Gifts of encouragement...

Right now I have many people contacting me asking what they can do to help. I am working to get our "Lots of Helping Hands" website up and working so that I can start delegating tasks to those in the immediate area who can help. However for those who are not able to be in the area who are wondering what they can do right now. An email to mom/post on her caring bridge/a hand written letter would probably mean the world to her. When she's up for visitors we will let you know about that as well.

For those of you looking to send a gift, I am sorry but the "traditional" gifts of flowers or chocolate simply won't work at this time. Flowers/plants are a BIG NO because of the scent and it's possible affect on her sinuses-additional nausea because of the smell, plus each plant that would come near her would have the possibility of creating an infection because of the fungi that the plants carry.

I'm not 100% sure about the chocolate but they are strictly monitoring her diet right now to prevent her from lacking nutition during this process.

However I have had a few people asking what they can send which lead me to research, during my lunch hour, gifts to send to chemo patients. And I stumbled upon the following link:

http://ask.metafilter.com/76798/good-gifts-for-a-chemo-patient

Some of these are very creative gifts.

I will be going to see mom tonight and will try to get another update on her this evening. So far through our emails it sounds like she started chemo this morning at around 10am. So here we go again...

Another update-location, relocation...mom's at the spa...just kidding!

Felt like we were packing for a three week vacation this morning at about 8am...except that it will be in isolation and with HEAVY chemo regiments which will soon cause her to be vomiting profusely, lose her hair and hopefully will lead to her leukemia entering remission. The result of which would allow her to, hopefully, have the Bone Marrow Transplant as initially planned.

Well with two suitcases and a couple of bags we packed up my car and headed into the hospital. Arrived checked in with the valet service, moved on to admission, made our way up her room, and started unpacking...

Not that it's a huge room, by any means, but we brought plenty of cloths, games, journals, books, and beautiful photos from Vermont :) So now it's a bit warmed up.

Mean while during this whole time...

We had SEVERAL visitors, including, but not limited, to:

-Her doctor and his fellow

-Her resident stopped by several times (in between a "code blue" for another patient) and several pages

- The lab tech stopped by to check her counts

- Her nurse, well I think actually two different nurses assigned to her check in, took vitals twice

- A couple of old friends from when she worked at the hospital stopped by to say hi

- Her social worker stopped by, shocked that Mom was suddenly part of her rounds after we'd seen her at the BMT support group last Tuesday but said she'd stop by again soon to check with Mom if she needed anything

- Talked to Ali and one other friend during some down time

- She met with one of the three chaplains for this department

- Now onto an ultrasound of her heart to make sure everything is ready for the heavy round of chemo

And, mind you, this has only been 3 hours since we first arrived...I am lucky to have remembered the names of half the staff so far, thank goodness all of them will be working most of the next 3-4 weeks on this site so maybe I will have all of them memorized by the end of it.

Well here we go team...chemo will be starting later tonight. Praying it goes as easily as it did last time, though I know this round will be MUCH harder on her than the last round. But at this point she's still in good humor and ready for the good fight ahead. Those meeting her are easily becoming new friends on site, often describing her "irresistibly bubbly" personality (funny since I have been described that way in the past as well).

SHOUT OUT!!!

Thank you all for the wonderful outpouring of love and support! Your words and prayers mean more than you will ever know. We both sincerely appreciate and are overwhelmed by the outpouring we have received from all of you!

I'll post more as soon as we get an update from the doctors. Blessings!

-Kate

Well....that wasn't expected.

Mom went in this morning to have her labs run, had a Bone Marrow Biopsy, and a double bag transfusion...ya know the usual-or so it is starting to seem in our lives. I met her mid-process after I finished work. Ya know right around the time the CEILING collapsed in the transfusion clinic! There was a MAJOR flood!! And this was in the second floor of the building-thank goodness no one was in there at the time-and all the patients were able to be transferred to another site to finish up. By the time I met up with her, after getting lost and confused as to where my mother was in the middle of this crisis at the U, she was onto her first transfusion. So we watched Oprah and her new sister on Oprah's show and waited for the rest of the process to wrap up. Mom finished all of it like a pro and we were on our way home.

