Tuesday, January 30, 2018

Squirrel.

Today we started cycle 6, week 2, day 1.  Went pretty smooth.

Last week after my day 1 & 2 of week 1, things went pretty much the same.  Tuesday night,  had Kristi and the girls over for spaghetti. Tuesday is Dex day and even after the 11 Cytoxan pills that are to maybe make me tired and didn't) I was up for awhile.  Slept some and was up early.  Wednesday, up awhile again but not as long as my Tuesday nights.  Head felt dopey as usual.  Thursday, I usually feel okay but not this one.  Just felt dopey headed and a bit tired.  Friday, well as we know, was pretty much fatigued all day.  Not much going on that day.  Saturday, still dopey headed feeling.  Did have a meeting, didn't know I was having one, with the President and Treasurer of our HOA.  I am the secretary now.  You all knew I would get involved when I could.  I still like doing that stuff.  Saturday evening we were invited over to Michelle and Gery's for dinner and some cards.  Haven't been together since way before the holidays.  All four of us got sick around Christmas Eve and that did it.

And let me finish.  Sunday, rainy day, another dopey head.  Was in my sewing room off and on.  Working on another quilt.  Monday, just another fun day.  LOL.  Had my up and down days from the steroids.  Ask Bill.  My sinuses were bothersome as usual for a few days.  Then we start all over again week 2, day 1.  Then week 3.  Then a week off; which really turns out to be 13 days from treatment day to treatment day.  This is my life of treatments.  This is my life of Dex, Cytoxan, Kyprolis.  This is my life once my labs are read, approved and the Kyprolis starts.  This is my life as it has been for the last 6 months.  This is my life working to keep this cancer undetectable.  This is my life and this is a lot of Bill's life.

Back to cycle 6, week 2, day 1.  Labs were drawn.  Sent to room 4 with Mary.  Another oncology nurse we never have.  I will add her to another favorite.   Wait for lab results not so bad.  My WBC was good again.  My bilirubin was up but down from last week.  2.4 was last week's count.  This week is count is 1.7.  Since Dr. Sarriera has my limit set at 1.5, Mary had to put in a call to him to see if okay to administer the Kyprolis.  And he was at lunch.  Waited a bit more.  Approved and sent to pharmacy to mix.  Drip started, flush done and out of there around 2:45.  Stopped at Publix for a few things and home.  Tomorrow will be day 2 of week 2, cycle 6.

One more week of cycle 6 next week.  Bone marrow biopsy on the 9th.  Then appointment with Dr. Sarriera on the 14th to decided if more treatments or start of a maintenance plan once he reads the results of the biopsy.  This is my life.

Alarm on phone.  Time for my 11 Cytoxan chemo pills.  I will take them as soon as I fight back these tears.  This is my life.

Got them down.  Tears fought back.  This is my life.

We had a few really nice days last week.  Was able to open some windows and the "gathering room, so called by Bill's brother Mark" (family room) doors out to the screened patio.  Tommy loves to go out and lay on his "sunshine chair" as Bill calls it.  Loves to watch the birds and the squirrels.  Geckos are still hibernating.   I was watching a squirrel on the wall from the family room that seemed to be watching Tommy.  All of a sudden, it ran down the wall across the yard and jumped up on the screen.  Tommy was on the hunt.  I ran out screaming and clapping my hands and he ran up the screen on to the roof.  Tommy was ready.  Not sure who would of won the one and I surely do not ever, ever want to know.  

Quote:

Cancer affects us all whether you are a wife, daughter, mother, sister, friend, coworker, doctor, nurse or a patient.







Wednesday, January 24, 2018

Left handed or right handed?

Today was cycle 6, week 1, day 2 for Kyprolis. Appointment was at 12:30.  Was taken directly back to my room where Roxanna put in my port lines, did my vitals, asked me questions.  My Kyprolis was brought to my room in about 15 minutes since I didn't need labs.  Was all finished around 1.  We had time to pass since my appointment with Dr. Sarriera wasn't until 3:30.  So went to lunch and stopped in the gift shop.  This was a different cafeteria.  Really nice and big compared to the one we usually go to. A lot more food to pick from too.  And never been to the gift shop.  Decided to check to see if there was a possibility they could take us early to see Dr. Sarriera.  Just happened to be a cancellation for 2:15.  We took it.  Thanks Desiree.

Dr. Sarriera came in with a smile on his face which we love to see.  Means good things.  He said all labs looked good.  M spike still O.  No monoclonal bands detected.  White blood count and neutrophils good.  Still a little concerned about why my kappa and lambda light chains are both going down.  Usually one goes up and one goes down.  But my ratio was better than last time labs were done.  Will feel better about this once bone marrow biopsy is done.

Bone marrow biopsy will be scheduled for February 9th.  I will have this done at ORMC attached to the Cancer Center.  Will be put under for this.  Had it done once just in his office and never again.  Dr. Sarriera will see me on February 14th to discuss the results.  From these results, he will decided if I need to go to cycle 7 or he will put me on a maintenance plan.  His plans for maintenance, at this time, is to take me completely off Dex  (Bill was happy to hear that), have Kyprolis drip once a week and continue on Cytoxin (oral chemo pill) once a week.  Again, this will all be decided once he gets the bone marrow biopsy results back.  I am hoping for the maintenance even though we still have to run to the Cancer Center once a week.  Not sure how long I will do maintenance, probably forever.  But if it prolongs my life another 20 years, I will take it.  And as long as I have Bill with me, I can do that.

