Merry Christmas and Happy Hanukkah!

Wanted to take a few minutes and wish everyone a Merry Christmas/Happy Hanukkah.  And to thank you all for following my journey.  It's still on going and will be for awhile.  I will continue to post and hope you continue to follow.

Quote:

Each day comes bearing its own gifts, untie the ribbons!

An outing!

Was so excited that I got to ride along to the airport the other day to take my sisters.  Didn't get out of the car but I got a ride in the car.  Such excitement.  BUT today I actually went to the grocery store.  Found a pair jeans (that fit me), sweater (cold here for me), nice scarf around my neck, a little bit of make up, earrings and a black hat that I got a while back.  Bill calls it my Yoko hat.   And off we went to Publix.  Put on my mask and in to the store I went.  Went through the whole store too!!  Didn't go down all the aisles but several of them.   Was proud of myself!  Little things right now make me see that I am going to get my energy back.  Even if it's little by little.   I can tell you though that I was tired once we got home and the groceries put away even with Bill's help.  Bill did tell me that he was nervous the whole time we were in the store.  

Been feeling pretty good.  I have more energy most days.  I do have some days that I just don't feel  good.  Not as many any more.  I know I get antsy sitting around.  Have been doing crossword puzzles and word finds.  Also, coloring in my adult coloring book.  Thanks Judy!!!  These things help me with my neurophy in my fingers.  

Christmas will be calm this year.  Kristi, Matt, Sasha, Ellie and mom will be coming over on Christmas Day.  Bill is smoking a brisket for us.  Can't wait for that!  Just a few sides to go with it and that's it.  The girls made us a Christmas tree.  Has a few presents under it already.  Just being able for Bill and my FL family to be with me is the only present I need!  

Quote:

Life may not be the party we hoped for, but while we're here, we should dance!

Felt at home!

Today I had an appointment with my oncologist Dr. Sarriera.  Haven't seen him since October 10th. He reviewed my records from Moffitt.  Was pleased where I am.  Fluids still an issue but working on it.  Will continue to monitor me via blood work.  We discussed the probability of me going on a years maintenance of Revlimid (chemo pill) within 3 to 4 months.  This will be a very low dose as this is the drug that caused me to break out in hives and a rash very early on in my initial treatment plan.  All immunizations will be redone within 3 to 4 months.  I will continue to have my Zometa (bone strengthener) drip every 3 months.  Changed dosage on my Lyrica to help with my neuropathy.  Hope it helps.  Pray it goes away.  Next appointment with him will be January 17th.  Sent me for labs then.  Got an email later saying my magnesium level needed a boost.  7 days of over the counter magnesium oxide tabs will help that problem.   That was all he was concerned about for the labs today.  That's great.  Got to see Desiree before I left.  She is a ray of sunshine.

So glad to be back with my oncology team and my Cancer Center. Left there feeling I was at home.

Quote:

Every evening I turn my worries over to God.  He's going to be up all night anyway!

Sisters!

Each day I gain more strength.  Each day I am able to eat more.  Each day I am able to walk more.  Each day I am able to drink more (still not near enough).  I know I still have a way to go but each day brings me closer to me.  

Friday I have an appointment with Dr. Sarriera, my oncologist.  Haven't seen him since October.

As most of you know, my sisters flew down to visit me, our mom and Kristi and family.  They spent several hours with me Tuesday and Wednesday.  Brought mom along.  Will visit for a bit tomorrow again.  So glad to see them.

Quote:

The pain you feel today is the strength you'll have tomorrow!

Love being home.

It's been 5 days.  You never know how you appreciate your home until you been away for almost 30 days.  Those were the longest 30 days ever.   Especially the last week and a half.

I am getting stronger each day.  My energy level isn't much.  Slow going but going.  Walking around the pool several times twice a day.   This week I want to walk some in our neighborhood.   Just a few houses, then more, then more till I can walk the circle.   Eating has been a challenge.  Mashed potatoes have been my comfort food.  Bill did chicken on the grill and was able to eat that.  Tonight we made spaghetti.  Went down okay.  Missed eating it with my jar of jalapeño though.  Didn't think that was a good idea.  Drinking has been another challenge.  Could only drink Gator Aid.  If I get it from the refrigerator, I can now handle water.  Need to drink 64 oz. a day and am no were near that.  Going to make a smoothie tomorrow to see if I can drink that.  Not sure what I will put in it yet.

My Christmas has been cancelled this year.  Have our girls, sons-in-law and grandkids taken care of and that's what matters to us this year.  We will appreciate Christmas so much next year.  But this being said, I wish you all a Merry Christmas and a Happy New Year.

Quote:

The only time you should ever look back is to see how far you have come!

Lots of pots.

Well today was our first full day at home.  What a joy.  Able to walk around more than 50 feet without having to turn around.  Able to walk outside and enjoy my flowers.  Yes, they are still blooming.  Even have a Christmas cactus blooming.   Our bougainvilleas (Louise) are beautiful.  Able to sit in comfortable furniture.  Able to sleep in my bed.  And most of all, Bill had lots of pots to choose from when making food.

So happy to be home.

Quote:

Cancer can take away all of my physical abilities but it cannot touch my mind, it cannot touch my heart, and it cannot touch my soul.  

There's no place like home!!!

Dr. Ochoa released me today.  And did I cry!  Yippie.  We will be heading home tomorrow morning.  I think he realizes my mending will be better there.  I have a long way to go but know home is where it's going to happen.

Got my central line out about 1 hour ago.  She didn't even have to numb it as it came out on it's own.  No shower for 2 days.   Have to ice it 4 times a day.

Will try to update off and on once home.

Quote:

Turn your face to the sun and the shadows fall behind you.

Vistors!!!

Yesterday, Matt, Kristi and the girls drove to Tampa to visit.   Was so nice.  We talked (probably told the same thing over we already talked about), laughed and talked some more.  Pap took a much needed walk with the girls.  Matt got us pizza, wings etc for dinner.  I am not allowed delivery so Matt went for it.   Was really glad to see my granddaughters.  Ellie in her fancy dress up clothes and boots with heels and Sasha being herself in her size 0 jeans.  LOL.   Had to cry a little though when they left because I want to go come so bad.  Hopefully, by the week end.  See my doctor tomorrow and going to beg a little.

Well, off to the Cancer Center for blood work and a drip of fluid.  No PA or doctor visit today.

Quote:

We can't always direct the wind but we can adjust the sails.

Baby Girl!

During this venture with my transplant etc, we became "waiting for the lab work, doctor, etc visits" with a great family only knowing them by Mary and Eddie.  A beautiful caring black couple about 10 years younger than us I think. Mary said she had been praying for me and Bill and prayed that they would see us again.   Eddie was the one with MM and his schedule for a BMT was around the same as mine.  Hadn't seen them for a while and today they walked in to the cancer center for treatment.  We were so happy to see them.  Eddie is a few days behind me feeling wise so I know where he is.  He also has neuropathy caused by Velcade.   I felt bad as I watched him struggle for some energy.  We both ended up in the treatment chairs next to each other (separated though).  Both needed potassium and fluids.  Both need them again for the next few days.  They live near the cancer center so they can go home each night.  What I am working towards.  What I need!!!  Mary gave me her phone number and told me if Bill needs a break, call her and she will get someone to stay with Eddie and come stay with me.   This is a "new" friend that I will keep in contact with once we leave Tampa (praying soon).  And she calls me "baby girl"!!!

Quote:

Make new friends but keep the old!!!

Posted this on Facebook today!!

I have been thinking about doing a "where have you been" for Facebook for a bit now. Today seems like a day I may be able to fill everyone in on my last few weeks adventures. If that is what to call them. Most of you know that I was diagnosed with Multiple Myeloma cancer at the end of June this year. Started with a lump on my head that was diagnosed first as cellaritious and then fatty tissue by two PA's and a surgeon. I insisted on X-rays. Found lytic lesions through out my scalp. Went to a oncologist and they did tests including a bone marrow biopsy. Found the Myeloma. Plus, not only did they find Myeloma, mine (of course) was a rare type. Had several weeks of chemo. Then they recommend that I have a Bone Marrow transplant (BMT). Had that November 14th. Was in the hospital until Saturday, November 26th. Released to a Moffitt (the Cancer Center I was at), approved hotel. The hotel has strict cleaning rules and care for these approved rooms. It's a two bedroom suite. But I am here to tell you, the furniture (except the beds) are not made for comfort. I may have to say something. LOL. Bill is my caregiver and must be with me 24/7. He is awesome. I couldn't do it without him for sure. We go to the cancer center each day for blood work and if I am low in potasium, calcium, flluids etc. have to have drips of whatever I need. However, today was a free day. Thank heavens. How do I feel? Each day so far is a struggle to get out of bed and get ready. They say it takes time and not to rush it. My head, because of drugs, is always dopey feeling. Starting to eat more, which is good. Have not thrown up for the last 2 days. Yippee. My neurophy is still bad but not as bad as several months ago.

