Pink and black.

Just needed to fill in what's been going on the last few days.  Had my happy news and now some down times.

Had my treatments last Tuesday and Wednesday.  Cycle 5, week 1.  Felt good enough on Thursday to go out and do some last minute shopping.  Hobby Lobby, Target and Neighborhood Market (Wal Mart that only sells food).  Friday had my usual tired day but only felt more fatigued.  Saturday much the same.  No energy.  Sunday, Christmas Eve, I felt a bit better.  Was able to go to Kristi and Matt's first annual Christmas Open House.  Just felt tired.  Did lay down a bit there.  Brought the girls home with us.  Christmas Day - no energy.  Had to push myself to get out of bed.  Nauseated, skitters.  Thank goodness Kristi and Bill could keep the day rolling.  Nice meal.  Bill smoked a brisket for about 16 hours.  Kristi and Matt brought over some Mac and cheese and veggie tray.  Gery and Michelle bought delicious lasagna made by Gery.  Marilyn and Andy brought the desserts.  Everyone enjoyed.  I, not so much.  No appetite.

Yesterday, Tuesday 26th,  was start of week 2 of cycle 5.  I explained my systems to my nurse, Miles.   Sinus pressure, no appetite, waking up drenched from head to waist, skitters, no energy,  He contacted Dr. Sarriera's office.  Put me on an antibiotic. Testing needed for cdiff.  Gave me some fluids along with my treatment.  Bilirubin cooperated this time.

Today, Wednesday, 27th,  I just didn't feel right.  No energy, no appetite.  Woke up again drenched from head to waist around 4 AM.  Sheets wet too.  So just laid on some towels and wrapped the quilt and top sheet in towels, changed night clothes and went back to sleep.  Woke up around 8 drenched again.  Changed clothes.  Bill pulled the sheets and quilt and started the laundry.

Got to the Cancer Center around 12.  Was in tears by then. Also, the first time ever since I been going here, had to take a wheel chair.  Lightheaded.  Couldn't stop the tears.  The receptionist saw that I was upset, who couldn't.  Contacted my nurse and was sent to one of the private rooms within about 15 minutes waiting.  And was so happy to see I had Patrice, my favorite oncology nurse on the 5th floor.
She listen to my systems as the tears fell.  She contacted Dr. Sarriera's office.  He and Abby are out until the 6th of January.  BUT Desiree is back.  Thanks Desiree.  Gave me fluids again along with my treatment.  Explained that because of my condition, something compromised my immune system.  That's why the cdiff test.  This came back negative.  Which is great.  Not calling this a stomach bug or the flu.  Just my immune system, sinus infections and a bit of dehydration.   If I spike a fever, I am to call the Cancer Center team immediately.  The chemo is killing off good cells with bad cells.  Thus, red, white and platelets low counts.  Patrice also explained that my good colon bacteria fighters are also being destroyed by my chemo treatment.  Thus, infection easier to grow there.  She stayed with me off and on throughout my visit making sure I was comfortable and was able to calm myself down.  Love my Patrice.

Chemo drip and fluid drip done.  Port removed and left in the wheel chair to the car.  There will be no more wheel chair episodes.   Wanted to stop to see Desiree but I was afraid since I was so emotional today and she just getting back yesterday, we would flood the office with tears.

Bill headed to the grocery store after we got home for Power Ade and Bob Evans mashed potatoes. My great caregiver.  Just couldn't handle all this without him.   I made some chicken noodle soup for us from scratch till he got home.  Laid down then but steroids kept me awake. Just like they are keeping me awake now.  Had some Bob Evans mashed potatoes for dinner.  Tasted pretty good.

So that's been my last few days.  Again, sorry if if missed saying Merry Christmas to anyone.  And thank you for all the beautiful cards.  I am hoping to be on the mend with this sickness soon.  Not liking it.  

Patrice was covered in her yellow insulation coat because she had to put in my port.  And we didn't know about the cdiff test yet.  They are so caution they don't bring germs from one patient to the another whatever it may be.  And these coats protect them.  Well, her coat wasn't tied tightly in the back and I notice she had on pink and black.  Pink top and black pants. Same as me.  We laughed a bit and she told me that she has a routine of what color to wear each day of the week.  Had off Monday and so had been mixed up all week.  Not her normal color to wear on Wednesday.

Quote:

You will never regret being kind.

"Merry" back in my Christmas.

REMISSION.  REMISSION.  Yes, I finally heard the word I have been waiting for the last 1 1/2 years to hear.  Today was my appointment with Dr. Sarriera.  We discussed my pet scan and how all looked great.  No active Myeloma to be seen.   Then discussed the Myeloma blood results.  Low red blood count, low white blood count and low platelets all due to the chemo treatments.  My vitamin D has increased from 19.1 to 26.  Looking good.  Needs to be in the normal range of 30-40.  My "M" spike (no measurable Myeloma) has stayed at "0" for 12 months.  No monoclonal bands detected (abnormal protein in my blood).  All good.  Then Dr. Sarriera explained the light chain results.

Usually one of the light chains, lambda or kappa (Kristi thinks I am in a college sorority) increases and one of them decreases.  In my case, they are both decreasing.  This makes for a lower than normal light chain ratio.  Makes sense.  Since there is not an increase and a decrease, there isn't any progression of my Myeloma at this time.  All these lab results together, along with the Pet scan is showing NO progression of Myeloma at the present.  We know there is and alway will be some Myeloma there but I am beating it down.

Dr. Sarriera wants me to add two more tests for further results of this great news.  I will have to have a bone marrow biopsy.  This will be done after my cycle 6 treatments.  Also a full skeletal X-ray from head to toe.  That he would like to see with in the next 1 to 2 weeks.  And he wants the Myeloma labs to be repeated every 4 to 5 weeks with a visit to him the following week.

We will continue with my chemo treatments for another 3 months after this cycle (5).  So will do cycle 6, 7 & 8 to complete my treatment.  This should take me till the end of March.  Then I will go on a maintenance plan.  The reason he wants to take it out 8 cycles is because that is what the standard is after a transplant.  Since my Myeloma came back so quickly after the transplant, my schedule for this was all thrown off.  Had to do the radiation first.  Then we had to start over trying to get a treatment that would work for me med wise.  Finally did with the Dex (steroids), Kryprolis (chemo drip) and Cytoxin (chemo pills).  So a few more weeks of chemo tired, Dex insomnia, Dex ups and downs, Dex bursts of tears whenever, chemo drips, chemo pills, labs, driving to the Cancer Center, etc.  We got this!!!  Dr. Sarriera explained once on maintenance, it will just be a lower dose of Dex  (Bill is so happy) and the Kryprolis drip once a week.  Cytoxin will be dropped.

I then asked Dr. Sarriera if I would ever hear the work, REMISSION?  He asked me if I would like to hear it now?  Yes and mean it.  He said well then I can say you are in REMISSION.  Finally, after
1 1/2 years.  I can actually say I am in REMISSION.  Finally, say that word over and over again.  Finally, say that word when I am down from the chemo.  Finally say that word when I feel like it.  Finally say that word when look at Bill and lower some of his stress.  Finally tell everyone, I am in REMISSION when they ask about my cancer.  Finally know I am in REMISSION.  You can lurk in me Myeloma but I got you beaten down to be able to say REMISSION!!!  REMISSION!  I got you beaten down!!!!

Today I went to the doctor about my condition,
And he said, well we can say you are in remission!
This is for Louise, Sandy, Cheri and Deb Noll.  A little blast from the past!!!

Dr. Sarriera once again left with a smile on his face.  And Bill and I as well.  Lots of kisses while we were waiting to be check out with appointments being made.  Lots of smiles between us knowing why.  Michelle and I even celebrated with a trip to Jeremiahs!!!!

Sandy and I were discussing my Christmas of last year.  The beautiful tree Kristi, Sasha and Ellie made me.  The shopping that Kristi and Kerri did for me so my grandkids would have packages under the tree from Didi and Pap.  How I couldn't wait to crawl in bed at 7 and sleep till 8 the next morning.   How "skinny" I was.  No hair!  How walking 2 times around our pool wore me out.  How I only wanted to eat Bob Evans mashed potatoes.  Wow, come a long way to this Christmas.  Sandy said this year I was putting back the "Merry" in my Christmas.  And I believe Dr. Sarriera added to that merry.  And I do believe the One above has answered my prayers, along with many others.  Prayers to be continued.

I would like to wish everyone a very Merry Christmas, Happy Hanukkah!!!

Quote:

Most of our lives is easy but when it becomes difficult and cancer strikes, it's just about remembering one thing.  I must and will simply survive.

Doug

My lab test results are back.  They all are good with the exception of my light chain ratio.  It's still low and not near the normal range.   Normal is .2600 to 1.65.  My results came back at 0.0546.
Dr. Sarriera wants this number to be in the normal range.

Since I do not see Dr. Sarriera until December 20th, I asked Ketty to have him review my lab results since my light chain ratio was low.  I received this email regarding my Pet scan and lab results:

Hi Kathy, So both Dr. Sarriera and Abby looked at your labs and your PET. Dr. Sarriera states that this can happen at times for various reasons. Since your Pet was negative, he's not concerned with the results at this time. He would like to keep monitoring it, make no changes to your treatment and repeat your labs in 4 weeks. Ketty

Great email, great labs, great Pet scan.  Great news!!!  Of course, I will be asking what are the various reasons.

I will begin my next cycle, cycle 5, of treatments the 19th.   Have a few days off except for my Dex (steroids) which I take tomorrow morning.  Maybe, just maybe, after this cycle and the next, I will be able to go on just a maintenance plan.

Kerri and Paul had a heifer that was due to drop a baby soon.  Well at 2 AM a few days ago, she had to have a C-section.  Baby too big.  After the vet, delivered via the section, Kerri asked him what his first name was.   When he told her, Kerri said then that will be this bull's name.  Doug.  His name was Doug.  Doug and mamma are both doing well.

Quote:

Be thankful for what you are now.  Keep fighting for what you want to be tomorrow.

New face.

