Vodka.

This is going to be a long one.  One I need!!!  One that are my feelings of the last few days, last few weeks last few months.   One that I need to let out some of my anxieties with out taking a pill.  I may look good but inside is not so good right now.  I get this way every so often and need to vent.  Venting here helps.  Venting here is my way of letting it out.  Venting here helps me so much.  Venting here listens and doesn't hurt anyone.  Venting here is not aimed at anyone.  Just me venting.

Tuesday was our long day at the Cancer Center.  Left the house at 7 and returned at 4:30.   Got my lines in my port.  Was able to have a good blood draw this time.  Yeah.  Took two tubes of blood for my CMP and CBC tests.  Sent me to room 21 (noisy room).  My oncology nurse was Miles.  We like Miles.  Took my 20 mgs of Dex pills.  Lab results back about 9.  Had to have approval to continue from Dr. Sarriera as my bilirubin was up again.  He finally approved (was making rounds).  Started my premeds of Benadryl, Tylenol capsules.  IV of 20 mgs of Dex and then the Kyprolis IV.    And this time, a Zometa IV that runs for 1/2 hour.  This I get every 3 months for bone health.  This was scheduled for Friday but they moved it so we didn't have make an extra trip to the hospital.  After all that was finished, Darzalex IV was started around 10:30 at 25 ml.  Vitals taken every hour and the ml increased each time till it finally reached 200 ml.  Finally finished around 3:30.  Slept off and on but not as good as I usually do on these long days.  So many pills and so may IV's on Tuesday!

Went to bed around 1:30 this morning.  Dex doesn't like me to sleep.  I was emailing my oncology team at like 11.  ;)   Around 2:30 had horrible pains in my stomach that kept me up for another 1/2 hour.  Finally fell asleep sometime after 3.  Slept till about 9.  Great morning.  Ran the vacuum, changed the sheets, made a meatloaf for dinner Thursday, got a roast in the crock pot for tonight's dinner, cleaned up some mail and just some other things that needed done.  Then about 11ish, tears started.  Why, because Dex said it was time.  These tears fell constantly from then on even through my doctor's appointment and getting my port accessed.  These tears are still on the brink of beginning again.  Hold back.  Hold back.  And I will for a bit but I can tell you they are going to start before the night is over.  Just need to get them all out.  These tears.

My appointment with Abby went well today.  She has been with Dr. Sarriera almost 10 years and they think alike.  I trust her and her anything she wants me to do.  She came in the room with a bunch of papers saying she had her homework done.  My email last night was questions I wanted to discuss durning my visit.  She said she change my 15 minute appointment with her to an hour so we can discuss whatever we needed to.

First was the hazy area that was discovered on my MRI/brain scan.  She showed us pictures of the area.  It was like a thin, see through area located on part of my skull where my radiation treatment was localized.  The area was not thick or mass looking.  Abby will set up a MRI/brain scan in four weeks to see if there are any changes.   She wants to do this before my next appointment with them.  Praying it stays the same.  Trying to believe it just from the radiation.  Scare tissue.  Trying to believe.

We then went on to discuss the amount of Dex (steroids) I am getting.  Bill asked what Dex is actually doing for me.  Abby said that Dex is very effective in killing Myeloma cells.  Along with insomnia, higher blood pressure, mood swings, weight gain.  She mentioned that I have been on Dex and tolerated Dex for quite a while now.  Longer then a lot of their patients.  She felt that maybe I should go down another 10 mg.  This, for the Dex reason, made me start to cry.  Why would I want to go down if Dex is killing Myeloma cells?  Not sure I want to do this.  Anyway, once I got my emotions back in line, we decided she would talk to Dr. Sarriera tomorrow and see what he thinks.  Instead of 40 mg a week, go down to 30.  That would have me taking 10 mg with an additional 20 via the IV on Darzalex days.  And I guess, need to ask, only 10 mg all other Tuesdays.  Will get this all cleared up tomorrow via emails.  I seemed to be confused.  Chemo brain here on this one for sure.

Bill brought up the visit of July 24th when she and Dr. Sarriera were on vacation and Dr. Landa would not give permission for me to get my Kyprolis.  She agreed that if he looked at my previous appointments, he would have seen my labs on the 24th were better than other days that I was able to get my Kyprolis.  Also, not happy that my oncology nurse that day told us a lower dose of Kyprolis wouldn't do anything for me anyway.  Kyprolis is based on my weight and height and does not change.  Abby said she would get to the bottom of this for us.  And she will.

My blood pressure was not good today.  First 160/90 in the doctor's office.  Abby feels the Dex is causing this to be high.  She wants me to stop taking my blood pressure pills starting tomorrow and monitor my blood pressure for several days without the pills since my Dex should be wearing off tomorrow.

Abby was very happy with all my lab results.  My M-spike is back to zero and my light chains ratio is in the normal range.  The IgG, IgA, IgM and the IgE all look good as well.  This is great news.  News we like to hear.  News that give us some happy!!!

Discussed was also my Darzalex treatment.  I will be on every other week for another 6 weeks and then once a month.  If they see the once a month is not producing the same results, they will start back to every other week again.  If only I could take Revlimid or Pomalist.  These are the drugs that keep most Myeloma patients in remission.  There is another drug they may consider.  This drug was before Rvelimid and Pomalist.  Thalidomide.  Plus, Abby said there was another drug just approved but couldn't remember the name of it.  So we just have to wait and see how the once a month Darzalex does.

Then on to my Kyprolis treatment on 5LP.  3:30 on the dot.  They were waiting on me.  Got my port accessed with a few tears in that room.  Took my blood pressure and it was 178/81.  Not good.  Back to room 1 with my oncology nurse Caesar.  He asked the normal questions and sent the order to the lab to mix my Kyprolis.  I asked him to take my blood pressure again once I was settled in and calmed down some.  When he did take it, it was 156/70.  Better.  Kyprolis mixed, administered, flushed with saline and Heparin, port lines removed and out of there around 4:45.  Had to stop at the pharmacy.  Hit the 5 o'clock traffic for the ride home.  Home around 6.

This is my last two days of my battle with Myeloma.  Two days out of many just like them over the last 2 years.  Some days I am up for a fight and some days I am not.  I understand that I can make my days happy or sad.  I understand I have to keep battling this ugly disease (dress, don't ask).  Some days the battle is harder than I can handle.  Some days I slap it like a bitch.  Just please, bare with me as I try to make the best of my life right now.  Understand I do not like complaining but complain I must some times.  Just listen and let me get it out.  I love that I have so many friends and family that I can express my feelings with whenever.   Ones that listen and don't always give advice even though I am sure they want to.  Thank you for just being there.

Today there was a patient sitting in the chair next to me.  She was going over her labs and bursted out saying, "Now I surely do not want any liver problems.  I want to be able to drink my vodka."  Well, how could you not laugh?  We ended up talking throughout my treatment.  She has been dealing with lung cancer for the last year.  But what a funny, cheerful lady.  Her daughter is her care giver and joined us in our conversation.  My IV was finished before hers so wished her well.  She said we may meet again because she is there 2 days a week also.

Quote:

Sometimes the strongest among us are the ones who smile through silent pain, cry behind closed doors and fights battles no one know about.