Continue reading “Picture time” →

Today I ran my labs early and a couple hours later met with Dr. Dingli.  My doctor since the beginning of this Mayo journey.  He is thoughtful, genuine, and incredibility brilliant.  He came in the room and asked me if I was in a hurry to leave?  and of course, I said YES.  He smiled and reminded me that we had talked about Day 18 – Day 21 being our goal release date and then went on to say I was doing ” remarkable” and that I fall into the top 1% of successful stem cell transplants.  I did not need to have any blood or platelet transfusions, which is highly common.  And Day 16 for exit or release, is also very uncommon.  Especially with my platelets and neutrophils back in “normal” ranges!   They are working overtime to help me build a newer and stronger body and I can feel it.  My energy and strength is truly amazing, but I am and will have fatigue for a while, of course.  So, after this fantastic news, we returned the to Rochester house to wait for the final appointment today at 3:00, to remove my line.  I crashed for a 2 hour nap.   Looking forward to a lot more of them over the next few days to catch up!

Thanks to Lori for checking in via text, right after we walked out of the Dr. office, I get the “Hey Lady, just thinking about you this morning”  and it seemed like another jinx moment in my life.  I was bursting with joy and my sister, Connee and my son, Andrew, were with me and we were laughing and carrying on.  But I cannot stress how important it has been for me over the past 3 weeks to get all of your random texts, jibjab videos, screen shots, cowboy videos, horse pics, sunset pictures, blue ski pictures, Hawaii beach pics, cat pics, triathalon pics, goofy pintrest fails, funny and touchy cards, and overall SUPPORT!  They are a huge distraction and were so much fun to share with the nurses when they were coming and going.  Breaks up the tedious routine, when we get a room laughing and sharing silly stories. Everyone has a story so you can only image how many new ones I have now from the Station 9-4 team.

This is the first time in my life that I think about the saying ” it takes a village”.  This was a team event from day 1.  From the very first day of my road trip to MN, you have all been there for me and the randomness of when I get a text is awesome.  From a 5:00 am to a 12:00 am, it seemed like someone out there was thinking about me and then I had family with me 24/7 for 3 weeks and that has been incredible to spend the 1 x 1 time together, with no outside distractions.

I am so blessed to have friends from Hawaii to NJ and everywhere in between.  Love you all more than you know!!

It is time to head back to the Mayo Spa for my final ” treatment”  🙂

We went in today for the regular check up and labs.  We had to wait around for a bit to get results back but they were awesome and confirmed the continued path to release tomorrow.

Then we had an appointment with the Transplant coordinator.  No one came in our room for a while so Connee and I were being silly, as usual, and taking crazy selfie’s.  We were cracking ourselves up and laughing out loud when the door opens and she walks in.  She was sweet and liked our sense of humor, so we got along great.  We had to review the past 2 weeks and discuss high level expectations for the rest of the year.  Next appointment is tomorrow, 7:00 AM for labs, one more time.  Then I get to meet with Dr. Dingli and review again.  Later tomorrow I will get the “Hickman port” removed from my chest and then I am FREE to go home!!!

We will drive back to Denver on Sunday.  YEEHA – I am so excited to be back home.  We built a new house and moved in Dec. 22nd, so it will be perfect to go back to a clean and sparkling house to recuperate in. 🙂

When I started this journey I had asked one of the nurses what the best day release was and she guessed Day # 18.  MINE IS DAY # 16!!  They have about 500 stem cell transplants a year go through their station 94, so I can only imagine how each week flies by for that team.  While I was here, they were averaging 33 in the out-patient program a week.  I will definitely take them ” Thank You” gifts tomorrow morning.  All of them were so fantastic and took incredible care of me while I was in their program!

The biggest side effect I have now is fatigue, so a lot of naps over the next few days to catch up, but it is all up hill now.

5:42 Nap time  – XO

 

It was such a delight to have a nice, normal sleep last night!  I woke up refreshed and thankful for the sunshine here.  The clouds finally moved on, after 5 days of gloom.