My Dexoscan showed improvement over my bone health from last year.  He was happy with this too. Will continue the Zometa drips every 3 months to continue to strengthen my bones.

Felt things all looked good overall and left with handshakes and another smiling face.

Bill and I feel things are moving in the right direction for us too.  Just need this biopsy done to prove it all.  And we feel it will.

I had to fill out a questionnaire with I had my Dexoscan done.  Much of the same info they already have since I have used SimonMed several times.  But I guess they added this new question on the form so have to redo it all.  The question was are you left handed or right handed?  Sorry but I have never seen this asked before on any form that I have filled out.  Just struck Bill and I as funny.

Quote:

I know I have had tough days and will have more but the fight against cancer, giving up is not one of my options.






Tuesday, January 23, 2018

Ben

Today, once again, I started cycle 6, week 1, day 1.   Last week, I wasn't able to start that cycle because my white blood count was so low.  It was charted at .9.   This week was charted at 4.2.  This is wonderful. That shows you what chemo (and maybe my antibiotics attributed to some) does.  Kills your good as well as your bad.  Guess this is why I have to have labs each Tuesday.  My bilirubin was high at 2.4.  So Dr. Sarriera lowered my dosage of Kyprolis drip today.

Today, once I got up, I told Bill that I almost felt like my normal self.  It has been 19 days since I have had any chemo drips or chemo pills.  Only thing I took was Dex (steroid).  No med head, no med stomach, no med tired, no med moods (only Dex moods) for several days in between my Dex side effects.  My normal self!!!  Well, that was short lived as I started back on the drip and pills today.
I will mention my normal self at my appointment with Dr. Sarriera.

Today, my baby turned 41.  She doesn't like to say she is that age though.  Kristopher just sent me a video and some pictures of her cake.  Made me very teary eyed.  Miss all my CO family. Happy birthday Bear.  We love and miss you much. And get this, Kerri's birthday box is in Omaha.  Yep. Lost again.

Tomorrow, I will blog again about my appointment with Dr. Sarriera and his plans for me.  I love these appointments because I have lots of questions to ask.  I have to put them on my notes on my phone so I don't forget them.  lol

Today, on the way to the Cancer Center, I got a call.  This call was a very thoughtful call.  I didn't recognize the number but answered because it said coming from Orlando.  Usually it's from someone at the Cancer Center.  I hear, hey Kathy this and we got cut off but not disconnected.  I hear, hey Kathy this is Ben from the IMF support group.  How are you doing?  You and Bill missed our last meeting and Carmela and I wanted to see if you were okay.  I explained why and he listened so thoughtfully without interrupting.  Because he is a Myeloma patient and knows how it is.  Then I asked how he was and when his transplant was scheduled.  I, in turn, listened like he did because I am a Myeloma patient and know how it is.  Doing okay and transplant is scheduled for April 2nd.  Be sure to keep this number for him and Carmela.  Call if we need anything at all.  Needs Bill and I to get back to the support meeting because Bill is the only one who can help him make the meeting more fun.  LOL.  Ben and Carmela!  So glad we found the IMF support group (thanks to Kristi) and Ben and Carmela along with the rest of the caregivers and their patients.

Quote:

Sometimes we need someone to simply be there.  Not to fix anything.  Just to let us feel that we are cared for and supported.






Tuesday, January 16, 2018

Amber

Cycle 6, week 1, day 1 was to be today after being off, except Dex, since January 3rd.  BUT!!!

I was so happy to be able to walk to the elevator instead of Bill pushing me in a wheel chair like the last two visits.  Feeling about 95% better.  Antibiotics finished.  Only using the inhaler occasionally.  Still using my Vicks every night.  :)  Bill is also feeling better.  He caught his bronchitis early and family doctor put him on antibiotics right away.  BUT!!!

I had an appointment with our family doctor on January 4th.  She was concerned with my breathing. Did a breathing treatment (like using an inhaler but meds are put in an electric machine and you breath those meds for about 20 minutes without taking a wand out of your mouth) and put me on the same antibiotic that Bill was on.  The antibiotic, Vicks, Delsym, inhaler were my daily and nightly routine for days.  Michelle and Gery found a cool mist vaporizer for me which I ran every night.  There was not much of an energy level or an appetite for days.  Not fun!  Temperature would fluctuate up and down.  Highest was 103.  BUT!!!

I finally got my Dexoscan on Friday, Jan 12.  Waiting on results from that scan.  This scan is to monitor my over all bone health.  Dr. Sarriera wants to compare results to last year's scan.  BUT!!!

So the BUT!!!  Again, I was to start Cycle 6, week 1, day 1 today, Jan 16th.  Appointment was at 12:30.  Port was accessed with the two lines inserted.  Lines are checked to make sure blood can be withdrawn and check to see that blood can be returned, making sure the port is functioning normally.  Labs are then drawn.  Normal labs today and Myeloma labs added for my appointment with Dr. Sarriera on the 24th.

