100 Days and Counting!

I am Judy, Karen's sister.  She has asked that I post her blog this week as she has been a little "hooked" up.  I say that in the most literal of terms!  Friday, Nov. 5, Karen entered the City Of Hope Cancer Center.  This has become her home away from home for the next month.  She truly couldn't be in better hands for what she is going through.  We spent all day Friday visiting with a steady stream of all the  Dr.'s, nurses, therapists, and dieticians who would be involved with her care.  We were both so amazed at the time each person took to get to know her.  As she said, "I think I'm the only person in this hospital".  It was a great beginning to a long journey.

The Dr.'s and nurses are very proactive with every treatment.  The first chemo drug (given Friday, Saturday, and Sunday nights) could cause seizures and so Karen spent Thursday before going in, downing 8 pills to help prevent this.  (And it did.)  She was hooked up 12 hours before the chemo began to anti-nausea medication and Benedryl to calm her and prevent a rash.  These have become an on-going part of the many medications she is taking to prevent some of worst side-effects.  Monday and Wednesday she endured two of the strongest chemo drugs that are ever given.  Each were 20 times stronger than any she had been given before.  Nausea began immediately and also extreme back pain.  Morphine was given to try to ease the pain but increased her nausea.  Karen never complains or carries on.  She is amazing in every way in how she endures treatment after treatment.  Here is a statement I know I will never hear again and could only hear it from Karen.  As I was holding her bed pan she said, "throwing up with chemo isn't as bad as being sick.  It's just part of the process."

As Thursday came and we celebrated Veteran's Day, I told Karen that she is my greatest and bravest hero!  She is going to win this battle, I have no doubt.  Your faith, prayers, and fasting are literally holding her up through this.  As I went in Monday I hadn't had much sleep the night before and was so worried whether or not I could hold up for her.  Through the day I felt the strength and energy I needed and even when she was resting I stayed awake and read.  As I got in my car 12 hours later to drive home I almost collapsed with exhaustion!  I got home and pondered on this and realized that there is strength with her in that room that had sustained me as well as her.  She is certainly not fighting this battle alone.  I was able to share that thought with her as I returned the next day.  She feels that strength also.

Friday was Day 0- day of the stem cell transplant.  Her son Mark and I were both there for this exciting event!  We learned a few more amazing blessings that Karen has received.  Because she was so successful in her stem cell harvest, it only took one time and 3 bags to collect the needed 2 million stem cells to do the infusion.  Each bag takes about 5-6 minutes total from thawing to infusing.  With only 3 bags, Karen's went really smooth and quickly.  We found out that some other patients have taken up to 16 bags to retrieve the needed cells and their infusion can takes a few hours.  It was amazing to watch as each bag was taken from the freezer, to thawing water, through the hands of 2 nurses and hooked up and into Karen.  With each infusion she would feel the cold blood in her veins- it burned a little and made her cough.  Then as soon as the bag was empty, the symptoms stopped.  They had told her that she would emit a smell like creamed corn (from the preservative in the stem cells).  It was true!  She smelled of it all day long.  I will never be able to open a can of creamed corn again without thinking of that day.

So, she began what is known as the 100 day count down to living close to normal again.  It will take that long for all her cells to regenerate and for her body to be able to once again fight infection.  I have learned that fighting cancer is not for the faint of heart or spirit.  It is fought and won by the most determined, strong souls ever to live.  In a quote from Elder Maxwell in his biography he said, "Sometimes the Lord hastens His work in our spiritual development by a compression of experiences... Sometimes the best people... have the worst experiences... because they are the most ready to learn."  That is Karen.  I can just see her choosing this experience for what she could learn:).

I will end with a Karen funny.  Mark had come for a few hours one day (he comes for a few hours everyday and is a wonderful son!) and so I decided to go out shopping.  We were whispering because Karen seemed to be in a deep sleep and a nurse was adding new meds to her IV.  I asked Mark if he knew where Last Chance was.  Out of her chemo coma Karen pipes in with "I know the address, it's 20th and Camelback".  Mark and I just looked at each other and laughed.  She is more on top of things with her chemo brain than I am on any given day!  She is amazing!