We went to the appointment at 11:00 and they took labs right away and then the regular checkup and vitals.  Several nurses coming and going.  About 1/2 later, some results were starting to come in. The 2 things I need to get going are platelets, over 50, and neutrophils over .50.    Teresa, my nurse tells me that the platelets jumped from 35 yesterday to 88 today. WOW !  that was huge news and they were excited for me.  I have to hit both goals but need to hold them for 3 days or exceed this number, which could happen tomorrow, to go home to Denver.

The Doctor stops by and we chat, rash is almost gone now, I am feeling really good, and I wanted to ask about setting a date for check out.  I knew we were pushing it for Monday, since that is only day 19, and the standard is 21, but I know I am ahead of the “standard”.  She said I needed to get some potassium drips, because it dipped lower than normal.  Fine, give it to me and let me take a nice nap while I am here.  So they hook me up and expect this to take about 3 hours.  She told me she would start to work on scheduling the check out appointments for early next week.

I asked Teresa, my nurse, why the potassium was dropping and she told me the cells are using it to re-produce and at the rate this is happening, this is too be expected. She reminds me to hydrate and eat more than normal to help give them fuel.  Almost like little explosions going on inside to re-create my immune system.  Fascinating!! I have learned so much since the beginning of this month and I am grateful for the team here at Mayo.  They are so friendly and willing to help me with anything and answer any questions and always with a smile or a laugh.

I order room service and settle in for a nice lunch and a nap.  About an hour later, she comes back so excited and wakes me up.  “Your neutrophils jumped, from yesterday, .70 to 2.43 !!!   Phenomenal work and she will now change appointments to FRIDAY.  Unless something unusual changes tomorrow, I might be able to leave and head home on Saturday or Sunday!!!    If I get released on Friday, that will be Day # 16.

It is a FABULOUS Day!  But of course, I am pretty exhausted from not sleeping much over the past week, so lights out.  More tomorrow.

XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOX

Good morning – truly – the nurse had taken the blood so early that the results came back right away at 6:00 AM.  Ken woke me up by calling me ‘Miss Overachiever’ He went to our white board where I keep the lab numbers and the pink goal posty notes.:

Goal to be released and able to drive back to Denver is this:  Neutrophils must hold at minimum or more of .50 for 3 days and at the same time the platelets must hold at 50 or more for three days.

Neutrophils yesterday were .18  TODAY .71   – this is huge accomplishment

Platelets yesterday were 24   – TODAY  35

we are very pleased but I would like to sleep more, but now I am up.

7:00 Dr arrives to tell me the good news and they are impressed and expect it to move every day now and it should go higher faster, potential a drop one day but too not worry about,  Millions of stem cells are now reproducing cells. He will be back he tells me.

I order room service, music, cell phone and laptop in place, I get into my zone, but of course, the 2 Dr’s return, then nurse needs vitals and on and on.  after the borage of staff, the decision is made to send me home and to return to our out-patient appointments.

Next, Heavenly Lizzie, the massage therapist, drops in and she gives me round 2 of the massage.  This time I could not even more after it was over, I was so relaxed.  She wrapped me in a hot blanket and disappeared.  LIFE IS GOOD; here at the Mayo Spa.

I get in a few yoga stretches, take a shower, have one the of girls pop in and shave my head; bye bye hair; then pack stuff, take more meds, and go over the paperwork for discharge.  Connee gets there by 3:00 and we load up and head back to the Rochester house.  My dogs were so excited to see me and like wise 🙂

It was non-stop for hours!!

I am so tired I can barely keep my eyes open to finish this, so we are done.  Sweet Dreams.

 

 

I swear the nurse team likes to sneak in and take blood, just for fun…and earlier every day!  Which is not really a problem since I hardly ever sleep, it is nice to have a little company every couple of hours 🙂

It is very apparent that my side effects need a lot of Dr. attention because one stops in around 7:00 to review the labs that they took in the wee hours of the morning.  Today is great because the reversal has started and numbers are growing!  slight increase but that is what we all needed to see to confirm engraftment.   Final confirmation is that the crazy, red lizard looking rash that took over my body is a good thing~~Engraftment Rash is proof of the cell reproduction process.  Although one of my Dr.’s called mine “angry”.  Interesting word chose, I thought.  Maybe it was angry because it had to wake up too early, since they did not expect it for another 2 days.