Back to my room with Angie, my oncology nurse.  Not sure I had her before.  Questions, warm blanket and settled down to wait for labs.  Angie seemed to be concerned with my white blood cell count.  White blood cells are the first line of defense against infections and diseases.  This count should be 4.0 and up for a normal count.  Dr. Sarriera has set my minimum at 1.0 to be able to take my chemo drip and pills.  Today my count was .9 and he decided no chemo today or tomorrow, WBC too low.  Have I told you how much I love Dr. Sarriera, Abby and Desiree.  Chemo will be resumed next Tuesday depending on my lab results.  Bilirubin was 1.6 today.   The two chemo days I missed this week will be added on or just not done this cycle.  Won't know that until later.  That's the BUT!!!

The cause of the low WBC is usually chemotherapy.  But along with this, mine could be because of my antibiotics and being sick for as long as I was. Immune system was so down.  It's still weak so I have to be careful not be around anyone who is sick, stay away from public places, wear a mask when necessary, wash my hands constantly.  This week away from chemo and hibernating at home will only be a help to better labs next week.

We did get to see Desiree today.  Made me have tears in my eyes.  She looks good.  Said the twins were sick.  Ugh.

We had a visitor last Thursday from PA and one who even lived on Garman Drive right next door to us.  A visitor that was only about 6 month old when her parents moved beside us!  Amber, who now is XX years old.  Amber had a field hockey convention/recruiting session only 10 miles from us.  She made the time and effort to come visit.  Kristi and girls came over to visit a bit too.  What a great night of reminiscing, laughing, sharing, caring.  What a wonderful time.  Nancy and Frank, you raised a beautiful woman.  Amber and I decided if this convention happens again this close to us, Nancy is coming along and spending a few days with me!!!  So pack your suitcase Nance!!!

Quote:

We must embrace the pain of changes to our journey along the way; then use that pain as fuel to further our journey.







Wednesday, January 3, 2018

Slid.

Today was the end of cycle 5 of my treatments.  My oncology nurse today was Julia.  She is right up there with Patrice.  No energy so she started fluids on me while waiting on my Kyprolis to be mixed.  Very attentive to my needs.  Kyprolis started, done in 10 minutes.  Then started fluids again for another 15 minutes.

I am off treatments now with the exception of my Dex.  I do not have to go back to the Cancer Center until the 16th.  Will do Myeloma labs that day to get ready for my appointment with Dr. Sarriera on the 24th.

Have to get my Dexoscan X-rays before that appointment.  Being sick has put that on hold.  Then after cycle 6, I have to have a bone marrow biopsy.  Just my doctor and his treatment plan for me.

Feeling a bit better each day.  Taking its toll on me.  And Bill.  He is not feeling better yet.  Soon we hope to be back to normal.

Has been cold here for Florida.  Even heard it snowed in Tallahassee today.  Not Florida for sure.  Our water pipes are all outside.  Yep.  So Bill has them insulated.  It's to get down to 31 tonight and 31 tomorrow night.  Then 35 Friday.  Will run the pool overnight.  Brought in plants.  Moved some around.  Brought in hoses.

Kerri was surprised that I had a heavy coat on today.   Well, have two more heavier then that one.  Lol.  And I plan to wear one of those tomorrow.   I have an appointment with our primary care physician.

It rained most of the day today.  So on the way to the Cancer Center Bill made a turn and we slid a bit.  Bill said it was ice.  LOL

Quote:

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




Tuesday, January 2, 2018

Yet I still love you.

Just need to add some additional info as to my last week.   Thursday, December 28th, coughed all day, coughing up stuff, no enegery or appetite.  Friday, much of the same.  Breathing so hard.  Finally, after begging from Kristi, Kerri and Michelle, we went to Urgent Care.  The doctor took one listen to my lungs and said - pneumonia.  Breathing treatment, inhaler, Zpack.  The rest of the week went pretty much the same.  Breathing was easier for sure.  A lot of coughing, sleeping when I could, along with the no energy and no appetite.

Called my care team Monday to report what had transpired over the last few days.  Needed to see if I could take my treatment if I had pneumonia.  Was told no.  I called in this morning and was told Desiree wanted a chest X-ray and an evaluation by the oncology nurse on 5LP.  Along with labs and they would make a decision as to the chemo treatment today.   Chest x-ray showed lungs were clear.  Yeah.  And it was okay to get my Kyprolis today and tomorrow.

Now I just have to take it easy and do only what I can and mend!!.  Not fun stuff for sure.  Don't think I was this tired once I came home from Moffitt.

On top of all this with me, Bill picked up something too. He went to our family doctor today and has the beginning of bronchitis.  So he is also on antibiotics.

I told Bill the other day that I felt bad that he is waiting on me hand and foot.  Making suggestions to try to get me to eat.  Keeping my water glass full, getting my pills ready, on and on.  Told him I am such a pain.  He listened and then said, "Yet I still love you"!

Quote:

Learn on each other's strengths.  Forgive each other's weaknesses.