This is a bag of her stem cells on their way into her!

We're Off!

The news is all good from my Dr. visit Tuesday.  I am in remission and cancer free and able to move forward.  Following our short visit with the Dr., we spent 2 hours with the consent nurse signing paperwork describing the bad effects from the chemo and transplant.  Mark asked the key question as to why we do this if I am in remission?  She responded that the Dr. feels there is a likely chance that it will reoccur and this is the only way for a 60-70% cure.  I realized today that I could stop all this and start living again, but it would be a life of fear living from petscan to petscan to see if the cancer had returned.  I believe that’s why I have felt guided to make this complete journey.

Mark then asked how they know they got good stem cells and not cancerous ones again.  They believe the stem cells they took are good ones, because the bad ones are too weak to make it through the process.  They are going to totally wipe me out with their chemo so my body cannot make blood until they reinfuse the stem cells on Friday, the 12th.  Then they watch me closely for the next 9-11 days when the wbc finally start to increase, followed by the red blood cells, and last the platelets.  During this time they will be giving me transfusions of red cells and platelets, and shots to help the wbc, but I will be very prone to infection, so they will be watching that closely.

I will be visually impaired, confused, intoxicated, and experience amnesia much of the time, but hey, maybe that will help me endure the process.  Beyond that . . . you don’t want to know.  It will truly be a time when I will be living close to the veil and feeling of the Lord’s strength sustaining me. 

Final word has been given to start the chemo tomorrow so I will receive 3 different chemicals until Fri., the 12th, when my stems cells will be reinfused.  I have 3 bags of stem cells.  It’s a big process involving many people, and everything has to be ready to infuse once the bag is thawed, because it only has 10 min. to go in before the cells start dying.  Then they wait a little while and continue with the other 2 bags.  It will be cold and because of the preservative they are in, I will smell like cream corn.

They anticipate that I will be in the hospital until the first part of Dec., then home with 24/7 care for 2 weeks, barring no bad infections.

During my last ‘free’ days this week, my sisters bought me lunch, both being meals that I had been craving and even envisioned during my petscan because I was so hungry, (fries and a chocolate shake from In and Out with chicken nuggets from Chick filet, and Sbarros spinach-mushroom pizza), walked around the lake at the Riparian Preserve, and sat under the trees at my favorite water spot there. Last night I watched the 1953 movie, The Robe, with my mother, since I had just finished the book, but felt like it was the Reader’s Digest condensed version, leaving out the best parts. I was glad I had read the book first because it was so much better and spiritually uplifting.  I will end the day on a fun note by watching Toy Story 3 tonight.

I have mixed feelings today, with anticipation being the strongest.  I am ready to start this final lap and calm about everything overall, but pacing, just the same.  Once I start, I will turn my body and spirit over to the Lord and know that He will be close.  I truly feel strength from the love, prayers, and support from all my family and friends.

Did I Pass?

The week before Halloween was full of interesting tests for me.  There were vampires lurking at every corner of that hospital.  Luckily most of the blood they needed was acquired through my port lines.  On Tuesday I had a CT scan where I had to drink that lovely, thick white goop.  I think that is the main reason they ask you to fast before, so it becomes somewhat tolerable on an empty stomach.  That test was followed by a heart scan to see how my heart has held up to the chemo so far.  

Wednesday I fasted again for the whole-body Pet scan.  This will determine what is left of the cancer, if any.  The techs were really trying to make it a good experience for me even though they strapped me to the table and put tape across my forehead to hold it in place.   I told them their drink tasted like a Dairy Queen treat compared to the day before.  This was one test where I have practiced enough of the mind over matter ‘Yoda’ stuff that when I got itches during the 30 minutes, I told myself it really didn’t itch.

Thursday was my pulmonary lung test to see how my lungs will hold up to their chemo.  I was in a small decompression chamber for an hour doing different kinds of breathing.  At the end of these tests, all they do is thank you and smile and not give a hint of how you did.  Only the Dr. can tell you about them.