I think it is going to be quiet for about an hour, so I order room service for breakfast, set up a nice corner chair for our Monday conference call and turn my ipad on to some music in the other corner.  Lounged out with the breakfast tray in my lap, I dial into the Central Midwest Conference Call, to check in and say hi to the team.  Then I mute the phone, eat breakfast and then WHAT???  Darn it, the Dr. comes back in with another Dr.  So I apologize, turn off the cell, hand off the tray to one of them and the other Dr. sits in my bed.  Should I turn off the music, I asked.  “No, it is fine, like this song.” he says.  We discuss the rash again and the med plan for the day to get it under control.  I am impressed with their consultative approach. It makes me feel special to know that when I am there, I will see 2-3 Dr’s 2-4 times a day.   Unbelievable, genuine concern and curiosity  for what was happening to me and what I was dealing with.  I thanked them and they had a hard time accepting it.  They kept telling me that I was doing all of the hard work and thanks to me for doing it all and having such a great attitude.  I replied with ” Why wouldn’t I when I get to stay in the Four Seasons of Mayo?   they just give me huge smiles and off they go.  ( I had told them what I do for work and how I know the luxury business very well and Mayo Clinic is right there too )

Next step a whole bunch of IV drips to continue the war on the rash and to calm it down.  Steroids and antibiotics.  These are just so easy and do not effect me in any way and I can drag the IV tree anywhere, so I don’t pay any attention to it.

THEN IT GOT REALLY GOOD- my wait list massage therapist showed up and gave me an incredibly relaxing massage, in my private room with a view!  She has access to my labs, so can adjust therapy pressure.  Highly trained to work on the cancer transplant floors.  Lizzie, You must come see me tomorrow.  What a Perk.

So now the Mayo Clinic is definitely the Mayo Spa, to me,

Sean & Lauren stopped by for a couple hours and bought me a Fire HD 8 tablet!   It is to be solely used for movies, games, and music…or FUN ENTERTAINMENT..NO CINTAS .. I do not have any personal gadget that does not have Cintas involved, so they thought I needed this new device and it is super exciting.  THANKS !

After they left, I found out I needed to transfer rooms and move from the out-patient pod to the in-patient pod, since I really was in-patient.  I told the I still wanted a large room with a view to maintain the standard they had set in my current room.

I packed up and Connee came back to assist with the move.   I was escorted over to it and shown 2 windows, not just 1, that look at a beautiful brick wall.  “But the birds like to hang out on this corner, so if you look down about 3 floors you can see them” is what the nurse told me. She tried and it did let more light shine in, so what could I do.  Loved the new room.   Than back to the onslaught of meds, lotion for rash, prune juice for digestion, and meds to help me fall asleep, which is needed to counteract the steroids that give me a huge buzz and insomnia.

I am still in awe of the amount of meds running into me and how they can mix and match and I can feel great?!   Seriously tired, but I can deal with that.  Nurse Ken took care of me and had me take a sleep med at 8:00 to get me started and then again at 10:00 and it WORKED!  I slept until he gently woke my at 2:30 to sneak blood for labs, and told me I was dreaming and  I had to go back to sleep.  which I did and slept to 5:30 .  Best night in a week.

Thanks to all of you that send texts to keep me laughing and smiling and feeling love and support all day long!   It truly is helpful.  Such a great distraction from what is happening at that moment in the room .

 

Well the team here certainly loves to get started early!  one nurse came in about 4:30 to take labs, I was half asleep but so easy these days to just flip him my ” tubes that are temporarily connected to my chest” and keep on sleeping.  Then 1/2 later, vitals – BP, Pulse temp, weight, …and so on until about 1:00.  The engraftment officially started, which means the early morning labs showed an increase, very small, but it proved the stem cells were re-producing, white cells that were so low, TLC ; too low to count, now had a measurable value and my platelets moved from a low off 11 to 14. HUGE and Fantastic news!  the downward trend is over.