I had one beautiful visitor that I haven't seen in years at the hospital. Judy Carpenter!!! So glad to see her. We now live within two hours of each other and will visit more often for sure. She had always been a special friend!!! Wanted to visit again here at the hotel last night but I wasn't sure how long I would be at the cancer center. And I am totally exhausted after those treatments.

I have received lots of messages etc but do not feel I don't know that. I have just not been in the mood to answer them. I do appreciate them though. Had several calls and I try to at least talk to my daughters daily. My mom every few days. And my sisters. I will get back to calls and messaging again. I am just happy I was able to sit here and type this today.

I have a blog for you that may not know and I would love for you to follow it if you so want to. I haven't been updating it much lately. Kristi Klein tries to update as she can.

www.quiltstomake.blogspot.com

Thanks for all the prayers too!!! Please continue to send them. They are felt!!!!

xoxo

Address of hotel:

Townplace Suites Marriott

6800 Woodstork Road

Tampa, FL 33637

Suite 131

Kathy Snowberger

Quick Update

Talked to mom last night and she sounds better than she has in weeks!


xoxo
Loves ya!

Just me!

Wanted to let you all know I appreciate your texts etc. and sorry I don't respond.  So glad Kristi can do an update for you each day.

I have no energy and half the time, don't even reach for my phone or iPad.   Imagine that!  Me?  But wanted you all to know that I apppreciate your caring and concerns.

Quote:

Remember how far you came.

Elvis Has Left the Building!

Well...really...

KATHY HAS LEFT THE HOSPITAL!!!

Mom was released yesterday afternoon and she and dad are now in their hotel close to the hospital. Today, they start their daily visits to the hospital. At every visit, they will do bloodwork and based on those results, give mom anything she needs. She could be at the hospital for a few hours or all day long depending on the results.

As of Friday, her white blood cell count had more than doubled from the day before. Now, if the nausea would cease, she'd feel a million times better. She has no energy. It took a long time for them to leave for her appointment today.

We are not the only ones ready for her to come home. Tommy is also ready for his mom and dad to come home. I give him as much love as I can when I visit, but I know it's not the same. And I know mom and dad are ready for Tommy snuggles.

Black Friday Deals!

Or not...

We originally thought mom would be released from the hospital today but no one (mom, dad, doctors) felt comfortable with her being released. She's still suffering from really bad nausea and has to get fluids often to prevent dehydration.

The next targeted release date is tomorrow (Saturday). Dad is already preparing the hotel room for her arrival. Once she's released and in the hotel, she'll still have early morning checkups at the hospital. Depending on the results of these checkups, she may have to stay for drips of one thing or another (calcium, fluids, etc). Hopefully after 2 weeks of monitoring, she'll be able to COME HOME!

She wasn't feeling well yesterday and wasn't able to keep any food down so we owe her a belated Thanksgiving dinner when she's ready. No problem on my end since it's my favorite meal all year.

Her ANC (Absolute Neutrophil Count --- Say that 5 times fast) count is over 700 so that means the white blood cells are capable of fighting infection! Woot! Woot!

Hope you all got some great Black Friday Deals if that's your thing. And if that's not your thing, hope you enjoyed a post Thanksgiving restful day!

xoxo Loves ya!

Thanksgiving Updates

Happy Thanksgiving All!

It's Kristi again. First of all, we wanted to thank of you for your prayers, love, gifts, thoughts, texts, phone calls, emails.... We are so grateful to have such a wonderful support system during this time.

Mom is still following exactly as the doctors said she would. Her nausea is still pretty bad but the wonderful doctors and nurses are all taking great care of her. They are checking her bloodwork every day and look closely at everything. Her phosphorus levels are up and that means that her white blood cells are starting to rebuild!

She's also suffering mucositis which causes mouth and esophageal sores and that doesn't help with her appetite at all. She's trying to eat when she can and much to dad's dismay, has found that an iced Chai tea latte from the Starbucks in the lobby goes down nice and smoothe!

She decided to shave her head in preparation for losing her hair. Not everyone can pull off a buzzed head but in my opinion, she looks beautiful and BAD ASS! GI Jane has nothing on her!

Updates from Kristi

It's time to call in the troops!

It's Kristi reporting for Kathy.

Mom is hanging in there but is not feeling well at all...but, everything was predicted and she's moving along right on schedule.

She has absolutely no energy. None. Nada. Zilch. She can barely keep her eyes open. She also currently has no immune system. Her white blood cell count is .49 but that's where they want it to be. The doctors were predicting a rough weekend and they were right. 

Her nausea has been really bad. Her nurse this weekend is the Nurse of the Year which is awesome. She's been changing some meds to help with the nausea. They also have her on a saline drip to keep her hydrated. 

Starting on Monday, she'll be getting her neupogen shots. This will start to increase her white blood cells! She'll be on the upswing then, they say. 

Overall, she's doing the best she can. Kerri and I are calling and texting her every day and the grandkids are calling when they can. It's REALLY hard for Kerri and I to hear mom sounding so doped up. I mean, she's always been dopey but this is different. ;) Seriously though, it's something you never ever want to see or hear even when you know that it's for the best. 

Dad is also hanging in there. Not surprisingly, he has been an absolutely amazing support for mom throughout this whole ordeal. Every husband should take note. You couldn't find a better caregiver. He's been home twice now to check in with the house, give TomCat some Dad lovin' and to get some "good" sleep in their bed. I know it's hard for him to leave but mom makes him! 

So that's where we are. We all truly appreciate your thoughts, well wishes and prayers. 

xoxo Loves ya!

Side effects.

I have no energy the last two days.   Nausea has got to go.    They have me pretty well sedated with Adavan to help with the nausea.  Sleep I can do.  Today I am considered a fall risk because my blood pressure dropped under 100.  So have to get help to do snything out of the bed.  Doctors and nurses say I am on the way to where I need to be.   Hope I can soon get there.  Hate this groggy head, hate this tied to my bed.   Blood counts are all falling like they are supposed to.  Then I get Neuprogen shots to bring them back up again starting next week.   Then maybe energy.

Quote:

Maintain hope and faith!  

Amenities!

 November 13th
Not a lot of sleep last night because of feet and some nausea.  Chemo was over around 11:30 PM last night.  About 45 minute drip with two 15 minute fluid drips before and after.  Room hot then cold.  Bill and I set and talked from 4 AM till around 6:30 AM.  He went looking for breakfast.  I walked, had breakfast, showered, saw the PA and doctor.   Things look good for the transplant.  I then started to throw up after they all left.  Ugh.  Gave me Adavan.   And about an hour later, I throw up again.  Gave me more Adavan.   Makes me sleepy.  Been that way all day.  Bill said I was snoring  through the Pittsburgh Steelers game.

So my hospital has very nice amenities.  Large room with a bed for me and a double sleeper sofa for Bill.  Nice lounge chair.    Large screen tv with select free movies, HBO, internet, my health portal.  My own private shower and bathroom is very nice   Bill has to use those in the hall.  Want something to eat, just call room service.  Not waiting around for your food to arrive off the food cart. Haven't had much appetite to try a lot.  Closets are fairly nice size.  Could have brought more clothes 😜

Today is November 14th.  My day zero.  My day of putting my baby cells back in that I harvested.  Those 9.35 million.  Not sure how many I will be getting back of them yet.  Then I will be on the way to recovery.  A long recovery but well worth it with little goals to meet.  Goals to help me score against Multiple Myeloma.  I am not sure if I will be blogging tonight or not.  Remember, as Louise always says, no news is good news!  They started my 2 hour pre fluid drip. Next at 11, they bring my stem cells in.  Takes about an hour.  Then will be have another 2 hour fluid drip.  Busy, busy day.  And so many pills.  Even have patch behind my ear for nausea.  Got my Wish, Dream pants Kristi and l found at kohls.  Ready to get this started and over with.  Whoa, 5 people just was in my room.  PA, Davila, my nurse Leslie, two strangers.  Also, saw the physical therapist and case manager.
Now it's 3 PM and I slept through the last 4 hours.  Nurse gave me Benedryl and a few other meds for nausea.  Boom I am out.  Only wake up every 15 minutes to get vitals taken.  They put back
 3.6 million stem cells.  Took about 45 minutes.  Just waiting for my fluid drip to stop.  Bill and Nurse smell cream of corn.  I can't smell it.   Part of the transplant they say.  The way I like sauerkraut, should smell like that.   Still very sleeepy.