Today I received an email from Dr. Sarriera's office.  An email I was afraid to open.  An email that I was afraid to read.  An email I started because I will not see Dr. Sarriera until Dec 20th.  An email from Ketty with a response from Abby.   And that email had some wonderful news for Bill and I.  And I was able to read it.  And I was able to put some fear away.  Some; not all.

My Pet scan was done on 11/30.  Got there at 11 for my 1 o'clock appointment.  Had to get lines put in my port at 2ACC (second floor).  Then had to go to registration on the 1st floor of the Charles Louis Pavilion.  From there to Pet scan waiting area.  Sat there a bit.  Finally close to 12, Steve (didn't have a nice bedside manner) came for me.  Bill left then as he couldn't go back because of me being injected with a dye.  This dye, FDG, a simple sugar (like glucose), was injected into my bloodstream via my port.  It contains a small amount of radioactive material too.  It accumulates in my body and
gives off energy in the form of "gamma" rays.  It can detect cancerous tissues and cells in the body that can not always be found through a CT scan or a MRI. After the injection, I had to sit in a room for an incubation period of 1 hour.   About 1/2 hour in, I popped my Ativan.  Claustrophobic you know.  Mary can relate with this.

About 10 minutes before Steve came in to get me, I fell asleep.  He woke me and off we went to the dreaded room with the dreaded machine.  But I was walking on clouds by then.  Told me lay on the table.  Covered me up.  Put a strap to help hold my arms on the table.  Then put a piece of tape, I think it was duct tape (HA) across my forehead to table.  It was lose because I checked.  My Ativan had pretty much kicked in all the way by then because I normally would have ripped it off and then slapped it on Steve.  He told me that it would be about 35 to 40 minutes for the head to mid thigh test.  He started the process and my head went in the machine and I don't remember anything until he was asking me to flip around so he could do from my feet to the mid thigh that way.  Which I flipped and don't remember any thing of that.  Just remember him saying we were done.  Helped me off the table and out to Bill.  Done for the rest of the day.  I like the way Ativan works for my CT scans, MRI's, Pet scans but don't like the way I feel for the day of and then next day.

So all this about the Pet scan was because this dreaded email I wanted was the test results of that scan.  Did not want to wait for my appointment one the 20th.  The last scan was in June because I found another lump on my head before radiation was done.  I knew it was Myeloma just from the feel of it.  Dr. Sarriera felt the same.  That Pet scan showed the active Myeloma.  The relapse so quickly after my transplant.  Aggressive, active Myeloma.  Treatments set in to action immediately.  Low dose Revlimid, no.  Polamalist, not!  Dex, Kyprolis and Cytoxin, yes.  Am now on Cycle 4, week 3, day 2 Wednesday.

Finally, right?  Lol.  The email please!  My results came back saying "no focal hyper metabolic to suggest malignancy". And that means, negative findings throughout my body.  There are still the multiple lytic lesions (spots where the bone tissue has been destroyed) throughout my skull.  Abby said to tell me the Pet scan was NEGATIVE.   Good news, great news, happy news once again.

As to why I said I was able to put away some of my fears.  Well, there has been several times in the last year and 3 or 4 months since I was diagnosed that we have had happy news only to have it shot down in a few days with BUT now we see this.  So it's hard for me to put on a full happy face when we get good news.  I am sure it's hard to understand and why not  just go with what you have now.  The slapping us, especially me, down is very hard.  So yes, I am happy, excited about the Pet scan but can't go all the way there because of the NOW this.  Sorry, my friends.

I had my Multiple Myeloma labs drawn today.  These will be back in a few days.  I will watch on my portal. Need to see the light chain ratio.  This was the area Dr. Sarriera was concerned about last time.   Another I need to see but afraid to look at the results.  Bill and I pretty much know how to read these reports.  Especially the labs.

It is now 12:11 and all my 30 pills have been taken.  I am not one bit tired as you can tell by my rattling on and on.  My blog, my rattle.  lol  Steroid, Tuesday late night.

Tomorrow, Wednesday December the 6th, is the last day of Cycle 4. Then nothing but my Dex until I go back to start Cycle 5 on December 19th.  And I will have a new face in the treatment room with me.  Excited about that.  Sandy and Denny are down for a week and Sandy is going to join me at the Cancer Center and in my treatment room.  Although Bill will be driving us because there is no way I can drive downtown Orlando with these drugs in me or would I want Sandy to drive it.  Too much traffic, to many Florida drivers.

Quote:

With cancer you learn how fragile life is and at any given time, you could lose it.  So keep your head up, God gives his hardest battles to his strongest!

Mari

Today was cycle 4, week 2, day 1.  Had to be at the Cancer Center by 11 for an appointment with
Dr. Nanda, my radiation oncologist.  He and Dr. Sarriera meet with other team of doctors to review their patient's cases.  He knew there was a small lump that appeared two days before the radiation treatments were done.  He knew this lump was not in the radiation range.  He knew that Dr. Sarriera started a treatment plan immediately.  He knew all about me and what was happening.  This sharing of info between my doctors is wonderful.  This, once again, makes me realize that UF Health Cancer Center is the best.

Dr. Nanda asked if my hair was growing back in the radiation area to which I responded no.  And said I don't feel it will.  Dr. Nanda then ask to see my head.  He felt for the small lump which is no longer there.  Then he examined the targeted radiation area.  Said it looked good.  And that he notice some hair growth.  What?  Really?  That's great.  My prayers are being answered.  He told me to be patient as it may take 6 months or more from the radiation days for it to grow back.  Bill said to me this morning and some other times that he noticed some hair but I guess I was too busy getting ready to really check it out.  Sorry.  It's very hard for me to look at this area and if I do, it can throw me in to a cry!!  But I will be taking the mirror and looking now.  Wonderful feeling knowing it is growing back, however slow and however much.  I will take it.

Great appointment with Dr. Nanda.  Will not have to see him unless there is need for radiation in the future.  And we hope not!

Just took my 11 Cyclophosphamide chemo pills.  That made my 30 pills for the day.  Just part of my routine, just part of my routine.

Left his office and went up to 5LP for my Kyprolis drip knowing it was only 11:45 and my appointment wasn't until 1.  But wanted to get my lines in my port and have the labs drawn.  This way my lab results would be ready when I went to my room at 1.  They did the line insertion and the labs right away.  Then Bill and I went for some lunch.

Back up to to 5LP around 12:45.  They were calling my name to go back to my room as we got off the elevator.  Tammy was my nurse.  Called me Sunshine.  Labs were done and results were available to see.  You all have read that my Bilirubin has been high.  2.0, 2.2, 2.4   Well today it was 1.3.  Bill and I both asked Tammy if she was sure she was reading my results.  ;)   Waited about 20 minutes for the pharmacy to mix the Kyprolis.  Then hooked up for the drip, some fluids and done.  As I was getting done, I had a visitor.  Pat (HOA president's wive), stopped by to say hi.  She is so sweet to do that.

Tomorrow will be cycle 4, week 2, day 2.  I will be getting my Kyprolis and my Zometa.  Then done for the week with drips.

Pet scan is Thursday, November 30th.  Oh, that is only 2 days away.  Preparing for that.  Will be taking an Ativan for sure since Bill can not go back with me.  60 minutes in a room alone while the dye goes through my body.  Then about 45 minutes for the scan.  I can do this.  I did it in June.  I can do this.  I can do this.  Well, maybe.  ;0

Today I met Mari.  Such a wonderful feeling after talking with her.  She just happened to be in the library at the Cancer Center when I went in to drop of flyers about out Myeloma support group.  She was diagnosed in 2003.  Mari was an avid hiker, skier back then.  Had a pain in her back that kept getting worse.  Thus, results showed Myeloma.  It had eaten away one of her vertebras.  Mari was chosen for a clinical trial in Arkansa.   In this trial, she had two transplants back to back.  One in March of that year and one in June of that year.  I mentioned that she wouldn't have even been healed from the first one.  WOW.  I can't imagine.  But in 2003 there wasn't a lot known about Myeloma.  These clinical trials were ways of researching whether treatments etc are safe and effective for humans using human volunteers.  Mari has been a survivor for 14 years.  Has been able to return to her hiking, skiing.  Mari was a great inspiration for Bill and me today.

Quote:

Healing takes courage.  And courage we have, even if we have to dig to find it.

Icicles.

Just a quick update since I haven't been on for a while.  Started my Cycle 4, day 1 and day 2 last Tuesday and Wednesday.  Also, had my immunizations on Wednesday.  Only 4 of them.  Could not administer the polio vaccine.  It's a live vaccine and couldn't be done since I am currently during treatments.  Thanks to the pharmacist that reviewed the orders for these vaccines.  I felt very proud of my Cancer Center.  I am but one of thousands of patients but this pharmacist did their job and stopped my polio vaccine from being administered.  The other four that were okay were injected in to my muscles, two in each arm.  I must say, they hurt!!!!!

My sisters are here.  My sisters were here.  Both my sisters flew to FL to spend Thanksgiving with me, Bill, Mom and Kristi and family.  Mom knew that Cheri was flying in from CA but had no idea Deb was flying in too.  She was really surprised.  They both got here on Thanksgiving day.  Deb leaves tomorrow and Cheri on Tuesday.  We really had a great time.  Laughing, reminiscing, crying, shopping, eating and things that sisters do.  I was able to hold my own with them even though I was tired.  Glad they came after day 1 and 2 of my cycle as till the end of cycle, I am totally wiped out.  Then I have my 13 days to recover.

Mom was able to spend time with Cheri and Deb too.  Kristi picked her up on Thanksgiving morning and we just took her home today.  Very upsetting for her to say goodbye to them.

My Kerri has been having a battle with her health too.  She was admitted to the hospital a few days before Thanksgiving.  Breathing and oxygen problems.  Has been discharged.  Still battling it.  Hoping and praying they get this straightened out.  She is on her way to healing but has a long way to go.  I hate that I am not closer to help her through this.  So glad she has a wonderful, caring husband and wonderful, caring kids.