Before I forget, I must tell you that I lost the bet on the rash diagnosis.. I believed it had to do with the pain med and I stopped taking it for 48 hours.  The rash did NOT go away and the Pain went from average of 2- 8 on a scale of 0-10.  So I paid the price for ignorance, but since I can be pretty stubborn, I took it and “manned” up . ha ha

The Dr. was right of course – the rash was caused by the engraftment process and it started earlier than expected, so it took them 48 hours and the values to start trending upwards to confirm it.

It was still early, about 8:30, and I was getting pretty stiff from sitting in bed too much.  So I put a sheet on the floor in the corner of the room and started some stretching exercise from yoga, then room service brought my breakfast and decided to move to the floor because it was comfortable. Now, if you can image, the nurse pops in to start the first IV…opps!  but she was very cool and thought it was pretty cool that I was doing what was good for me. So I did not get up and continued .  When I finished eating, I had just stood up and sat on the side of the bed, when 2 Doctors pop in ! UGH…they walk right over to me corner and me, see the blanket and food tray and give me the stern look of “WHAT?”  I explain and tell them I am done and they can move the tray and sheet now.  One gives me a bit of a smirk, holding back a laugh, I am sure, but the other one is much more stern. He went right into the drill about symptoms and med, etc..  they finished and left and I just cracked up!  Another first for the team at station 94.

I live by the rule ” Life begins when you get out of your comfort zone”.

My son, Sean who is here visiting from CO, basically told me ” don’t be an idiot – get the tramadol for 2 more days and then you can get off it”.  I listened and called the nurse.  30 minutes later, everything was good again.  Gotta love when your kids give you good advise. He is now 26 and he learned well and had a few life experiences under his belt on the medical side, now I am letting him step up and be my caregiver for a few days. I LOVE HIM more than he will ever know.  Lauren you are a lucky woman to have him for the rest of your life. XO  ( OK he is even more lucky to have you for the rest of his life, but you still have to share him with me…)

Whewww..the tears flowed on that one….

The team here had me hooked up to IV drips continuously from 9:00 – 1:00.  so many things.  Mostly antibiotics to be proactive against potential infections since I have nothing left to fight anything.  No side effects.  Then I got a Potassium drip.  I was not familiar with that and asked why.  Potassium is needed in the normal range to keep your heart working. It helps send the electrical currents to your heart to keep the rhythmic beat happening.  If it drops low, than the heart rate can skip or worse..  OK that is a very important boost – put it in, stat !

Bob L. sent me a text to check in on my ” spa visit and wanted to know if they were bringing me cocktails?  so I sent him a pic of my Gatorade and my IV tree of goodies.  You know Bob, he wanted to know if they were filled with Gin!   I told him I did not know but either way they made me feel really good, so bring it on. He is my latest BFF from the east coast and checking in via text every day.  XOXOXO

Happening at the same time was the Lavaman in Hawaii that Cindy and Steph were racing in, that I mentioned in the last post.  So Karen ,who lives in Hawaii, and I were also texting.  In MN the skies were white overcast for 3 days and I needed some blue ski pictures so I asked Karen for a couple.  She sends me 2 from her back yard that includes a lime tree.  She tells me that her and Dallas call it their ” Gin & Tonic” tree!  How lucky are they?  She should hook us up for our annual meeting with home grown limes.  ( I did not even know you could have a lime tree in your yard?  that is like foreign to me from CO.)

I requested another home made dinner from Sean & Lauren and off they went to grocery shop.  Came back a few hours later with Baked Talapia, rice and peas!  What am I going to do when they leave today?  CONNEE – are you up for the task?  Maybe your Duluth Finlander breakfast with GF potatoes instead of tater tots?   And Sean and Lauren are both Engineer computer/business ultra intelligent brainiacs, so they spent time analyzing my Cintas laptop, work processes, special order and mat manual processes and we came up with a PLAN – OMG! even if 1/3 of it works, I am going to save 5-10 hours a week in tracking and manual organization.  They just think different and have the on hands experience from their jobs with Twitter and a start up Denver co.  Stay tuned,,,, if we get it set up and it works for me, I will definitely share!

Before they left me for the day, he set me up with his flipping amazing headphones and put Plex on my laptop, so I could watch Jumangi in my new ” MOVIE EXPERIENCE” in the room.  It was too good, because even with the final painkiller and the sleeping aid, I still  made it to 1:00 AM and then crashed into dream world.

