Exit Interview

Hello my dear friends,

Hope that you all had a great Christmas!

Well I am on day 35 - post transplant, and Dr. Nash is moving in the direction of sending me home.  My numbers are improving and pending any unexpected issues Matt and I should be leaving Denver and driving back to California the 3rd or the 4th.  Woo hoo!

We had what they called the exit interview on Friday and was given instructions, test and the doctors I need to see when I get home.  Looks like I will be continuing to need my blood taken weekly for a few months.

Also, because this is a study they have a follow up schedule to track the effectiveness of the transplant on the scleroderma.  The first one is in 3 months, which would  be in  February for me, then in 6 months and I believe it continues for up to 2 years.  Not sure how that will all work out with my insurance as  I am only covered until March 14th under the transplant case.  I know most people think because it's a study that the study takes care of the cost, but that is not the case.

Matt and I are so looking forward to returning home.  While we've been away, our dear friends, Joe and Karen have been  looking over the house and keeping everything going.  We are so grateful to  them.  It's one thing when you go away for a weekend or week - but I am talking 3 months... true kindness!

Except for going to the clinic, I have stayed in the apartment to avoid any contact with flu.. etc.  My energy level is low but not that bad.  Dr Nash tells me I will have good days and maybe not so good, but overtime I should start to feel stronger.  Patience.

I am attaching a few pictures that Matt took while I was in the hospital for those who might like go see a bit of the process.

Wishing you all a Happy and Safe New Year, most importantly --  Wishing you all Good Health!

God Bless you!
xo

Second Stem Cell collection.

Monica - NP  and Nurse Nancy

Container that held my stem cells

Monica verifying they belong to me.  Had 7 bags.

November 26, 2012 injecting me with my stem cells

After infusion - 1

After infusion 2

On the mend

Maria - she came in everyday to clean the room
a sweet, sweet lady

Moving Forward

Well my Dear and wonderful friends ...
I truly apologize for not posting sooner ... however I've been thinking of you all everyday and I know all your love and support has brought me this far.  I also know that the Lord has heard all your prayers.  Thank you!

After three weeks which is pretty much a blur to me the Doc gave Matt and I the OK to go back to the apartment.   As much as I wanted out of the hospital, I will admit I was very apprehensive about leaving as I was being monitor 24/7 and now I am going to be away from that with an overwhelming amount of instructions, outpatient immunosuppressed  diet guidelines, loads of meds each day to take, and knowing the not so obvious signs of the body to pay attention to, that may indicate you could have an infection and call the doc.

This part of the treatment is leaving the hospital and being monitored as an out patient for a few weeks. I am scheduled 3 times a week to go to the clinic to have blood test and be examined.  If the testing continues to improve  and I don't develop any infection or issues they will send me home with instructions on the appointments I will need to make with doctors at home and continued blood test.

I've been out of the hospital for 7 days now diligently following all the care giving instructions, thanks to my dear husband.  Last visit to the clinic continues to show that I am on an up hill recovery from treatment.  It's looking good that we could be headed home in a few weeks.  Then with time, did I benefit from the stem cell transplant -  keeping the scleroderma from progressing so quickly for a long period of time.

If you knew how long it took me to put this note together you'd laugh.  Hope it makes sense!

All is good and God's got this.

xo

Got White Cells?

Hello friends,

Just a quick update . . .

The transplant of is complete and though she had a pretty severe reaction to it, everything is under control now and progressing as expected. The day Mom had her stem cells reintroduced to her system, her lungs and heart and kidneys and who knows what else (seems like everything) went crazy for a day or two.  It was rough but she made it through!

She is still what they call "neutropenic" now, which means they have depleted all of her immune system and she is very susceptible to infection.  They will be in the isolation ward for the next week or two until her cell counts begin to rebound. Right now, she still feels very bad, and is very sick, but that is expected and all her numbers and cell counts and signs are as they should be.  The worst of it is over and the doctors are all optimistic about a good outcome. Now we just wait while her body repairs itself.

Thank you so much for your prayers and support!

