Roller Coaster Week

(  This has been Larry and I these last few weeks :)

So, this last week in to see Dr. V on Monday.  I was scheduled to have labs and then on Tuesday I was going yo have my final chemo...FINALLY!  But when my labs came back my white blood cell count had dropped drastically.  The week before it had gone down to 1000  (remember, I'm trying to get it above 1500 before they will even do the chemo).  Well, I had been coming in for Neupogen shots, and I had been feeling really good the previous week, so I actually expected my counts to have come back up, so when Dr. V looked at the labs results and said my count had actually gone down to 215 I was shocked.  That put me in a category of not only being able to get the chemo, but also in a very high category for getting an infection.
So, instead of coming back in for chemo the next day, she had me come in for just the Rituxin.  Then she set me up to come in every day for a Neupogen shot in hopes of getting my white count to bounce back up.  She mentioned if it did not come back up this last week, she would have to schedule another bone marrow biopsy to see what was going on.  What is going on??
Do you see why it's been a roller coaster week???
On one hand I'm feeling pretty good, and on the other hand my white count in soooo low.  Plus, I'm not sure if I'm going to get that last chemo treatment.  Which....
on one hand I'm super glad to think I might be done, and the other I don't want to miss any treatments that might ensure the cancer staying gone.
AHHHHHHHHHHHHH  (which is what I say when I ride a roller coaster!)

Also, Dr. V said she wanted to call Dr. Glenn (my Utah doctor) to get her input on why my counts would be so low, but then found out Dr. Glenn was out of town last week.
SO I decided to email Dr. Alice Fan (My Stanford Oncologist).  I just really wanted to get her input on the situation.  I explained everything to her and this was her email reply:


Dear Jen, 
Thank you for your email update. Sounds like you've been through a lot!  Infections and delays due to counts are common, so it is not unusual or worrisome to me. I'm very happy to hear about your clear CT results.   I would like to call Dr. Virgilio tomorrow when I'm in clinic to touch base with her, and then after I talk to her, I'll give you a call.  Sound ok? 

All the best, 
Alice

(Dr. V was out of the office on Friday, so she is calling me today..Monday)

Dr. Fan is an amazing doctor, and I feel so lucky that she is willing to look into what's going on with me.  She is the one that set up my course of treatment.   That being said, I really hope she calls Dr. V today and they decide that I don't need the last round of chemo, and I can just start my Rituxin maintenance.
I should be hearing some time today, and the thing is...
I'm ready to get off this roller coaster!!!!!



GOOD THOUGHT:
I'm starting to rebuild.  My strength is coming back slowly.  I'm starting to feel like my old self.  The "chemo side effects" are starting to wear off.  I'm so excited to keep moving forward!  

Going through it together

This last week has gone a little better.  I saw Dr. V on Monday and thought I would be having chemo that day.  But when my labs came back, she delayed it again.  My white blood cell count was really low.  There was another part of my blood count that has to be over 1500 for them to even do chemo.  Last week my count was at 1100.  And then this week it was down to 1000.  Even though Dr. V was no positive I was fighting a blood infection, she figured there was some type of infection going on, and my body was having a hard time getting rid of it with such low counts.  So Monday she started me on Neupogen shots every day.  Oh, the Neupogen shots.  Yes, they're the same shots that they gave me right before I harvested stem cells.  Remember, the ones that made me so, so sick??   So, I was expecting to feel really sick this week from the shots.  But surprisingly, I've felt OK.  I think the dose was much, much smaller.
  She also was concerned I could be having problems with my gall bladder or appendix.  So she sent me to have a CAT scan and chest X-ray and then scheduled me with a surgeon to go over those results.  Monday afternoon I saw Dr. M (Surgeon) and he said everything on the CAT scan looked totally fine.  He could see where the cancer used to be, but yes...it is still gone.  That's always good to hear!

   I had a follow up appt with Dr. V yesterday and this is what she said:


" You only need one more Neupogen shot, and then one more dose of Vancomycin (IV antibiotic) and 3 more doses of Levaquin (oral antibiotic) and then we'll schedule to have chemo next Tuesday.  Then after chemo we'll watch for your blood counts to come back up, and once they do we'll have your port removed.  You will come back every 3 weeks for 2 more cycles, but that will be for Rituxin only".


So see, I really am getting close to being done.

The last 10 days I have been taking an IV antibiotic.  The first couple of doses we had a Home Health nurse here to show us how to do it.  But since then, I have had my own private nurse (he's cute and nice).  Larry has always been in charge of my med's.  He just added this one to the list and became an IV expert.  Even though there were no needle pokes, it's still a lot to remember hooking everything up, and he's been a champ!  But I think he's super glad to have that part over too!

