Waiting....

Hello all!  Well it's been 4 days since I received the chemo infusions I needed to produce more stem cells.  I'm happy to report that I made it through without any nausea and just a few minor issues.  Also Matt did a great job replacing the IV bags I had to carry around for 2 days during the process.  We are both glad that is behind us.  Now we are back to reporting to the clinic each day for Neutropen injections and hopefully in a few days they will be able to start the stem cell collection process again.  They've collected 1.37, I need to get to 2.50.  More then half way there.... come on cells!

Matt and I have already been here for 4 weeks and haven't started the stem cell transplant yet!  If all goes as planned without any surprises and they collect the stem cells needed I should be admitted to the hospital for for the big guns on November 18th,  meanwhile we wait.

Luckily the weather has still been very nice.  We had a few days last week when we woke up to snow but by the afternoon the sun was shining bright and the last few days have been around 70 degrees.  Most of the leaves have fallen from the trees so the pretty fall colors have faded but when the sun shines bright and the view of the mountains covered with snow it's a beautiful sight!  Below are a few pictures I've taken of our surroundings.

I know God is watching over us and we sense the power of your thoughts and prayers.  xo

On the way to CBCI - High St.

Mobilization Continues

Hello dear friends,

It's been a while since I last posted.  Sorry for the delay.  I am still in the mobilization stage.  My stem cells did not cooperate.  They needed to collect 2.5 million total.  On Friday they hooked me up to the apheresis machine that withdraws blood from my CVC line and circulates it through a centrifuge, which separates out my stem cells, the stem cells are collected into a bag and the remaining blood returns back to me.  I was hooked up for 5 hours, but I was relaxing in a comfortable reclining chair and I could watch the telly, movies or read. I watched Julia Julia with Meryl Steep, one of my favorites. The rest of the time I just laid back and took in the surroundings dozing in and out.  Oh yeah, and I was even able to order food - just like room service.  Not too bad.

On Friday they only collected 1.01 million, not enough so I had to return on Saturday to try again.  Repeated the same process as the day before but unfortunately they only collected .36.  Dr. Nash did not feel it was worthwhile to try again on Sunday due to my blood count numbers being too low.  However, he had another plan he feels very confident about for collecting more stem cells.  Hmm... what's that?  "Well, you will need to come back on Thursday and we will give you 2 days of chemotherapy along with other drugs and hopefully in about 5 to 7 days my blood count numbers should be where we feel we will be able to collect more stem cells."

Chemo! I don't want that, I was prepared to get it after the stem cell collections when they have to tear down my immune system, but now?  And not to mention this will add another 3 weeks before I can start the actual treatment.  More time away from home.  Well, can't say I didn't have a few days of Matt and I going back and forth with thoughts of uncertainty.  But were hanging on to the hope that the outcome of this treatment will help this disease slow down in my body.

So having said all that, today I showed up for my 1st day of chemo. I was there for about 6 hours, they gave me a huge bag of liquids through my new hanging accessory - it's very important to stay hydrated so that the chemo does not effect my kidneys.  Then they gave me medicine for nausea through my port and finally a giant bag of Cytoxin (chemo).  Oh, and I forgot to mention I need to continue having the liquid (saline) even at home so they sent us home with 1 battery operated pump and 3 bags of saline that my personal nurse Matt will have to change every 8 hours and another smaller pump that is hooked up to the another line with medicine to protect my bladder.  I am quite a sight-- I carry a black bag with two long tubes that attached to my chest.  With all this liquid I need to go to the bathroom a lot, which is what they want, so I have to remember to bring my black bag along.  Just hoping I don't forget in the middle of the night and trip over the darn thing.
My fear today is it not knowing what to expect from this chemo, the nurses tell me it varies with each person but to make sure I take the nausea medicine every 8 hours whether I think I need it or not. Which I will for sure.

I need to remind myself continually to take it one day at a time and lean on the Lord for His strength and peace to get through this - ".... He will never leave you or forsake you" Duet 31:16.  

And remain hopeful ... reaching for His cloak.

Matt 9:20-22, 14:34-36

  ".... and all who touched Him were healed"


Thank you for your prayers and support!  Pray for stem cells please.    xo

Below are some pictures of the stem cell collection process ...

The Set Up

The centrifuge

Medicine in Stem cells out

My stem cells

My collection for the day

Think I deserve a drink.... :) 

Home IV's

Mobilization

Thursday, October 18, 2012

Hello dear friends!