- Ann

Darkest Before Dawn

I spoke with Mom yesterday in a small moment of reprieve from her grueling battle and she asked that I post an update for her. This is a hard week friends. I don't really know what to say other then ask for your prayers as she is in the thick of it now. They assure me the doctors are everything they could ask for, she is receiving the best care available and "its all part of the process."

But how do you go on living your day to day when your momma is suffering so much its spilling out through face time? How do you soak up more tears when your own are flooding the days counting down to a miracle? While she suffers through it and Dad does all he can to keep her comfortable and hold her hand, I can only pray and hope from far away. I don't really understand all the meds and what exactly is happening and when, so here it is from another perspective . . . 

The doctors started the high dose chemo and various other strange poisons used to heal the sick. They have to breakdown the diseased cells before healing can begin. And isn't strange? Here again the dying comes first.  Like everywhere we look to in the universe, there is no life before the cross. We must lose our life to find it, a miraculous mystery we don't understand. And we are humbled as Job trembling when we hear, "Who are you, oh man, to question God?" when we are brought low like this.  It is painful and bloody and yet it is where we pass from death to life. Though it seems an unlikely place for hope, it is the only hope anyone has. The medicine that heals, first must kill. We cannot transplant new life, new marrow, into a body harboring the very disease we seek to be rid of.  

And this is where she's at. . . Holding on day by day as they kill as much of the diseased immune system as they can before her stem cells are replaced. Today, November 26, will be the day they give back all those millions of little cells of hope they so tediously collected. In medical speak its called "Day 0" where her immune system will be fragile, newly born. The healing will be slow and uncomfortable, but the hope is it will only get better. The hope is the Scleraderma will be stopped from progressing and maybe some damage reversed. 

The hope, is life renewed.

- Ann

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day." 2 Corinthians 4

Chemo for Thanksgiving

Hello dear friends,
I am sorry I have not updated my blog for some time.  I have had a few things going on since I last wrote.  I spent about 6 days in the hospital due to an infection in my mouth.  They were given me antibiotics through the IV and some nice pain killers.   During that time they also attempted to collect stem cells from me again and the good news is they collected over 500 millions.  So now they have all the stem cells to proceed with the transplant.  I am scheduled to be admitted in the hospital on Wednesday, November 21st, the day before Thanksgiving.   Guess what I'm having for Thanksgiving....and it's not turkey!

I also had to see a dentist to rule out a bad tooth or such.  Luckily through a couple we met here in Denver, Phyliss and Kent, they recommended a dentist and we were able to get that taken care of in a few days.  Kent has scleroderma also and went through the stem cell transplant in January.  He is doing remarkably well.  They are a very thoughtful couple and have offered much support and kindness since we met them. It's amazing how God places the right people in your life at the right time!

Due to the chemo I had 3 weeks ago my hair began to fall out in clumps.  What a weird experience to put your fingers through you hair and have a clump of it in your hands or look at the pillow and it's covered with hair.  To make it less messy the nurse in the hospital suggested to shave it and so I agreed.   I can't say that it hasn't effected my psyche a bit.  Matt was very sweet and also shaved his head so I wasn't alone.  I do have some hats to cover my bald head, but unfortunately I'm not one of those girls that look cute in hats.  But I guess a bit better  then bald.
One lady woke up with 3 hairs left on her head so she decided to wear a braid, then next day she had 2 hairs so she figured she'd part it in the middle.  When she woke up with 1 hair left she wore a ponytail.  A little humor from the cancer floor of the hospital.  :)

On Wednesday (if nothing unexpected occurs) I will start the stem cell transplant.  I will receive a high dose regiment of chemo for several days to deplete my immune system and then once that is completed the stem cells they collected from me prior will be infused back to me.  Similar to a blood transfusion.  My understanding is that I will be feeling pretty crappy and weak for 3 to 4 weeks before I begin to feel better.  I am scared about the side effects of the chemo and pray that my body will be able to handle it without any lasting side effects.  Again I need to remind myself to "Trust in the LORD with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And He shall direct your paths." Proverbs 3:5-6

I am so very thankful for your friendship and support.  I wish you and your loved one's a Happy Thanksgiving!  Enjoy and Celebrate!

xo

A no hair day!

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.