It's Not A Dream

Kinda feel like I need to pinch myself...this is not a dream.  Remission.  It's real!!

I slept like a rock Friday night.  Woke up Saturday and felt ready to be "normal" again.....slowly. 

I was feeling strong enough and not bad joint pain so I was able to see my precious Amanda Lynn get married to her sweetie, Tim.  I have known Amanda since she was 9 when she moved to FL just a few short months after I did....and I was her teacher.  Amanda is very dear to me.  So I was so happy to be there to see this big day for her.  And to see my Carmen...looking so beautiful.  Ah, the whole Ramiz family...they had a big day and I was happy to be there.  My girls had a blast and danced the night away until they literally passed out. 

Sunday I got to visit with Jen and Brendan....who were here for our marathon weekend.  OOOPS- stupid lymphoma.   Instead we celebrated remission with dinner at The Cheesecake Factory and tomorrow lunch at Chick-fil-A : ).  Love those two.  I wish we could see them more often.  Jen is gearing up for the NYC 1/2 Marathon March 18th.  So proud of her!

Lymphoma WHO???

REMISSION!  It's gone.  It's all, excuse me, freaking gone!!!  By HIS stripes I am healed!  Claiming it and believing it!!

I am so overwhelmed- I can't get the words out that I want to share.  Kind of still processing and maybe a little bit of trying to wrap my mind over this.  How amazing is our Healer! 

My PET scan showed "no activity".  The tumor in my chest is still there- eww- but the cancer cells have been destroyed.  Doc used the analogy of a honey comb...honey is sucked out, but the comb is still there.  EVENTUALLY my body will absorb that, but it's a big sucker.

Doc showed PET from December and last week- you can see the difference.  I have some inflammation where the biopsy was done, but that should clear itself up as my healing continues.  I can tell the difference myself.  I was worried about that "lump" and had myself convinced that it was more lymphoma.....probably what I will do for the rest of my life...which is really annoying.

I will need to do 2 more rounds of chemo though.  JUUUUUST to make sure.  I am ok with that.  I will have another PET in April after the last round and from there the plan of what comes next happens.  My doc is very much a step at a time guy and didn't give me any idea of monitoring afterward...like every 3 months or 6 months PET??  He did talk about radiation consult again, but he said if the next PET looks like this one he would agree with no radiation neccessary. 

So.  How about that news?  On a Friday nonetheless....a week before my birthday!  It's a brand new year.

My friend, Stephanie, dropped by with the girls after school so I could tell them.  Lina smiled and hugged.  Lydia lifted my hat to see if my hair grew back and asked if my port was out.  LOLOL!  Oh honey.  I told them 2 more medicine rounds to do yet, but (interupts Lyd, 5 years old mind you) "the lymphoma is gone".  Yes, sweet girl...lymphoma who??!?!?!!?  Jesus heard our prayers.  BY HIS STRIPES I AM HEALED!!

Round 4 Begins

I started this entry several times today.

Today was a loooong day. my appointment was for 8:30 yet chemo meds didn't start till 10:00 and we left at 2:30. Sheesh. Now that waiting time I am asked questions, vitals taken, and then orders are given to the pharmacy....apparently that poison just doesn't lay around. But it's not a surprise that I am there. Kinda annoying.

BUT I had my favorite chemo nurse and my port worked so I got over it.
Bob left for awhile to take Lila to pediatrician. She has a wicked cough and tummy woes the other end. No fever. Sleeping. Eating. Generally pleasant. Doc checked her out and seems to think it's allergies (everything is blooming) and quite possibly the virus the big girls had just taking a different route for her : )

Debbie once again above and beyond. Came home to all laundry caught up and house picked up. It Blesses me so much. Then a friend from Lydia's class brought dinner and that was lovely. Perfect for a long day.

Tomorrow is the ick day. Friday I have my consult with oncologist to discuss my PET scan and make final treatment plans.

4 Years and 16:32

Happy Birthday to Lila Joy!

4 years ago....it was Monday- President's Day- Bob was home from work and took the big girls to the park.  I went and enjoyed a lovely pedicure and a nap.  I woke up and ate....pretty much a box of PB Patties and went into labor about an hour later.  THEN had to wait for c-section because I had eaten.  : )  Timing.  Lila arrived a little less than 3 weeks early at 9 something in the evening (I for the life of me cannot remember the time right now).  Lila was a blessing...a miracle....and great big (not THAT big) surprise and I am so blessed to call her my Little Bit, LiLi, Lila Bean.....my baby girl.