We finally have a bit of winter weather in Florida as I have seen icicles in the trees on the way to the Cancer Center.  No wait, I do believe they are Christmas decorations.  ;)

Quote:

Friends pick us up when we fall down and if they can't pick us up, they lie down with us and listen for a while.

Yellow mustard.

Today is one year ago that I had my stem cell transplant.  One year ago they put back, via an hour drip, 3.6 million stem cells of the 9.35 million I harvested on November 8, 2016.  One year ago today, I was at Moffitt Cancer Center in Tampa and would be in Tampa for another 26 days since check in on the 12th.  One year ago today, I had no idea of the path that I was about to travel for the next year.  One year ago today, Bill and I were joined at the hip as he had to be with me 24 hours a day once I was released from the hospital to the hotel.  One year ago today, they said was my day zero, my new birthday.  One year ago today, I was, I was, I was.

Today, November 14, 2017, I am still battling active Myeloma but have come a long way from last year this time.  Today, am I frustrated?  Today, am I worried?  Today, am I sad?  Today, am I disappointed?  Yes to frustration, worried, sad, disappointed.  But also yes to, do I think Dr. Sarriera has a handle on my Myeloma journey.  Yes to I have to have faith in my life to make this Myeloma journey.  Yes to not curable but treatable.  Yes to all the new studies out there looking for a cure for Multiple Myeloma.  Yes to ME!!!  Yes to BILL!!!

Last night was our Myeloma support group meeting.  As always, great meeting.  The two new guests came back.  That's wonderful.  Our members are growing.  This was a pot luck dinner and fund raiser for the IMF (International Myeloma Foundation).  There were about 35 persons, members and caregivers.  So figure about 17 Myeloma patients coupled with their caregivers.  And, drum roll please, we donated last night $1,020.00.  I thought that was wonderful for so little members.  The IMF sponsors our support group.  They have so much free literature available to us.  They have free webinars.  They have a free magazine.  They have free IMF Infoline available to us.  On and on.  Great Foundation.  Glad to be a part of the IMF.  One of the drug companies provided us with a spiral ham and a turkey breast to accompany our pot luck casseroles and desserts.  The left over ham was being taken to the food bank near one of our members.  Continuing to pay it forward.

Our speaker was a transplant doctor from Greenville, SC.   Of course her plane in to Orlando was delayed but she eventually made it.  We were able to fill in with another speaker that was also there.  The doctor talked in depth about Myeloma.  Even though Bill and I know a lot about Myeloma, we always pick up new information from the speakers.  She was a wealth of information for sure.

At the end, she was answering questions from the members.  One of them asked what she recommended for leg cramps?  She told us some of her patients swear by tonic water.  The one who asked the question agreed and added - have you heard about yellow mustard?  Well, Bill and I just about fell off our chairs.  Denny Domer has been saying this for years!!!!  See Denny, this made it to the transplant doctor's office.  Oh, she said - why yes.  Several of my patients have told me this.  The person who questioned this also agreed on the mustard remedy as well as several of our other members.

Quote:

Cancer changes us.  It sculpts us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes more desperately, loves more openly, prays more freely and lives more emotionally.

Turtles.

Last year on this day, November 12th, Bill and I packed the car with suitcases stuffed will clothes, mattress foam, pillows, blankets, my quilts, etc. and took off for Moffitt Cancer in Tampa, FL for almost 30 days.  Check in day for me to prepare for my transplant.

Once I got in my room, I was poked, prodded, questioned, paper signer.  Saline drip was started to prepare me for my high dose of chemo that night.  Started the chemo drip around 10:30 PM.  Took about an hour.  More saline.

November 13th- my day of rest before the transplant.  Slept a lot because of the Ativan I was given for nausea.

November 14th - transplant day.  3.6 million stem cells of 9.3 million that I gave were given back to me via a drip.  Took an hour.  This was my day zero.  My birthday, they said.

Days of nausea, no energy, no appetite, sleeping, crying, praying.  What memories I have that I never, and never will, blogged about.  Days of wanting to go home.

November 27th - was able to leave the hospital and check in to the hotel.  Hotel that was approved by Moffitt. Room has to be up to Moffitt's standards.  Each day, we had to go back to Moffitt for my blood to be drawn.  Usually had to stay and have fluids administered.  So tired and weak most days.  Bill would get a wheel chair to take me to my appointments.

December 6th - Loved this day.  Dr. Ocoha released me to go home.  It was late till I got out of the hospital so Bill and I decided we would just stay at the hotel overnight and leave in the morning.  After a few issues in the morning, we finally got on the road and headed home close to noon.  Hello Casselberry.  Hello Tommy!!!!

Then the days to follow were filled with trying to build up my energy level, my appetite.  Days of feeling proud that I walked two houses up, started to eat more then mashed potatoes, not getting sick as much, having some company, trying to do some housework and just trying to get back to normal.

Now it's one year later.  All that above I needed to write to just bring it from last year and how much has changed a year later.  I will never forgot those 26 days.  They are etched in my mind forever.  26 days.

The story continues one year later with me still have some active Myeloma.  Still not hearing the remission word.  Still having to do treatments.  Still trying to beat this!!!!  And I will!!!!  And I will!!!

We still have a lot of lakes and other bodies of water that are very high.  Last week on the way to the Cancer Center I noticed a big pipe in this one lake.  I usually watch the birds on the shorelines when we pass by.  Being nosy, I wanted to see what this pipe was for.  Well, I found out.  There were about 6 or 7 nice sized turtles sitting on the pipe.  Guess it was put in there for them and not for draining.

Quote:

Find the courage to move forward one day at a time.

Hello Mrs. Snowberger.

Cycle 3, week 3, day 2.  And the end of another cycle.  My 13 days off.  My chemo vacation.  My will feel half way decent in about 3 to 4 days.  My not having to run to the Cancer Center 2 times a week.  My Uber drive Bill's vacation.  My just putzing around the house days.  It's amazing how 13 days are so freeing to me.  Took them for granted for so many years.  Life sure does change.

Got to the Cancer Center around 1.  Signed in and was taken back to the draw station as they called it today.  Had to have my lines put in and also a lab draw today to check my bilirubin numbers.  Only one tube of blood.  That was a first in a long while.

Once that was done, I was sent back to room 15.  Oncology nurse today was Mike again.  Next to Patrice, he is my favorite.  Full of knowledge.  Explained it would be a bit until labs were back, which we knew.  Then once back, would have to then contact Dr. Sarriera if over 1.5.  That's the limit Dr. Sarriera set before a call to see if okay to go on with the Kyprolis drip.  They came back 2.2.  Lower than yesterday but still high.  Call into Ketty to contact Dr. Sarriera as to his instructions.  Came back okay to administer the Kyprolis; which had already been mixed and delivered to the room by the pharmacy.  Usually on Tuesdays they do not have to wait on labs before mixing.  Mike started the drip and we were on the road home by around 3.

Now I am waiting to hear from the scheduling department as to my times and days of my next 4 to 6 cycles.  Hoping for the Tuesdays and Wednesdays at 12:30 and 1:30.  I figured I will be doing treatments until sometime in February if we go 4 more and sometime in April if we go 6 more.  Whatever Dr. Sarriera does if okay by us just so we can knock this Myeloma out of me and give us some peace of mind for a long time.  Been dealing with Myeloma since last July, 1 year and 4 months ago.  Even though it's not curable and only treatable at this time, I don't want to be dealing with this magnitude of Myeloma next year this time.

Hello Mrs. Snowberger.  Picking up today?  That is what we heard as we walked in to the pharmacy at the Cancer Center today.  That is a good feeling when they call you by your name.  Hate that it's to pick up drugs though.

Quote:

Never let a stumble in the road be the end of your journey.

Minehaha, Swoope, Wigwam, Beach View, Thistle.

Today is start of Cycle 3, week 3, day 1.  Started out with an early appointment with Dr. Sarriera.  10 AM to be exact.  So that meant leaving at 9.  That meant me getting up and ready by 9.  That meant an early day for me.  Especially since my Kyprolis appointment wasn't until 12:30.

Got to the Cancer Center around 9:40.  School traffic zones and normal back up of traffic at Lee Road and 17/92.  Registered and only sat down about 5 minutes and was called back to Dr. Sarriera's room.  Blood pressure (a little high on the second number), weight (OMG), bunches of questions.  Then Abby came in to review my case.  Had several questions for her to be discussed also with Dr. Sarriera before they came back together.  Lab looked good for last two months.  Will I be going another cycle?  Why is my vitamin D so low?  Will I every hear the word remission?  What about my immunizations?  No appointments for Kyprolis after this week?  And of course, Desiree??

She answered a few.  Probably will be another 3 cycles.  Vitamin D (the Florida vitamin) should be in the range of 30 to 96, mine 19.  Giving me a prescription 50,000 mg tablet to take once a week for 12 weeks and then to take a 5,000 mg over the counter tablet daily.  Retest of vitamin D level in 3 months.  No remission word yet.  :(  Will give me a partial response.   Immunizations will be done probably in two to three weeks.  My baby ones.  Desiree is doing okay.  Looks tired but happy.  Babies are great.   Bill and I miss her a lot.  Abby listened to my heart and off to get Dr. Sarriera.

Not as much of a smile as the last time Dr. Sarriera came in to discuss my Myeloma.  Shook hands with each of us and asked how I was feeling.  Okay.  Just my Friday, Saturday fatigue that gets worse as the cycles go on.  Started with saying that my labs all look good except the light chain kappa/lambda ratio.  It's on the low side.  Mine 0.1575.  Normal range  - 0.2600-1.65.  This low range means there is active Myeloma.  Last months test registered 0.1618.  Going down.  Dr. Sarriera wants to continue with another 3 to 6 cycles (3 weeks on, 1 week off).  Said there was never any chance at stopping after 3 cycles.  He will reevaluate accordingly with labs, appointments with him and scans.  During this time, he will order a Pet Scan before the end of the year.  Oh, joy.  Can you hear me freaking out already???  Also, discussed that I do not have any appointments for Kyprolis after tomorrow.  Explained he does these appointments in blocks of time so will get me back on my schedule.  Said he is more than likely going for 6 more cycles.   Hello 2018.  Talked mainly about the light chains.  Once he is happy that my cycles have done their job, will work in a maintenance plan for me.  Instructed Abby to get Pet Scan set up and immunizations scheduled.  Appointment done.  Little upset here.  Holding back tears.

