Smile

Usually wake up in the morning with Bill saying "You getting up soon Sleeping Beauty?"  Or Tommy staring me in the face.  This morning I slept in till 9:30 from 9:30 last night.  Day after treatment.  Bill and Tommy knew I needed that extra time.  I am happy to say there were no chills again last night.  Felt a little cold for a bit but bundled up in my warm pjs, put my fleece hat on (thanks Sandy) and crawled under the blankets.  Warmed me up.  I was concerned that I would get the chills since I felt a bit cold.  But not.  I did take my two Tylenol.

Got the call for the appointment for my biopsy.  It's May 3rd.  Be there at 9 AM.  Nothing to eat or drink the night before from 12 AM on.  Will be a light sleep.  But me, I will sleep the rest of the day.  Have to get this out of my system because we have company coming for CA.  So excited.  Can't want to meet my great niece.  Will be nice to see the others too.  :)

Tomorrow we go to have Bill's head checked again since his surgery.  Looks good.  Healing up nicely.  He has another one or two on his head that they will freeze off tomorrow as well.  We are glad they are not slicing them out.

The other day I finally played in the dirt and planted some flowers that I was growing in a pot.  I had my boots on because wanted to make sure if I stepped on a Floridian critter, I was protected.  :) Got them all planted and will have to wait to see if they grow or if birds or squirrels rip them out.  Chased two black birds away from there today.  I just want some sunflowers.  When I was about done, Bill made a remark that brought a few tears to my eyes.  He said "Makes me smile seeing you planting flowers once again."  And it made me happy to be able to do it.

Quote:

The richness of life lies in the memories we have forgotten.

Yellow.

First I made it through Tuesday's Kyprolis drip without any chills.  Yeah.  That was wonderful.  Went to bed early, well early for me, and slept until 10 AM Wednesday.  Up until around 2 PM and slept again until 5:30.  Back in bed around 11.  Then even had trouble getting up at 8:30 this morning.  Chemo will do that to you.

My Pet Scan results have been back in my portal for a few days.  Bill and I tried to make sense of them.   We had an idea what they were saying.  I contacted via email, Dr. Sarriera's office asking for him to read the results and let me know what was they meant.  The response I got back was Dr. Sarriera will discuss with you at your appointment on Thursday.   Not his normal response.  Tried to tell myself that the person who read the email, thinking it wasn't Desiree, didn't really tell him I was concerned.

Today is Thursday.  My appointment was at 11:45.  Dr. Sarriera did his exam of me then said "let's discuss your labs.  All looks good except your Lamda light chains.  They are up and concerning to me.  Last time they were up was last August when you found the lump in your head during your last radiation treatment.  Now on to your Pet Scan.  There were a few things that were not concerning.  Nothing on your scalp.  However, there was an increase of soft tissue to the left of the thoracic spine. This may indicate Myeloma especially since all of your Myeloma has started in your soft tissue."
Dr. Sarriera showed us the Pet Scan and the area of concern.  Then "I would like to have this area biopsied.  You will be put in a light sleep, area numbed and biopsy performed."

Not what we wanted to hear but figured it would be something.  Up and down.  Up then down.  Seems we can't get a break for very long.  We try to be happy but know around the corner, down.  That's the way my disease operates.  This ugly, incurable disease.   This incurable, ugly disease.

We discussed my cough, me telling him I figured it was allergies.  He said it may be the inflammation of the soft tissue leaning against my diaphragm.

We also discussed Bill and I going to Moffitt for a second opinion since I have had several relapses since my transplant.  Dr. Sarriera is going to make a recommendation to get the ball rolling.  Not sure when that will happen.  We will go even if the biopsy is benign.

My next appointment is May 15th with Dr. Sarriera unless the biopsy is done and back before then.

When we go to the Cancer Center, we hit a lot of lights on the way.  Green, yellow, red.  Today I told Bill he just went through a red light.  He said, "It was yellow when I saw it!"  A little bit of a Floridian driver would you say?

Quote:

One day at a time.  Do what you can, do your best.  Let God handle the rest.

8 O'Clock

Seems we can't have good news last for a long time.  Been told was in remission and put on a maintenance plan during February.  Have had a few weeks of feeling pretty good but never let our guard down.  Myeloma labs were good.  M spike still zero.  But it lurks in my blood even if it's not measurable.  Myeloma is treatable but not curable.  Words that will always haunt us.

About two weeks ago I felt a small lump on the perimeter of my crater.  This lump did not at the time hurt anywhere when I touched it.  The other lumps I have found felt like a bruise feels when I touched it.  Then about 3 or 4 days ago, I noticed it did feel like a bruise in certain areas.  And I noticed it was getting a bit larger.  At that time, I told Bill about it.  We decided that I should contact Dr. Sarriera.  I did on Monday but I know he isn't in.  Also, knew that whomever was answering the emails was not Desiree.  Just not the same urgency she gives.

As a result of my email, Dr. Sarriera wanted a Pet Scan done before my appointment with him next Thursday the 19th.  That Pet Scan is scheduled for tomorrow the 13th.  Be there by 12:30 to access my port.  Then they will put in the dye and I will sit and wait for an hour.  Then the Pet Scan.  Of course, I will be taking an Ativan to be able to go in that machine.  Ugh.  Just thinking about it know makes me anxious.

Not sure when the results will be back but I know it will hit my on line portal when they send it to
Dr. Sarriera.  I will be watching for it.  I will contact his office to explain to me what it says and will not wait until my appointment on the 19th to discuss.

We are praying that it's not Myeloma once again eating away at my skull!!!

