Mediterranean Street Food

A little rash has popped up but not one that is bothersome so far.  I read my blog from last year when I was on the Cyclops meds.  Mild rash that disappeared in a day or so.  Mostly hyper from the steroids all day.  Went to bed at 1 PM and slept till 8:30.

I will start next week my next cycle. This is going to work this time.  I am not feeling any new lumps on my head.  Prayers!!!

On the way to the Cancer Center, I would see this small building in the middle of a parking lot.  Finally one we hit a red light and I got to be nosy.  This little building is a restaurant.  It is named Mediterranean Street Food.   Looks very interesting to me.  And to be in the middle of a parking lot.  May have to stop and just see what it's all about.  I know Kristie said she wanted to try the restaurant.  The day she picked was a day they were closed.  They advertise as "Best Parking Lot Restaurant".  May have to try it some time.

Quote:

Believe you can and you are halfway there.

Babies still in tact.

Didn't get to bed until about midnight last night and was up at 5.  Wide awake.  Laid in bed for about 2 hours and then finally got up.  I am saying go back to sleep and my body is saying that's not happening.  Around 10:30, I was done.  Fell asleep for about 45 minutes.  Time to get ready to go get my treatment.  Still tired but body said I wasn't.  So here I am at 10:45 PM, still wide awake.  Dang steroids.

Day 2 of Cycle 1 went by so smoothly you would think I was making stuff up yesterday.  Got there around 2:15, took the elevator up to the 5th floor, 5LP they called, signed in, sat time for 5 minutes and they were out to get me.  First thing was to put the lines in my port.  That still hurts a bit.  Not completely healed they say.  Gave me my room number.  Got Bill and off the room 2 this time.  Rhonda, my nurse, said my Kyprolis was already being mixed in the pharmacy.  Got settled in my heated chair, heated blanket on, feet up, got my iPad out, answered a few text, sent a few text.  And here comes Rhonda with my drip.  Plugged me in, took about 15 minutes, unplugged, plugged in the saline to flush my port, pulled the lines out and goodbye.

Rhonda did discuss my urinalysis tests from yesterday.  There was bacteria in the urine.  Drugs, picked up a bacteria somewhere.  So guess what, I get to take 2 more pills each day for the next 5.  Sulfur.  Have taken them many times before.  Patrice, my nurse from yesterday, stopped over to see how I was doing.  So far all the nurses I have had have been caring and ready to help you know matter what.  They have hard jobs watching their patients receiving drips, some for hours.  Great people at my Cancer Center.

I am done cycle 1, week 1.  Three more weeks to go and I will have completed the first cycle.  I pray I can get through without any set backs.  I want to read my blog from last year when I started Cyclophosphamide, AKA Cyclops.  I did see the other day, it was August 26th of last year but need to read more of the posts to see what side effects I had.  I know I had a rash but it was manageable.

Desiree was able to visit a bit with Bill and I today.  Babies still in tact she said.  I made her a tote for a gift.  Rolled some receiving blankets and put in the tote along with some Ghirardelli chocolates.  Told her the candies were for her husband.  But I don't think he's going to get them.  ;)  She really loved the tote.  I made it with blues, pinks, yellows, whites, polka dots, gray.  I wish I knew how to put a picture on here.  Told her when we were leaving that I probably wouldn't see her again since my appointment isn't until September 12th with Dr. Sarriera.  She walked away saying - oh I will be here.  And you know, I think she might.  I am not ready for Desiree not to be there.  But I know I will be left in good hands.  She has told all of them that I am her favorite and they have to take care of me.  So sweet.

Quote:

I don't know how my story will end but never with you see the words "I gave up."

Do you like turkey?

Day 1 of my new treatment.   We changed the days to Tuesdays and Wednesdays to have better control of days if there were problems.  I still take the 10 Dex (steroids), my regulars, the drip and now the 11 Cyclophosphamide which replaces the Pomalyst.  Here is how my med day is on Tuesdays - 4 morning pills with breakfast (Lyrics, Acyclovir, 2 vitamins), then the 10 Dex (steroids).  Head to the Cancer Center for an appointment usually around 1 or 2 where I get my labs drawn.  Then to my room for the Kyprolis chemo drip.  Next up is my 3 o'clock meds (Lyrica and Statin).  Depending on when we get home, these may be later than 3.  Next, 8 o'clock meds (Lyrica and Acyclovir).  And now around 9:30, my 11 Cyclophosphamide chemo pills (I will be calling these Cyclops).  So let's count.  4, 10, 2, 2, 11 = 29 and that's not counting the chemo drip.   This is just on Tuesday each week for 3 weeks.  The Dex is continual; no break.