Let's pray for a peaceful night for all of us to sleep and not worry about Multiple Myeloma.


Quote:

The perfect day - going to bed with a dream and waking up with a purpose !

13 years and only 2!

Left the house around 9:15, got here at 11:30 only to find out my room wasn't ready until 1.  They told me by 12.  But anyway, all admitted as a patient.   Poked, prodded, signed papers, temperature taken several times, blood pressured several times, questions by the dozens.  So far everyone is great. Both my nurses today were named Michelle.  Now have Ann and Seanna.  PA was Jessica and doctor was Dr. Ayala.  I probably won't see Dr. Ocho, my transplant doctor. The transplant doctors take turns 2 weeks at a time to monitor patients.  This rotates, I think they said, every 4 weeks.

Dang feet are still killing me.  They seemed a little better at the beginning of the week too.  Nurse just came in with about 11 pills for me to take.  7 of those were steroids.  Yeah.  One for pain.  Yeah too.  Then she hooked me up to a bag of saline to get me ready for my chemo tonight.  Chemo is to start around 10 to 10:45 tonight and will drip for 45 minutes. Then I hope to sleep as I didn't get a lot of sleep last night.  Said side effects will show up in about 3 to 4 days.  Hair loss, 5 to 7.  Got my cute hats 🎩 with me and a few scarves.

Dr. Ayala was very upbeat about my transplant.  Said I was pretty healthy otherwise so feels it will go well. And he also mentioned the Multiple Myeloma that I have is the IGE, which is very rare.  Same as Dr. Ochoa had said.  Dr. Ayala said he had been here for 13 years and has only seen 2 other people that has had this type of Multiple Myeloma.  They did well with the transplant.  He also was amazed at the number of stem cells they collected from me.  Not sure how many they will put back yet.

Right now I am wrapped up in my prayer shawl Sandy sent me, covered up in my "autographed" quilt Nancy made me and my "World Kitchen" quilt made by Stephanie!   Bill is laying on his bed reading.  Would love to turn the lights out and say good night all.  Worse thing is the clock in this room has never been turned back.

Quote:

I have seen new sides of people who matter most to me in the world, wrap me in their love and lend me their strength when mine is running low!

See you smile again!

Waiting to get admitted to my room.  As several of you have asked, here is the address and room number of where I will be for a bit.

Moffitt Cancer Center
12902 USF Magnolia Dr
Tampa, FL 33612
Attn:  Kathy Snowberger
Room #3739

This morning as Bill and I was laying in bed talking at 6 AM about the weeks to come, he said to me "We got this babe.  In it together, you and I.  I just want to see you smile again!"

Quote:

None needed!!

Tomorrow.

If you are having trouble seeing Brace's letter from yesterday's post, please sign in first.  I can't see it either unless I am signed in to the blog.

Tomorrow starts my days of tomorrow's!!   I check in to the hospital around noon, have high dose chemotherapy, rest Sunday and my transplant on Monday.   Then on the road to recovery.  It will take some time but that time only brings me more time.  Time to appreciate my family.  Time to appreciate my friends.  Time to appreciate my and Bill's retirement.  Time to appreciate me!!

Quote:

Courage is being scared to death but saddling up anyway!

You can fight cancer!!!

Received this in the mail when I got home from Moffitt.  What a nice and caring letter from a special young man!!!

Thanks Brace!!!  xoxo

To remember you by!

First stop to Moffitt to flush my catheter at 8 AM.  Then on 75, I 4, and 417 to Casselberry.  Home.  Laundry to do and repack for a repeat of 30 days this time.  I check in on Saturday, the 12th.  Bill will stay for a bit then come home for a few days and back down again.

Thanks so much to Michelle and Gery for taking care of Tommy and watching after the house.  Tommy is all snuggled up beside me right now.  Sound asleep.  Probably didn't sleep much while we were gone.

Thank you Susan for making sure we had a clean house to come home to.  Sorry Tommy makes such a mess.  😽

Kristi, Sasha and Ellie stopped by tonight to check on me.  A little haggled looking but still hanging in there.  Juliana called to also check on me.  Girls were giggly tonight.  Makes me smile.  Funniest thing was Ellie asking me if she could take a small chalkboard home with them to "like" remember me by.  Made me have the giggles then.  If you haven't heard it before, I love and cherish my grandkids.

Quotes:

You're okay even if your skin doesn't fit the way it used to!

9.35 million!!!

November 7th - Got to the hospital around 7 on the 7th.  Labs were drawn first on the fourth floor.  Then down a floor for my catheter.  Steve, my nurse, came out to the waiting room to get me ard 8.    He got me in a hospital gown, put in my line for drugs, read and had me sign stuff, got me warm blankets then disappeared.  I finally asked if Bill could come back.  We waited another hour.  It was exactly 3 1/2 hours till they took me back to put in my catheter.  Was a little upset about this.  Put me out.  Then Bill wheeled me to get our car and back to hotel.  Rested 2 hours, then back to hospital for meetings, and shots of neurogen.  Done around 7 PM.  Then off to Urgent Care for Bill. He was bitten by something when we were sitting outside Sunday night.  Continued to swell.  3 nurses told him he needed to go to Urgent Care.  He listened.  Tetanus shot, steroid shot and script for antibiotics. The nurse practitioner told him that the steroid shot was going to feel like a horse kicked him in the butt.  He was in pain for over an hour.  Swelling down some.  Will start script tomorrow.  May have it looked at when we get home.

Today, November 8th - today was stem cell collection day.  Checked in to Moffitt at 8:15.  Taken to the apheresis room to prepare for a day of stem cell collection for my transplant.  Really was overwhelming and there comes the tears but mostly the fears.  Nurse talked with me awhile and ordered me an anxiety pill.  Did the trick. I slept most of the draw from 9 to 2:15.  The machine whirled away while I slept and Bill read.  Finally Carole, my caring nurse, came in and said that I was done for today.  They would call me within 4 to 5 hours to let me know how stem cells they got.  Here's the call I received "Can I speak to Kathy please? ". "This is Kathy".  "Kathy, this is Megan from BMT team.  You were to collect 4 million stem cell.  Well, you not only hit your goal, you more than doubled them with 9.35 million stem cells collected.  Congratulations!!"  Wow.  What a message.  What a calm over Bill and I.  What a great hug between us.  So we can go home tomorrow for a few days before my check in to Moffitt on the 12th.  So we can go home for a few days and see Tommy.  So we can go home for a few days before my 30 days in Tampa.  Just so we can go home.
Need to stop at Moffitt to flush my catheter and take off for home.

Quote:

I couldn't have made it this far without Bill!

4   3   2   and 1 to go!

Bill and I have been seeing this couple since our class last week.  Then they were in the doctors waiting room each time I had appointments.  Now they are in the BMT treatment room where I am getting my Neupogin shots.  Every time we would see each other, we would say hi.  So today I asked him when his transplant is scheduled. Two days after mine.  He has Multiple Myeloma too.  See you tomorrow Mary and Eddie.

Injections of Neupogen so far has only produced one minor side effect.  And that is some spasms in my back.  They come and they go.  So 3 down and 1 to finish off this part of the treatment.  Hopefully these 4 injections will help produce the 4 million stem cells I need to do the transplant.   I need 2 million personally and they like to collect extra, freeze them in case I need down the road.  As we know, Multiple Myeloma is treatable but not curable.  Also, it will come back some day.

Tomorrow is a long day for us.  We have to be at Moffitt by 7:45 AM.  Labs first.  Then down a floor at 9 o'clock to get my Central Line/ Apheresis Catheter.  This will be inserted in to a large vein in my upper chest. It provides access to a major vein for collection of srems cells, blood samples, to receive fluids, nutrition, chemotherpy and medicines.  This procedure takes about 1 1/2 hours with some recovery time.  This will remain in my chest till my treatment is complete so about 30 plus days.  After that, we have an appointment at 3 with a PA.  Then at 4:45, we have a training class for the care of the catheter. Very important not to get wet.  We will be wrapping me with Press and Seal.  I am serious.  After that at 5, my last Neupogin shot.  Then we are done till the next day.  Which by the way starts at 8:15.  I am going to have to let these people know, once I am admitted, that I am not a morning person.  Think they will listen?  

Quote:

Hey cancer, thank you for making me stop and listen and remember what is important.  You can go now !!!  

Wrath of Kath!