Down from 2 floor to pharmacy on 1st floor to order more Dex and Cytoxin for my Cycle 4.

Up to 5LP to see if anyway I could get in early.  My appointment was at 12:30.  Now 11.  Registered for my for my lines and labs.  Once they were completed, Bill and I went to lunch on the 4th floor.  Then back up to 5LP around to wait for my 12:30 appointment.  Never took us back to my room till 1.  Then my bilirubin came back the highest it's been so far.  2.4.  Had to contact Dr. Sarriera for instructions as which way to go.  He was out on rounds.  Finally got his instructions, Kyprolis ordered at pharmacy, sent up to room, drip started, done and on the way home around 3.  I have to have labs done again Wednesday before my Kyprolis drip to check my bilirubin.

I talked with my oncology nurse, Stephanie, what I could do to help this?  One thing she said was being on the meds I am on and not drinking enough water over a period of a few days may be part of the problem.  Said you should drink in ounces 1/2 the amount of your weight.  So I guess I need to lose weigh.  Ha!   That's another problem to be discussed at a later time.

Each time we go to the Cancer Center, I like to look at the street names.  Minehaha, Swoope, Wigwam, Beach View, Thistle.  Orange, Kyle, Packwood, Zelma, Marks, James, Madeleine, Hazel, Red Bug Lake, Pinesong.   Some names of family and friends, some names that say Florida, some names that say Disney and some names that say home.  I love Florida.

Quote:

Sometimes it hurts and the only thing that helps are the gasps of air between the tears.  

Weight Watchers.

Cycle 3, week 1, day 1 started on Tuesday, October 31.  I was to have my labs drawn for the Multiple Myeloma tests to be done.  Of course because of the mix up 3 weeks ago, there weren't any new orders written requesting the labs.  This was to be taken care of but apparently got lost.  These labs are to be done a week before my appointment with Dr. Sarriera as some of the tests take a bit longer than others.  Since I know when I am to get what labs, I questioned my tech.  He looked to see what and how many extra tubes to draw so this would happen for me.   Thank you Nick.  Once lines were in my port, labs drawn, we went in to my room to wait results from labs so they could mix my Kyprolis accordingly.  Took a bit like always but finally results back.  Nothing out of the ordinary.  Bilirubin was high but down from last week.  Pharmacy mixed my Kyprolis, plugged me in and soon done.

Day 2 stated out early for us.  Had a mammogram appointment first.  Then there was some time in between that appointment and my chemo drip.  We were able to get in a bit early for the drip so we didn't have to sit around and wait.  Had one of my favorite oncology nurses, Patrice.  My blood pressure was measured at 146/102.  What??? This was taken in the lab room when they where they put in the lines for my port.  Usually about 112/58.  Patrice took it again and it was 116/58.  I think the first machine wasn't working, don't you?   Got my Kyprolis without a real long wait.

Okay so all this time and I am waiting for lab results to be added to my portal.  And we got them.  GREAT news!!!!  Just needs verified by Dr. Sarriera.  My Para Protein is 0.  My IFE Impression (serum) says no monoclonal bands detected.  My IFE Impression (urine) says no significant  protein.  So this means, there isn't enough detectable Myeloma to measure.  This is so what we want to hear.  This is so what we need to hear.  Can't wait for my appointment with Dr. Sarriera next Tuesday.

Today, Thursday, I had a CT scan for a pain that I have in my right side.  I have had this pain for quite a while.  Have had CT scans before while living in Chambersburg.  They never find any thing.  My family doctor ordered the scan.  So we will see what or if they find anything this time.

On Tuesday, Oct 31 all the persons on LP5 (the floor where my chemo is administered), were wearing t-shirts with WW in glitter on the front of the shirt.  Asked my tech, Nick, what it stood for.  All I could think of was Weight Watchers.  Duh.  Wonder Woman!!!

Quote:

Cancer is an ugly disease but the beauty of your life after cancer is worth fighting for.

Cold water.

Tomorrow will be day 1, week 2 of cycle 3.  Will have extra labs drawn for Myeloma testing.  These   labs are done one week before my appointment with Dr. Sarriera.  That way all the results will be back for our appointment.  Also, doing a 24 hour collection for that visit.  TMI??  Sorry.  Need to keep it all together so I can remember when.  Appointment with Dr. Sarriera is next Tuesday, Nov 7th.  What November already???

Had a not so good weekend.  Tuesday started with me being up till 2 AM, sleeping a few hours and up again.  Wednesday we were in and out of the Cancer Center really quick.  No labs and till I got my port lines in, my Kyprolis was on it's way from the pharmacy.  Wednesday night was pretty much the same as far as wide awake till AM hours.  Then comes Thursday.  Still a bit wired but feeling the steroids are wearing off.  Was able to go with Michelle to play bingo.  Michelle won a game!

Then comes my Friday.  Chemo now kicking in.  So very tired.  No energy.  Naps are what I need and what I take.  Picked up mom and met Kristi, Matt, Sasha and Ellie for a belated birthday dinner for Matt.  Very good choice of restaurants.  Was able to keep awake for dinner.  :)  Saturday was pretty much the same.  Not as tired but again not much energy.  Pushed myself through the day.  Napping again.  Felt down a lot of the day.  Started with a pain in my left hip on Thursday that continued off and on Friday and Saturday.  Not sure what that was???   Sunday energy level was better.

Now I get to start all this all over again.  10 steroids in the morning along with my 2 meds and 3 vitamins.  2 more meds at 3 and 2 more at 8.  Then the 11 chemo meds around 10:30 tomorrow night.  Hence, my 30 Tuesday meds.  Up most of the night Tuesday and Wednesday.  Thursday somewhat wired, Friday and Saturday fatigued, Sunday some energy, Monday more energy and start over again.   Over and over.   Till when???

Weather has turned a bit cold in FL.  I think this morning it was 46.  And to be cold for a few more days.  One thing in FL that you have is warm water coming out of the spigots even when you only have the cold faucet turned on.  Gets confusing to non Floridians.  Well this morning, we actually had cold water coming out of the faucet.  Really cold water.  Had to call Sandy and tell her.  Cold or hot, I love Florida!!!!

Quote:

Laughter is the sound of our soul dancing.

(Thanks Louise)

Did you take Kathy to the vets office today?

First - We have had our special, special and did I say special friends visiting with us for the last 6 days?  What a wonderful, fun loving, laughing, crying, sharing, some drinking and much, much needed visit.  Louise and Bob came to visit.  We have not seen them since June 2016.  This was before I was even diagnosed with Multiple Myeloma.  It was there but we had no idea!!  So again, I say, this was a much, much, much needed visit.  We ate out a few times, ordered pizza and wings, went to the beach, floated in the pool, sat on the porch talking and they had a few drinks (they as Bill, Bob and Louise. Okay, I had one or two half drinks), shared some time with Michelle and Gery, had Ellie one day as she didn't have school, visited with  Kristi, Sasha, Ellie, Chloe, Gracie, Sunshine, Millie and Emma, Matt had to leave for meetings for Spirit so didn't see him, chased frogs, drove by Pulse, watch a few Yankee games (:, talked, talked, talked and talked.

Today was very hard saying good bye when we dropped Louise and Bob off at the airport.  So very hard for me anytime we drop any of our friends or family off at the airport or say goodbye in our driveway.   I know I am a very, very strong person.  I know I am a very determined person to beat my cancer.   But I also know I will always have Myeloma lurking around in my bone marrow.  I know Myeloma is treatable but not curable.  I know.  I know.  I know.  But knowing this makes me cry because I think in my mind that I may never see these people again.  I try to not let them see me cry as they are leaving.  I share this with Bill as we or they drive away.  As I am trying not to let you see my tears now as you all read this part of my blog.  This is something I need to express.  Just want to share my feelings tonight.  Just needed to share my feelings tonight.  Just need to cry a bit more.  Now will wipe away those tears so I can see to type the rest of this day's happenings.  Thanks for letting me cry.  Thanks for understanding this is something I will always feel no matter what.

Cycle 3, week 1, day 1 started today.  I took my 10 steroids this morning along with my other 5 meds and vitamins.  Left after taking Louise and Bob to the airport for the Cancer Center.  Got there around 12:15.  Took me back within 5 minutes to put my lines in my port and draw labs.  Then right back to my room.  And then the wait started.  Took a bit for the labs to come back.  Bilirubin was up again.  So the wait for the go ahead from Dr. Sarriera to have the Kyprolis drip mixed and administered.  That took a bit .  I told my oncology nurse, it was Maggie today, the reason was because Desiree wasn't there.  :). Maggie did start a bag of fluids.  Usually this drips about 5 minutes before the chemo drip but today she started it for 15 minutes and mentioned it would stop and once the Kyprolis was ready and dripped, she would set the fluids for another 15 minutes.  Questioned her on this because was different and she said it was ordered by Dr. Sarriera.  Guess he wanted me to have more fluids.  I will ask him about this at my November appointment.  Note to self - add this question to my Sarriera notes on my phone.  Finally done around 3:30.  My long day!  Tuesday is always my long day.  They did give us lunch.  Ended the day with an invite from Michelle and Gery to have dinner with them.  Gery made Sheppard's pie.  First time for us.  Loved it.

Now I am wide awake from the steroids.  10:15.  Waiting to take my 11 Cyclophosphamide (got that one Louise?) chemo pill at 10:30.  This will make my total 30 pills on Tuesdays now that I added a new supplement of Turmeric.

Today had a few first for us.  We actually saw an alligator floating in Lake Jesup when we were crossing the over the bridge and about the same time an eagle flew down to get a fish.  This was shortly after dropping Louise and Bob off.  Beautiful sights.  Beautiful signs from above.

