Category: Stem Cell Transplant

Right now everything is about numbers.  What time did I take my last temperature?  What was that temperature? How many hours sleep have I had? How much did I actual eat? How many days til I go home and so on and so on. Feeling like numbers are running my life a little more so then usual but hey, I have a life for them to run so I think I will count that as a win.

We were released from the hospital on Friday to return to the comfort and safety of the condo.  What a true gift from a truly remarkable man this condo has been!  I went from a 20 x 20 room to a 2 bedroom beautiful luxurious spread overlooking the city of Chicago.  I am sure you can image how amazing that felt and feels still to this moment. (how is this my life?)

As re-entry Betsy 2.0 begins I had big plans and designs (in my head). I’m going to go shopping and buy a pair of socks!  I want to go to Eataly and order that plate of pasta I have been dreaming about.  And finally the most important I must get to the Apple store cause I need……Nothing. I need nothing but its a new Apple store and I have not been so I want to go so bad.  You know what I did this weekend?   None of that.

My body told me what to do and I listened.  From Friday at 1PM when I walked into this condo until this morning when I need to leave for my next blood test I have left exactly one time.  For 10 minutes to the  market in the building. At 8 AM on Sat when the store had a total of 3 people in it, one being me.  I wore my long sleeves and tucked my hands inside the sleeves as I shopped.  I wouldn’t touch the credit card machine.  I was by far the most paranoid I have ever been about germs realizing I have a super healthy (punn intended) respect for what can happen as well.

Before you all start loosing your minds telling what I can and can not do out of the love you have for me.  What I can and can not be around because of my immunity.  Let me share with you what I was told but the medical team, what I asked a Scleroderma sister who has been through this procedure and then what I am going to do to honor and take care of myself.

My medical team (as I heard and remember it) said as of Friday mid-day I could fly home on a commercial airplane as of that day but they suggest I wear a mask.  They said to avoid crowds if at all possible. Washing my hands often especially before I eat was going to be super important.  Stay away from folks who are sick in any way shape of form because I can pick up an illness quickly.  No plants in the house, don’t take out the trash or clean up animal poop. Wash all fruits and veggies thoroughly before consumption, however given my chosen profession as a germ-a-phobe in food safety for the restaurant industry I already had that one covered.

My Scleroderma sister who has had this procedure and is doing great, said the entire first year matters but she watched things in sections. She said the first 30 days was huge for her. Then to always remember I was a different person now and that for the first 100 days and the first year were all major millstones. Her advice was logical like pay attention to who is near you, who sneezes, and who may be ill.  Don’t shake hands. Smile and say I am recovering from stem cell so please allow a smile to be my hand shake. In the first 30 days from transplant day think of yourself as a newborn baby.  Would I take a new child to X to do Y.  If the answer is no I should not go. She did say to remember also just like a newborn baby I am starting to build (in my case rebuild) my immune system.  Respect it.

My game plan.  I will listen to my body.  Fatigue is a very real thing in my life.  In fact I have never experienced fatigue like I have now.  Wow.  I will rest when it comes on.  I will not push through and suck it up butter cup because in my new life that might lead to very dire consequences.  I will mask up when there are too many for my comfort until that no longer feels necessary for me.  I will have rubber gloves in my pocket as a barrier for when I feel its safer to use them.  Washing my hands often will be even more normal for me. I will only eat from restaurants I trust and be smart about the foods I choose.  As far as being around sick folks I have been on hyper alert for this for months leading to transplant. That will continue.  And finally, I will do each and every one of the things my medical team and my Scleroderma Sister shared.

Bottom line I will be cautious, listen 100% to the medical team but take it even further.  Taking precautions for this one precious life I get to live so that it is a long long life to live.

 

They say its my NEW birthday.  A brand new start to my immune system however it feels like just another Wednesday to me. Maybe all the gowns and lab coats, the big container being rolled into my hospital room or the seriousness of it all should set a different stage. It doesn’t change how I am feeling. Excited, relieved I am final at this place ready to rock and roll the next phase of this Stem Cell Transplant.

As the team does rounds in the early morning of April 11th I inform them they are making a major new dividing line in my life.  A true before and after.

I will forever remember this particular day before and after.  Nothing will be the same for me. Nothing. It will be a new parting of the pieces of my life.  No idea how profound it will be. 

I am simply stepping up to do my part.  Completely my part and from there my body and this amazing medical team will do the rest.

Check

Recheck

& Triple Check as this step CAN NOT be undone

 

 

My stem cell transplant was of the Auto type.  Me donating to myself my own stem cells.”There are two basic types of stem cell transplants and several good sources for these cells. You and your doctor will decide together on the best choice for you.

The main types are:

Autologous (“Auto”) Stem Cell Transplant

This type of transplant uses your own stem cells. Most transplants for multiple myeloma and relapsed non-Hodgkin’s or Hodgkin lymphoma are autologous.

Advantages: Less risk of rejection or graft-versus-host disease, in which the new donor cells think your cells are foreign and attack them. Quicker engraftment. Fewer side effects.