I am in what's called the mobilization phase of treatment.  I've been receiving medication to increase the number of stem cells in my blood to be collected before the transplant.  My stem cell count needs to reach 10 stem cell per milliliter.  Today they checked my count hoping I would be at 10 but I was only at 5.  So tomorrow I will go back for another injection and they will draw some more blood and see where I'm at.   Come on stem cells...come out, come out where ever you are!

Yesterday I had the CVC placed in my chest so today when they needed to take blood it was much faster and easier.  As much as I am not too keen on the appearance of this device, I must admit, it beats getting poked with needles numerous times to collect blood.   Now they just screw the tube into the outlets hanging from my chest and instantly the blood flows and fills the tubes.  Too bad I wasn't going to a Halloween party .... I'd have the beginning of a cool costume.  Ha ha

Oh yes, we also went to the Caregiver Class on Tuesday.  Topic's were "Stem Cell Transplant 101",
Nutrition and Transplantation, Finances/Insurance/Advance Directives, Psychosocial Issues and Caregiver Responsibilities.
Quite a bit of information to digest, hope Matt was paying attention.  Just kidding.
I did leave there feeling somewhat inspired and comforted by others in the class that are also about to go through a stem cell transplant and some that already have.  I'm certainly not alone.

Below are some pictures of Cherry Creek which is across from our apartment.  Matt's been going for a walk/run through there and took some pictures to share.  I also added a pic of my new permanent accessory... notice it's red white and blue.  Perfect colors for the campaign season. ;)

Hope all is well in your world!

xo

Step One

Monday, October 15th

Happy Monday!

It's a gorgeous day here in Denver.  The sun is shining brightly, the temp is around 80 degrees and the various colors of the trees are just brilliant.  I wish I was able to take a brisk walk and just breathe it all in.

This morning I had to have blood drawn for the research.

Then a skin biopsy.  Wasn't sure what to expect with the skin biopsy, but it was relatively painless.  What surprised me about it was how small the samples of skin was that they took.  They stuck my wrist area with a needle like device that at the end has a tube like shape.  It was a bit smaller then the tip of a q-tip and they pull out a plug of skin.  It's really a very tiny amount of skin tissue.

After that I had to do a walk test.  I had to walk for 6 minutes and the nurse followed behind me with a device that she rolled on the floor to measure the distance I walked in 6 minutes.  I managed to walk the whole six minutes without stopping or sitting.  Can't say it was very graceful.

Next was over to the hospital which is just next door and up to the 3rd floor for my 1st Neupogen injection which will stimulate the production of stem cells. The nurse told me that side effect from the shot it usually flu like system - low fever, aching in the bones and fatigue.  But it varies with everybody.   Time will tell how my body handles it.

I thought I was also going to have the CVC placed in my chest today, but thats not till Wednesday.  So that was it for this today.  Not too bad.  :)

Tomorrow I will need to be back at the hospital at 11:00 for another Neupogen injection then Matt has to attend a Caregiver Class at 3:45 p.m.  I'm also planning on attending... need to make sure he doesn't miss anything.  Heh! Heh!

I'm attaching a couple of pictures to share with you.  I have mentioned Callee in my previous blogs.  She is the Transplant Coordinator for Dr. Nash and she is just wonderful.  Callee is our go to person when we have any issues and coordinates all the test and appointments.
The next picture is of Dr. Nash.  He is the Oncologist and one of the principle physicians directing the medical trial I am part of.  He has a very calming and reassuring demeanor.  Matt and I both feel we are in the the best possible hands medically.


Hope all is well with you!  xo

Consent Form

Friday,  October 12, 2012

Hi there dear friends,  Yesterday I had my appointment with the Cardiologist and it seems my heart issue is Atrial Fibrillation - rapid irregular heart beat, at least at this time.  The doctors do not feel it should keep me from the treatment.  I will be carefully monitored during the treatment and if any other issues arise they will treat them at the time.  It boils down to understanding that there are risks involved and they will do all they can to avoid them and treat any that come up.   I find myself going back and forth in my mind - Am I making the right decision (as those of you who are close to me will not find this at all surprising :)), but then, I have to remind myself if I do nothing the disease will continue to progress and no doubt there will be more health issues to deal with.  I guess it's like most things in life, the higher the benefit, the higher the risk.

Having said all that, I signed, what seemed like a hundred page consent form today, so it is documented that I understand what they will be doing to me and also that I understand the risks.  It all seems a bit surreal.   I am so thankful for Matt, he keeps me focused and reels me in when I wonder off to the dark side.  I was also reminded by this scripture that I randomly came across today that God's got this.