Today, Tuesday and every Tuesday during my cycles will be our long day.  Once labs are drawn and sent for testing, the results are sent to my chemo nurse for review.  Once she sees all in order, she will contact pharmacy to mix my Kyprolis drip.  This whole process takes a bit of time.  Once mixed, sent to the nurse and she administers along with a saline drip afterwards.  Some do some of the saline before and save some for after the Kryprolis.  Their preference.  Then we are on our way.

Well, today when my labs came back, they flagged my bilirubin (or as Kerri called it, my billybob).  It was up.  Nurse, whose name is Patrice, explained this could be caused by my meds or a slight infection.  Patrice had to contact Dr. Sarriera regarding this increase to see what needed to be done with my drip dosage.  This again takes time.  And on top of that, I had noticed the last few days of a slight burning when I go to the bathroom.  So an urinalysis was ordered.  Those results, I should know by tomorrow.  Finally heard back from Dr. Sarriera.  Decrease the dosage of the Kyprolis.  She contacted pharmacy, dose mixed, sent to nurse, set up drip and saline.  Finally left about 4. Got there about 12:45. Tomorrow, Wednesday will just be my chemo drip and regular 8 meds.  Chemo drip will be for the 3 weeks only also.  Very confusing I am sure but I got the wonderful calendar from Desiree.

Speaking of Desiree, I asked her if I could come talk to her for about 5 minutes after my treatment.  All set up.  We went down to her floor and asked someone to tell her we were in the waiting room when she was ready.  In about 10 minutes out comes Randi, her assistant, and told us they made her go lay down a bit.  Her stomach was hardening up (early contractions I would say).  Randi said she told her to ask us to wait a bit.  Not happening on our part especially since we are going to be back at the Cancer Center tomorrow.  Please relay this to Desiree.  Not that important.  Randi also told us the babies weighed about 5 lbs each.  Good size.  Never know with twins!  I can't say at this time what I wanted to see her about.  Just in case.  She reads my blog now.  And I will inquire about her tomorrow.

We went over to Michelle and Gery's for dinner tonight.  Yummy stuffed green peppers, mashed potatoes and porcupine meatballs.  They knew we had a long day at the Cancer Center on Tuesday.  I was telling them about my 29 pill day.  Said I only 13 to go when we got home.  Gery asked what do I take them with?  I said water.  He asked - do you like turkey?  Huh?  Well he gives Murphy (their dog) his in some turkey.  Lean turkey.  He realized what he said and we couldn't quit laughing.  Maybe you had to be there.  But I am guessing Kristi, Sandy and Denny quite understand and can laugh with us.

Quote:

Strength is when you have so much to cry about but you try to smile instead.

Colorado Fondue

Today was a fairly good day.  No drugs other than my Acyclovir and Lyrica.  The other drugs seemed to be fading away.  And the rash is faded too.  Bill said I didn't have my man voice this morning so that is a sign of the drugs fading.  Was up at 5:45 AM for some reason.  Just couldn't fall back to sleep so just got up.  Well, actually got on my iPad, checked email, Facebook, messages.

Sandy came over around 11 and we actually did some shopping.  CVS, Bed Bath and Beyond, Staples and Kohls.  Didn't really stay long in any of these stores.  I don't shop like I used to.  Go get what I want and done.  That makes Bill happy.

Got a call from the Cancer Center scheduler for my new dates of my Kyprolis IV drip.   Starts Tuesday, August 29th.  Will be Tuesdays and Wednesdays.  Champa is my schedulers name.  She said this will be for 3 cycles.  Never met Champa in person but sure have talked to her a lot.

Ended today going out to eat with Sandy and Denny to celebrate my birthday (early).  My choice was Colorado Fondue.  I really like this place and wanted them to experience it.  Bill had never been either.  Food was great as was the company.  Didn't get the chocolate fondue dessert as we were all too full.  May have to go back just for that.

Quote:

Hope .  It's powerful.  It's real.  It's all we got.  Cure Myeloma.  

Room in our garage.

Had my appointment with Dr. Sarriera today.  Was a very emotional appointment for me and for Bill. I lost it when he came in to see me.  Told him I felt very anxious, felt very unsure of what was happening to me, felt very scare, felt very upset that this plan now isn't working, felt like I was getting no where.  Dr. Sarreria was very calm and was ready to reassure me that I wasn't to be afraid.  That he has another plan in place.  To put me back on Cyclophosphamide (the chemo pill that I called Cyclops).  This was the chemo pill I took last year amazing as it is starting about the same time.  August 26th last year.  This was the pill I took from end of August to October last year to help me prepare for the transplant.  I did go back and read my comments and saw that I didn't have a reaction from this med.