Today we celebrated our little Lila Joy with her best buddy from church/school and her family, Gramma, Murry and Grace, and her godparents.  Verrrrry low key.  Very enjoyable.  Little Bit has come a long way especially this past year.  I am so grateful for the therapists that have been placed in our life.  Lila's speech and language development is coming along.  Still working on the social part- but Lila is getting there.  This sweet little friend of hers is so dear.  Lila does not reciprocate the affection, but she definitely interacts a whole lot more than a year ago.  We still don't have an "official diagnosis" and maybe there is NO diagnosis, but for now we continue with therapy (speech and OT) and pray for Lila's development.  And come March we will have a Behavioral Therapist....come to the house to do some "coaching" for me!  Potty training is a reeeeal issue right now.

Sisters with birthday present opening experience were very helpful!

I made Lila's cake and icing....I blame (and thank) Rennie Shultz for teaching me how to make delicious icing and am grateful for Leslie for sharing that extra confectioner sugar I needed!!  Lame decorating, but M&Ms are Li's favorite!  And we sang not once or twice to Lila....but three times.  Candles included.  She loved all the birthday celebration bits this year.  So sweet!

Sweet KK playing Play Doh with Lila.

BUUUUT before celebrating Lila's b-day- myself and two dear Momma friends from Lina's class "ran" a 5K.  This is a neat race.....it starts down the block from our house in front of the girls' school and goes through the neighborhood.  So fun.  We did it for the first time last year.....and have now claimed it an "annual event".  The gals met in my driveway at 7:15 and we walked down the block (you know for warm up : ) for the 7:30 start.  We planned on walking and walking we did....with goals in mind- no one in jeans passes us and if someone is older than us or in jeans in front of us we pick up the pace.

Bob was bringing the girls up to watch us cross the finish line. 

We were doing well, chit chatting, and keeping a "decent" pace (I mean, I DO have lymphoma- at the moment).  The last stretch I decided to pick it up and see what the ol' legs and heart could do.....and maybe to show my girls how strong I am......I crossed the finish line and found them about 2 minutes later.  LOL.  Oh.  Well.  They celebrated with me and enjoyed the "free" fruit and smoothies with us.

About an hour later I received an email with my official time and pace.  16:32 mile.  Now.  THAT is a horrible time, BUT I did it.  I finished it and that's not too shabby of a time for gal that doesn't walk more than a mile a day now.  However, once I bounce back from this chemo round...I will be walking more because clearly....my body is strong and I praise God for that and for friends walking alongside me!!

Week Gone By

Whoooosh!  This week flewwww by.  Maybe because it was jam packed. 

This week I had my coumadin check- and that is back where it needs to be.  "Theraputic level" that would be called.  I loathe the medical knowledge and terms I am learning.  Don't get me wrong the human body is A-mazing what God created and the people (doctors/nurses/techs) that realllly have the knowledge.....rocks my world.  I just want to be a mom and wife...and friend, daughter, aunt and have life just keep moving on.  Uneventfully that is. 

I am reading a book "One Thousand Gifts".  It's a good read.  HOWEVER.....I haaaaaaate reading (yes, I was a teacher).  Ack.  Wish that weren't true, but I hate reading.  I am trying.  I read a few pages....a few times and then put it down and start all over again a few days later.  I just don't enjoy it.  BUT I am growing so much during this stupid lymphoma journey (stupid lymphoma is what I refer to "it" as).  My friend (not really- she doesn't know me at all), Beth Moore is also a good read.  I can fly through her stuff though.  And then talking with my friend Becky (whom I met at a very sad time of my life and who gave me this book and it CHANGED HER LIFE) about what she got from it....good stuff.  I could spend hours with Becky.  I love that girl.  She oooooozes Holy Spirit!

Thursday was my repeat PET scan.  BUUUUUT before that took place my Lydia girl was up throwing up the night before.  Grrreat.  Poor baby girl.  She hates "spitting"- hates it.  I mean no one enjoys it but she haaates it.  She needs to rinse and spit immediately and wants to take a bath...and wants her hair in a bun.  Well, the night/morning could have been a complete disaster and franctic calls for coverage BUT my sweet friend, Becky was here.  This was way more than she bargained for (word of caution- if you come help me- it's always more than planned/expecting)- she was stripping bed and lysol/clorexing anything Lydia looked at in a matter of seconds.  She then woke up before the sun with us to hang out with Lydia and spent day taking care of Lila.  It was a blessing- an absolute blessing.

I got to enjoy a lovely breakfast out with my friend, Mary, after PET scan.  THAT was delightful!

Today Becky helped me clean up and catch up with laundry.  We laughed a lot.  Talked a lot.  ANND we look forward to another get-together before another 4 years go by that involves sunshine, sand, and some wine!

I am glad it's Friday and I am looking forward to a no school day on Monday.