How It Works:

• Your own stem cells are collected, frozen, and stored.
• You have “conditioning treatment” with chemotherapy and possibly radioimmunotherapy to kill the cancer cells and the immature stem cells left in your bone marrow.
• Your previously collected stem cells are thawed and transplanted back into you.

Allogeneic (“Allo”) Stem Cell Transplant

This type of transplant uses a donor’s stem cells, either from a relative or a volunteer registered with the National Marrow Donor Program or other registry. It is less common than autologous transplants. It’s used for many leukemias, aggressive lymphomas, and failed autologous transplants.

Advantages: The transplanted stem cells are cancer-free. Because the transplant creates a new immune system, the cancer-killing effect continues after the transplant.

How It Works:

• The stem cells come from the bone marrow or peripheral stem cells of a matched donor or from umbilical cord blood.
• You receive conditioning treatment with chemotherapy and radiation. This kills the cancer cells and destroys or weakens your own immune system so the donor’s immune system can take over.
• You receive the transplant of the donor stem cells.

Sources of Stem Cells for Transplants

Here’s a summary of how stem cells from different sources are harvested.

• Your own peripheral cells (stem cells in your bloodstream)

• • The blood is collected in three to five appointments when your cancer is not active.
  • The blood is spun in a machine like a centrifuge to separate the stem cells.
  • The stem cells are purged or cleaned to remove any remaining cancer cells.
  • You receive back the other portions of your blood.
  • The stem cells are frozen to be placed back into your body after you have had chemotherapy and/or radiation.
  • Enough cells are usually collected for two transplantation procedures, especially for multiple myeloma.

• Your own bone marrow
  • Stem cells are taken from a site near your hip, under general anesthesia. (This is rarely done in autologous donation.) This is not commonly performed anymore.
• Donor peripheral cells
  • Peripheral stem cells from another person are collected from blood drawn over two to three days.
  • The blood is spun in a machine like a centrifuge to separate the stem cells, and then the donor receives back the other portions of blood.Donor bone marrow
    • Stem cells are taken from the donor’s hip under general anesthesia. This is not commonly performed anymore.

SOURCES:

American Cancer Society: “Stem Cell Transplant.”

Bone Marrow Clinical Trials Network: “BMT CTN 0102 protocol.”

Medscape: “Hematopoietic Stem Cell Transplantation.”

American Society of Clinical Oncology: “Understanding Bone Marrow and Stem Cell Transplantation.”

Johns Hopkins Medicine: “Types of Bone Marrow Transplants.”

National Cancer Institute: “Understanding Cancer Series/Stem Cells.”

 

 

 

So every hospital has great and amazing staff I am sure but no other place has the top shelf, better then I have ever seen, on top of their game folks like Northwestern Medicine.  From the awesome top doc, Dr Burt all the way up to the folks who make the stay manageable in Awesome Alshleey I have been blown away and just simply blessed by Gods grace in these folks hands.

Ahsleey, (shown in the picture to the left with her permission) let me pose for a snap as she made her work a blessing for me in the form of a smile, a clean room and always having a smile in her voice, words and willingness to assist with the cleanliness of the room.  I am blown away by her support.  Simple tasks you may say but man is it different when they are done with clear pride and love for her mission.  Her mission was to make me more comfortable and did she ever.

The nursing staff her blew my mind.  Pictured are two of the many amazing nurses that cared for me as if I was family.  Blanca, on the left of me and Lori on the right here I am happoy in the middle of these two.  These ladies and many others just like them can get you through anything.  They have it.  Done and done.  That’s the confidence anyone would want and I found it bedside on Day 0 and day 1 with these two.

Often I say that my God shows up with skin when we meet and interact.  I can see my faith through your eyes.  I do not have the ability to flip the glasses and see into me except on how I am reflected by you.  My image and attitude was shown to me in true loving colors at every turn since I first connected this amazing establishment.  These professionals are just the tip of the iceberg.

The last two days I have had the pleasure of the company of a true young professional, Emma.  Emma is passionate about her work, love love love what she does and never ever made me feel anything but her total #1 priority.  She explained everything I asked about even when I asked the same thing a few times thanks to chemo brain my mind was having trouble remembering.  I have questions.  Those that know me know I am a curious sort.  Emma answered questions, shared information, encouraged me to stay positive, gave me hope, care and love through all of her actions.

Right now I am sad I might not be here through next Friday night, her next night working.  I want every positive outcome for this young ladies career.  I also look forward to when our paths cross once again.  I just know they will.

 

So the sun peeks through the plastic, very beige curtains to awake me to the first thought today: it’s sunny! Quickly followed by “This is the last big step before I get to become Betsy 2.0”.  I am laying in my hospital bed, in an amazing facility in one of my all time favorite cities! The windy city, Chicago!

Out that same window I see Lake Michigan, a sprawling city and views of the med school that has taught and is teaching these great folks how to combine science, brains, decades of research together for my perfect storm.  Take a disease that one day at a time is trying to kill me and flip the script!  Flip that completely and re-educate my immune system to stop giving me “the dermas”.