At that time I was doing what was called CyBordD.  Cyclophosphamide, Velcade and Dex.  This time it will be Cyclophosphamide, Kyprolis and Dex.  No Velcade because that is what caused my neuropathy.  I start on this next Tuesday.  I will be taking 11 pills of the Cyclophsphamide chemo med, 10 Dex (steroids) and then go have my Kyprolis chemo drip.  My drip will be twice a week for three weeks and off one.   The Cyclops and Dex once a week for three weeks and off one as well.

Dr. Sarreria then asked me if I wanted something to help take the edge off my anxieties.  And this time I said yes.  He prescribe Ativan and to only take it on an at need basis.  Also, ask if I wanted to talk to someone.  They have them readily available if I did.  Said no to that at this time.

Did have a bright spot.  My 24 hour urine test came back negative.  No protein.    Which means no M-Spike.  Great news.

Once again, emotional as our day was, we both felt somewhat better when he left.  And in comes Desiree to make us feel even better.  She is such a wonderful, caring nurse.  Hug kind of nurse.  She went over my Cyclops drug (she remembered me calling it that), talked to help calm us down.  I told her about my experience with the after hours nurse and doctor on Sunday.  How I felt I was treated and how unprofessional the nurse was.  She will be speaking to her manager about this situation.  Said if I were a difficult patient, she could see a little of what happened.  But I am not and do not deserve to be treated as such.  Talked about her babies to be and how she was feeling.  At the point now that she just wants to go lay down anywhere, anytime.  Still very cheerful though.  Only one more month.

Bill and I have lived in our home for almost 2 years now.  Will be at the end of August.  We have not had our CRV in the garage.  Just too much stuff in the garage to put a car in there too.  And, oh by the way, it's a two car garage.  Finally, finally there is room in our garage for my car.  Yes, finally.  And the nicest thing is when you get in it to go somewhere it's not so dang hot.  Cools down in a second.

Quote:

Stars can not shine without darkness.

Named after a street.

Heard back this morning from Desiree.  Dr. Sarriera wants me to stop taking the Polmalyst and Dex.  Made me an appointment for 11:30 tomorrow, Tuesday to review with us what we do from here.  Next plan.  I have a lot of faith in my doctor and need to follow his protocol until we get this right.  It's been over a year and I am still battling this with just a little bit of peace of mind I had off and on.  No one knows when this disease will relapse but I sure didn't think it would be this soon.  Nor did Dr. Sarriera.  And to relapse in a different form and more aggressive.  Plasmacytoma.

The lady on the 5th floor that I couldn't remember her name was there last Friday when I went for my IV drip.  When she signed me in, I said I was staring at your name tag because I couldn't remember your name.  Told her about my blog and she was part of my post the other night.  She proceeds to tell me that her name is Elaine.  Then finishes with a story.  Her parents were on their way to the hospital to deliver and still hadn't pick a girls name.  They past a street and saw the name Elaine and like it.  So she was named after a street.

Quote:

Never allow waiting to become a habit.  Live your dreams and take risks.  Life is happening now.

This is my life.

Well, my rash is back.  Yes, it sure is.  Woke up on Saturday morning with a small spot of itching on my head.  Seemed to get worse as the day wore on.  By Saturday night the rash had developed more.  I took a Benadryl and went to bed.  When I got up on Sunday morning, it was worse.  Head was very tender to the touch, ears were red and swollen, rash had proceeded down my neck, chest, stomach to the top of my legs.  Big patches of red, angry spots.

Called my support group number and talked to someone who in turn, said they would have the on call nurse call me back.  She did.  Told me to take 3 Benadryl tablets.  I did and she called me back in about 2 hours.  When she called back, I explained to her that the rash was still there and had spread more.  She said she would call the oncology doctor to see what he wanted me to do.  Finally heard back from her.  I was then to start taking 40 MG of Dex and also take my Pomalyst.  This I did.  It's now 11:30 PM.  Hoping this Pomalyst isn't going to start the rash to spread more or to itch.  We will see.  I have an email in to Desiree to see first thing tomorrow AM for Dr. Sarriera.

This is my life in my journey of having Myeloma.  This is my life that can change so much in a couple of hours or a day.  This is my life the I want to be normal again.  This is my life.

Quote:

Sometimes you get to choose your battles and sometimes the battle chooses you.

Pennsylvania Tomatoes.

