A special dedication.

Well, my "planning" appointment for the set up of my radiation is Monday, July 3.  Nice big bang for the 4th huh?  And the tentative date to start radiation is July 10th.  My homework assignment from Dr. Nanda was to have my head shaved before my "planning" appointment.  I guess I don't want to get a bad grade for not completing my assignment, so I made an appointment for Sunday to have my head shaved once again.  As some of you know, I don't remember much about the last time but I am sure I will remember this time.  I know it will grow in again but this makes me nauseous.  Just had enough hair to run my fingers through it.  Maybe I will get a fake tattoo and put on it for the 4th.  

Was reading some of my old blog posts and came across this special one.  I wanted to share Marc's words he wrote and dedicated to me.  Enjoy this post from July 27, 2016.  

Wednesday, July 27, 2016

Mom, did you read Marc's FB post?  Not yet Kristi why?   Well, it is truly written about you.

And she was right. This is for and about me written by a very special and loved young man.   Truly amazing.

Thanks Marc. 

In The Beginning

By Marc Curwood

(a special dedication)

It was He, who knew,

A real beauty inside and out.

A daughter, sister, wife, and a mother of two;

Praise the creator with a mighty shout!

Mysterious ways and hard times,

His hand reached out to you.

The one who announced magnificent signs;

A fraud to some and to some a hero too.

Spoken word with thoughts of my dear friend;

Love is the first word that comes to mind.

Always thinking of others until the end.

Like a precious metal, a rare find.

To go walking after midnight,

Superstitious along the way;

Over the railroad track, fingers crossed tight,

Live in the moment given in each day.

The time is here to be brave.

Rejoicing in His every delight.

With friends and family all around to rave,

Your spirited heart will win this fight.

In the beginning, He gave us a glance.

A peculiar remedy of our place within;

Life is unruly but we can’t forget to dance.

Him, you, us… equals win!

One love †

Marc

The beginning.

One year ago today Bill and I first heard the words Multiple Myeloma.  One year ago today our family physician called us to come into his office immediately.  Seemed some x-rays of my head had been miraculously found.  X-rays that were marked STAT.  One year ago today that family physician told us I had Multiple Myeloma, a blood cancer.  One year ago today that family physician told us to go home and get my affairs in order and don't be afraid to call Hospice.  One year ago today we called Kerri and Paul and told them that I didn't have a long time to live.  One year ago today Bill and I walked into Kristi and Matt's house in disbelief.

One year ago tomorrow, the 29th, we met my oncologist Dr. Sarriera, Abby and Desiree.  Dr. Sarriera and Abby explained what they saw on the X-ray that pointed to Multiple Myeloma.  Explained what tests would be done to confirm if it was Multiple Myeloma.  These tests all came back abnormal.  It is Multiple Myeloma.  Thus, the beginning.

So much has happened this last year.  I must have had 200 or more tubes of blood drawn, x-rays, MRI's, Pet Scans, bone marrow biopsies, chemo injections, chemo meds, steroids, drips to help my bones, lost my little girl Chai cat, stem cells removed, stem cell transplant, 30 sad days away from our home,  days of no energy, days of doing nothing but sleeping, days of not eating anything but Bob Evans mashed potatoes, days of drinking nothing but Power Aid, days of only being able to walk two houses past ours, days of trying not to look at myself when I passed a mirror and did I mention 200 or more tubes of blood drawn.  And during this last year I have received cards, letters, books, slippers, pjs, texts, emails, phone calls, prayers, positive energy.  All of these I couldn't have done without.  The caring you all have showered me and Bill with has been great.  I thank each and every one of you.  And last but not least, we appreciate the wonderful support and friendship we have received from Michelle and Gery during this last year.  So glad we chose them for our neighbors.  😘

Dr. Sarriera had a plan for me and still has a plan for me.  I trust him immensely.  Because one year later Bill and I are hearing the words Multiple Myeloma again.  Again, we are in disbelief but know a lot more this time about Myeloma and it's ugliest.  This time the Myeloma is call plasmacytoma.  I have once again gone through an MRI, Pet Scan, x-ray, bone marrow biopsy and of course lots and lots of blood draws.  The plan this time will be radiation.  This time we weren't told to get my affairs in order and not to be afraid to call Hospice.  My team of doctors and nurses have a plan.  My team of doctors and nurses talk about how far the treatment of Myeloma has progressed.  I love my team of doctors.   God moved us here for a reason!!