"Whereas you do not know what will happen tomorrow. For what is your life?  It is even a vapor that appears for a little time and then vanishes away. Instead you ought to say"if the Lord wills, we shall live and do this and that." James 4:14-15

On Monday I need to be at the CBCI office at 8:30 a.m. for research labs, walk test, and skin biopsy.  In the afternoon they will place the CVC - central venous catheter.  A tube that is placed in a large vein in your chest with the internal tip extending as far as your heart. The CVC will be used to administer chemotherapy, medications, IV fluids, blood products and draw blood.  After that I will have my first Nuepogen injection.  This is to increase blood cell production.  As the stem cells in the bone marrow begin producing more blood cells, increased numbers of stem cells are also produced and released in the blood stream.

Meanwhile Matt and I are enjoying another weekend in beautiful downtown Denver.  :)

xo

Matters of the Heart

Wednesday, October 10, 2012

Hi there dear friends, Matt and I have had a peaceful 4 days.  No appointments, no testing, just killing time.  We've seen 2 movies - "End of Watch" and "Taken 2".   We took a ride up to the mountains for a Sunday dinner at my friend Charlene's house.  She and her husband Ron live in Morrison, CO which is at 7600 ft.  Driving up there we observed some gorgeous country and their cozy cabin is tucked in the mountain which faces a spectacular view.  Very peaceful.

Today I met with Dr. Nash to go over my test results and sign the consent form. Unfortunately my EKG is showing an irregular heart beat that has changed since the last test in July. Before they can proceed with the treatment I have to see a Cardiologist for a cardio evaluation an find out if this issue puts me at risk for the Stem Cell Transplant.  Fortunately, Callee was able to get me scheduled with him tomorrow morning at 8:30 a.m. So if I am cleared to move forward it will only set us back a few days from the original schedule.  If I am not cleared ....???
I'm feeling emotionally worn out tonight and the hard stuff hasn't even started.
Good night for now. xo

Waiting, Patiently

Had to have some more lab work today and also meet with Callee at 10:00 a.m.  Callee is Dr. Nash’s coordinator and she is just terrific.  She has been so helpful and reassuring through this whole process thus far.  In fact their whole team has been terrific. 

At this point, we wait for all the test results and hope I have not developed any issues that will keep me from having the Stem Cell Transplant.  I am scheduled to meet with Dr. Nash on Wednesday, October 10^th to sign the consent and start the treatment.  That gives Matt and me five days to hang out in Denver.  I will admit there’s a part of me that is fine with these five days passing by slowly.   ;)

Pokes, Prods and Pictures

8:30 a.m. The first stop on my agenda today was lab work.  I counted 20 tubes to fill. Next stop was a Pulmonary Breathing test, then an EKG, CT Scan of my nasal area and chest, a chest x-ray, and lastly an Eco-cardiogram.  Then we met with Holly who deals with the financial part (insurance).  She went over a lot of information on our insurance coverage for this treatment.  I wish I could say I understood all the information, but I am thankful that Holly will be there to help us. 

Finally returned to the apartment at around 2:00 p.m.  I was worn out and tired.  I think the altitude was contributing to my weariness.

Convenience

Up early and back on the road.  Only had 300 or so miles to go today.  Blessed with another beautiful day and magnificent countryside to witness.  Arrived in Denver around 1:00 p.m. and proceeded to Presbyterian St.  Luke’s Hospital, to pick up the key to the apartment we will be staying at during the stem cell transplantation.  The apartment is only a few miles from the hospital, which will make it convenient for Matt once I admitted to the hospital. 

I was eager to see the apartment and it turned out to be quite nice and will be fine for our stay here.  Across the street is a Target, which we went to today to get some groceries.  Other than that it’s furnished with everything we need.

Miles of Contemplation

Matt and I left early this morning and hit the road to Denver.  We have to travel 1185 miles to our destination.  It was a beautiful day, the sun was shining brightly the sky was so vast and blue above the mountainous countryside. We drove about 885 miles today.  I had many hours to contemplate what lies ahead for me and in the end of all the fearful thoughts I needed to remind myself I must lean on Him!

When I am afraid I put my trust in you,

   in God who’s word I praise -

In God I trust and am not afraid.

   What can mere mortals do to me?    Psalms 56: 3-4

We stopped and spent the night in Little Rock, Wyoming.