Jenn called...with Dr. X on the phone who wanted to confirm I no longer wanted to be in his care haha really guy come on!  The very next morning two men with a stretcher came by my room and picked me up and transported me HERE, to Baylor Dallas!  Love Love Love it!  From the moment I was wheeled they've made it seem like I'm the only patient here!  Every single nurse I've met so far has been so wonderful.  My new Dr. who is the doctor that will do my transplant is FABULOUS!  He has me on a great pain regimen and said anything else I may need it's mine!  Comfort is key here! I've had two great nights of sleep, and I need to go explore some more...I hear we have a starbucks and chick fil a....score.  Katie is happy, getting great care...no exceptional care, will I should probably stop writing now as I just had pain medicine lol.
  
  Still Fighting,
  Katie Maldonado
  

Uh oh!

I'm not quite sure why, but I woke up around 12:30 w/ severe pain all over my body.  If I remember correctly they gave me a shot of levoquin in my stomach, but I thought that it was supposed to prevent blood clots.  It was awful, I FINALLY got pain medicine for it. It's 5am now and I still feel like I've been hit by a truck, all muscles hurt, and I have been doing lots of walking laps and laps around the oncology floor but the pain remains.  My Dr.'s response, you don't have any more leukemia in your blood so you shouldn't hurt. Whatever. I wish he could fill my shoes for a day...just one day, not every day like me, then see what "doesn't" hurt so bad!  

Still Fighting, Katie

Visitors!

This evening I had two of the greatest visitors!  I've known Brianna and her Mother since I was in 6th grade!  It was so great to see them "healthy" because they were waiting to come see me until they were well enough.  Brianna didn't miss too many days by my side when I went through my induction chemotherapy,  she's always been there when I've needed her....oh and she brought starbucks. Yum, thanks Bri.  Dee (Brianna's) mother used to take us everywere during our summers out of school...I don't know how she did it being a night time neonatal nurse, only sleeping a few hours then taking us shopping, or where ever really....I'm glad you retired early Dee!  I LOVE LOVE LOVE my Jim Shore cross that sings Amazing Grace! You guys are truely amazing and your hospitality is one of a kind.   I love you guys.  Still Fighting, 

Katie! 

Not the best day...but I'm entitled!

I feel like such a complainer sometimes, but really this nasty cancer is all I have to talk about because it consumes my everyday life. Every decision I make revolves around it. Yes, I have great days, and yes I have horrible days, but EVERYDAY I have God! Not once have I questioned "why me"...why not me? I believe God uses us in many different ways and what ever his glorious plan for me is I trust with everything I have he knows what he's doing. PS i have overheard some people say they are so tired of hearing about cancer....then close your ears, eyes, and browser and go about your healthy life.....which by the way could be ripped away from you in a day just as mine was. Still fighting- Katie

On another note... My blood sugars have been well into the 200's so I've been getting insulin shots in the belly...also they started my nupogen last night....my legs hurt, but my doctor doesn't feel like I need pain medicine, (um I'm pretty sure pain control is my right as a patient) but as discussed we don't exactly see eye to eye on many issues).  I'll be fine...what 2 more months, I'll have my "new birthday" and wont have to deal with him anymore.  I woke up this morning with severe edema (swelling everywhere)...you can barely see my eyes or knuckles...quite humorous to look in the mirror and see that but I'm sure my lasiks is coming soon haha. My father came to spend the night w me from Austin last night an I woke up to a starbucks....it probably wasn't a good idea to drink but hey, I'm a sucker for the stuff and anyone that would like my drink order, I'd be happy to give it to you! lol still fighting - Katie

I continue to thank each and every one of you for the continued thoughts and prayers and you are all in mine. ! 

In Christ,
Katie

Random

Been up since 4 am, cannot sleep in this place very well...just finished  my 5th bag of cytoxin. Today...the "red devil" doxirubison and vinchristine! I hate those two, especially the vinchristine....creates neuropathy in my fingers.  Dr. G came in last night at 11 pm...really? why? He didn't speak two words to me other than hi how are you, i just looked at him, he got on the computer, made a few notes and just walked out...good I didn't really feel like dealing w/ you or your tantrums at 11 pm.  He is not the man that is going "cure" me, God is MY ultimate healer, no one else is going pull me through or take me home but him.  No new news other than I'm thinking he's thinking bone marrow biopsy...very soon, as soon as I clear the very last 0.8 % of the cancer left they can barely detect, then I can start my part of testing (and trust me he is just as ready to get rid of me an my smart family for calling him on all his BS as we are to get rid of him =), consisting of PFT (pulmonary function text, more blood , like they haven't taken enough already, and several other things...ready for my transplant and new birthday! Funny thing, after 5 bags of cytoxin and mesna....my counts haven't dropped one bit, everyone around here just kind of looks baffled....everything seems back words with me....I can guarantee the vinchristine and doxirubison will wipe the counts to where I'm nupogentic.  I'm so excited to see my sister Jenn today!  I hope she comes bearing starbucks!  I'll take a venti iced cafe con leche w/ breve and vanilla kay? lol jk..well no I'm not because once I'm nupogenic they won't allow the "cream" or any dairy....Miss you Kjenn muah! see you in a few hours.  Thank you for all the continued prayers to our Ultimate Healer!  still fighting,
Katie

God Is Good

Today we got the call of a lifetime...well my lifetime anyway lol....They have found a perfect bone marrow match for me!!!! All I know is he is a 23 year old male from somewhere in the WORLD!  To not only have someone so young on a donor list like this is just amazing and I cannot wait for the day I have been transplanted, recovered, then meet my mystery man who saved my life!!!! We were planning for transplant in May or June and now it looks like it will be February! This is possibly my last round of chemo. I'm cool with that....only 3 rounds, no side effects, obviously hair loss but hey GI Jane looked cool right?  Only two spinal taps, and maybe one or two bone marrow biopsies (under anesthesia) I'm good...I can handle the rest!!!!  I'm just that much closer to moving back to Austin, getting back to work at the hospital and having my babies 24/7!!!!!  Ahhh, it's great to look to the future but one man here on my floor just told me..."Live in today, the devil keeps you in the future, he causes worry and despair" (which were my feelings exactly yesterday). So as my future dreams are nice, I'll stay here and keep my head in the game a few months longer!  I feel so great right now! Still fighting!!!!