During the time we were waiting on the drip, I got some water coloring painting relaxing therapy.  The volunteer, Valerie, was working with another patient and come over and asked if I would be interested in a quick lesson in painting with water colors.  Sure, not going anywhere for a bit.  We did a small, probably 8 1/2 X 11,  painting of some flowers.  Not so bad.  I do think I will frame this one.  Wish I could figure out how to post pictures on here.  Kristi!!!!!!   Then I had a visitor.  Me.  Someone other then the receptionists and my oncology nurses and Bill knows me.  Pat, the wife of our HOA (Home Owners Association for Deer Run) president works at the Cancer Center.  She was on her lunch break, remembered that I had treatments on Tuesdays and Wednesdays and came from her office to say hi and see how I was doing.  Very thoughtful and very nice.   Much appreciated.

Also, while waiting on the drip and working on the painting, we had 5 therapy dogs visited our rooms.  They were dressed in their Halloween customs.  (11 chemo pills down).  Big dogs, little dogs.  So dang cute, so loving and very quiet.   Their trainers are wonderful too.  They talk with you, caring about your reason for being there.  So Bill is sending pictures of these dogs to Kristi, Kerri and of course our dog loving Gery.  Kristi and Kerri respond with so cute, so nice, wonderful.  Gery also commented on them being cute, wonderful and then asked Bill "Did you take Kathy to the vets office today instead of the Cancer Center?"  What a good laugh!  Thanks Gery.

Quote:

You gain strength, you gain courage and you gain confidence by every experience when you stop to look fear in the face.

Chatty Kathy

Just a quick update.  I finished my cycle 2 last week and have off until October 24.  Only have to take my steroids and regular meds.  Took the steroids yesterday and that is why I am still up.  It's 12:45.  Last night I went to bed at 1, was up around 4, slept from 7 until about 8.  Been up ever since.  Sure hope they keep me up a bit tomorrow night.  BECAUSE Louise and Bob will be here.  We pick them up around 7 PM tonight.  Will be here until the 24th.  Yippee!!!  So much a needed visit for the 4 of us.

Other then the insomnia, I have a rash but nothing bothersome.  It's funny because it starts on my chin first, then moves up the cheek, to my nose.  Then eventually goes to my chest and neck areas.   A little on my arms but seems to stop there.  And of course the steroids make me a little aggravated, anxious, talk a lot and sometimes could cry for no reason.  Have been able to hold back the tears but sure there will be some flowing tonight.  BECAUE Louise and Bob will be here!!!!!

May not be posting for a bit unless there is change in anything with me.  Don't see that happening. BECAUSE Louise and Bob will be here!!!

Michelle came over last night to say hi to Mom.  Well, she got to see the steroid can't shut up day.  Blah, Blah, blah, blah.  LOL.  So we decide to call me Chatty Kathy.  Do you remember that doll?  Was the last doll I ever got.  She was spelled with a C though.  Mag pies will be our names soon.  BECAUSE Louise and Bob will be here.

Quote:

Wherever you go, no matter what the weather, bring your own sunshine.

Love you, mom!  xoxo

Cycle 2, week 3, day 2 ends my cycle 2.  Makes sense right?  So I am done with another cycle.  Made it through 2 cycles which is so great.  Minor side effects from my chemo drip and chemo drugs and Dex.   Some rashes but nothing major.  Nothing that itches.  Just looks like I was out in the sun.  Some insomnia.  Hungry and could eat everything in sight.  Like at the homecoming parade tonight.  Not hungry.  Can't eat much, if anything.  Slight headache after day1 into morning of day 2.  Sweats that leave clothes soaked lasting day 1 and a bit in to day 2.  Then the fatigue sets in Fridays, Saturdays and part of Sundays.  Know pretty much what happens on my days after these first 2 cycles.  Off now for 13 days except for the Dex.  Nice break.

Yesterday when I had my lines put in my port for my normal labs and drip, I noticed the nurse was drawing more than three tubes of blood.  When I questioned her, she said she was doing the Multiple Myeloma follow up ordered by Dr. Sarriera.  I was talking to the aid and hadn't paid attention to what she was doing at first.  I told her that order was for three weeks from now.  She continued and didn't listen or recheck the order.  I contacted Ketty (she is filling in for Desiree) and I was correct, there wasn't to be another MM draw till 3 weeks.  Just didn't read the order correctly.  My own advocate.  I know my schedule of labs and no labs.

Today was really a fast day.  Was longer in the room to have my lines put in than in the drip room.  Till they got the lines in, I was assigned a room.  Got Bill from the waiting room and headed back to room 7.  My Kyprolis was already waiting for me.  Tammy (she is so nice) hooked me up and done with the drip, the flush of saline and Heparin and out of there.  See you in 13 days.

Love you, mom!  xoxo  This is something I will never get tired of seeing texted to me.  This time from my Kerri about 30 minutes ago.   Love you too Bear.

Quote:

Cancer can touch you, but not your soul, neither your thoughts, nor your heart.

Ruby and Rex!

Wonderful, wonderful, wonderful news today.  Met with Dr. Sarriera before my chemo drip.  Walked out of his office with smiles on our faces, hope in our hearts, fear beat down some, knowing prayers  answered, just happy!!!  Dr. Sarriera review all my labs with us and they are great.  No, let me repeat, no measurable Myeloma present.  It's so minute.  So again I say, no measurable Myeloma present.  M-spike at 0.  No monoclonal bands detected (abnormal protein in my blood).  Free light chain (antibodies produce by normal plasma cells) ratio is at a perfect value.  My IgM, IgA and IgG all are low but that is cause by my chemo meds. (These are all types of antibodies in your blood).  Good, great, wonderful.  I did see one thing on my lab test that concerned me that I asked him about.  It was listed under a test called SPEP (Serum Protein Eletrophoresis).  This is a test that measures specific  proteins in the blood to help identify some diseases.  It was a test that said Protein Impression.  The comments stated Hypogammaglobulinemia.  What???  Dr. Sarriera was not concerned at all even though the previous two months the comment said "normal protein electrophoresis pattern.  He said that this is something because of my low IgM, IgA and IgG.  Again, low cause by my chemo meds.

I am due for my next set of immunizations soon.  Also, due for skeletal X-rays, mammogram, and ugh, 24 hour urine analysis.  All being scheduled soon.  He examined my head.  We feel no other lumps.  Know it's working.  Dr. Sarriera feels I will not get my hair back where the radiation treatment area was.  This is upsetting but a post for some other time.  This is a happy post.  Discussed my fatigue on Friday and Saturdays after my two days of chemo and Dex.  As long as a nap or two helps, it's normal.  Also discussed, he will keep me on this for 4 to 6 cycles with a follow up visit with him every four weeks along with the Myeloma lab draws results.  Once the cycles are done to his liking, he has a maintenance plan ready to start me on.  Maybe, he will say the word remission soon.

Dr. Sarriera congratulated us on great news, shook our hands and started to leave.  Then told me that he felt I looked good, reacting good to the plan.  Shook our hands again, ready to leave and talked about something else.  I genuinely think he was so happy to be able to give us such great news, he didn't want to leave.  Finally shook once more and left with a big smile on his face.  Leaving Bill and I with smiles too.

And then, in comes Abby with pictures and news of those babies.  Desiree and her husband's babies.  Ruby and Rex  (hope I spelled these right).  Gorgeous babies.  Loved the pictures.  And here is what Abby told us.  One weighed 7.5 lbs - 21 inches long and the other weighed almost 7 lbs - 21 inches long.  I am saying Rex was the heavier of the two.  Hope I got that right.  Can not imagine what their weight would have been if Desiree would have gone full term.  Oh my!!  Can't wait to talk to Desiree about them.  All four are doing good.

After seeing the pictures and hearing that Desiree and babies are okay, I remembered a quote that Kristi had (I think it was on a plaque) displayed during her adoption days.  So my quote tonight is dedicated to Desiree and husband (need to get his name).  Thanks Kristi.

Quote:

Life is not measured by the number of breaths we take, but by the moments that take our breath away.

It is my family.

Well, I sure messed up on my cycle count in my previous post.  We are going in to Cycle 2, week 3, day 1.  That would be tomorrow.  Then day 2 on Wednesday.  Then I am done with treatments and meds except for regular meds and Dex until October 24th.  That would be 13 days off.  And that works out so well because we are getting company from PA!!!  Company that I have waited for, for quite a while.  Company!!!  So excited!!!  Lots of catching up to do.  Can't wait!!!

Tonight was our Myeloma meeting.  As always, I leave there so up and so excited about the info we get from the speakers.  Tonight was an oncology nurse of 30 years.  When she first heard of Myeloma years ago, patients were told we can try this but there's not much we can do for you.  This disease is untreatable.  Now she, some 30 years later, has seen new drugs introduced, longer survival rates, older drugs like Revlimid and Velcade helping so many Myeloma patients.  Can't tolerate Revlimid, Pomalyst, Velcade well there is now Plan B, Plan C, Plan D etc.  Myeloma is now treatable but still not curable.  There will always be Myeloma cells "lurking" in my blood but my numbers are not measuring them at this time.  My treatment plan is working.  My treatment plan is pushing me towards remission.  My treatment plan is working.

Tomorrow I also have an appointment to see Dr. Sarriera.  All my lab tests should be back and from what I am seeing, all looks good again.  Just need Dr. Sarriera to verify.  Also, I will be able to ask about Desiree.  And hopefully see some pictures of those babies.

Arlene.  Arlene is Ken's, our founder of the Myeloma support group, second in command.  She is an oncology nurse.  Has been with the group for a long time.  Arlene supports us in so many ways.  She very rarely misses a meeting.  Is there to decorate the tables, lead the group chat session, get us to sign cards for our members who are sick or lost a family member and keeps Ken in order.   Tonight she shared with us how she came about being a part of the group.  Sorry but I forget how long ago she began coming to meetings.  But think it was from pretty much the beginning 10 years ago.  When she was sharing, she got a bit emotional and said this group is like my family.  It is my family.  And I agree wholeheartedly.  This group has become my family.  This group has become my treatable part of my Myeloma.  This group has become a part of my monthly schedule.  This group has become a part of me.

Quote:

You can beat cancer by how you live, why you live and in the manner in which you love.

Got ya.