So, tomorrow is the big Dr. meeting where she will go over the tests with me to see what the next plan is.  Hopefully it is to move forward with their chemo and then the transplant.  I can tell my body is stronger because I am able to walk on the treadmill longer each day, and I feel like starting the day in my shoes instead of my slippers.  My appetite is good and I have gained weight rather than lose it. 

I met an elevator angel on the first day I was there last week.  We were in the patient elevator together, but she was being wheeled in a bed.  She was older, but had a twinkle in her eyes.  I knew because of her duck mask and cap that she was ‘one of us’, so I said I was going to give her a clap.  The elevator man told me she was going home the next day.  I told her that deserved two claps.  She said, “Yes, it had been 24 days!”

The next day I met her again, waiting for the same elevator, only this time she was dressed and in a wheelchair pushed by her husband.  I got excited for her again as we talked about her going home.  In the elevator she turned to me and said, “It’s not as bad as you think, they take good care of you.”  Then she looked at me and said, “keep up your spirits!”  It was just what I needed to hear that day!

From there I went to the waiting room, where I saw a younger gal going into a room and saying hello to the receptionists, like she was familiar with the place.  While she was making an appt. I noticed how good she looked with her long hair, make-up, and overall look.  I asked her if she had been through all this?  “Yes,” she said, “62 days!”  Wow, I said, you look great.  (They had told us it would probably take about 100 days from transplant to get back to life, and I was thinking, wow, if she can do it, I can, too.)  She went to get ice and when she returned I asked her what kind of cancer?  She told me leukemia and I asked if she used her own cells?  “Oh,” she said, “it’s my husband and he’s in there having an IV.  He has his good days and bad.”  Well, that burst my bubble, but it was fun to laugh about later.

My son, Mark, sent me the following email after the caregiver class:  “So Mom, I forgot to tell you that they told us in the caregiver class that once you are released you are not able to receive any more tattoos or body piercings. I know you had had your eye on a tattoo of Sully from Dr. Quinn for your right ankle, but now it will have to wait! Oh the things cancer makes you give up.....”

Oh, but the things I have gained, also:  a closeness to my Heavenly Father and Savior that only comes at hard times like this, a greater love and bond with my family members, a greater love for my friends and everyone who is praying for me and giving me of their strength and help.  It really is becoming a sacred time for me.

Life Without Stem Cells

So, I had my question answered as to how a person would feel without stem cells?  No different.  I have had a good week, feeling stronger each day.  When I feel like wearing my shoes instead of slippers and have the energy to do a little treadmill each day, I know my body is gradually coming back from the chemo and healing.

Only one trip to the hospital this week and that was to treat a UTI, but they were on top of it and started me on the antibiotic even before I left the clinic.  Since my body is more susceptible to infections, they wanted to nip it in the bud.

With my daughter getting married mid December, I will not be able to attend her reception since it will be during my critical healing period where I need to avoid as many germs as possible.  I had the idea to ask our wedding photographer, Bruce Barnes, if he could take a picture of me now, while I was feeling good, and then paste me into the wedding line shots.  He agreed to work with me on this, so I had a fun week preparing for the shoot.  Monday, Kathy and I went to the Chandler Hospital Cancer wig room and picked out an updated short, brown wig to wear.  These are wigs that people donate to the cancer society.  Then my sweet mother spent 4 hours shopping at the mall and bought me a deep purple, sequined jacket to wear with my black skirt.  Whoo hoo!  It was totally out of my closet comfort zone, but I dressed up and went to the photo shoot on Friday.

We took the pictures in his home with a white background and with his technical knowledge, I’m sure it will look like I’m right there.  He took several shots of me at different standing angles, and will choose one, depending on how I will best fit in the line.  He took some shots with my wig and then bald.  I want a shot to show the real story. 

On Friday afternoon my mother, son, two sisters, and a niece spent 3 1/2 hours at the hospital attending a class for caregivers.  They received very specific instructions about food preparation, home cleanliness, and care for me once I am home from the transplant. They will pack up everything in my home that can collect dust, all my knickknacks and pictures, clean the carpets, wash the curtains, empty my frig and freezer, to mention a few things.  I spent the afternoon during the time they were in the class teary eyed and so grateful for such wonderful family who will give up their afternoon for me.  Even now as I write this I feel so blessed and humbled by their love and support.  Oh, that everyone would have a chance to feel this!  