Had my first shot of Nuprogen last night at 5.  Had to stay there an hour longer to make sure there  were no reactions.  We were able to get sandwichs out of this special fridge they have. Full of bag lunches complete with chips and raisins, all kinds of drinks, jello and yogurt.  I got turkey and Bill got tuna.  However, someone took his chips and raisins.  Lol.  Came back to the room and ordered dinner around 8.  I feel asleep around 10:30 and woke up at 5:30 and back to sleep till 7.  Had some breakfast and slept again from 10:30 till 1.  Good deep sleeps.  Hope the night ones continue.  Will be leaving here around 4:30 to go to Moffitt for my second shot.  As most of you know, these shots are to help produce more stem cells.  More stem cells for my stem cell collection Tuesday the 8th. Hopefully, more stem cells so I don't have to go back on Wednesday the 9th for further collection.  

Just had my second shot.  There was no one in site in the hospital.  Usually it's packed.  I was surprised when I got my calendar that things were scheduled for the weekend.  Two more to go.  Monday they put my central line in my chest.  Sounds like fun.  Tuesday they take my stem cells.   Then be at home with no appointments for a few days.

All this getting me ready for the transplant.  All of this for the "Wrath of Kath" (thanks Michelle for the phrase) to beat this cancer.  Don't mess with the Wrath of Kath.

Quote:

Sometimes you get to choose your battles and sometimes they choose you!

5 out of 8

Last night was also as bad as the day.  Just no relief of my feet.  Up every hour on the hour.  Ugh.  Sent a text to Dr. Ochoa's nurse regarding the pain from the neuropathy.  She responded later today.  He wants me to take 3 pains, 3 times a say.  Upped the dosage.  So lets hope that works.

But to brighten the end of my day, I got a text from my grandson around 10:45  (#1)  -  Jakob!  "Hey you up?"  Me-"I am.  Can't sleep. What's up?"  Then the phone rang.  Just wanted to talk.  We talked about school, girlfriend and me and my disease; Multiple Myeloma.  Then I told him I told the doctor that I have to get better by the end of May because my grandson is graduating and I will not miss that!!  He said he knew I would be better by then.  Jakob then asked me if (# 2)  -  Kristopher could call.  Of course.  We talked about school and most of all, his year of football!!!  Told him I loved the football pictures. Can't wait to get one.  I also had been texting with (#3)  -  Juliana.  And as I blogged last night  (#4). -  Sasha and (#5)  -  Eliana were here for dinner.  This was a wonderful day for me to be able to see or talk or text with my grandchildren.  They are my world!!! They make me fight for remission of this stupid stuff called cancer!!!  They make me smile.  They love me!  They filled a space in my heart that I didn't know was empty.  They are all blessings sent from Heaven.

So what this all means, I had a conversation will all my grandchild except (#6). -  Chad,
(#7) -  Leah and (#8). -  Layton!  5 out of 8!!!!  Love you 3 too!!!

Quote:

Even when my grandchildren are not in my arms or in my home, they are in my heart and there they will stay forever!!

Double dose!

Today was not a great day.  Lots of tears.  Lots of why me?  Lots of I feel so alone in this journey except for Bill.  If I have to have cancer, then why do I have to have this neuropathy too?  Why can't I have a few days of I feel fairly good so I can get my stuff ready for the next 40 days or so?  Why can't I have some energy like I used to?  At least some of it.  Most of my day went this way.  Not so good.  Not such a wanna be me day!!  Not a "I feel good day".  Someday I will be able to say that.  Someday I will be able to feel that!  Someday!

Kristi and the girls came over tonight for some chili.  Coconut macaroons and cheesecake too.  Now they are something to stop the tears.  Thanks Kristi, Sasha and Ellie!!!  Much needed visitors.

Quote:

You're allowed to scream, you're allow to cry but never give up!

Off to UF Cancer Center!

Haven't been to the Cancer Center for a bit.  I prescriptions there that I needed to pick up.  Was nice just to pick up scripts and not have to go to the 4th or 2nd floor.

Trying to get my head wrapped around this week end of shots, catheter insertion and cell aspiration.  Then a few days of rest at home and admission to hospital just around the corner.  Will get it together once I have the first shot!!!

The nurse that held our class last week told us the day I get my transplant is considered day zero.  I will be reborn.  So will now I have two birthdays.  I will have to get all my childhood shots again. Oh joy!!!  And it will take at least a year for my immune system to be back with me.

Today was a horrible neuropathy day.  Has me totally worn out.
 

Quote:

No amount of of money, no amount of privilege can make you exempt if cancer chooses you!

Sock Monkey Take Two!

Really tired last night so didn't stay up long enough to blog.  Feet the same.  Hands too.  Just not going to give me a break.  Would have been nice to have these few days without my meds to have been almost a normal me before all this starts for the transplant.

Took mom home yesterday.  Was hard on us both knowing I probably won't see her for a bit.  Also, there isn't anyone around to take her for a few things at the grocery store, get her nails and hair done and have her spend the night with them except Kristi and she is so busy anymore.  Back to teaching which she loves.  Mom loves where she is but nice to get away a bit. Then we went to Kristi and Matt's for dinner.  That was hard too when I left because I won't be seeing Matt or the girls for a while either.  Emotional day for me yesterday.

Trick or treat night was spent at Michelle and Gery's.  Had a total of maybe 11 kids.  Michelle said it was a record!!!  I, of course, had to dress up even though it was a costume I wore before.  But never in Florida!  Got my bag of Halloween stuff out and found my sock monkey one.  Bill, Michelle, Gery and Karen were impressed but don't thing the 11 kids were.  We sat outside from 6 until about 8.  Weather was beautiful.  Weather has been beautiful but I haven't enjoyed it as much as I would like.  Usually sitting with my feet up trying to get some relief or laying down resting.  Next year this time, I will be able to enjoy this FL weather!!!  Next year time I will be able to go to the beach again!!!  Next year this time I will be able to do things for my grandkids, Bill, my mom, my daughters and best of all, ME!!!ME!!!ME!!!  This journey I am on should have settled down by next year this time as it may take up to 6 months to a year for my immune system to return to normal.  Infection is the most common complication after a stem cell transplant.  I will be on medication(s) to help prevent infection during this timeframe along with strict guidelines to also help prevent infections.

Quote:

You don't always have to hold yourself together!



 

I'll drink to that!

Slept good again last night.  Feet weren't real good again today.  I still think they are getting worse than better.  UGH!  Picked up Mom around 11:30 and dropped her off at Walmart.  She wanted to get her hair done, needed a pedicure and manicure and needed to do a little shopping.  We went to Public for a few things and went home.  Mom finally called to have us come get her at 4:30.  I was thinking that she got kidnapped.

This is my last weekend for awhile at my house.  My last weekend for awhile to have my mom here.  My last weekend for a while to see Matt, Kristi and the girls.  My last weekend for awhile to have Michelle and Gery over for a drink, and some fun conversation and laughter.  I decided to have a drink too.  I call them Michelle Sparkle.  Vodka, OJ and sparkling water.  Figured it will be a while!!!    Great time, filled with laughter!!  Awesome!!  To be continued in a few months!!!  To be continued!!

Quote:

I can't drop out of my life!

Caregivers!

Slept good from 11:30 till about 7 this morning.  Feet not good today.  Been painful all day.  Not so sure if the capzasin ointment didn't cause some of the burning.  But normal pain is there also.  Too much mall walking yesterday maybe?

Bill, of course, will continue to be my caregiver during my transplant process.  But in case he would get sick during this time, we needed to name a back up caregiver.  We talked about it and I decided that the best person for this would be my sister Deb Shaffer.  I had discussed this with her when she and my other sister, Cheri, were in FL.  Deb will be able to pick up and fly to Tampa at a moments notice. She and I talked last week again to be sure she still wanted to commit and she said no doubts from the time we first discussed it.  She will be ready if needed.  There was another offer from one of my BFFs too. Thanks for the kind offer.  It meant a lot.  I had pretty much decided on my sister by then especially with the holidays coming up.  Kristi will fill in until Deb can get here.  And none of this is going to happen because Bill is not going to get sick.

Caregivers are unpaid love ones who give persons with cancer both physical and emotional care.  They are the life line of the person with cancer.  They help make life as normal as possible for the cancer patient even though their lives (both the caregiver and the cancer patient) have be dealt with unexpected and unwanted lifestyle changes.  We as cancer patients, could not deal with all this without our caregivers.

Quote:

Every choice is the right choice when you make it!

Pick a happy place!