Just an update on my day 2 of week 1, cycle 2.  Was really in and out rather fast.  Took me right in to put in my lines for my Kyprolis drip.  And was sent back to my room as soon as they were done.  My oncology nurse was Mike.  Have had him before.  Pharmacy mixed my drugs right sent them to my room within about 15 minutes after we sat down.  Hooked me up and within 15 minutes I was done and dismissed.

Once we got home, I noticed the area around my port was a little bluish and looked swollen.  My port isn't completely flush with my chest but not raised a lot.  I watched it a bit and it seemed to be swelling more.  Decided to call the treatment center as I was getting bit anxious.  Talked with Maggie, the charge nurse.  She, of course, right away said if I wanted to come back in and be checked, please do.  She felt the way I was describing the looks of the area around my port that a capillary was probably hit when they were putting the lines in to my port.  We decide to watch it for the rest of the day and night.  Then I was to call in the morning.  I watched.  Swelling stopped.  Today, Sunday, it seems to be back to normal.  Will have them check it out on Tuesday.

Weekend was a little down.  Thursday I was super tired.  Friday and Saturday I had to push myself to move.  I did get out to the grocery store on Friday.  Well, after we had Triple A here to replace my car battery.  Was time I guess.  This Florida heat is hard on your cars so they say.  Seemed to not have a lot of energy.  Even took some naps.  :)  Figured some of it was the coming off the steroids.  Today, Sunday I felt the best I had all weekend.

Bill, once again, got in with some fire ants.  He is so careful but guess they seek him out.  Not as many bites this time but boy his ankles are swollen.  Especially the left one.  Was having trouble walking for a bit.  Doctor did you say?, not happening.  I tried.

Kristi, Matt, Sasha and Ellie (well, she came later) came over today for spaghetti.  Good spaghetti if I must say.  Once Ellie got here, we had a Carvel ice cream cake to celebrate Sasha's got ya day.  12 years ago today, Sasha made Kristi and Matt parents.  What a treasure this child is.

Cycle 2, week 2 starts Tuesday.  Plus I have an appointment on Tuesday to see Dr. Sarreria.  Hopefully all my labs are back.  Anxious to see if I am holding strong on the M-spike.  Want to hear that remission word!!!  Want to be able to start a maintenance plan that works.  Want to not have to run to the Cancer Center twice a week.  I know a have a few more cycles to get there but need to hear that we are working towards those things.

Quote:

Don't let it break you. No matter how hard things get, life goes on.

Shut the door.

Today was Cycle 2, week 1, day 1.  My long day.  Even a tad bit longer as they had to draw 6 tubes of blood for the lab.  4 gold top tubes, 2 green top tubes (I think it was green).  These extra draws are for my Myeloma tests requested by Dr. Sarriera for next week's appointment.  As we know, some of the Myeloma tests take extra time.  Getting on a schedule to have them done the week before my appointment so they are back and ready to be discussed.  Took my 10 Dexamethasone this morning along with my regular 4 pills.  Waiting now to take my 11 Cyclophosphamide around 10:30.  It's about 10:15 now.  Then, since the Dex has me wired, I will be up for a bit.

Oh, also took an extra pill this morning.  It was my Z-pack for my sinus infection.  My Arithmetic pill as I call it.  Started feeling like I was getting a cold on Tuesday.  Use Aleve and Vicks for two nights.  By Friday, felt somewhat worse but still not real bad.  Saturday was okay.  Then Sunday evening it felt and sounded like my "old time" sinus infections.  I kept taking my temperature all week because if I would spike a temperature, I would have to get in to the Cancer Center as soon as possible.  This is because of my immune system.  Highest was 98.5 which is nothing.  Monday morning as soon as my family doctor opened, I called and got any appointment.  Dr. Henley didn't take long to agree with me.  Script written and was out within 15 minutes.  So took two pills yesterday and 1 today.  Have 3 more to go.  Actually feel somewhat better today.  They always work for me.

Got to the Cancer Center in time to go to the library and also pick up my script at their pharmacy.  We really like that pharmacy.  And most of them recognize me.  Hmmm???   Library stop was to ask if they would display brochures about our Myeloma support group.   Of course they would.  Not sure if we will get any new participants but worth the try.  I know if Kristi hadn't found this group for us as quickly as she did if we would have found it.  Probably but who knows when.  So glad for this support.  You have no idea how I feel when I leave.  Hard to explain.  Just know it's a great feeling.

Today was an okay day when I got up but after I got ready to leave for the Cancer Center, the tears were there.  Didn't take much to turn in to a fountain that wouldn't turn off for a bit.  Sometimes I just wish I didn't have these appointments, didn't have to drive anywhere, didn't have to worry about my bilirubin results, didn't have to have blood drawn, didn't have to take all these dang pills, didn't have to, didn't have to, didn't have to.   Then I realize that I do have to, that I do have to, that I do have.  Collected myself together and did!!!

10:30.  Be right back.  3 capsules, 3 capsules, 3 capsules, 2 capsules, done.  Mom asks me every time if I take them with yogurt.  No mom, I just put them in my mouth and swallow them.  For someone who only ever took one pill a day, I have become good at this because I do have to.

My lab tech today was Kerrie Ann.  Her sisters names are Karen, Kristy, Kate.  Had a brother name Doug.  Forgot to tell you this Kerri and Kristi.  Not sure what credentials these techs have but I know some of them rotate to the rooms where the cancer patients get their drips.  Not the normal lab techs we are used to.  I don't even think the techs on the 1st floor of the Cancer Center have special credentials.  I get draws there occasionally.

Miles was my oncology nurse again today.  And he has worked in the lab draw area.  In fact, that's where I first met him.  Got in my room around 1.  Waited for my lab results so they could mix my Kyprolis.  Labs finally came back around 1:30.  Bilirubin was up again but down from last Tuesday.  2.0 last Tuesday and 1.6 today.  Still high.  Miles had to check with Dr. Sarriera again.  He approved.  Miles sent order to pharmacy and had to wait for the mix.  I actually fell asleep for a bit.  Drip started about 2:20.  Done and out of there around 2:40.  Tomorrow should go fast.  No labs.

During the time we were waiting on the labs, bells started dinging and lights started flashing.  Bill and I did a sit up straight.  What???  Miles walked over and shut the door to our room.  Said it was a requirement when those things happen (bells and lights).  Still nothing as to what was going on.  No announcements.  Miles was very calm.  Me not so much.  Bill not so much.  Finally an announcement was made but couldn't hear it because our door was shut.  Not speakers in our room.  Sure that was on purpose.  Bill thought they said something about smoke on the 1st floor.  Finally the bells stopped.  Lights on for just a bit more.  One of the oncology nurses, Kara, came in and told Miles what was going on.  When she left, I asked him.  There was pop and the sprinklers went off.  Part of the first floor was flooded with black, oily water as the elevators were involved too.  When we finally left, we had to take the back elevators down to the first floor and cross over.  I was waiting on Bill and one of the receptionist (guest service is located where this happened) said she was just sitting there, heard a pop and got soaked.  There were maintenance workers everywhere on that floor.  Sort of scary with all that goes on in the world today.  Hate that feeling but with Pulse just a 1/2 mile up the road from the Cancer Center and the Vegas shootings just happening, I was a bit scared.

Quote:

Sometimes when I say I am okay, I just want someone to say, here is a hug, I know you are not.

Honey, I hate to say this....

Awake at 6:30 but stayed in bed.  Laid there thinking.  Sometimes that's good and sometimes, not so good.  This morning was between the two.  I was thinking about everything.  Not in order of thoughts or events.  The first diagnosis, the days after the diagnosis,  waiting for treatment plans to work, meeting of Dr. Sarriera, Abby and Desiree, the transplant, the awful days after the transplant, Tampa, rashes and hives, fatigue, being frightened, doctors appointments, words we thought we would never know the meaning of, neuropathy, hair loss, Myeloma, Multiple Myeloma, our support group, lab results, radiation, treatment plans ditched, chemo, more chemo and more chemo.  Words we now know and situations we have made it through.  Words and situations we handle with our ups and downs.  Words and situations we sometimes control and sometimes not.  Words and situations that will continue on our Multiple Myeloma journey.

After my hour or so of thinking, I got up to begin my Cycle 2, day 1 of my treatment plan.  Which means the start of taking my 29 pills.  Got the first 15 done by the time to leave for my chemo drip of Kyprolis.  This included my 10 Dexamethasone.

The Cancer Center was not busy in the 5LP area today.  Was taken back within 5 minutes of checking in to get my lines put in my port and have my labs drawn to see how the Kyprolis drip will be mixed by the pharmacy.  Was sent right to my room (ha) as soon as that was done.  No waiting.  Collected Bill and back to room 2.  My nurse today was Jessica.  May have been a sign that she was not a happy nurse since her name was not posted on the door.   Because she was not a happy nurse.  Full of business person.  Questions and done.  Would let me know the progress of labs etc.  Did get me some cheese, crackers, grapes and yogurt.  And a warm blanket.  So snuggled up on my heated lounge chair wrapped in my warm blanket and waited.

About 45 minutes later, got the lab results back.  Hold put on the pharmacy mix.  My bilirubin was up again.  So needed to contact Dr. Sarriera to see if he wanted to continue, make the mix dosage lower, keep the same or not do the treatment.  Please don't say no treatment.  Dr. Sarriera so it was okay to keep the dosage the same (had lower last treatment because of the bilirubin results).  Pharmacy mixed and sent to up to 5LP.  Drip set up and done in 10 minutes, saline for a bit, lines removed and done.  Jessica still not a happy nurse.  Left the 5th floor and down to 2nd to see Desiree.

Desiree was just coming back for lunch.  She was smiling as she walked to us.  So glad we got to see each other.  Hugs.  Far away hugs because of the belly.  Today was her last day of work.  Has tomorrow at home.  Thursday, Desiree and her husband (sorry I forget his name) get to bring two precious babies in to their family.  One precious girl and one precious boy.  Names I won't say because not sure if Desiree has told everyone.  So happy for them.  Can't wait to see pictures but most of all, can't wait to hear Desiree and babies are doing well.  Desiree has been there so much for me for over a year and has become very special to me.  She looked really nice all dressed in black today.  Bill had to make her laugh, of course, and said - Honey, I hate to say this but black isn't very slimming on you.  To which she replied - This is my Ninja suit.  She loves Bill too.  Good luck, my friend, good luck!!!!  Will be in my prayers and thoughts.