My tests are scheduled for T/W/Th next week and then I will meet with the Dr. to go over the results and find out when I will begin their chemo.  When my case manager showed me the schedule, and I found out I was going to be later starting the next phase than I had expected, rather than look on the positive side that I would be able to be home longer, I was upset at her for being slow about this.  Then I remembered that she may be my case manager, but my true guide through this is still in charge and everything will be just right according to His time schedule.  I continue to pray that I don’t miss out on what He is trying to teach me.  Thanks for all of your prayers and support.  I feel it.

Fall Harvest Miracle

Fall leaves, autumn smells, it’s time to harvest Karen’s cells!  I was part of a scientific miracle on Saturday.  I received a call Friday afternoon, after visiting the hospital that morning for labwork and another platelet transfusion, telling me that my numbers were good for the first collection and to return at 6:30 a.m. Saturday morning.  Another angel friend drove me at the crack of dawn to begin the process and stayed the entire 7 hours.

After drawing my blood to get information for them to prepare the machine, we played the waiting game.  Two hours later I went to the 9th floor, designated for kidney patients and stem cell harvesting.  I had a great tech who stayed with me the entire process and explained everything very clearly.  They used two of my ports to hook me to the machine, one for in and the other for out.  I had to lay flat on a bed for 4 hours, except when I got to sit to use a bed pan.  (Good thing!)

Kyle helped explain the process so I could share it in my blog.  It is actually called a peripheral blood stem cell collection.  A Phresis machine collected 230 ml of a combination of my white blood cells, stem cells, and plasma, over a period of 4 hours.  The machine separates the blood into different layers.  They take out the WBC layer and plasma, and the rest goes back into my body.  Then the cryo lab tests it, takes a sample, and it is sent out to another lab to be counted.  They add a medicine to the collection and slowly freeze it down.  After my chemo, it will be thawed and reinfused.  They saved my plasma for possible future use.

During the procedure I also get citrate, an anticoagulant, which binds with calcium in the bloodstream.  I had a calcium drip, tums, and milk to drink, to prevent a citrate reaction, but because I am a small body size, I experienced a reaction and needed to have additional calcium.  The reaction was a tingling through my body and small shaking as if I were chilled.  Kyle kept the situation under control, so it wasn’t too bad.  They needed a total of 2 million stem cells and told me I would get a call later to tell me if I needed to return on Monday for another collection.  I had met people who had been collected 3 times and one poor man had to do it 7 times.  They told me it was unusual to collect the amount needed the first time, so I expected to return on Mon. when Kathy would be with me to see the process.

However . . . . they called and told me they had collected 2.4 million and I was done!  I call that a miracle!  I came home with a small headache, but thinking about what my body had just been through, this was amazing.

It’s now Sunday morning and I feel great.  I have such praise and thankfulness to my Heavenly Father for helping me complete this important part of the process. This also means I can stop the daily shots, yahoo!  My chemo will be the end of the month and prior to that I will be having different tests, PetScan, CT scan, and Muga (heart scan).  

Good News!

I was blessed with a great diversion for my mind at this time. My daughter, Aubri, officially announced her engagement to Bryan Blacker from Albuquerque. They have set their date as Dec. 18. As much as I had encouraged her associations with local boys, he is so worth it, no matter where he is from. I first met him during the 4th of July weekend, when he came to Gilbert. I missed him when he left, just like I miss my own children. I am looking forward to having him in our family.

They met last year in their ward at BYU and were family group leaders the first semester. However, I think the real clincher was the anatomy class they had together winter semester. It was not just the class, but everything else that went with it, labs, review sessions, and their own study sessions. Ah, true love.

So, while I am home and between hospital visits, I am having fun exploring leads from friends on websites for photographers, caterers, dresses, flowers, and announcements. Things are starting to come together. I send an email to Aubri and she emails back. What would we do without technology? I may even be attending the reception via Skype, depending on my condition at that time.