The fixed schedule is almost exhausted as I’m finishing up “Day – 1” (Tuesday).  Day-6 through Day-2 has been chemo and other juice to mitigate the side effects of the chemo.  Those pre-meds (what this sports nut calls pregame) starts at 10AM.  Get this drug on board to protect the kidneys, that one for the liver and oh don’t forget all the ANTI- this and ANTI- that meds.  They keep simple things at bay to prevent infection and dire consequences. And for dessert, gallons and gallons of my personal fave PREDNISONE 🙂 but even it has an anti-agitation chaser to keep me smooth.

As I am typing this I think of the amazing doctor and wonder “Does Doctor Burt worry each and every time he does this?  Is it now so normal he doesn’t stress?”  I would stress if I were him but oh well, let me come back to the final chemo day.

The poison I got yesterday (“Day-2” Monday) was that cytoxan (cyclophosphamide) once again.  I can remember it was one simple approx 70 minute push of the drug back in Feb that took ALMOST every hair on my body.   Rocky says it missed a few 🙂  It also did the the primary job: prep my body for stem cell business.  In February it was for harvest, and yesterday was to finish driving my immune system down toward oblivion.

I know in my soul it will do the job it was meant to.  You see Days-5, -4, and -3 were also chemo but it was a different flavor of chemo, fludarabine.  Still toxic metal, still strong enough to get the job done but chemo that didn’t stress my heart as much.  Scleroderma has started to damage my pulmonary system (lungs and now heart) so the knowledgeable staff chose the “heart-safe” protocol for me.  It’s not their first rodeo!

The chemo came, I took it like a warrior pumped up by my God, the love of all of you and an unshakeable faith.  Not once did I doubt for a millisecond that it was the right thing.  I have known that if I was granted the opportunity then this is the answer for me.  Rocky, Victoria, and Josh were here to support, family close has helped so much.  I am so blessed to have the support.  Below are a few pictures from the evening walk when I was up to doing my daily laps.

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Tomorrow (Wednesday) is “Day-0” and I get my harvested stem cells back.  That’s what all of the last year has been leading up to (well, since I learned about this procedure last June :-).   Grateful almost beyond words for all the opportunities and paths that have been gifted to me, I can only say….

Thank You – Thank You – Thank You – Thank You – Thank You

 

Timeline as of 4/10/18

Checked into hospital, got PICC line for meds and began

Thursday April 5 day 1 of chemo

Friday April 6 day 2 of chemo

Saturday April 7 day 3 of chemo

Sunday April 8 day 4 of chemo

Monday April 9 day 5 of cheno

Tuesday April 10 A day of various prep drugs and treatments to accept my stem cells back into my body.

BETSY 2.0

TRANSPLANT DAY Tuesday April 11^th at 10:30 Chicago time I get my stem cells back. and many call this day my new Birthday.  It is actually my 1/2 Birthday.

Wednesday April 12^th to April 21^th or longer ????? Get immune system built back up so I can head to condo to heal here a week then back to Colorado and let the new life begin.

 

Still doing great, however had a couple hiccups along the way last night. Because scleroderma has already affected my heart with a condition known as pulmonary hypertension, they are being super careful and watching my heart like it belongs to a newborn child. My blood pressure spiked to 177/78 at 4:30am and the night nurse started shaking just a little. The bonus round for today’s jeopardy game was my heart rate dropped to 44. Bottom line- heart was working hard to beat very slowly.

Met with Dr. Burt this morning and instantly started a plan of action to handle all of these “minor” challenges. A few more tests, a few more meds and they are putting this humpty dumpty back together again.

On to happier news, 24 continuous hours with my lovely daughter Victoria makes the hours fly by and feel like seconds. It’s a tough way to get her undivided attention. Turns out- it works. Victoria’s presence here with me overnight allowed me to give Rocky a much deserved timeout in our beautiful home away from home.

Each day they encourage me to move and I of course have set a goal of 10 laps around the floor. I have made some nice friends here and say hi on my way. 8 laps down today, 2 more to go tonight. Netflix and daily check ins with my girls help the time pass.

If you are reading this, do me a special favor please. Tomorrow, starting at 10am CST, send up an extra prayer for the harder chemo. I am tough but it just might be tougher.

Love you all,

Betsy

 

 

This is the third day I’m receiving chemo, along with other stuff to make the chemo more tolerable.

For any of you medical folks or those who have ever needed steroids, let me just tell you my daily gift of steroids is now up to 1000 milligrams.  Guaranteed to rock anyone’s world at that rate!

Sometimes I wonder if the drugs to get you ready are worse than the actual chemo itself!

As we were doing daily laps (because they like to see us moving around) Rocky and I stopped in the visitor room and caught a glimpse of a familiar name on the wall.  An artist from Ft. Collins has their painting there, along with a plaque identifying the artist and her home town of Ft Collins, CO.  It’s a small world after all, isn’t it?

 

 

 

 

 

 

 

 

Today’s silver lining in all this is I get to have a visit with my daughter, Victoria, and each moment spent with her is a gift.

Thank you all for the love, prayers and messages.

Betsy