Today really went quick unlike yesterday at the Cancer Center.  I was taken back to the lab area to have the lines inserted in my port.  Hurt a little more than yesterday's stick.  Healing up nice they say.  Then back to room 17 for my IV drip of Kyprolis and Saline.  That took about another 45 minutes total.  My nurse in room 17 was Meredith.  Another friendly, caring nurse.

Kara was my lab nurse today.  She was the first nurse I met last year about this time when we were first doing the Rev and Velcade.  Yes, a little over a year ago.  A little year ago this all started.  A little over a year ago we thought we were going to beat this disease in a few months.  And now a year forwarded,  we are starting another battle to beat this disease.  Not with Rev, Velcade and Dex.  But with Pomalyst, Kyprolis and Dex.  This day was my second day.  I will take the Pomalyst for 21 days and then off 7, Kyprolis IV drip will be every Thursday and Friday for 3 weeks and then off 1, and the Dex every 7 days with no time off.  This will be the pattern for the next 4 to 6 months.  Probably more likely 6 months as this relapse of Myeloma I am experiencing is so aggressive.  We are praying this time it is going to work.  This time the lumps on my head will go away and whatever is showing in my blood work again will go back to being unmeasurable.  This time!!!

I am back to saying I want to hear that word I have waited to hear for over a year.  REMISSION!  Kathy, you are in REMISSION!  Not sure how Dr. Sarriera in his nice foreign voice will pronounce the word REMISSION but I want to hear him say it.  And I want it to last for quite a while.  I want to be one of those Multiple Myeloma patient that has 10 - 20 years added to their lives.

Tonight we picked up Sandy and Denny at Sanford Airport for a weeks stay in nice, sunny, rainy and humid Florida.  Took them to the grocery store and then to their condo.  Denny brought an Amazon box out of his carryon luggage.  In the box were Pennsylvania tomatoes.  Yes, real Pennsylvania tomatoes.  And they traveled well.  Had one with our late dinner and was really good.  Rest we brought home.  I sent a picture of them to Kristi and Kerri.  Kristi hasn't made it here yet.  She said she was running down the road from her house in a red dress and high heels to get some of the tomatoes.

Quote:

Life is without meaning.  You bring the meaning to it.  The meaning of life is whatever you want it to mean.  My meaning of life is being alive.

O 68!

Today started my new treatment plan.  Left the house at 11:30 and got back around 4:30.  Two of the hours were driving time.  When we got to the Cancer Center, we went right to the lab area on 1st floor to drop of my 24 hour urine test.  Then up to the 5th floorr for my Kyprolis IVdrip.  Only waited about 10 minutes and was called back to their lab to insert the needle for the drip in to my port.  I told the tech, Miles, I was concerned the incision for the placement of the port was healed enough.  He examined and felt it was.  Cleaned the area, got the needle with tubes hanging off it, asked me if I wanted him to count to 3 and stick it in my skin to the port.  Told him just to go for it.  He did.  Surprisingly didn't really feel much of a stick.  Miles asked me if I want him to leave it in overnight since I was coming back tomorrow.  No, didn't think so.  Just do it again tomorrow.  Drew two tubes of blood and done.  No blood draw tomorrow, just insert needle.

Miles collected Bill and our stuff and took us back to our room.  My nurse for the day was Rhonda.  Who happened to be at lunch so Trisha got the preliminaries done.  A few questions.  Found out I was  "old hat" with the 5th floor.  Explained my labs where being tested and results sent to pharmacy and 5th floor.  Once done, pharmacy will mix my dosage of Kyprolis for my drip.  Chair reclined, heat on, massager on,  warm blanket, IPad out, relax.  Same for Bill.  Oh, she got me a turkey wrap, chips and yogurt.

After a bit of a wait, Rhonda comes in and introduces herself.  Asked if I had taken my Dex this morning before coming for treatment.  No.  She said she really wanted me to have the Dex.  Would email/call my doctor to see if she could have a drip of it before my Krypolis drip.  More waiting.  Finally came in and gave me 10 Dex pills to take.  Doctor preferred the pills.  Thing is, I have my prescription of Dex waiting to be picked up at the pharmacy.  Oh well.  A bit more waiting.  Finally came in with a bag of Saline.  Hooked that up on the pole but not to me yet.  Said shouldn't be much longer.  Meanwhile, hospital volunteer, Troy, came in with red velvet cupcakes.  My phone was ringing, had it turn off, but Troy saw it was ringing.  I told him it was my mom and he decided to answer it.  Was so funny.  He told her he was her long lost son Troy.  They talked a bit.  I could her her laughing.  Gave me the phone and I told her I would call later.  She asked if that was one of my doctors.  Told her yes as a joke.  Didn't get to tell her any different.  I am sure she had a ball with that one with her friends.  Will tell her tomorrow or maybe not.