Now, I wait to finish the last of my 29 pill day.  Only 11 more of the chemo pill, Cyclophosomide, to take and I will be done.  Will be taking them in about 1/2 hour.  Almost 10 now.  But will be up for awhile yet.  Steroids!  Yep, steroids!

Quote:

Cancer-an awful word we fear.  When we first hear it said to us and to the people we love, we finally realize all things that we never paid attention to before.

Sounds of the morning.

Was so nice to have some time off treatments, pills, running to the Cancer Center.  May not seem like a lot but to us it is.  We were able to breath a little.  In two days, we will be back to Cycle 2, Day 1. Only 5 more 3 week cycles to go.

My days from Thursday to today, Sunday, went okay.  I had a few days of being really tired but figured that was the steroid doing.  Friday I got mom for an overnight.  Took her to Walgreens, her bank, to get her nails done and then we got crab legs.  So yummy.  Saturday, we went to Stein Mart before I took her home.  She hasn't been shopping for awhile and decided she needed a new purse and wallet.

I try to get up and moving anywhere from 8 to 8:30.  But most times I lay in bed and listen to Bill in the kitchen getting my morning regiment together.  I hear the clinking of the frozen lemon dropping in the glass as he makes my lemon water.  I hear the pill bottles opening as he gets my morning pills together.  I hear the refrigerator opening as he gets out the fruit to make my morning bowl of fresh fruits.  I hear this almost every morning and I thank God for Bill.  My sounds of the morning.  This journey of mine would not have been so far along if I didn't have the support of Bill.  Together we have fought many battles and we know we have more to fight.  Together.

Quote:

Live each day with wings of faith and roots of hope.

Beautiful salad.

Was able to get to bed around 1 this morning and was up at 4:30.  Then fell asleep around 6:30 till around 7ish.  Been up since except of a half hour power nap around 3.  These steroids really have me wired like they do each week.   Today instead of getting the crock pot out to put my meatballs and spaghetti sauce in, I go the toaster out.  Had a sales clerk at Joann Fabric not listening to what I was saying and was ready to go off on her and Bill stepped in.  Probably a good thing.  Right now I am about as tired as, NOT!  Do have a bit of a rash this evening.  I had a glass of wine earlier so thinking that was what started it.  Drinking, of course, my water to flush it through my system.

So nice not having to plan our week around my Tuesday and Wednesday Cancer Center visits.  We were able to get some running done for a few things we needed without having to hurry before my visits or feeling sluggish and doing them after my visits.  But we know we have 4 to 6 more months of the Tuesday and Wednesday visits along with doctor appointment along the way either at the Cancer Center for me or our regular family doctor.  We just accept as such.

Mom is not coming now until Friday and will spend the night with us.  We are both craving crab legs.  But they are between 10.99 to 12.99 a pound.  Mom can eat about 3 lbs and me probably 2.  Bill isn't so crazy about them.  The cheapest we have found them since living in Florida has been $6.99 a lbs.  And that has been awhile.  Usually sale price is $8.99 per lbs.

We invited Michelle and Gery over for spaghetti tonight.  Gery made the salad for us.  And what a beautiful salad!   When I took the top off the pan there were onion circles, grated carrots, spices of some kind garnishing the top of the lettuce.  Wish I would have taken a picture.  Thanks Gery and Michelle for the salad and bread.  Most of all for the laughter we share!  Great impromptu dinner.

Quote:

Don't count the days, make the days count.

Kackels!

Wonderful news today.  My Myeloma labs come back today.  My M-spike (Para Protein) is at zero.  Not able to measure any Myeloma.  This is a measurement that Bill and I love to see.  And along with that lab result, my IFE showed no monoclonal bands detected.  This test relates to the M-spike.  If the M-spike is excessive, the IFE determines which subtype of M protein is present thus pointing to the presence of Multiple Myeloma.  I sent an email to Desiree (yes, she is still around) to have Abby review.  Told Desiree these two tests make my heart smile.  Abby reviewed, concurred with what I saw and said the results make her heart smile too.  I will be having these lab tests done every 4 weeks.  This will be Dr. Sarriera and Abby's monitoring of how I am doing.  We need these two important (they are all important) lab results to stay as stated above.

I have a few new viewers of my blog so thought I would add the next information in for them. As we know, Myeloma is a blood cancer found in the bone marrow.  White blood cells form as plasma cells.  These plasma cells create antibodies to help fight infections. Multiple Myeloma causes cancer cells to accumulate in the bone marrow.  They crowd out the healthy blood cells.  Rather than produce helpful antibodies, the cancer cells produce abnormal proteins.

My weekend went pretty well.  Coming down off the steroids make me very tired.  So slept a lot Friday, Saturday and Sunday.   Had dinner at Matt and Kristi's Friday night, shop a bit with Michelle on Saturday and just kicked back most of the day Sunday.

Is nice not having to go to the Cancer Center today and tomorrow.  But still have to take my 10 Dex (steroids) today.  That's why I am still up at 12:15 posting on my blog.  Was going to get mom today but she has gout so we postponed till tomorrow if her meds kick in.  Will call her in the morning to see how she feels.

Monday was our support group meeting.  It was the 10th year "birthday" since Ken started the group.  Carmella (Ben's wife) brought decorations that we hung and some center pieces, Cindy (another Myeloma survivor) brought center pieces too,  there were balloons galore, a huge cake and smiles all around from Ken.  I had asked our oncology nurse, Arlene,  if she would contact the IMF (International Myeloma Foundation group that supports our group) and see if they would send a rep to congratulate Ken for hanging in there for 10 years as our leader.  Arlene did and the IMF did.  Ken seemed to be very emotional when he saw her (Anne).  Our speaker did not show up.  We think because of Irma and having to move our meeting out another week, he got his dates messed up.  So we had a nice informal meeting with our Myeloma fighters each speaking.  Just about every one of them said this meeting has been a priority since they joined the group, how much it has helped them and how much each of us mean to them.  Great emotional comments from them as well as our care givers.  Well, Bill did say that he was locking me in my room starting tonight since I take my Dexamethasone today.  Ken ended the meeting saying he had three things he lives by:

Trust in God
Ask for help
Don't be so private

Good advice.  Good group that I am proud to be a part of even knowing the reason we are there.   We are not dying from Myeloma, we are living with Myeloma.  That per Dave another fighter.

My step-mother, Peg, has been on my mind a lot.  She was a wonderful, loving, caring stepmother.  She loved me and my sisters and brothers like we were her own.  Boy, what a time we gave her but she was always there for us covering up things from our dad.  When I see Kristi, Matt and my granddaughters Sasha and Ellie, I think about how Peg would have loved being part of their lives. When I see Kerri, her husband Paul and our 6 other grandkids, Jakob, Kristopher, Chad, Leah, Juliana and Layton, I think about how Peg would have loved being part of their lives.  When I see my niece Michelle and her tribe as she calls them, Jasmine, Jordan, Desi, Kaden, Molly and Kyle, I think about how Peg would have loved being part of their lives.  When I see my nephew Johnnie and his wife Wanda and step-daughter Ashlee, I think about how Peg would have loved being part of their lives.  When I see my nephew Matt, his wife Connie and their beautiful daughter Madeleine, I think about how Peg would have loved being part of their lives.  Step didn't and wouldn't have mattered to her.  Love and miss you Peg.  And oh, my nickname she gave me was Kackels!!!

Quote:

I am here today and today, I would rather smile than cry.

You have a zoo at your house.

Just want to have an update of my end of cycle one days to help me remember.  I finally fell asleep around 12:30 but on the couch with my laptop on my lap.  Bill woke me up around 2 and I went to bed.  Rash was still there but not as red.  I drank so much water that I think I flushed some of it out.  I did sleep then until around 7:30.

Still drinking and still have a rash.  Again, looks more like a sunburn and it's getting less and less noticeable.  Steroids still have me not tired enough to go to bed.  It's 11:45.  Will make myself go to bed soon.

So we have a nest of baby squirrels in the stucco columns in the front of our house.  Bill has been trying to chase them out so he can board up the columns to make sure they don't come back to have more babies.  Michelle came over to pick me up to go to Jeremiah's two nights ago and the momma and her babies sat staring at me.  Made Bill go out and make them go away.

And of course, we have a frog that likes to sing to us at night.

Tonight Michelle came over to pick me so we could go to Bingo.  I went to open the door and there was a turtle walking towards the door.  Really!!  Again had Bill go out before me and make it go away.  Was a big box turtle.  When I got in the car with Michelle she said "OMG, you have a zoo at your house!"

Just some ramblings of my life!  Need those along with my life of cancer posts.

Quote:

Learn from yesterday.  Live for today.  Hope for tomorrow.

Planes.

Today was my final day of cycle 1.  Yippee.  We really had a long wait today though.  Appointment was for 12:30 and never got done until around 3:30.  I think because of Irma, there were a lot of patients that had to be rescheduled.  Finally my oncology nurse, Stephanie, took me back to my room and placed my line in for my port in her room instead of waiting for the lab to do the placement.    My Kyprolis was already there.  She was super busy with two other patients so she tended to them first and then me.  Told her that was okay, we weren't in any rush.  When she took my vitals, I noticed my blood pressure was high.  I usually run 112 to about 128 (and it has been lower) over 62 ish.  Today it was 137/67.  Stephanie asked if I had blood pressure meds to take at home.  No, I do not take blood pressure meds.  She finally hooked me up for my drip which took all of 10 minutes, dripped in some saline taking another 5 minutes.  Cleaned my port with Heparin.  Removed my lines and done.