Katie

About to start Chemo

Well it's almost noon and not much has happened since I go here yesterday around 3pm.  I have a cold so they were debating whether or not I would even start chemo. The doctor wrote the order this morning so starting at 1pm the first poison of choice, Methotrexate, will start.  I've had Methotrexate twice in the spine and once for a regular chemo session so I know I don't have any "major" reactions to it....some people get horrible mouth sores but my Oncology sis Jenn advised me if I drink a ton of water before and with it, I will usually fare pretty well...so far she's been right! Thanks Jenn!  My housekeeper came in and she's one of those that will tell anyone her life story to anyone that will listen. Today she decided to tell me about everyone in her life that she's known that has passed away from cancer, thanks housekeeper.  Christmas was fantastic, love love love being with all my family!  The babies came from Austin. Poor Ryan had the croup but you would never know unless I told you and Rachel is just as sassy as ever. I was sad to let them go back home but Daddy is really doing a great job with them!  Having said that, it's time for me to get back to kicking this cancer out the door and trying to be as strong and healthy as possible! Thanks for all the continued prayers, it is greatly appreciated!

Round 2A

Well, tomorrow I go in for round 2A of chemo....(same as the first 30 day induction round).  It's supposed to be pretty intense from what I understand, but I didn't have any problems the first time so I'm praying for the same this time. I'm not really worried, although I do not really enjoy the unknown. I'm sure all will be fine.  The only major difference this time is I have a port in my chest instead of a PICC line....they do have to stick a 1 inch needle into my chest to access it and I'm definitely not a fan...stick me all day with needles and I don't mind, but this port thing...not fun.  Everyone says I'll get used to it....um, no I won't, I can assure you that right now!  Yeah ,yeah I know all the "benefits" of it but still.  I wonder if my doctor reads this...I would love to blog about him right now, once again, not a big fan!  That's all I'll say about that right now.  So I think I'm way over packing for this gig but I can't stand hospital gowns and all the staff know I wear all my own clothes. I guess I got bored packing for the next 30 days because I'm sitting here blogging...this is probably why I've never had a blog, a) I feel scatterbrained as I keep switching subjects, and b) my life doesn't seem that interesting to myself. But I had a blog to read just days after I was diagnosed by a wonderful man who had the same diagnosis as me, so I was able to know what I was "in for" for the most part and I hope one day I can return that favor for someone who stumbles upon this by pure chance!  Well, I'll keep everyone updated this next month! Still Fighting,

Katie
Diagnosis Date (10/05/10)

Katie decides to Blog!

Hey guys, I decided I would "help" Kim out a little as she is so busy with work and her two children to get on here much, so I guess y'all will get to hear some of this from my point of view! Of course while I'm having chemo or sick Kim will tag team with me to keep everyone in the know. This is my first blog ever! The intrathecal chemo I had last week went smoothly. They also tested the fluid around the spine for any cancer cells, negative...for the second time! Yay for that.  I do dread my weekly meetings with my oncologist because I always know he'll have some fun new "activity" for me.  For instance last week he sprung on me the intrathecal chemo with few days to even think it over; today he decides its time for another bone marrow biopsy!  YUCK!  I reminded him that as long as an anesthesiologist was there, I'd see him bright and early!  Let me remind you the first one of these I had was with just lidocain and a scalpel....well there's another instrument that kind of looks like a screw, anyway that will never happen again haha.  He actually had the nerve to ask me " Do you wanna do it in the office or at the hospital" lol funny Doc! Since I had pneumonia (I don't think that was blogged about but that was about two weeks ago when I spent Thanksgiving in the hospital) I've only left my house a few times!  I'm trying to stay well so my babies can come for Christmas and see me out of the hospital!  So, I've learned Wii Fit. I also learned the cycling will make you nauseous after taking Gleevec (a home chemo drug), I've learned lots of patience, so I have now read the entire Twilight series of books in this two weeks, and now that I'm done with that, I guess I'm blogging now. I'll keep y'all updated as much as possible but right now it's pretty boring around here. Still Fighting!
Katie

Intrathecal chemo today

Katie arrived at the hospital at 7 am expecting to start the procedure at 9 am. The doctor apparently did not write the correct orders for the chemo drug or anesthesia for the procedure. Katie finally was taken back to get started at 10 am. She had to do this without any anesthesia just lidocaine. During the procedure the did hit a nerve and it was very painful and sent several shocks down her leg making her leg jump. Kinda like hitting your funny bone. Well they pushed through it and Katie did well. She is in recovery now laying flat for 2 hours. Katie is very ready to leave the hospital now and go eat at Cheddars! I know she is back to normal when she starts talking about food! Lol.

Next round of chemo should start Dec 27th, after the Christmas holidays if she can stay well by then. If anything happens between now and Dec 27th I will try to make a new post. Sorry for the long delay.

Kim