Kyprolis finally there.  Rhonda hooked it up on the pole then to me.  Mike, another nurse, came in and asked my name and birth day.  Told him and he read it on the bag of Kypolis to make sure it was my meds.  Rhonda started the drip.  10 minutes done.  Really!  She said it was a very low dose since first day.  Be the same tomorrow.  She then stated the saline to flush my port.  5 minutes done.  Unhooked me.  Discussed some possible side effects and when they may occur.  Said tomorrow will surely go quick.  No labs need.  Meds will probably be mixed and ready till we get there since they are the same as today.  I thanked Rhonda for keeping us informed as to what was going on today.  Done.

Got home.  Changed and cleaned up a bit.  Bingo with Michelle at our local Elks club.  They really play some different games.  Kites, Do Dads, Crazy L, X's, Railroad Ties, Baseball Diamonds, Z's, Pick You Own, King and Queen and more.  Fun.  Michelle and I just watch what cards the person next to us is using.  We did talk to her but she wasn't so friendly at first.  Lightened up then.  Michelle actually did win a game on the call of O 68.  Yeah Michelle.  Next week we are taking Sandy with us.  Bill and I will be picking Sandy and Denny up from the airport tomorrow night.  Can't wait!!!

Quote:

You must embrace pain and burn it as fuel for our journey.

5th floor lady.

A little more bad news today.  My labs from the Myeloma testings are back.  They are posted on my health portal.  Sent an email to Desiree for some explanations even though we sort of know what they mean.  She had Abby call me.  So the M-spike is showing 0.  This is a measurement Dr. Sarriera usually uses to measure Myeloma in the blood.  Abby said that it is probably .1 and just not measuring.  Reason she is saying this is because my Lambda light chain and my Kappa Lambda ratios are not good.  These are showing there is Myeloma in my blood that is now measurable according to these ratios.  When the Lambda light chains numbers increase and the Kappa Lambda ratio decrease, this is a indication of Multiple Myeloma.  This is what is happening to my numbers.  We figured as much since I found that lump during radiation.  But didn't really want to hear it.

Dr. Sarreria already had my plan set even without seeing these Myeloma labs.  My plan starts tomorrow, Thursday, August 17th.  I will get my first IV drip of Kyprolis.  Thinking my port incision isn't healed enough to start using it tomorrow.  I am okay with them inserting a line in my arm or hand to use until this heals. I have been stuck some many times I even watch now.  The oncology nurse will examine the port area tomorrow and decide to use or not to use according to Abby.  After the IV drip, I will pick up my Pomalyst (chemo pills) and my Dexamethasone (steroid pills) and start taking them once I am home.   21 days on and a week off for the Pomalyst (1pill); Dex every 7 days no break (10 pills), Kyprolis every Thursday and Friday for three weeks and one week off.  Not sure of the strength of the Kyprolis yet.  They will do labs to check my counts and make that decision then.  The labs will be done on Thursdays.

This treatment plan is going to work.  It's going to move my numbers back to the good level.  It's going to knock this cancer out of me.  It's going to make me smile a real smile, laugh a real laugh.  This is something that Bill has been waiting for.  Something that I want for Bill.

Tomorrow I will go back to the 5th floor of the Cancer Center to start my treatment.  The 5th floor where I had my Velcade shot every Friday and Monday last year.  The 5th floor with Julia, Kara, Tammy and names of other oncology nurses I can't remember.  I do remember the one nurse that I will not go to her station.  That name will stick forever.  The one 5th floor lady I am anxious to see is, um, um, can't remember her name either.  She is one of the receptionists for the 5th floor team.  So pleasant and a great person to be your first contact when you get off that elevator.  I am anxious to see them again but not for the reason I am back.

Quote:

I have learned that it's not what I have in my life but who I have in my life that counts.

Only 3 people.

Tonight was our monthly Myeloma meeting.  I have said this before and I will say again "I love this meeting.  What a special group we are"!  Sharing our successes.  Sharing our failures.  Sharing our personal, dehumanizing side effects knowing that someone else there has experienced or is experiencing the same.  Sharing a few laughs at the disease.  Sharing the part our caregivers provide. Sharing the knowledge of one another.  Sharing the love we really feel for each other.  Sharing our faith.  Strangers brought together by a cancer.  Strangers brought together by Multiple Myeloma.  Strangers from a young age of probably 35 to Don who will be 84 the end of the month.  Strangers battling our battles together.