Today I stood in the ocean watching the waves crashing on kids, moms, dads, grandmas, grandpas.  Today I stood in the ocean shedding a few tears for myself as I reflected on my last year and what I am about to encounter again soon.  Today I stood in the ocean saying a few prayers for me and Bill to be able to deal with this next few weeks of treatments.

Quote:

 Every day may not be good but there is something good in every day.

Never noticed that before.

Today we met with Dr. Nanda, Radiation Oncologist.  He was once again very soft spoken, caring and concerned that I completely understood what was going to happen next in my treatment plan.  He also discussed all the tests I had, confirming what Dr. Sarriera told us.   No other Multiple Myeloma found anywhere else in my body or bone marrow.  Just the area in my head where the tumor was removed.  The plan will be radiation for 10 days total.  2 five day weeks.  The type radiation will be electrons.  This is the plan that was discussed and determined by the panel which included all three of my doctors and Abby.

Then he went on to explain the next appointment is what is called a planning appointment.  First before that appointment, I need to shave my head.  The whole head.  That was a big slap to me even though I had thought I would probably have to do this.  Reality I guess.  What happens during that appointment also has me anxious.  They will be making a mask to fit over my face to wear during the radiation treatments.  This mask will be fastened down to the table to keep me from moving my head.  (Deep breathing here as I type, tears falling in the office)!  Also, during this visit, Dr. Nanda will be marking my head for the area to be treated.  Louise, you are familiar with these markings.  They will also do a cat scan of my head to make sure the markings are in the correct area.  (More deep breathing here).  They will also make some artificial skin, called bolus, to get the mask up so the radiation only penetrates the surface of my head and not the brain.  This appointment is also considered a simulation appointment.  One that will be similar to the real radiation treatments.  Breaking me in I guess.  Dr. Nanda must have noticed me wringing my hands and saw the look of fear in my eyes.  Bill was telling me to calm down, that it will be fine.  Dr. Nanda started talking about giving me another prescription for Atavan.  Which I right away, I agreed with!

He then asked if we had any questions.  Yes, what are the side effects?  Mostly fatigue, some people experience vomiting and a headache.  Another side effect will be the changes in the skin where the radiation is administered.  May become irritated, blistered, scaly,  Another side effect is hair loss.  Since I will be shaving my head, I won't have to worry about that.  There is a 1% chance in a blue moon that the hair may not grow back in the area of treatment.  I asked what the machine looked like.   Was it inclosed, open???  Will see that during the planning appointment.

Dr. Nanda then shook our hands and on the way out the door he said - don't forget your homework before your planning appointment!  Shave your head for me.  My nurse will be right in with paperwork for you.  More tears.  Hard to keep them back.

Nurse came in with papers to be signed and a packet of papers for us to read at home.  She explained the next steps again.  Gave us some info on ointments to use on the spot of treatment.  I have to meet with Dr. Nanda every Monday after my treatment.  Will be hearing from Angel soon.  She will be submitting my information to my insurance and once they get approval, I will be contacted to schedule an appointment for planning/simulation.  Once that appointment is final and all requirements met, they will schedule my radiation appointments.  Signed papers, got the script for the Atavan and we were finished.

Done.  Another wall to climb.  Soon to be a year since I was first diagnosed.  I had some of those feelings again from a year ago as we left the Cancer Center.  Feelings of what did I just hear, this is happening to me why?, unbelievable!  Add to those feelings ones of, not again, how will I get through this now, why me, why so soon, chemo and now radiation and more thoughts bringing more tears.  I am strong and I am positive but right now, I feel beaten down and not feeling strong and positive.   Right now I am hurting.  Right now I am trying to forget what I just heard once again less than a year later.  Right now I am trying to just be me without cancer.  Right now!!  Thank you family and friends for listening to me rant right now and still caring.