After Friday’s visit to the hospital, I will have been there three mornings this week. Mostly for lab work, but when they feel a need, other things, as well. I ended up having platelet transfusions Monday and Wednesday. Yummy yellow. My counts have bottomed out this week, which they had expected, so I had to begin preventive infection measures, which included ending the meal deliveries for now. It has been a good time for me to use the food that I had frozen as extra, so it’s worked out. They are beginning to count my stem cells each draw, then call me the same afternoon to tell me if it’s time for the harvest. I could be doing it on Saturday or Monday early morning. The process is similar to dialysis where the blood is drawn and the cells sorted. They keep the ones they want and I get the others back. Then my cells are frozen until after their chemo.

My sisters each took a short fall break with their families, so I have had a sweet nurse friend come and take over my shot and site dressing while they are gone. I will continue to tell you how this is truly a journey with many angels.

I could be sad about the thought of missing my daughter’s most special time of her life, (and I sometimes let myself go there), but I continue to believe there is a reason to the timing of everything. I have found that those ah-ha moments don’t come until after the fact, if at all. I have given up trying to second guess the Master Planner, for He can see the beginning to the end. I know beyond all doubt that He is aware of each of us and our individual needs.

Good Sam Hospital Work Begins

Whew. This has been a whirlwind week! I was released from Baywood hosp. on Mon. after the chemo and did better than the other two rounds, which I had hoped. My mother told me she had prayed for a good room for me and she is a woman of much faith. The nurses referred to my room as the corner suite of the 6th floor. It was big and roomy, but the best part was the full length window looking east and south. I actually saw a sunrise one morning. I was also located near the helicopter pad, so heard a few of those takeoff and land. I had a friend once tell me that whenever she heard sirens she would pray for the victims, so I prayed each time one would land.

Tuesday morning my sister, Kathy, and I had a meeting at Good Sam to begin our journey there, running all kinds of bloodwork and tests. The transplant center is the 12th floor and they are their own little entity. No check in needed at any registration desk, up the service elevators (to avoid public as much as possible), and right to a nurse. They gave me a new duck bill mask that I will be wearing which is much tighter, but because it protrudes, my lips don’t touch the material. I quacked at a few others wearing them as we passed. Kathy was briefly instructed on how to give me my daily shot to increase my WBC, then in my belly it went. No orange practice there and she did great.

Wed. Mark took me over for the surgical implant of my new neostar catheter. He was a trooper and said all the right things. Sometimes he worries that because he’s a guy he doesn’t know how to make it better. But he does great! I had a pic line before, tiny, served it’s purpose. Well, the nurses referred to these tubings as garden hoses. Now, that’s exaggerating somewhat, considering the three are flopping out of my chest. That was a bad day getting rid of the anesthesia effects, via throw up bags and nausea, but family was with me through the day and Kathy spent the night while I got my strength back.

Thursday, Kathy and I were back again for her instruction of flushing and daily dressing of my port. Again, quick demo, follow the written instructions, and Kathy was doing me first, and then more practice on a mannequin. If you don’t know Kathy, let me share with you how amazing she is. She felt prompted to begin nursing classes last year because she had seen many nice nurses with my previous care and she wanted to be one of those. She took a class each semester and did terrific! Then she was prompted to hold off this fall. Well, we now see it is because she is enrolled in nursing residency 101 with me! She will come early each morning to take care of me and eventually my other family members will join in 24/7 care at home after the procedure. My other 2 sisters are just as amazing. One will step in with her love and talent, then the other one takes over, and now my parents are back in town to help also. I couldn’t do this without family and friends. It is a commitment for all!

The shots will continue until the Dr. feels I have reached a level for the stem cell harvest, which could be as early as next week. After harvest I wait until the end of the month for their stronger chemo. Not sure how a person feels without their stem cells. Guess I will ask when I return tomorrow for more tests.

My love and gratitude go out to each of you in helping me fight this battle. We’re moving ahead! The Lord is truly blessing me.