Had about 10 minutes of walking on my feet with no pain before I went to bed last night.  I was in heaven.  I did have a good nights sleep.  Feet didn't feel so bad this morning.  So Bill and I took my Mac and cell to the Apple Store today at the Altamonte Springs mall.   Nice mall.  2 stories.  We haven't seen a mall this busy in years.  And it's Thursday.  Was told it would be a 2 hour wait to see an Apple tech.  We decided to wait.  I needed to get my Mac fixed for awhile now and I want to take to Moffitt.  And my phone had a pop up about my Comcast account.  Fixed.  And no charge for either.  Worth the wait even though it took 3 hours!  But funny thing was that when we left, we couldn't remember the name of the store we wanted to remember so we knew where our car was.  Not funny!!!  Lol!!!  We knew it was near Sears and finally figured it out.  Chemo brain for me but Bill???
I did get a hat while I was waiting.  Would put a picture up but still can't do it.  Bill called me Yoko Ono!!  Getting prepared for when I lose my hair.  I will lose it about 2 weeks after the high dose chemo.  Bought some crochet hooks and some yarn to try to make some.  First one isn't looking so hot.  May fit Tommy.  My project is called Hats for Kath!!!

After reading my blog last night, one of my friends text me and I wanted to share her words with you because this will be something I will do.  It is something I will do because it will include each and everyone of you.  It is something I will do because I need my family and friends during this time and what a wonderful way of getting you all here with me, if only in my mind.  It started out saying she would be scared too.  This is real and is serious.  Then said - Pick a happy place and time in your life, close your eyes and go there.  Then look around that place in your mind.  We are all there surrounding you.  Encouraging you.  Never forget that place but rather go there often and feel the peace and love of your family and friends.  Thanks Jean for your wonderful, caring text!!!

Once again, I would like to thank each and everyone of you for your comments, your texts, phone calls, cards, surprise packages, cyber hugs and prayers, IMs, reading my blog and letting me know you are there if I need you.  Several of you have asked what my address will be when I am admitted to Moffitt for cards and or flowers.  I am not allowed any fresh or artificial flowers during my stay at Moffitt or once I am discharged as an outpatient to a hotel or Hope Lodge.  Cards I am sure I can get there but will check with my social worker and let you know.  This hospital stay will be a little hard for me as almost all my family and friends are too far away to visit.  But there was a reason for me to be in FL when this cancer was detected.  This rare Multiple Myeloma.  So, Louise, I guess I will have to make new friends at the hospital.  ;)

Quote:

Cancer hurts the hearts of those who fight from the sidelines!

You're special!

We left here this morning around 7 but had to turn around because I forgot my shoes.  Had my house shoes on. So left at 7:15 and got home around 6.  Stopped at Walmart Neighborhood Market.    Got to Tampa around 9:20.  First appt, 10 o'clock, was in the hospital section of Moffitt.  2 1/2 hour Transplant class.  Very informative.  But why do people ask such dumb questions?  Then we were able to see a room.  A room that will be my home for at least two weeks.  Great size. Has a sofa bed in for Bill.  He will go back and forth for those two weeks I am in the hospital.  Next appointment was at 1 to meet with social worker.  Then on to meet with Dr. Ochoa. First his nurse, Kelly, came in to see if we had any questions for her.  Nothing but can't wait till Dr. Ochoa tells me all reports are good and the transplant is a go.  She said she didn't see a problems.  Left for a bit and came back in.  This time she had news for us.  Not nice news.  Our insurance company would not authorize the go ahead for the transplant until I saw a pulmonary specialist.  There were some breathing tests that had some lower % and not in the ranges that they considered acceptable for a transplant to be done.  Oh, I had the remainder of this this week and two days next week to get an appointment and get info back to Moffitt so they could resubmit to insurance company and get an authorization number so as not to move the transplant out to a further date.  Blood pressure 1000/1000!!   Tears about to fall.  Bill and I said a few choice words.  Then we got on our phones to email Desiree from Cancer Center at home to see if she could help.  Before this could happen, Kelley came back in the room and said the financial guy just called her and said all was okay now.  Insurance reviewed again with some director and they approved.  Kelly kept apologizing.  15 minutes of pure agony.  Poor Bill.

Didn't finish this last night so this is all about yesterday.  So totally exhausting day yesterday was.

Dr. Ochoa finally came in.  All tests good.  Transplant a go.  Wasn't concerned the pulmonary tests that were lower would cause any problems with the transplant.  But was baffled about my IgE test.  These are antibodies that play a role in allergic reactions.  But is also a test for Myeloma.  My test results were 50,000 (could be more but that's how high the test goes). Normal is 217.  If this is the cause of my Multiple Myeloma, this is a very rare Myeloma.  He said, "If so, you're special!"  He and my oncologist are conversing over the next few days regarding this test.  Really won't know anything until after the transplant regarding the IgE test.  Will watch my numbers. Had at least an hour and a half visit with Dr. Ochoa.  Had to ask the question, what is the rate of patients who do not make it?  I had read the side effects of this high dose chemotherapy I will be having and that was one of them.  I know if just one person has reported a side effect of any meds, the drug company has to report it.  But I read this and it concerned me.  He explained that it's very rare but it does happen.  Love an honest doctor.

I am a very positive, strong  person regarding my cancer but no one knows how scared I am inside about what all is coming up.  No one knows what all I will be going through to get ready for the transplant.  Or the actual transplant and the weeks afterwards till I am able to go home.  Or the 4 to 6 month recovery time once I am home.  Or the one year for the recovery of my immune system to be normal again.  As I said, no one knows how SCARED I am!   Had to let it out.  Still SCARED  though!!

Here is my schedule for transplant.

Nov 4, 5, 6, 7 - shots of Neprogen to help grow mores cells
Nov 7 - lab work and placement of catheter in chest
Nov 8 - stem cell collectIon called apheresis - can take from 5 to 8 hours
             goes in the apheresis machine using the catheter then into bags to be used for transplant later
             If not enough cells collect, will collect more on the 9th
Nov 12 - admission to hospital
                high dose chemotherapy
Nov 13 - rest
Nov 14 - transplant

Then recovery!!

Quote:

What lies behind us and what lies before us are tiny matters compared to what lies within us!

Dr. Ochoa!

Tomorrow we get the no go or the go go on the transplant!   Let's pray for the go go! Have to be in Tampa by 10 for our first appointment. Another appointment at 1.   Appointment with Dr. Ochoa is at 1:40.  This appointment is one we have been waiting on.   This appointment will make my happy ending a reality or break my happy ending in two.  I pray reality!   I pray rid me of this cancer called Multiple Myeloma!

Multiple Myeloma is a cancer of the plasma cells.  Plasma cells are part of the immune system. There are several types of normal plasma cells that make antibodies to protect us from infections.  In multiple myeloma, a specific type of plasma cell became cancerous and grow quickly. This limits the body's ability to make normal blood cells.  These cancerous plasma cells fail to fight infection properly.  More than 22,000 people in this US are diagnosed with MM each year.  Causes of this rare
disease is mostly unknown.

Quote:

Don't lose hope, faith or courage!

Stay tough!

A little trouble getting to sleep last night.  Feet, of course.  Did sleep till 9 then.

Was going to bring mom over for an overnight visit today but mom called and said she may be getting a cold.  We canceled the visit.  To close to my transplant to get sick.  To close to my transplant that is going to help me beat my cancer to get sick.  To close!

Had a bit of trouble getting motived this morning.  Just the usual Myeloma fatigue.  Bill actually helped as he passed through by saying, "Stay tough Babe!"  I said that throughout the day to keep me motivated.  I said that throughout the day to remind me it's getting closer Day Zero-transplant day.

Quote:

You never know how strong you are until being strong is the only choice you have!

Thanksgiving Day in October!

Few pain pills and I was able to sleep all night.  Neuropathy just wouldn't quit so I had to quit it.  This morning some pain but nothing like yesterday.  Pretty much that way all day.  I will take it.  Tonight there is more pain but will deal with it later.

Tonight I am full of turkey, filling, mashed potatoes, sweet potatoes, gravy, baked carrots, pumpkin pie, oh my!  Thanks to Michelle and Gery for hosting a Thanksgiving dinner for Bill and I since I will be in the hospital then.  What great, caring friends we moved across the street from.

Quote:

Caring about the happiness of others, we find our own!

Neuropathy crappy day!

Slept most of the night last night. But feet had me up once and then since 5:30.  Been painful all day.  Went out a bit thinking maybe walking may help.  Not so.  Nothing seems to help today.  Tylenol, nothing!  Lots of tears this morning.  So done with this.  Not dealing so well most of the day.   Smile on the outside, tears on the inside.  Crappy, crappy feeling sorry for myself day.  But I am entitled to one every once in awhile.  This day is one of them.  This day is crap!!!