Bill and I have been traveling to the Cancer Center for almost a year now.  Mostly taking the same route each time.  It's amazing though how many times one of us will see something that we have never noticed before.  Like a very small restaurant sitting in the middle of a parking lot, a hotel near down town, a women's health center in the middle of the highway.  We love Florida and not a day goes by that I don't thank the Lord for all that He has done for us since we first decided to make our dreams of moving here come true.  There is a reason for everything.

Quote:

Strength doesn't come from what you can do.  It comes from overcoming the things you once thought you couldn't.

No 3rd floor!

Today was the appointment with Dr. Sarriera to discuss my results from my x-ray, Pet Scan, MRI and bone marrow biopsy.  And what wonderful news it was.  News that Bill and I have been very anxious about over the last two weeks.  NONE of my tests showed any Myeloma anywhere else in my body or bone marrow other than my head (which we knew).  Thank you Lord for hearing our prayers.

Dr. Sarriera showed us, and explained, the info on the different tests.  Also showed us the Pet Scan of my skull and where the cancer is located.  We told him we could see some of the information in my health portal but really didn't understand what it was saying.  Also, Bill said the last two weeks have been awful for us not knowing.  Dr. Sarriera told us that we should have called.  They would have explained each test to us.  Never feel that we have to wait again.  You know me, I don't like to bother anyone.  Not a viable excuse.  Just call.

My case was brought before the review board of several doctors (and Abby).  Three of the doctors were mine.  Dr. Sarriera, Dr. Nair and Dr. Nanda.  They all agreed that radiation would be the way to go.  Dr. Sarriera said several times during my appointment today that radiation works well for plasmacytoma, the type of Myeloma I now have.  We asked him have often he sees Myeloma come back this quickly after treatments.  His answer was very rarely.  Usually they see it in maybe 3 to 4 years.  He said that with the chemo treatments I had before the transplant and the high dose chemo treatment of Melphalan right before they gave me back my stem cells, usually prevent most from a reoccurrence so soon.  Bill and I say that maybe it happened so soon because we are to get over this hump and back to normal; whatever normal is.

My original crater as I call it, is now sinking deeper in my head.  This started happening after my surgery to remove the lump for a biopsy.  It's normal feeling in the morning but as the day goes on, it sinks deeper in my head.  Dr. Sarriera said he feels this was caused by the surgery or the cancer could be eating away underneath the original crater.  Again, he expressed his feelings about radiation curing all this.  I, then, asked how will we know if the radiation worked??  Well, guess what!!  I will have to have another Pet Scan in about 3 months.  Oh boy!!  Bill has 3 months of me stressing over that.  ;)

I go back to Dr. Sarriera in six weeks.  He wants to give me some recovery time from the radiation first.  Then we will discuss another chemo treatment for my maintenance program. This drug is called Pomalidomide (generic name for Pomalyst).  He said this is a sister to Revlimid.  Made by same company.  To be continue on this visit.

Tomorrow I have an appointment with Dr. Nanda to discuss the details of the radiation since that is the way we are proceeding.  One thing that I know for sure is I will have to have my right side of my head shaved for the radiation.  And my hair was growing in so nice.  It's probably an inch and a half long now.  Depending on how much he tells me I have to have shaved as to whether I will just shave the whole head again or not.  Have thought about this but haven't really discussed it with Bill.  I remember Dr. Nanda saying I will lose my hair again if I have radiation but don't remember if he said just the right side or the whole head.  Will discuss that with him tomorrow.

After my appointment with Dr. Sarriera, I was scheduled to get 5 more immunizations.  That appointment was for 11:15.  Never got done with these until after 1.  The pharmacy had to make up the syringes.  The nurse told me they were really busy.  Anyway, once I went back to the area where the shots were given, she had to open each bag containing the syringe, scan it, scan my name and log information in to the computer.  Then wash her hands,  put on gloves and give me the shot.  Off came the gloves, open the next bag, scan it, scan my name, log info in to the computer, wash her hands, gloves on, and give me the shot.  This she did for all five shots.  Put one in my stomach, two in my arm and two in the hip area.  My arm is very sore.  Very sore!!  Since some of these are my "baby" shots, Kerri said - no wonder babies are cranky!!!  And Kristi ask if I took a Tylenol before I left.
I received the Polio vaccine, DPT (Diptheria/Tetanus/Pertussis), Hepatitis B, Pncumococal vaccine and the Haemophilus Influenza Type B vaccine.  These are all give in very low strengths as my immune system is still not completely back to normal.  I will receive all 5 of these again in 6 months.