The day started a bit rough but ended as one of my best days so far.  Thanks to everyone again for the connections and support.

Last week I found out that 2 of my girlfriends were both heading to Hawaii for the Lavaman Triathalon today! Steph is from Denver and Cindy is from Seattle. I admire them both for many reasons and adore their strength and commitment to take on the marathon life style! ( I hope you guys don’t mind that I added in your pics but they show us all that to work hard and finish even stronger is not easy but you pulled it off and shared that moment with me today! It meant so much to me that we were all connected through the day). After I got the quote poster from Cindy, I re -wrote it on my white board in my hospital room so I see all the time. Great visual to keep me and my team on the right path, hour by hour!

So here I am in my own ” marathon” of sorts and thinking in terms of how to plan, prepare, train, and the commit to it and perform it, very similar.

I am half way home now. Day 9 & 10 were the days I bottomed out of white blood cells and platelets. Most everything else is pretty normal, which is fascinating isn’t it? That this chemo can go in and specifically choose what to kill off and what not to kill off.

But then things show up, like a mystery rash? Morning appointment on Friday was pretty average with “let’s watch this rash. “. By Friday night appointment it became ” I don’t think its from engraftment because that would be a couple days too early” but ” I am not sure it’s from a medicine we gave you” so let’s watch it. Then they decided to give antibiotics just in case ( I have zero immune system left now) and then after 4 hours of IV, for some unknown reason, I develop urine retention?!? More than you want to know, I get it! But that means, I couldn’t figure out how to pee? Like my brain just lost the signal to say “go”? It’s about 10 pm and they tell me if I can pee by 2:00 am I can go home, if not, they will admit me. No luck- so weird! And now we are exhausted 😴 Connee was with me the whole time. So finally at 3:00 am they make the call to admit me. Fine- just let me sleep and sent Connee home to the dogs.

Wake up Day 10 – Saturday pretty exhausted with just a few hours of sleep.

Dr’s come around, labs are taken. Discussions about rash, confused bladder? Review meds- seriously, so many they have moved on to page 2. Amazing how they can all co-mingle together in a body. I think the latest one called tramadol gave me the rash but they disagree. I didn’t like it anyway so I stopped it and told them that if the rash went away in 48 hours, when the med gets out of body, then I win! They laugh at me. And tell me I need to stay in the hospital for 3-4 days while I start this engraftment. I guess its better this way because it will force me to slow down and it will be easier them to track all of these weird little mystery symptoms.

So, I guess this is the part of a marathon when your past the starting excitement and you are getting into the routine and then some aches and pains start to to show up. And your brain has been trained for this, so it kicks in and gives you the courage to push harder with each forward movement?!

I am going with that philosophy.

Sean, my son, who lives in Boulder, with his wife, Lauren, flew out to MN today to see me! They stopped by for a visit and then I sent them home ( our temporary Rochester home) and asked them to make dinner for me and bring it back.

They made baked fresh salmon and roasted potatoes and it was delicious 😋

Thanks guys! Best hospital dinner ever! I wonder how you will top it for Sunday night?

And the really good news of the day…..

I figured out how to pee again. Thank goodness that was short lived …..

GOOD LUCK – Steph and Cindy! I will try to catch some live feed online later today.

Until tomorrow, thanks for all of your love and support!

I guess I was due to run out of energy at some point? Right? So I am taking a break at the Clinic for a few hours to just relax and do nothing. Which is not easy for me so, Now I am trying to figure out how to insert photos.. these are some of the awesome care package surprises I recently received from you guys!

My husband and I own a small, country convenience liquor store, south of Denver. It is more like a Cheers bar because its all about the local community and we have met so many dear friends through it. It started as a business plan and of course, it needs to cover the costs, but it quickly turned into a meeting place for locals and Jim molded into something very special.

I had to give a little background because you never know when or where you will find new friends that seem to become family over time. Always be open and accepting and get out of your comfort zone. The rewards are rich when you gain new friendships!

Carolyn and Mike are our latest addition to our family and they make us smile everyday!

Enjoy Az ☀️