Tomorrow my Lila Joy will be 4.  THAT is crazy.  4.  ANNNND in the AM I am walking a 5K with two dear Momma friends from girls' school.  My goal is to finish.....and not be last.  : )

My Big Girl

Bragger moment:  Lina came home Friday with the honor of Student of the Week for the word: CARING.  I am so proud of her.  She has a gentle spirit and really is caring....probably more so at school some days than with her sisters, but I am proud of her!

It has always taken Lina a long time to wind down at night and fall asleep.  She was a self-soothing rocker for quite some time.  Then she would read....for over an hour and still have a hard time.  Well in December it got a lot harder.  She just can't "shut down" at night.  Lina worries about the stupid FCAT that is NEXT month- "do you know if I don't pass I stay in 3rd grade".  She is not in the door but :20 before the word FCAT is spoken.  I hate it.  I hate it for her.  I hate it for her classmates.  I hate it for the teachers.  It's so dumb.  Lina hasn't had science or social studies for a month now.  The focus is on reading and math.  Annoying.  My one real complaint about Florida's public education system- is FCAT.

When Lina went to doctor last week Bob asked about melatonin.  My wise friend, Kelly, swears by it.  Well..  I am here to say- we love the magic 1.5mg pill that Lina takes at 7:30....and is asleep :30 later.  She is much more pleasant now.  I am so thankful.

BUT Lina still has a lot on her mind.  We pray and talk a lot about what is going on now.  I don't make it an issue, but if she says something or asks.....I go with it.  We were just working on homework.  She had the choice to change something historical or personal.  My anxious mommy heart was thinking she would say "being adopted"......but she broke my mommy heart when she said, "I would change you having lymphoma".  Oh baby girl....I would change that too.  So we talked about it and while I do agree with her I slapped on a "happy face" and was a little more positive speaking when we talked about the strtucture of these paragraphs and reassured her that yes, this stinks but God is hearing our prayers and giving me the strength to fight!!  And we talked about the good that is coming from all this also....which is just like God to show off that way.  There is a  lot of good.  We are blessed....even though this does stink ; )

There Will Be Bumps Along The Way

I have said and felt this whole "thing" is just a bump in the road. However when there are bumps along this bump I fall apart. Not good.

Friday the nurse was not able to get blood return from port. She tried and tried. It would flush and she reminded me that was good and sometimes this happens. That's all well and fine but I don't want it to happen to ME. I was loaded up with heparin and some other med to "clean out" port and told to come today to try again.

God bless all my friends, but Debbie once again above and beyond and more than she has signed up for made today possible. Debbie took Lila to speech/OT and I ran to hospital. Well no blood return so another med to be given and it would take an hour. Text Debbie and without hesitation....she has Lila.

My Coumadin level is fine now and praise the Lord and hour and :10 later....blood return from my port. My PET scan is scheduled for 2/16....and my friend Becky will be here!! Haven't seen that face in 4 years!!!

Goings on

Monday was a rough day.  I am still so achy and SO.  VERY. TIRED.  Plus my sleep was interrupted the night before by my Lydia.  She and I finally fell asleep in the living room on the couch.  BUT I went to sleep about 7:30 Monday night and woke up feeling better Tuesday.

BUT Monday....I needed to do a quick grocery run.  Got to Publix right after dropping girls off at school.  It was buzzing with employees and everything was in tip top shape.  My deli ladies shared with me that Dr. Oz was on his way!!!  I quickly called Marilyn because she loves that guy.  Sure enough he was doing some shopping trip and lecture with some folks...and Marilyn got in on it!  LOL.  I stood in the back and watched him come in- I just waved.  I told a friend that maybe I would "play the lymphoma card" to get a chance to meet him, but I didn't.  ; )  And at that point I really wasn't feeling great.  Marilyn did enjoy a trip around the store and listening to him and then had him sign her shirt.  LOL.  Isn't that great??  Here is the clip http://www.orlandosentinel.com/health/os-dr-oz-food-20120206,0,6173886.story Marilyn can be seen about a minute into segment over his shoulder

Tuesday is here.  Feeling a little better but still not myself....or the "myself with lymphoma".  I haven't felt myself in quite some time.  2 months ago today I walked myself into the ER.  2 months.  Sheesh.  Time is just flying by.

Getting some birthday celebrating ideas together for little Lila.  Nothing big.  Probably nuggets, salad, and ice cream....and some presents.  The girl finally "gets" presents and it's just too fun!

Each Day A Little Bit Better

Soooo true. I wake up feeling a little bit better by Sunday. Maybe too excited to feel human again and jump out of bed ready for day....only to be asleep an hour later in couch BUT I feel a little better. Praise the Lord.

Did wake up nauseous again this am, but my magic pill takes care of that. My throat isn't as sore and my neck feels better. One day at a time...