Finally finished.  Bill and I stopped at a new restaurant in our area called Culvers.  Pretty good.  Will go back there again.

So we were getting on the elevator at the Cancer Center along with two other persons.  Bill asked them what floor they were going to.  One said 2 and the other said 3.  Bill pressed the 2 and started to press the 3 but it wasn't there.  The guy comes over looks too and starts counting across the buttons.  No number 3.  So we all got off the 2nd floor.  We have been coming to this Cancer Center for almost a year now and never noticed there wasn't a 3rd floor.  A nurse got on as we were getting off the elevator and heard us laughing and joking about no 3rd floor.   She explained that it had something to do with the building being attached to the hospital and the way things are lined up when they were building it etc.  Bill and I listened to her and thank her for the information while the other two guys just walked away.  😀

Quote:

Let your faith be bigger than your fear.

Strong lady!

Our support group meeting was Monday night.  We had a covered dish with chicken being provided by Ken (the founder) and Arlene (an oncology nurse at Florida Hospital).  Started off later than usual so we had our speaker give his presentation first.  His topic was on transplant verses RVD (Revlimid, Velcade and Dex).  Seems the numbers are pretty well matched.  Transplant tops the curve though.  Still the way to go for longevity.  Still wonder where my longevity went??

As usual, we went around the room after we had our picnic as Ken called it and told our stories.  As I have said before, several of them we have heard before but we all listen like it was the first time we heard it.  This group is a very caring group and is interested in the others' stories.  We had a few new Myeloma guests.  There were several who had a very hard telling their stories without crying.  One lady was very healthy, no problems, just got back from an Alaskan cruise and a trip of hiking somewhere in the mountains.  Started with her knees swelling and long story short, was diagnosed with Multiple Myeloma.  Has been challenged with it for several years now.  Another lady, Candi, just got out of a years stay in the hospital.  She had two broken legs and a broken neck.  These breaks caused by the weakness of her bones from Myeloma.  Another gentleman that was an entrepreneur, traveled, young, now said he works part time and that is taking naps because he is so fatigued from his meds.  Another guy that on top of his Myeloma, has just been diagnosed with prostate cancer.  One older lady that has been in remission 2 times.  This time 2 years.  Some on maintenance chemo drugs, some not.  But one thing I can say, they all are there because they feel this group lets them be themselves.  Lets them feel sorry for themselves, lets them sing praises of themselves, lets them cry if they need to.  Lets them praise their wonderful caregivers.  I am so glad to be a part of this group and it sure boosts my attitude if only for a few hours.

When it came my turn to tell my story, I told about the diagnosis last July, the failed treatments, my transplant and now my Myeloma returning on my scalp.  Told about the tests to be completed before we decided on a plan of radiation or chemo.  Told about my fears of the MRI and the Pet Scan tests to be completed.  Told them I was damn scared!!  After I was done talking, one of the guys there ask if he could say something.  This guy, Ben, I have blogged about before.  Young, three kids 10, 12 and 15, diagnosed last July too.  He has chosen not to have a transplant at this time.  Just doing the RVD maintenance for now.  His comment to me was "I have to say that you are one strong lady.  I have watched you and admired you for your courage from the very first meeting.  I have told my wife several times that you are very strong no matter what and you have been an inspiration to me!"  Wow, this was wonderful to hear and it was all I could do to keep from crying.  Thank you Ben.  I so appreciate your kinds words.

So I have had my X-ray last week, yesterday my bone marrow biopsy (from my left hip making it hard to sit) and today my PetScan.  Made it through that one.  Now the MRI is on Monday.  Will have all the results, positive results we pray, when I see Dr. Sarriera next Thursday.  Will know then which way we will proceed, chemo or radiation.

Quote:

You are not your illness.  You have an individual story to tell.  You have a name, a history, a personality.  Staying yourself is part of the battle.

Just Do It!