My oldest daughter Lauren has been so helpful as well.  She wants to be a Pediatrician when she grows up, and she loves to be right involved in anything medical.  So me having this done at home has been a dream come true for her.  She always wants to be right there and check things out.  I also got approval for her to be my "chemo buddy" for my last treatment.

My son Josh has been so sweet through all this.  He's always reminding me, "Mom, we're almost done."
I think it's so sweet how he uses the word "we're".  I know I'm the one that had cancer, but my WHOLE FAMILY (immediate and extended) have gone through this together.

GOOD THOUGHT:
My hair is growing back..hooray!

Delayed

 SO, I'm on a very strong antibiotic right now, IV style.  It's called Vancomycin.  It's not bad to take..no major  side effects.  I started it Monday night at the infusion center.  And then I went back to the infusion center Tuesday morning for another dose.  Tuesday night a Home Health nurse came to our house and showed us how to hook up the antibiotic at home.  It's super easy  (no needle pokes thanks to my port).
  This morning I originally scheduled to go in for my 6th and final chemo treatment.  But  my appointment  was changed for me to come in earlier and have my antibiotic treatment, and then see Dr. V .  She told me that she wanted to hold off on my chemo because of the infection, so I will have the chemo on Monday  (Valentine's D♥Y).  Oh well.  This is how it is.  Expect the unexpected.

(I started this post last week.  Today is Saturday.....here's what's new)

    Yesterday (Friday) I woke up feeling sick again.  Low grade fever and just overall feeling yucky.  I called Dr. V and she said my blood cultures came back just fine, so the original culture that showed infection could have just been contamination from when they did the culture.  She thought I could just have a virus...things are going around.  But just in case, she has me taking another oral antibiotic.
   I had 2 more rounds of the IV antibiotic left, and to be honest, I was looking forward to being DONE with that.  And then last night a man knocked on my door and was delivering TWELVE more doses of the IV antibiotic.  I could not believe it.  I called Dr. V to verify she really wanted me to take that many more doses even though my blood cultures came back OK.  She said "Yes.  Just to be safe".
   So....I guess I will continue taking  IV antibiotic until Thursday.  And then this Monday is chemo.  The plan is to have the chemo next week, finish out the antibiotic, and then have my port removed.

GOOD THOUGHT:
I'm on the countdown.  And it can not come soon enough! :)

What I should be doing

I am looking out a huge window watching huge snowflakes fall.  I love when it snows.
I should be skiing right now.  I should be putting little purple snow pants on my littlest friend and building an epic snowman right now.  I should be picking up the rug I left on my back porch right now (oops).  I should be brewing some hot cocoa and inviting friends over to play in the snow.  That's what I think I should be doing.
Maybe next snowstorm.

This snowstorm, I'm sick.  I've been sick since Friday.  High fevers, chills, aches, icky feeling.  This is supposed to be my feel good week.  And then this Wednesday was my 6th and final chemo.  I'm in the homestretch.  And I was looking forward to that. But Sunday when I went to the hospital to find out why I was sick, I was told I have a staph infection in my blood.  Not good!  I had lots of cultures drawn and then sent off to the lab.
Yesterday afternoon I came in to see Dr. V and she confirmed that I had an infection in my blood and would need some strong antibiotics through an IV for 10 days.  She said this may, or may not push back my final chemo treatment this Wednesday.  I'm looking out the huge window behind me in the infusion room watching the snow fall, thinking of all the things I should be doing.

Well, what I should be doing is planning a special celebration dinner with my family for Valentine's Day.  Our Halloween, Thanksgiving,  Christmas and New Year's all came and went with a little cancer cloud hovering over them.  But Valentine's Day...that day is supposed to be a huge celebration in our house.  And it will be!
This may be a little set back.  But what I will be doing is focusing on getting better and getting through this last chemo.  I will be planning an awesome Valentine's Day Celebration. ♥  I will be thankful for all the things / people that have blessed my life on a daily basis.  I will go home after this infusion and watch my little girl play in her purple snow pants playing in the snow.  And next snow storm I will be out there with her!

GOOD THOUGHT:
This is a message to Mr. and Mrs. Clark from California.:  You raised such a wonderful daughter.  I am so thankful to have her as my friend.  She continues to make my life easier in sooo many ways.  She is so caring and compassionate; she always seems to know exactly what to do to make things better for me.  I just wanted you to know, you should be so proud of the woman she is.  I'm sure you already knew that!
Love, Jen