Quote:

Being blunt is just my coping mechanism!

Relax!

Great night of sleep last night.  Exhausting three days will do that to you.  Today I did nothing but relax. No meds for about two weeks except Gabapentine for the neuropathy.  Would feel fairly good if not for that.  Still get fatigued.   But that comes with the myeloma.

Having a little trouble sitting.  That's because they did the bone marrow biopsy in my hip bone but went into it from the middle of my butt cheek.  TMI! TMI!   My way of remembering is my blog.  Anyway, it's hard to sit.

Want to thank you all again for the cards.   So thoughtful and mean a lot to me.  And thanks for the one sent to Bill as a caregiver.  That was very special.  Also, again, thanks for the texts, emails, IM's.  All of these are greatly appreciated.  Most of all, thanks for the prayers and the positive energy sent our way.  The next few weeks are going to be very trying for us so keep on sending those prayers.

Quote:

Sometimes life hits you in the head with a brick but don't lose faith!

Tampa day 2 & 3!

As you all know I did not blog yesterday.  Could that be I was all doped up because of the Pet Scan?   First person we met with yesterday (Tuesday) was Dr. Booth-Jones, phycologist.  Her assistant asked a bunch of questions of me and Bill.  Then sent Bill out of the room and did some tests with me.  Tests like word memory, sentence memory, drawing, connect the numbers  Yes, you read that right, connect the next numbers.   First time just connect 1 - 25.  Make sure you actually touch the number.  Then flip over.  The numbers are yellow and pink. So 1 number 1 in yellow and 1 number 1 in pink all the way through to 25.   Starting at the yellow number 1 connect it to the pink number 2, to the yellow number 3, to the pink number 4.  All the way to 25.  Yellow, pink, yellow, pink!   Called Bill back in and she went to discuss me with the Doctor.  Both came back, we chatted a bit.  Ask how I felt about the transplant and told her the truth - I am scared!   She related with that.  All in all I am normal (glad some of you can't make comments on that one).  Next to talk with a social worker.  Basic same questions.  Gave some tips on hotels in the area they have contracts with if needed.  Gave us info on what to expect over the first few days forward.  Will be seeing her a lot more. Next was Kelley, transplant coordinator nurse specialist.  Went over consent forms, then gave me a calendar of the start to the end of the transplant.  Will share those dates later.  After Kelley, we waited an hour and a half to see a PA.  I was getting anxious because I that appt for the pet scan at 3. My blood pressure was up when they took it.  Finally PA saw us. Reviewed tests so far. All looked good.  I was concerned about the pulmonary tests because I had some red marks on the test.  She said not to worry.  Nothing to stop the transplant.  Then the dreaded Pet Scan.  Checked in and girl said it was a 2 1/2 hrs test.  I asked if Bill were allowed.  No. First they put radiation in you via a line in you arm that stays there till done. Then you sit for 90 mins till gets through body.  Then the pet scan.  Don't remember a lot of it.  Just remember her telling me to put my hands above my head.  Put a wash cloth over my eyes.   And it was over.  Really don't remember much else from there on out.  Bill said I navigated him back to the hotel.  Took me to the room around 7:30 and I was gone the rest of the night till about 3:30 this morning.  Got up finally around 6.  Packed, checked out and back to Moffitt for final test, bone marrow biopsy by 8 AM.   Really hungry.  Hadn't eaten since 10 AM Tuesday morning.  Bill did get me food last night but couldn't wake me up to eat.and couldn't eat after midnight last night because of the biopsy.   Prepped for biopsy.  Put to sleep.  Woke up asking for the little man.  This was the last person I saw before I went to sleep.  You know the little man who put stuff up my noise (breathing tube) and used the fat needle to put stuff in my IV to make me sleep.  Nurse just laugh.  Brought Bill back, got dressed and Bill pushed me out in a wheel chair.  Nurse told me that they all are going to call that guy, the little man now.  😂   A lot of information, a lot of things to prepare yet but we are moving on the tracks to eventually my happy place again.  

Made it home safely.  Both exhausted.  Gery and Michele came over for about 20 minutes to say hi and welcome home.  They took care of Tommy and the pool for us.  Thanks and thanks for the Welcome Home sign!!!  Great neighbors!  

Quote:

Zero in on your target and go for it!

Tampa day 1!

Feet had me up some last night walking.  Don't know when that will end.  But pray soon!

Got up at 4:45 this morning and was on the road by 6.  Took us a little over 2 hours to get to Moffitt. First appointment was labs.  17 tubes of blood.  Then had to stick me again because she forgot to draw one.  18 total so far.   So used to having blood drawn that it doesn't really hurt when they stick me.  Then on to my pulmonary test.  She explained that she had to draw one tube of blood.  This was not done previously with the other draws because this blood has to come from an artery not a vein. Previous draws are from the veins.  Oh, okay.  Had to measure oxygen , that's why.  Okay.  Now let me tell you, that was very unpleasant.  Hurt!!!   She took it from an artery in my wrist.  Then did the blow in the tube tests.  On to have an EKG.  Done.  On the elevator to another floor.  Chest X-ray.  Done.  It was freezing in every place we went.  Had an hour to kill before my 1 PM ECHO cardiogram.  Had some lunch and sat outside to warm up.  ECHO done and we were done day 1.  Tomorrow starts at 8:00 AM and goes till 3.  That's the Pet Scan day.  I have my drugs to get through that one.  All these tests will determine if the transplant happens.  I hope and pray I pass.

Quote:

Sometimes you have to go through things and not around them!

No meds feeling.

My sleep pattern last night was a little better.  Feet pain woke me up two times.  Did the walk and back to bed.  Tonight I am trying different stuff on them.  One of my old time favorites.  Vicks!!!  Yep, that's right.  Vicks.   Thanks Kristi for reminding me.

Been doing a collection since 6 this morning for my pretesting.   Lots of fun.  That's all I will say about that.  Will be on the road to Tampa around 6 AM.  Tomorrow I will have EKGs, X-rays, pulmonary test, ECHO cardio gram all after they take 20 tubes of blood.  Anyone know how much that equals in cups, pints???  Just curious.

Another almost 2 hour phone call today.  Louise called.  We email and text but haven't called each other for a while.  Lots of things to catch up on.  Lots of laughs.  Made my day brighter and her encouraging words as a breast cancer survivor, will help me get through this transplant.  Love you Louise.

I am off, as you know, off all meds except Gabapentine. What a wonderful feeling.  If it wouldn't be for this neuropathy, I would be out running around.  My new me is screaming, let me out.  Soon. Soon.

Quote:

My prespective has changed!!

Happy end of first step to you!

Last night was horrible.  Worse pain every in my feet.  Walking didn't even help. So, needless to say, didn't get a lot of sleep.  Maybe walked too much yesterday.  Maybe sandals I had on caused it.  Maybe neuropathy is getting worse.  Maybe neuropathy is getting better.  Don't know.  Hoping tonight isn't a repeat.   Enough!

Great dinner at Kristi and Matt's tonight.  Matt made eggplant rollatini.  Loved it.  After we were done eating and the girls had clear the table, they turned the lights out and walked into the dining room with a cake with a few candles on it.  I thought it was for Matt's birthday and started signing happy birthday.  Then I hear Kristi and the girls singing, happy end of first steps for you, happy end of first steps for you, I realized it was for me.  Celebrating the end of my treatment plan of drugs, shots, labs, drips and moving on to the transplant.  So special.  So caring.

So tomorrow I start some of my pretest stuff at home.  Then Monday we head to Tampa very early in the AM for various tests and appointments.  2 hour trip one way.  Glad Bill likes to drive.

Quote:

Life is a song-sing it.
Life is a game-play it.
Life is a challenge-meet it.
Life is a dream-realize it.
Life is love-enjoy it.

Key West and Baltimore!

Happy to say I slept from about 10 last night till around 7 this morning.  Only up twice.  I took my first Gabapentine and a Simply Sleep.  Must have helped.  Doing the same tonight.

Yea, I didn't have to take my steroids and chemo pills.  Did I tell you, I didn't have to take my steroids and chemo pills?  Had a great breakfast, Bill took a bike ride, I got my coupons ready, then off to Publix and CVS.  Love my coupon shopping.  CVS - 2 Scott toilet paper (18 rolls in each), 1 Scott paper towels (6 rolls), 3 boxes of Kleenx, 2 bottles of Colgate mouth wash all for $15 and got $10 CVS bucks back.  Yes, my feet hurt, burned and tingled but it's was a pill free morning and that shopping put me in a happy place.  Made me think of Nancy, me and CVS.   Feet are still burning and hurting.  Still was worth it I think.  We'll see how tonight goes.