Today was my appointment with Dr. Nanda, Radiation Oncology.  Dr. Nanda read over my history and asked me lots of questions.  Then examined my head and the new lump.  We then discussed which tests Dr. Sarriera ordered and which ones I have completed.  Only the x-ray so far.
Dr. Nanda explained that although there may be cancer under where Dr. Nair removed the lump and the new lump is starting out the same way that one did, he would like to see all the results from the Pet Scan as well as the bone marrow biopsy.  He added an MRI of my scalp.

He and Dr. Sarriera are having these done to rule out the possibility of Myeloma attacking any where else in my body.  If any of them show Myeloma other than the scalp area of concern, my treatment will then go to chemo and not radiation.  Radiation, being localized, would not be the way to go if more shows.  If nothing else shows any Myeloma, he will discuss my case with a local review board of doctors regarding treatment.  If we go with radiation, it will be 10 treatments - every day for 5 days for 2 weeks.  Bill voiced our concerns over nothing happening as far as any treatments.  Both of us are very uneasy about this.  Dr. Nanda said that although it seems nothing is happening regarding a treatment starting now,  there are things happening moving us forward to a treatment plan.  The
x-rays, Pet Scan, MRI and bone marrow biopsy are all what's happening to help my team of doctors get the best plan possible for me whether that be chemo or radiation.  The wait is wearing on us but we understand what's needed here to proceed.

So please give me another prescription for Ativan for the MRI.  Bill is desperately looking for someone to take me to the Pet Scan and the MRI.  Just kidding.  He knows how I am going to get right before these two.  I know how I am going to get.  I already am feeling anxious.

Dr. Nanda will fit nicely with my other two doctors.  He is very soft spoken and was easy to talk to.  He seemed to understand our anxiety and was able to put us at ease a bit.  Dr. Sarriera, Dr. Nair
Dr. Nanda.  Glad I have them in my court.

The tests.  Monday we are clear until 5.  The Multiple Myeloma support group meeting.  Then we start:

Tuesday the 13th - bone marrow biopsy.
Wednesday the 14th - Pet Scan.
Friday the 16th -  Zometa drip
Monday the 19th - MRI
Thursday the 22nd - Dr. Sarriera
Thursday the 22nd - Vaccinations (5 of them)
Friday the 23rd - Dr. Nanda

I think there may be a day in there I can sew.  I will be sedated for the bone marrow biopsy and will use the Ativan for the Pet Scan and the MRI.  Those days are washes!!!

Just do it.  When Dr. Nanda ask me to get on the examine table, I looked down and noticed he was wearing black Niki sneakers.  Just struck me as funny.

Quote:

Dream as though you have nothing to lose.  Believe as though anything is possible.
Love as though your heart has no bounds.  Live as though there is only today.

Shades of gray.

Today I had my stitches out.  Ouch!  Such a baby.  Dr. Nair, Oncology Surgeon, kept apologizing every time I quietly yelled or flinched.  He has a great bed side manner and is very soft spoken.  I asked him if the the lump he took out was cancerous even though I knew it was.  He confirmed.  I then asked him if he saw or felt there was cancer in the area around the lump.  Dr. Nair said that he didn't see anything that looked cancerous but Myeloma is a cluster of cells, is deep seated and not spread out.

I have since, this past weekend, found another lump on my head.  It's not as large as the one Dr. Nair removed.  He examined it and feels this is the same type of lump.  Myeloma.  We discussed the plan that Dr. Sarriera has designed for my treatment.  Radiation and then chemo meds afterwards.  He was in agreement with the way Dr. Sarriera wants to go.  Asked which doctor I was seeing at Radiation Oncology on Friday.  His look of approval when I said Dr. Nanda's name was reassuring to me again. Dr. Nair said "we" will get this taken care of for you!"  My team of doctors working together for me.  So glad they are all caring and all in the same Cancer Center.  Of course I haven't seen Dr. Nanda yet but I am sure I am speaking for him as well.

My bone marrow biopsy is scheduled for next Tuesday, June 13th at 1.  Have to be there by 11.  Wondering if I am going to have to clean myself with 6 wet ones, brush my teeth etc like two weeks ago when I had my biopsy on my head?

I recently sent a picture of my hair to Louise so she could see the color.  She responded with - "Beautiful.   Shades of gray.  Just like the movie.  And you better behave."  Thanks for the much needed laugh Louise.