Bob's love language is doing things- especially with technology. Now it doesn't excite me as much as it does him but it brings him joy to do something to "enhance the technology" in our home. And yesterday he (and thanks to our Christmas money) he bought a big ol tv for the living room. It's ridiculously too big BUT we will enjoy it and be able to all sit comfortably in one room to watch a movie or play Wii without rearranging the furniture. Next we need to find a console table and I need to frame and hang up some pictures. Annnnd hopefully this summer we will move out the old sofas and find a nice L shaped sectional guy!

Lydia had a little buddy, Max, from pre-k. He and his momma, Lynda, and I also hit it off. She's awesome. So fun. Loves the Lord and her family. Different schools now so we don't get to see one another anymore. But we keep in touch. Well. Lynda lives across the street from a sweet lady friend from church, Linda. Funny, right? Well the ladies and Max came to visit last night and it was fun to visit and catch up. Plus we have a great dinner for tonight!

The Rough Weekend

I am not a fan of the first few days after chemo. I feel like....crap and worry about every ache and pain. Annoying. Oh. And I am a little irritable. : )

My port didn't behave yesterday for blood draw. Annoying. They could flush it though so I got my meds. They pumped some meds in there and I go Wednesday for them to try again. I also need to get Coumadin checked because that is out of whack after being on antibiotics for a week.

My knees and jaw really hurt after that booster shot. This round seems to be my neck in the back- white blood cells working overtime there in the spine, I suppose. My throat hurts today. Man, I am whiney today!!

Lina slept for 12 hours last night. Poor thing. Hasn't been feeling well for awhile. Lydia is fine. Lila is a joy! They just left for a fun day with Gaye and Christina....movies, chick fil a, and Hobby Lobby. They will have a great time.

My PET scan will be the week of the 13th. My friend, Becky is going to come spend two nights that week also. I am so excited. She is good for a laugh and prayer. I can't wait.

My 4th chemo round is Wednesday 2/22- Friday 2/24!

And I am ok. No worrying.

To Continue with Being A Mom and Chemo Week

Thursdays are the heavy duty, I shall call them what they are, poison days. Something about a bag of red medicine called "red devil" being pumped in my veins really disturbs me. I don't usually feel well after treatment and yesterday was no exception. Far less emotional than last round though. Well, except for steroid side effects. Yikes. Laugh, cry, rip your head off. You don't know which Jenn you will get in the next 7-10 days. Be warned!!

I returned home after lunch stop with Bob to a nice clean house. Debbie was busy. She is working so hard. And blesses me with her special touches....like new jammies folded on my bed waiting for me in my made bed with a bottle of water waiting for me. It lifts my spirits. She lifts my spirits.

I go at 10am this morning for fluid flush and booster shot and Mary is taking me. A good friend of Bob's dad is having a big heart procedure at the hospital next door that he would like to be in the waiting room for. That makes my heart happy and Robert would have done the same thing. This treatment is quick but makes my joints NOT happy. But there is medicine for that and I will just chill on the couch.

But the morning has started early with cries of "I don't feel well" from my Lina girl. She is now resting in my bed with a wash cloth on her forehead after a dose of Tylenol and 102 temp. I am on the couch. Bob will need to run her to pediatrician this morning. My guess is sinus infection. Maybe ear. Lina is an allergy girl and her boogies come and go but she sounds real congested real quick this time. Poor thing. AND she is going to be SOOOO mad to miss pajama day in 3rd grade AND a playdate after school. : (

Chemo and Being A Mom

My Lyddie Girl....those of you who know her know that she's my "spicey one"- a description her godmother gave her. Lyd has no filter- if it's on her mind out of her mouth it comes. She's not rude or defiant just just spicey.

She's softening though. Lyd's always been a momma's girl. Always. And this chemo thing is heavy on her mind. She woke up again early this am to find me on the couch to snuggle. Lyd wants this done and that port out of my chest. Me, too.

When chemo week comes it involves many great friends that pitch in. Seriously I have some wonderful friends near and far. Debbie arrived at 7:15 this morning and got breakfast rolling. Lila's eyes weren't even open and she started talking, "Debbie's here" and proceeded to talk and talk to Debbie. Girls get dressed and wait for a mom friend, Ann, to pick up and head to school. Once at school girls are in great loving hands of teachers and administrators. After school today another mom friend, Tara, will take girls to her house for homework and snack. It all gets worked out. It takes a week for me to plan it all out but these ladies are always right here. And Stephanie will do Thursday and Friday after school. Then there is the weekend where the girls have fun with friends waiting. It does my momma heart good to not worry about them and helps my positive attitude. I can rest and not worry one second. I love that and am so grateful.

Caught up with laundry yesterday with a friend and working on purging toys.

Life as normal in spurts. And I get by with God by my side and friends!!