Almost a 2 hour phone call with my friend Joanie tonight.  Not sure how she handles it as she works and is a caregiver to Harry.  We talked about me and what I have coming up!  She heard when I told her I was scared.  She understood my neuropathy.  She understood the excitement in my voice about not taking meds for a bit.  We talked about Harry.  I heard the excitement in her voice when she told me that Harry had a good week this week.  I heard the disappointment in her voice when she told me they had to cancel their appointment at John Hopkins today and now can't get in till November 4th.  We listened, laughed and encouraged each other.  But I forgot to ask Joanie if she still bakes like she used to.  Told her Bill said today that once I am better, he and I are going to take a trip to Key West.  Joanie said that she and Harry have said they are going to go to Baltimore once he is feeling better.  Not to John Hopkins for appointments but to explore the city.  And we sort of planned a get together to see each other too.  Her and Bill can share caregiver stories and Harry and I can discuss all our meds we have taken!!  Praying for you Harry and Joanie!

Quote:

Recognize achievements and reward yourself!

See you in a few!

Today was my last appointment with my oncologist Dr. Sarriera.  Today was a day of great news.  My labs all came back pretty good.  Two most important ones that check for Myeloma that Dr. Sarriera watch for are protein and light chains.

Protein level was 5.9, normal is 6.3-7.9.
If results show an abnormal level of protein in blood, then Multiple Myeloma or other autoimmune diseases may be indicated.

Kappa Free Light chains - Mine was 0.7990, normal is 0.3300-1.94
Lambda Free Light chains - Mine was 5.31, normal is 0.5700-2.63  My number seems high but waaayy lower than when first diagnosed.  So he was happy.
Kappa/Lambda ratio - Mine was 0.1467, normal is 0.2600-1.65
These light chains determine an increase or decrease in plasma cell production due to Multiple Myeloma disorders.

He was smiling the whole time he was talking to us.  We talked about the neuropathy and he told me to take the Gabapentine.  He praised me on how far I have come and how well I have done with the treatment plan.  We discussed the upcoming transplant.  Feels I will do well with it.  Yes, there will be side effects throughout, not so nice days!  Told him I was scared through some tears.  Again, very sympathetic and caring.  Told of a patient of his that had their transplant 20 years ago.

We discussed a possible maintenance plan after the transplant.   Usually use Revlimid but that one broke me out in hives.  Velcade gives me neuropathy.  May do a very low dose Revlimid.  But it sounds like that is months after the transplant.  Won't be on any chemo meds for a bit.  All depending on how it goes.

But BEST of all, I do not have to take my 17 pills tomorrow or any Friday from here on out.  No 10 steroids and 7 cyclophosphamide (chemo pills)!!!   Just my vitamins.  No low dose aspirin either.  Done, finished.

Bill is a big part of my treatment plan too.  Could not handle this without him.   Reading labels, making sure I have fruit every morning, making fresh ginger tea, broccoli and egg omelettes, making sure I drink enough water each day, letting me cry loudly in the shower just to name a few.  Next we head into the transplant together.  Bill my caregiver and me the patient.  Another adventure to tackle.

Quote:

Whenever you find yourself doubting how far you can go, remember how far you have come!

Got some sleep!

Was able to sleep a lot last night.  Was up maybe 3 times walking but went back to sleep.  Actually didn't get out of bed till after 8.  Still dealing with the hands and feet.  Sometimes it seems they are worse then better.  😒

See Dr. Sarriera tomorrow.  Where it all began.   Then he releases me to Dr. Ochoa my transplant doctor.  Hopefully, where all this will, in a few months, bring me and Bill to a new beginning.  Remission is what I am looking for.  Remission is what I want.  Remission is what I need.  Remission is what I am praying for and asking you to also!

Quote:

A cancer diagnosis changes your life forever.  You always remember the moment it came!

Phone calls.

Slept a little better last night. Up walking some with hands clapping.  The pain right now is very annoying.

Calm, quiet day.  Went for a manicure and pedicure.  No polish though.  Getting ready for testings.

Read over all the info we have received from Moffitt.  Questions, questions and more questions.  Wrote them all down and made about 5 different phone calls seeking answers.  Two have called us back so far.  Lots of info to comprehend.

Quote:

Be present in your own life!

Zometa drip

Another night of not sleeping much.   Walking helps the neuropathy. Wish I could at least sleep walk to get some rest.  

Today was my last day at the Cancer Center for treatments until after the transplant.  Had my Zometa drip. Zometa is a support medicine for the bones.  I go back on Thursday to see Dr. Sarriera one final time before my transplant.  My transplant doctor will be keeping him in the loop though throughout my transplant.

Got to meet two celebrities today.  Dog the bounty hunter and his wife Beth.  Thanks Michelle.

Went to our support group meeting this evening.  Great speaker.  Then everyone tells their story.  After I told mine, the leader of the group ask everyone to give me some words of encouragement for my transplant.  Very touching.

Quote:

You are braver than you think.

Better days to come?

Didnt get to sleep until after 2:30 this morning.  Then not a restful sleep. Walked the floors again.  Hands and both feet pain just won't quit.  Today was not a good day at all.  No energy, no appetite, hand and foot pain, weepy, so tired.  One day up, one day down.  Such a roller coaster of feelings.
My sisters and brother-in- law sent me a dammit doll.  Well, she is going to be banged up soon.

Sandy and Denny came over for pizza and to print out boarding passes.  They are flying back to PA tomorrow.  Think they are ready.  Was a nice visit.

Now Bill and I have to get our minds set for the transplant pretesting, Dr. Ochoa visit and the actual transplant.  A lot of emotions flowing here.  A lot of scary feelings.  A lot of worries.

Quote:

It's often in the darkest skies we see the brightest stars.

Gotcha dinner!

10:30 last night till 6:30, up once, is how long I slept.  Wow.  No foot or hand pain waking me up.  I am sure the 10 steroids helped.  Once up - steroid high.  Ran vacuum through whole house, did some laundry, swept front porch of Matthew debris, cleaned kitchen all before 10 in my nightgown.  Then showered and did a bit of shopping with Kristi.  Nap for several hours.  Bill had to wake me up to get ready for dinner.  Today was 11 years ago Kristi and Matt got custody of Sasha.  Went to Hotto Potto for dinner to celebrate.  And also, Denny wanted to try there.  He loved it so you know it must be good.  Owner knows Kristi and girls quite well because they love it too and go quite often.  She even had special desserts served to us to celebrate Sasha's gottcha day.

Have some questions about my dates for the next couple of weeks getting ready for my transplant.  Here we go!  A lot here but remember, this is my memory board for years to come. I will be doing an autologous transplant as I am my own donor.

October 16 - Some prep at home
October 17 - Head to Moffitt Cancers Center
                     First appointment at 9 AM - 20 tubes of blood will be drawn.  OM
                          Measures blood counts, kidney & liver function, past exposure to diseases
                     10 AM - Pulmonary Function test - measures lung function
                     10:45 - EKG - measures heart function
                     11:15 - Chest x-ray - checks for abnormalities or infections in lungs
                      1:00 - ECHO cardiogram - test pattern of heartbeats
  Day complete

October 18 - 8:00 AM - Appointment with Dr. Booth-Jones - Phychologist
                     11:00 AM - Meet with Teresa - social worker
                      1:00 - Meet with Kelley - Transplant Nurse Specialist
                       2:00 - Meet with PA - physical examination- assist doctor with medical care before,  
                                 during and after transplant
                       3:00 - PET scan (taking lots of  anxiety pills for this one)
Day complete

October 19 -  8:45 AM - Arrive at pre-op area
                       9:45 AM. - Bone marrow biopsy
Day complete. Hope to head home!

October 25 - 10:00 AM - Transplant class (1 1/2 hours)
                      1:00 PM - Meet with Teresa - Advance Care Planning
                      1:40 PM - Appointment with Dr. Ochoa - Primary Transplant Doctor
                                        Will discuss all test results.  Finalize the plan for transplant
                                        Sign forms to continue.
Day complete.  Head home!

Central line/Apheresis Catheter placement  - thin, flexible tube placed in a large vein in my chest. Used to collect stem cells, blood samples, fluids, chemotherapy, medicines.  Double-lumen catheter is used for autologous transplant patients.  Not sure of date for this yet.

November 4 - 7 - Stem cell mobilization- to stimulate bone marrow to produce more stem cells for collection.  Will be given several dozens of Filgrastim (aka - Nuepogen).  Shot for four days.  Can be more if not enough stem cells collected.