Quote:

Count your smiles instead of your tears.  Count your courage instead of your fears.  

Too much.

Appointment with Dr. Sarriera went as we expected (Friday, June 2nd).  Sit on the chair
Mrs. Snowberger, it's more comfortable was the start of our conversation.  Next was - well you know the results of your biopsy.  Yes, was told it was consistent with Myeloma, which means it's cancer, right?  Right.  So this is what we are going to do.  X-rays of the skull to be taken today (done), Pet Scan to be scheduled within a week (insurance you know), bone marrow biopsy.  Need a sedative for the Pet Scan please.  Need to be sedated for the bone marrow biopsy please.  X-ray, no problem.  I can handle that.  Will need to make an appointment (scheduled for June 9th) with radiation oncology for a consultation.  Will be Dr. Nanda, like him the best. This was our conversation at first.  Then we discussed the whats, whys and wheres.

My cancer has come back and it's only been 6 month ago that I had my transplant.  Wait, why?  I know I have posted and said over and over that Dr. Sarriera said Multiple Myeloma can appear again in 1 day, 2 weeks, 3 months, 3 years, 20 years.  But did I really believe that?  Maybe not.  Felt pretty good since all my labs were good.  However, Dr. Sarriera said this cancer, another part of Myeloma, is called plasmacytoma.  This cancer was found in my soft tissue and not in my bones.  Not all of the cancer was removed with the lump because the skull is a very sensitive area to do surgery on.
Dr. Sarriera said this plasmacytoma cancer responds well to radiation.  I asked him if this was something that I could have prevented if I had been able to be on a maintenance program sooner.  No was his answer.  This is a very aggressive cancer.  He, too, was a little surprised that it was starting over again so soon after the transplant and also because of my good labs.  So nothing he would have done could have prevented this from happening.  Nothing I could have done would have prevented this from happening.  This was not something that Dr. Sarriera could have predicted would have happened so soon.  He said he wants the Pet Scan (full body) to make sure there isn't any other cancer any where else.  And he wants it within a week.  Don't forget my sedation pill.  Then the bone marrow biopsy could be scheduled Wednesdays or Fridays.  Are you sedating me?  No.  Need to go to the hospital side for that.  So that's where that will be then!!  That was a very painful procedure.  They can numb the area where they insert the needle but can't numb the bone they drill into or numb the actual removal of bone marrow through the bone.  So, no thanks; hospital side it is with sedation.  X-rays done.  Piece of cake except it was so friggen cold.

Didn't get this finished last night.  Kept falling asleep.

(Saturday, June 3rd)  Not sure how much radiation I will need but Dr. Sarriera explained it would be localized to the area of my head where the new cancer has attacked.  As long as the Pet Scan doesn't show any other areas of attack, the radiation will only be targeted there.  As long as the bone marrow biopsy comes back free of cancer, the radiation will only be targeted there.  And this cancer responds well to radiation.  And this cancer responds well to radiation.  And did I hear Dr. Sarriera say, this cancer responds well to radiation?

We then discussed the method of treatment once I am done with radiation.  There are two other chemo drugs that he wants to try, along with Dex (steroids), as my maintenance plan.  This will be started shortly after my radiation treatments.  Dr. Sarriera was very upbeat about my treatments.  He was very sincere about my plan and very sincere about my future.  We reviewed everything again to make sure we were on the same page.  Then he left.  Bill and I once again just sat there a minute in disbelief; sort of like we did almost a year ago when I was first officially diagnosed with Multiple Myeloma.  Multiple Myeloma - what is that???  It's what - treatable but not curable?

Well, we know what Multiple Myeloma is.  We know that it's treatable but not curable.  We know it's a very ugly cancer that is very hard to understand.  We know it can come back once you are somewhat free of it.  We know it, we know it, we know it.

Right now I am not saying that I am ready to fight again.  Right now I am not saying I am giving up.  Right now I am not saying much.  Just need to let this all sink in and prepare for what's to come with Bill by my side.  Just too much to comprehend right now.  Just too much.

Quote:

Even when you know what's coming, you are never prepared for how it going to feel.