One of the main reason my blood pressure was up was caused in the waiting room.  There were these people we were seated near, room was full,  that were on their cell phones talking so loud it was infuriating. I threw some daggers but didn't help.  She just kept on.  Then this other couple was playing game on their phones.  Of course, they couldn't turn the volume down.  Bill was trying to read but he finally slam his book shut and slam in on the arm of the chair and when to a table where there was a puzzle to put together.  I sat there for a few more minutes, throwing daggers and saying out loud how rude.  Finally was able to find another seat open and moved.  I tell you what, I was ready to bitch slap someone or throw something at them.  Figured was better to move.  Oh, did I mentioned that I am on steroids?  Also, I was in bed around 12:30 last night and up at 4:30 this morning.  And I am still going.  Very tired but steroids will not let me sleep.  And it's11:30.  Count those hours of not sleeping.

I am having a mild rash again but it's like a sunburn.  No itching or hives.  This rash usually comes the last day of chemo and all those pills the day before.  I am not all that concerned about it since it happened two other times and a day or two it's gone.  Will watch it though.  And I am drinking tons of water to help flush it through.

Do not have to go back to the Cancer Center now for 14 days.  14 days if you count the weekends.  Will be nice not to have to worry about taking part of our days to go to the Center.  Glad to have a little break.  Talked about going somewhere but where?  Irma messed up a lot of the places we would have like to have gone to see.  Maybe next time I have a break we can go somewhere.

During Irma they closed the Orlando and the Sanford airports.  It was eerie not hearing the planes flying about us.  It still is one of my favorite Florida things to see and hear.  Last night I finally heard them and today saw and heard them.  Welcome back planes.

Quote:

Life always gives you a second chance.  It's called tomorrow.

Irma or Jose!

Cycle 1, week 3, day 1.  One more day to go and I will have completed a whole cycle.  This was only done one other time when Dr. Sarriera was preparing me for my transplant.  And it was with the Cyclophosphamide (Cyclops) too.  When tomorrow is over, I will have next week off of my Kyprolis drip and the Cyclops.  Still take the Dexamethasone (steroids).  Bill is so happy about that.  ;)  But one complete cycle!!!!  One complete cycle!!!!

Abby came in to do a preview before I saw Dr. Sarriera.  We discussed my concerns over the immunizations that I have to take soon.  I read in my med literature that I should not be immunized while on any of three drugs I take,  Dex, Kyprolis or Cyclophosphamide without discussing with my doctor.  She explained which one I could and could not get.  Will review this again closer to the time. I, at the request of Dr. Henley our family doctor, requested any X-ray, Pet scan, MRI that would have been a full body scan.  These are needed for her, Dr. Henley, to view for a pain I have been having on my right side.  This pain has been there for years and is progressing getting worse.  I have had various scans of my right side while living in PA over the years but nothing was every found.  Abby was concerned too as the possible cause.  Will post once we know more in a week or two.  Something that I needed to post to help me remember.  Not a post to concern anyone including me.  We discussed 2nd opinions of my treatment for Myeloma.  Again, something to remember but not considering at this time.  Abby asked how I was feeling.  Told her pretty good.  Get the highs, lows, bitchy days, can't sleep, very tired from the steroids.  Just a mild, light rash from the Kyprolis.  Also, probably get the I have had enough, time to sleep from the chemo drip and chemo.  Told her it was nice to sit there talking about all this without crying my eyes out like the last two visits to their office.  Listened to my heart.   Then Abby worried about a small red spot on my chin.  Nothing.  Went to get Dr. Sarriera.

Dr. Sarriera came in smiling.  Shook my hand and looked around for Bill.  Said he had never seen me in one of his rooms without Bill.  Was all good.  Bill had to find a bathroom.  LOL.  He review pretty much what I talked to Abby about.  Was very happy with the results of my labs so far.  3 Myeloma tests to be back in the next 3 days.  Light chains and M-spike.  He examined my head.  Was so happy to see the lumps in the radiation field had all disappeared.  The one I had found 2 days before radiation was over and not in the radiation field is gone.  No other lumps felt anywhere on my head now and I am saying forever!!!  He feels the Myeloma labs are going to come back good as well. We discussed the 4 to 6 month of this treatment, 3 week on, 1 week off monitoring me with labs and seeing him every 4 weeks.  Then Dr. Sarreria's plan for maintenance after these 4 to 6 cycles will be continuing the Dex but decreasing the dosage gradually and continuing the Kyprolis but only once a week.  This is his plan at this time as long as the 4 to 6 cycles continue to be working.  And, again, this will be the plan from where I see it!!!  Ended with, nice to see your smiling face and a not a crying face!

Have I told you all lately that I love my team, Dr. Sarriera, Abby, Desiree, Jessica.  The guy that checks me out.  I need to get his name.  The ladies on 5LP where I get my chemo drips.  The oncology nurses who administer my drips.  Their assistants.  The lab draw individuals and their assistants.  Thomas and his valet parking team.  The pharmacists and the team that works there.  I am blessed to have all these and more in my court.  The "and more" is my family, friends, friends of friends, all you reading this, my Myeloma support group, neighbors all praying for me or sending me positive energy.  There to hear me through it all.  Been a long year and 3 months battling this, up and down, up and down.  I will get there, one day at a time.  One day at a time knowing my treatment is working.  One day at a time to thank God for being with me along my path.  One day at a time to smile because I have yet another one day.  One day at a time to cry if needed.  One day at a time to reflect on life in a whole different prospective.  One day at a time to sew and that's a big one day at time thing for me!!  One day at a time to have Bill as my wonderful care giver.  One day at a time! One day at a time!

Be right back.  Time to take the 11 Cyclophosphamide (Cyclops, chemo pill) to end my 29 pill popping day.  Done.  Glad I am not one who has problems with swallowing pills especially capsules. Done with those until week after next.

Want to end this with news of my beautiful, pregnant Desiree.  I am sure several of you want to know too.  Desiree was not in the office today.  She just was tired.  Can't imagine being so pregnant with twins, so close to her delivery date and have to deal with a hurricane.  Babies are still in tact but she needed to have a rest day.  She informed Abby that she will definitely be in on Wednesday.  I hope to be able to see Desiree at least once more before she delivers.  Her delivery date is schedule for Sept 28th.  Abby or Jessica told us today that once she hits 36 weeks, her doctor will not wait for the delivery date if she goes in to labor before then.  We actually ran in to Desiree last week and shared the elevator with her.  Of course Bill teased her and told her there was a weight limit on elevators.  We talked a bit.  We discussed the possibilities of where and when Irma will hit Florida.  And the possibility of her having the twins.  That ended with Desiree saying very strongly, "I will not name these babies Irma and Jose!"  Love my Desiree!!

Quote:

I am not a burden.  I have a burden which is too heavy to carry on my own.

Water. Generator.

Today was day 1 of week 2 of cycle 1.  Got that?  I think I do now.  Think I messed it up in a previous post.  One more week of cycle 1 and I have a week off.  Well, still have to do the 10 Dex pills on Tuesday.  No relief from those steroids.  Tomorrow I get my Kyprolis and my Zometa.  Saves us from running to the Cancer Center again on Friday.

My appointment was at 9:30 this morning.  Not a morning person you know.  So we had to leave by 8:30.  Was a back up of traffic on Eagle Circle turning on to Red Bug.  Once we got through that, we had all green lights.  Bill said this is just too good to be true.  Well, he was right.  Once we got on Horatio, backed up for several miles to our turn on to 17/92.  And then a back up on 17/92 till we got past Lee Road that everyone wanted to turn on so they could hit I4.  I, of course, was very stressed.  I do not like to be late for anything.  You tell me to be there at 9:30, I like to be there by 9:15 at the latest.  Well, I do have to tell you that when I worked, I was to be there by 8 and was dragging myself in the door at 8 or a bit after.  That's another story.  ;)  Michelle was texting me to help me settle down some.  Thanks Michelle.  We got to the Cancer Center around 9:10, parked and was on the 5th floor treatment area at 9:15.

I was called back around 9:30 for my labs, vitals and my line placement in my port.  Didn't hurt as bad.  Still healing Kara said.  Lab nurse.  Went back to the waiting room to wait for my room to be ready.  Most times, we go right to the room once labs and placement is done.  Was to have Christina today in one of her rooms, 12-15.  Finally around 10:15 we were told by receptionist to go to room 9 only to find our Patrice was our oncology nurse again.  She was the one that we had last Tuesday; that long, long day.  She kept apologizing it was taking so long.  Really like her.  She even came over to our room on Wednesday to see how I was doing.

Patrice come in the room to say hi, ask some questions and say she hoped not to be as long today.  She kept her promise.  Patrice came back in and said my lab numbers were really good.  Even my bilirubin was really down.  Yippee.  No need to contact doctor.  Pharmacy was ready to mix my dosage and would be up soon.  Got the mix and started the drip of Kyprolis.  Finished that and did the saline drip.  Done and out around 11.

Had a low grade headache most of the afternoon and here tonight.  Also, had some aches in my left leg today.  Took the 11 Cyclophosphamide chemo pills around 9:30 PM.  So my 29 pills have been taken!!!

As you know, hurricane Irma may head our way.  Not 100% definite.  We are watching.  Mom is visiting Aunt Betts.  She would be very safe there BUT she on had one week of her meds with her because that's what the med techs gave her since she was only signing out for a week.  So we will need to go get her before all this.  Mom will be pretty safe in her assisted living facility because they are all set for hurricanes.  A lot safer there than here with me and Bill or at Kristi's.  And they have generators.

There is no water in site.  Gery finally found some at Home Depot, really, and bought us 5 cases today.  Bill and I have gassed up the car and plan to stop at Sam's and Publix tomorrow after my treatments and get some stuff to make chili to freeze, manwhich to freeze and maybe get some chicken.  We have plenty of charcoal.  Made a few plans with Michelle and Gery.  They have a generator.  None of those in site either.  We decided we are going to buy one in the winter this year.

Quote:

This is related to my journey.  Hurricane Irma is just a storm we pray doesn't happen.

Once the storm is over, you won't remember how you made it through, how you managed to survive. You won't even be sure that the storm is really over.  One thing is certain.  When you come out of the storm, you won't be the same person that walked in.