Ben.  The youngest probably of our group.  Ben.  Who told me I was an inspiration to him several meetings ago.  Ben.  Who was diagnosed about the same time I was in July 2016.  Ben.  Who was doing so good.  Ben.  Now has relapsed.  Ben.  Now has a tumor on his backbone.  Plasmacytoma.  Amazing that Ben and I seem to be following each other with our Myeloma journey.  He will be doing radiation starting this week.  I pray this week for all "the strangers" but mostly for Ben.

Ken is the name of the guy who started the group.  Next month will be 10 years since he first started it.  At the time there were only 3 people and Ken was one of them.  Now I would say there are probably 20 "strangers" that make it every month and another 5 that make it occasionally.  Not sure how many have lost the battle since he started the group but Ken has someone light a candle each month in honor of those persons.  We are so glad we found this group.  Thank you Kristi!!!

Quote:

The best love is the kind that awakens the soul and makes us reach for more.

Words of many.

CANCER  STRONG  STRENGTH  CARING  HOPE  BILL  BELIEVE  CANCER  RESULTS  MRI  KNOWLEDGE  KRISTI  BONE MARROW  M SPIKE  CANCER  CHEMO  PRAY MYELOMA  COURAGE  FAITH  CANCER  RADIATION  KERRI  SURVIVOR  LABS  PLASMACYTOMA  BIOPSY  BRAVERY  CURE  PEACE  PET SCAN  CAREGIVER  FIGHT  FEAR  CANCER  BURGUNDY  DIAGNOSIS  LIFE  CALM  CANCER  DESIREE  TREATMENT  PORT  AWARENESS  TEARS  FATIGUE  ABBY  SUPPORT  DETERMINATION  HOPE  IV  FAMILY  SARRIERA  HAIR  CANCER  FRIENDS  SCAR  SURGERY  CURE  CURE  CURE  CANCER

As I wake up each morning these are just some of the words of many that float through my mind.  Just a few.  The word cancer is ever present and will be there for a long time.  But I will fight this battle with Bill and my team of doctors and nurses till the word cancer is just a memory for me.  Been fighting this for over a year now, time to make that memory happen don't you think?

Quote:

Only in You can I find hope for today and all my tomorrows.  Thank you Lord, thank you.

My drawer of hats.

Today was a rough day for me.  The two incisions really ached and pulled.  Ice and Tylenol seemed to help.  Need a few more days to heal but I am too impatient.  Tried to sew but didn't get anywhere with that either.  I guess I just have to learn to rest when I need to.  I try to make each day count.  Tomorrow is another day.  I have a lot of tomorrows.  A lot of tomorrows to beat this.

I have a drawer beside my bed where I keep my hats.  My drawer of hats.  Hats of many colors.  Hats of many shapes.  Hats of many stories.  Hats of many sleepless nights.  Hats of many.

Quote:

Just because she looks so strong doesn't mean she didn't fall asleep crying.

Been in jail or homeless?

On the road at 5ish AM this morning for another trip to the Cancer Center.  This time to ORMC (Orlando Regional Medical Center) the hospital attached to the Cancer Center.  What, no traffic?  May have seen 30 cars total on the way there.  I know Kristi, you told us not to leave so early.  Was there in record time.  30 minutes to be exact.  This time we parked in the parking garage and sat a bit to pass some time away.  I was to be there at 6 AM for registration.  Finally walked from the garage to the hospital.  Got signed in and sat waiting again.  15 minutes later someone came and took me to a registration desk.  Collected some info, put on my hospital ID bracelet and took me back to the waiting area.  Had to wait on the lab to get me to draw some blood and insert my IV.   Got me for that and back to the waiting area to wait for Intervention Radiology to open for my surgery.  That was another 30 minute wait.  Finally a volunteer called my name and took Bill and I to yet another waiting room on the second floor of the hospital.   He wasn't very friendly or maybe he just wasn't a morning person.  ;)  Waited there about 10 minutes and a nurse came for me.  Told Bill to wait and once they got me prepped, he could come back to my "holding" room.  Did the brush the teeth, swab the gums, tongue, gargle, swab the nose, wash the chest and back, get in to the beautiful hospital gown and their socks.  And this was all done by a nurses' aid for me.  Heart monitors stuck on, blood pressure cuff on, IV cords plugged in.  Talked with the doctor, answer another bunch of questions, talk with assistant anesthesiologist, talk with lead anesthesiologist, signed consent forms.  This all done, waiting for the operating room to be prepared.