Stem cell collection - usually occurs around 4 days after the start of mobilization   Blood tests will be preformed to determine if cell count is high enough for collection.   If high enough, will be cleared for apheresis (stem cell collection).  Catheter is attached to apheresis machine. Machine uses filters to remove stem cells from blood using the catheter.  Takes about 8 to 10 hours while lying in bed.  If number of cells collected is too low, need to repeat another day.  Sten cells are frozen upon collection till ready to infuse back to me.

Not sure of some of these dates yet.  Will know more once we meet with Dr. Ochao regarding the test results.  But here are the next steps.

Conditioning therapy - received prior to transplant.  I will receive high dosage of chemotherapy

Stem cell transplant - Day Zero. - will receive stem cells 24-48 hours after conditioning therapy.  Cells are thawed and infused through my central line catheter similar to a blood transfusion.  Length of time depends on how many bags my cells are stored in and volume collected.  Nurse monitors closely. May slow down to treat any possible reactions should they occur.

Engraftment- production of new blood cells from transplant.  Usually takes place two to four weeks after transplant.  Beginning of my recovery of my immune system.  Complete recovery can take months in an autologous transplant.  I will be most at risk for complications waiting for engraftment. Will be watched by transplant team during this critical period to prevent and treat any life threatening complications such as infection.

As of now, we have been told I will be in the hospital about 30 days.  I may be considered for early discharge but have to be within 1 hour of Moffitt Cancer Center.  We are hoping to get into Hope House near Moffitt.

Bill will be my primary caregiver throughout this process.   Needed 24 hours a day throughout the transplant. He will be my communicator, transporter, medicine giver, supporter, coach and most of all, the love of my life. The main reason I am chasing my life and not giving up.

A lot of information here I know. Don't know if you made it to the bottom of this or not. But again, this is for me to remember what I have gone through to get to my happy life again.  And maybe someday, someone with Multiple Myeloma may read this blog and it may help them along the way.

Quote:

I am not going to waste a second chance!  

Fever on the Bayou!

10 steroids and 7 cyclophosphamide (chemo) pills this morning.  My Friday dose.  Next Friday will be the last time I take these 17 pills.  And after Monday's Zometa drip and next Friday's pills, I will be finished with my cycles that Dr. Sarriera felt necessary for me to be able to go forward with the stem cell transplant.  Pretesting start on 17th at Moffitt Cancer Center in Tampa.  I will cover all this separately in another post soon.  So are my steroids going to help me sleep tonight or keep me up?   That remains to be seen.  If the feet and hands have anything to do with it and the steroids make me super tired, I may be sleep walking!

Matthew never made it with the fury they said he would to our area. We are so glad.  I was up walking several times last night.  Would look out window and nothing.  All we have are limbs, leaves and a full pool.  Bill drained several times.  He and Denny skimmed piles of debri off pool.  Best part of Matthew was that Sandy and Denny's flight was cancelled and they came over to spend the night with us instead of staying in their condo.  I pictured Sandy and I sitting close together on the couch listening to howling winds, pounding rains and trying not to holler once Matthew hit us.  Sandy with her glass of wine and me with my jug of water.    Only noise was a frog that croaked all night.  Bill made us a great breakfast this morning.  Bill found a puzzle for Denny (now back in the box).  Sandy and I were pj lazy for a long time.  Tramped over to Michelle and Gery's for a bit.  Then did something we haven't done for awhile.  Played Spades.  Fun.  Of course, Sandy and I beat Bill and Denny.  Usually play several hands but we had something interrupt called me and neuropathy.  What a wonderful time with special, special friends.   They decided to go back to their condo tonight as the curfew was lifted for Casselberry.   No demand there either.  Funny though as I do not hear that noisy frog.  Wonder if Sandy took it along.

I do know the steriods can make me weepy.  We all know Bill loves his music.  One of his songs that we would sing loudly to is "Fever on the Bayou" sang by Rodney Crowell.  Check it out Bob Curwood!  It is our happy Florida song.  Our make us smile song.  Our sing together song.  Our so glad we retired song since we moved to Florida even though the words have nothing to do with retirement.   Our song!!!   Well, it came on today and even though we sang it, it wasn't with the happiness that makes me smile.  It made me want to cry.  We will sing this again in the future with that happiness but right now will just sing it.

Quote:

If it wasn't for cancer, I'd say I had the perfect life but if it wasn't for cancer, would I realize it?

Matthew!

Sitting here with Sandy, Denny and Bill listening to pouring rain.  Waiting for Matthew to visit. Sandy and Denny will stay with us instead of their condo.  Hurricane party.  Wish I could drink with them.   We prepared as much as we could.  Patio is completely cleared off and stuffed in garage.  Thanks to our neighbor Gery for helping Bill.  We had a lot of stuff out there.  Will be making some changes when we are able to move it back.  Don't know where Matthew is right now or when he is
coming to Casselberry.  

My appointment for the Zometa drip was canceled for tomorrow.  Matthew's fault.  Had meds to pick up then so we had to go today to get them.  Cancer Center closed from 3 today until sometime late Friday early Saturday.   Matthew's fault.

Same pattern of walking the floors for my feet and exercising my hands last night again.  From our bedroom, around the dining room table, through the living room, through the kitchen and again.  Moffitt can't come soon enough for us.  And this is not Matthew's fault.  😚

Quote:

Fair went out the window 3 months ago.

A better me!

Someday I am hoping to scream that.   This cancer has made me change.  Sometimes to a person that I don't like.  Sometimes to a person I don't know.  Sometimes to a person that is still me.  Glad I have an understanding husband, understanding family and understanding friends. Someday I will be me again.  Someday this ugly thing called cancer will be removed from me.  Someday.

Last night was the same.  Up and down.  Walking.  Sleeping on the couch.  The way my night is starting tonight, will be more of the same.  Someday this too will be a memory.

Passed the dental clearance today.  One step checked off towards the transplant.

Quote:

I need to start living life differently!

Dental clearance!

11 PM to bed last night.  Was up maybe twice walking my beaten path.  Then back to sleep.  Just keep praying this neuropathy soon at least eases up some.  Please!

Starting to prepare for my 3 days of pretesting that begins October 17 at Moffitt in Tampa (start some things at home on the 16th).  Who knew that I would have to have a dental clearance?  Have to have a letter from my dentist saying my mouth and gums are free from signs and symptons of infection.  Interesting, huh?   Have that appointment tomorrow.

Sandy and Denny had us over for dinner.  Good meal.  They are really concerned about the possibility of hurricane Matthew messing up their flight home.  Just have to wait and see.  The hype reminds me of PA and the hype of snow storms.  Here there is always a shortage of water in the stores. In PA, it was a shortage of toilet paper.

Quote:

Stay organized.  Break down tasks in to smaller steps!

Jury duty!

Hands were really bothersome last night.  Had me up walking the floors during arm and hand exercises.  Not much help.  Got a lot more sleep then have been getting though.  Each day as these meds kick in, I know my body is getting weaker, more fatigued, less energy.  All this to get me ready for a transplant.  

This morning I told Kristi that I was angry because I can't be the grandmother I want to be right now, the mother I want to be right now, the wife I want to be right now, the daughter, sister, friend I want to be right now.   Her response was -"Good!  You should be angry.  It's not fair but you're doing your best and 6 months from now it will all be good."  

I am angry because cancer choose me.  I am angry because cancer still exists.  I am angry because I didn't take better care of myself.  I am angry because I am putting my family in this predicament.  I am angry because cancer interrupted the smoothness of my life.  I am angry because I am irritable, moody, weepy and sometimes cause pain for the people I love the most.  I am angry because of the waiting.   I am angry because I feel guilty for feeling angry.  Anger is part of the ride.  Anger is a part of the cancer experience and you need to feel it sometimes.  And as Kerri said to me a little while ago, use your anger Mom to fight back.  

And one more, I am angry because I was chosen for jury duty on November 14th and can't serve.  😉

Quote:

Anger is a signal - one worth listening too!  

Another decent night's sleep.

Slept good again last night.  Only had a 1 1/2 hour around 2 that I was awake.  Slept then till around 8.  Feet and hands still burning, tingling and painful but getting more tolerable.  Keep praying the neuropathy is healing.  Used the Wise Men cream several times.  Jury is still out.

Had a small cookout for Sandy and Denny with Kristi, Matt, girls, mom, Michelle and Gery.  Was nice despite the rain.  Hard, pouring rain.  Drain the pool type rain.

Quote:

Cancer cannot cripple love, shatter hope, kill friendships!