I am sure some of you have heard of and maybe even use 8 O'Clock coffee.  I do not drink coffee and haven't for years.  Bill still does.  Publix (our main grocery store) has it on sale quite often for B1G1 free.  And I usually have coupons for it.  This coffee always makes me think of my great grandmother and grandfather.  This was the only kind they would use in their percolator.  This was not an electric percolator either.  Anyway, I had a flash back the other day when Bill opened a new bag.  Attached to the bag was a long tie that is is used to close the bag.  Seeing this tie, I saw my great grandmother using them to "roll" her hair.  Rolled her hair around the tie and bent the ends of the tie in to secure them.  She mostly did the front of her hair.  What a great memory of a great lady that I loved dearly.

Quote:

Courage is being afraid but still going on anyhow.

That cancer thing.

Tonight was our Myeloma IMF (International Myeloma Foundation) support group meeting.  I have said this several times but here it comes again - I love this group and go away feeling so happy to be a part of it.  The once a month elated feeling.  The once a month knowing other people feel the same way.  The once a month sharing my story once again.  The once a month listening to others stories even though we have heard them last month, the month before that and the month before that.

Ken, the founder of this group called me last week and asked if I could bring some table decorations. It would be Arlene's birthday and he wanted to surprise her with a cake, balloons, banners, flowers.  Arlene has been with Ken growing this group for 9 years.  Ken started it 10 years ago.  Arlene is an oncologist nurse at the Florida Hospital.   And she was surprised.

Also tonight was the last night for another member.  Bill, also has been supporting the group for almost 9 years is leaving.  His wife died 10 years ago from Myeloma and he sought out the group to help with his grieving of her.  And to share her positive attitude during her journey with Myeloma.  He has recently remarried, sold his home and they are moving to the villages.  There are two Myeloma support groups in the area where he is moving.

And then we have Cynthia who was featured in a magazine (sorry, forget the name) for some paintings she did.  She won first prize and will be entering a national competition.   Go Cynthia.

Our speaker tonight was a counseling therapist.  Wendy, specializes in marriage and family counseling.  Tonight she talked about creating a personal wellbeing when living with cancer.  I felt that some of her speech was directed right to me.  I am sure others were feeling the same as I watch the heads nodding, the look on their faces, the word "yes" being said ever so quietly.  Things like - write out your feelings, thoughts, experiences (like I am doing now and have been doing for over a year and more), talk to supportive family and friends who have a space for you and will listen, share your journey with others, help others through their journey.  Then there were things she said that were directed to me (and others) that I need to work on.  Things like forgive yourself and others, speak up and say a very clear NO or YES, release places, people, experiences that drain your energy.  She hit a nerve here and there and not necessarily always a bad one.  Good speaker.

Time to go around and tell our stories.  We had a new member tonight.  Del was his name.  He is really afraid of this disease.  His questions where flying here and there.  His biggest question was should he have a transplant.  Someone answered it quite well.  It depends on your age, health and if your treatments are working to get you to that point.  Each of us has a different level of Myeloma so each of our transplant experiences will be different.  Felt really bad for him.  When it was my turn, I told my story.  Then when I went to introduce Bill, I got very emotional for some reason and almost cried when I said he was the best ever caregiver.  Bill actually took it away from me (thanks) by saying one of his funnies.  Something about me on Dex.  

We had a chance to ask questions or just general comments to our speaker.  Ken, our leader, said that he has several siblings that alway use the word sick when talking about his cancer.  He despises that word and asked them not to say he is sick.  Wendy asked him what he preferred them to say.  He said he asked them to say "that cancer thing"!  It did bring a few chuckles even though he was serious.

Quote:

Cancer is a powerful teacher.

2,044

Just a bit of chills last night.  Took Tylenol about 8.  Shortly after 8 the chills started.  Not like the first and second weeks.  Didn't get the shakes.  Went to bed around 9 - 9:30 and slept until 10 this morning.  Got up with a groggy head, still fatigued and sinuses hurting.  Did a few things and laid back down around 2 till 4.  Hate these days but know they are going to happen.  I am off until the 17th.  Yippee.  By Saturday I should be feeling a little normal.  Then each day gets better and then it's time to start over again with Kyprolis.  

I have finished my second round of my maintenance drug.  Got the shakes under control I think.  I see Dr. Sarriera on the 19th.  Had my Myeloma labs drawn yesterday when they drew my regular labs.  The nurse I had wouldn't draw them till she talk to Dr. Sarriera's office because it said one week before his visit. Yesterday was more then two weeks.  But since next week is my week off, I asked for them to be drawn yesterday.  She got the permission from Desiree.  Then she inserted my lines in my port.  Tried to draw blood.  Nothing.  Had me take deep breaths.  Nothing.  Had me place my elbows on my knees.  Nothing.  Used some sort of a suction thing.  Nothing.  Laid me and my chair down.  Asked if I have had trouble before getting my blood to draw?  Only once at ORMC but never there on 5LP.  Finally she was able to get the 9 tubes needed for the labs.  Finished up and sent me to my treatment room.  I will be watching the Myeloma lab results as they come in.  Can see them on my portal.  We pretty much know the real important ones.   Which could be good or bad.  ;)

Bill had a doctor's appointment to follow up on his surgery on his head.  Doctor said it was healing as expected.  To continue cleaning twice a day with peroxide mixed with water, apply prescription cream and bandage.  We go back in a month.  The no stitches way of healing is quite different.

Looking at my portal today for my lab results, I noticed there were 2,044 entries of lab results.  These entries started 6/29/2016 when I was first diagnosed.  Almost 2 years ago.  Almost 2 years ago.

Quote:

When you think you have exhausted all possibilities; remember this, you haven't.