Another nurse, another nurse and yet another nurse introducing themselves.  Going to be in the operating room with me.  Time noted, bracelet read, asked me my name and date of birth and what procedure I was having done and I was off.  The first one in the operating room.  Bill said that was great because all the knives were the sharpest.  Got over to the operating room and they were helping me get on the operating table and the nurses were told the doctor had to go to OCC, short for occupational therapy.  I was given the option to just wait there or go back to the holding area.  Wait there.  Nurse had to do an ultrasound of the large veins in my neck to see which on they would put the catheter in that hooks to the port.  These ports are usually put in the right side of your chest.  Well, of course, they couldn't find a vein to use on the right side of my neck.  So left side it was.  Nurse said she was giving me a nice cocktail and that's all I remember.

I have two cuts.  One about 2 inches long in the neck area and one about 4 inches long below that one in the chest area.  They place the port (which is about the size of a quarter) in the chest with the catheter running up to the central vein (that takes blood to my heart) in my neck.  Can I now say ouch?  My neck hurts to move it up, down, around, side to side.  Popping those Tylenol pills.  Been icing it and moving my neck to exercise it some.  Not fun.

So that is done.  Now need to get this chemo started and moving on.  All that starts next Thursday.  Just need to get started.  Need to kill these cancer cells that seem to want to keep popping up.  Need to get me on a plan that works.  Need to get me back to feeling good about me.

Yesterday, the preregistration nurse called me.  Of course, had to answer a zillion questions.  Most of them I had already answered a zillion times.  She acknowledged this when she called.  Still have to asked to verify once again.  One question I was asked was if I have traveled outside the US in the last month.  I have seen signs in my oncologist's office, my radiologist's office, in the bathrooms of the Cancer Center asking this same question.  Of course the answer was no.  But this question has never been asked before, "Have I ever been in jail or been homeless?"  I sort of hesitated when asked only because it took me by surprise.

Quote:

If I could make one wish, it wouldn't be for riches or fame.  I'd wish for a CURE.

I will survive.

I got the call making my appointment for my port insertion.  Intervention Radiology.  Sounds scary doesn't it?  You all know that I am not a morning person but I guess they don't.  My appointment is for Tuesday at 6 AM.  Yep, 6 AM.  The actual surgery time is at 8 AM but I have to be there at 6 AM. We will have to leave here a bit after 5.  That means up at 4 AM.  The ride there shouldn't take near as long as usual.  I don't think there will be much traffic then.  But again, there doesn't seem to be any time there isn't some traffic in Orlando or its surrounding area.  I will be put under for this procedure so I will be sleeping most of the day to make up for the early morning uprising.

Thursday and Friday were not real good days for Bill or me.  Thursday, of course, was the day of my doctors appointment and we had to digest more disappointing news.  Neither one of us got a lot of sleep that night.  Friday morning it hit me again.  Then I looked in the mirror at my head where the radiation was targeted.  Well, Dr. Nanda was right when he said the radiation would continue to work for a bit.  My hair.  My hair in the area of the radiation had almost all fallen out.  My hair.  My hair, even though it was only maybe 1/4 inch long, was almost all gone where the radiation was administered.  A nice large area of a bald head was very visible.  A large bald area of my head.  Bald.  Very upsetting even though Dr. Nanda said this would happen.  Very upsetting to see a large bald area and yet see hair growing on the other parts of my scalp.  Hair that is once again 1/4 inch long.  I am now praying the hair on this bald spot will grow back again.  Dr. Nanada said there is a small percentage of people whose hair doesn't not grow back in the area of the radiation but I choose not to be among that percentage.  I choose to not have to wear a wig.  I choose not to have to wear a hat or scarf forever.  I choose to have hair again.  I pray this bald spot is just for the time being.  So many tears Friday morning.  So many.

Remember the song I will Survive by Gloria Gaynor?   Well, I heard that song the other day and I thought some of the words were being sung to me.  Not all of them of course but some of them.  Like:

Oh, no, not I
I will survive.
Oh, as long as I know how to love I know I'll stay alive
I got all my life to live 
I got all my love to give
I will survive.

Go on now, go.  Walk out the door
Just turn around now cause you're not welcome anymore.

I will survive.

Like I said, not all the words.  Just these few.

Quote:

It's not about bravery.  It's about what I need to do to win my battle against Multiple Myeloma.

Liquid nails.

Well, had my doctor's appointment with Dr. Sarriera today.  First it was to the first floor for labs and then up to the 2nd for my appointment.  This appointment was a follow up after my radiation with
Dr. Nanda and team.  We had a feeling it wasn't going to go so well because I found another lump on my head.  This I found about 2 days before my radiation treatment was over.  However, I didn't mention it to anyone, not even Bill (told him this morning).   Was hoping that it was in the line of attack for the radiation even though I knew it wasn't.  It started out the same as the others.  Small hard lump.  Pain around the perimeters if you touch it.

Dr. Sarriera came in the room with his usual smile.  Asked me a few questions and then talked about examining my head.  At this time, I told him about the new lump.  The smile became a look of worry.  He examined the area of my head where the radiation had attacked.  Then the new lump.  Almost immediately he said he agreed with me that this was a new area of cancer.  He then said he had plan on discussing my maintenance plan with me but now he wanted this new plan put in to action.  Just that quick, his mind shifted from one treatment plan to another.  No hesitation, no let me go to my office and think about this, no come back in a week and we will have something worked out for you, no look of of, what am I going to do.  Just rattled of his treatment plan for this new set back.  After he discussed the treatment, he said this is very unusual to come back so quickly but this is a very aggressive cancer.  I told him I really hadn't plan to coming in today and hearing "it's back"!  I had hope to come in, talk with him and leave with a smile on my face, not a tear stained face.  He said he had hope for a better visit too.  Then we went over the treatment plan again.

I will be going on a chemo drug called Pomalyst (would have been the same drug if I was just doing maintenance).  This I will take for 21 days and then have a week off.  This is a cousin to Revlimid but hopefully no rash.  Then I will be going to the Cancer Center for a IV drip of a chemo med called Kyprolis (Carfilzomib) every Thursday and Friday.  This too will be 3 weeks on and 1 week off.  I will be getting a port put in my chest to encompass this drip.  That procedure for the port will probably be sometime next week.  Will be done at ORMC (hospital attached to the Cancer Center).  Will be put under for this procedure.  Then I also will be taking Decadron (Dexamethasone) which is a steroid.  I have taken this before.  That I will take weekly.  No break.  This regiment will continue for 4 to 6 months.  Probably most likely be for six months he said.  I will monitored with labs during the treatment.  Dr. Sarriera also mentioned if we find out for some reason this treatment plan isn't working, there are several others drugs out there to try.  He always seems to be me to be so confident in his decisions.  Never once has he said that he knew something wasn't going to work.  Again, I said I wasn't expecting all this again after a year of battling this Multiple Myeloma.  He did say "I know sweetie, me neither."  That along with a hug.  This all will start the 17th of August.  He wants to give the radiation more time and to make sure all side effects are done.  Haven't had any that I know of other than a few days I felt fatigued in the afternoon.  AND the biggest one, I have lost almost all my hair in the area of attack from the radiation.  AND there is a chance it will not grow back.  This does not make me happy and I will be honest, I have shed a few tears over this too.  And sure I will again.  Not a pretty site.

Desiree then came in with all the info printed out for us to read.  Went over my schedule of drugs again.  She is making a calendar to help with the days of the meds etc.  I have to say that when she walked in the room, as upset as I was, I had to chuckle.  Remember she is pregnant with twin?  I don't think I have every seen anyone's belly that big.  Whoa!!  She even has a harness strapped around her shoulders and back to help hold up her belly.  No kidding.  She is so happy go lucky though.  Her scheduled C-section is September 28th.  I will be surprised if she makes it that long.  Said she will work up until that time.  Will have a hard time dealing with some of my issues without her there to help me through them.  I know her temp will be there but not the same.  Desiree said she already told her (Denise) about her patients and how they are treated by her for their special needs.  You go, Desiree.

Am I upset over all this?  I sure am and will be for a bit.  I will scream, cry, kick and be angry once again as I was 1 year ago.  I sure will.  But I will continue to hope and pray this will be my final treatment.  I will continue to hope and pray that this treatment will work and I can move on to maintenance.  Something I never got to try.  Right now, I am tired, upset and so disappointed.  I know I will carry on as I normally do but that may not be for a bit.  Right now, I need to be upset!!  So bear with me a few days.  Let me talk and be mad.  But please continue to pray that this all soon calms down for Bill and me.  We need it and appreciate it.

The cream the radiation team told me to use on my scalp after my treatment is Aquaphor.  I currently use Cetiphil and asked if I could use that till I got some Aquaphor.  No problem.  So I was in no rush to get the Aquaphor and I finally got some today.  I laid it on our island.  I grabbed it a bit ago to put some on my head.  So glad I looked before I did because I actually picked up a tube of Liquid Nails instead.  Hey, who knows, maybe the Liquid Nails would have made my hair grow back.

Quote:

No matter how good or bad you think life is, wake up each day and be thankful to God for your life.  Someone, somewhere is fighting to survive.