Around 15 minutes into the drive she mentioned itchiness. By the time we got home she has started developing hives as a reaction to the second transfusion of blood. She called the triage nurse and I ran for benadryl at Walgreen's. By the time I got home and we got the meds into her system her doctor was calling. He asked how she was feeling and if she had either of her daughters around. She said yes and then the news came.

The biopsy this morning revealed that her disease had progressed to Leukemia (I believe this is the correct name for her "type" http://en.wikipedia.org/wiki/Acute_myeloid_leukemia but I will confirm tomorrow). Needless to say this is not good. Next step: He doctor wants her admitted for a minimum of 3 weeks of intense chemo regiments at the hospital starting tomorrow. He wants her admitted for two reasons: 1.) her counts are so low that she easily could develop an infection at this point so she needs to be in isolation with the sterile hospital environment, 2.) She will be cared for during this period by the hospital staff during these intense chemo rounds with the hope of remission of the Leukemia-at least long enough for a transplant.

Needless to say, this was not the day either of us was expecting we both have been having a hard time with the delay of chemo due to her counts these past two weeks-well...now she gets it for 3. Not exactly the deal we were praying for.

So that's the latest update. I will try to post more as I know it. LOVE YOU ALL! Thank you so much for the prayers and support we will really need them these next few weeks...

Just a heads up...

So after a couple conversations in the last few days with loved ones I have realized that I should make something clear:

I am NOT looking for a pity party. I am NOT the patient. (And to be honest the pity distracts me from my focus, both on my mom and my own life). In other words, I need to live my life and not dwell on the sadness and frustration that keeps filling my life. I need to "live and not dwell".

So my request from all of you is to be company for me and wonderful listeners. If I need more I will ask for it. Thank you all for your wonderful support and assistance in my distraction! ;-)


***FYI: Update on my mom...due to the fact that her counts dropped even lower-AFTER her double blood bag transfusion-she's going to be having ANOTHER bone marrow biopsy on Monday. So prayers that they find something so that we know when, and if, she will be able to start chemo again.

Sometimes you just need to DANCE IT OUT!!!

Mood has been exponentially increased. Having affirmation that "ya know not everything is ALWAYS in your control, so let it go and let live" and "don't let mom's health prevent you, or her, from LIVING your lives" so on that note...let the dance party begin!! (DYFIT style!)
(http://www.facebook.com/pages/Dont-you-feel-it-too/133258330914)



Sound track for dancing tonight in the streets of Saint Paul included:

Switchfoot's "Beautiful Letdown" soundtrack (http://www.switchfoot.com/)
Will.I.Am's "Dance to the Music" (http://www.youtube.com/watch?v=KPHZhaKfb3s)
Wrapping up the night with Macy Gray's "Beauty in the World"
http://www.youtube.com/watch?v=0qX7ZsxD3Ik&ob=av2em

Another twist...

Apparently since mom's body is being so wacky...they've decided to do another bone marrow biopsy next week...so I am thinking no chemo next week either. Arg! More updates to come...including a terminology blog when I become more fluent. Love you all!

Another bad week...

Just got an email from mom, she had her counts take again this morning, after the blood transfusion last Thursday. And after only 3 hrs she already has been told that:

"Chemo for this week cancelled again because [her]counts are EVEN lower than before! As a result [she is] very high risk for infections so [she is] supposed to wear a mask.... she's waiting to see if [her doctor] wants to give [her] growth factors to stimulate production of these cells OR still just wait and see how long it takes for them to come up on their own ..."


Needless to say my schedule has changed yet again, and I am getting more and more frusterated with this situation-NOT at my mom just at the disease and her cells that are preventing her from moving forward in this process.

So prayers for her counts to bounce back so she can start chemo (Round 2), and patience and peace for all of us, as well as good health for my mom and sister would be appreciated.

And if you have some free time I could use some company this week. I keep tightening my schedule so I am available for my mom during chemo and it keeps being postponed so I could use some distraction. Thanks.

FMLA (F*** My Life Association) ?

Sorry it was a joke...FMLA actually stands for Family Medical Leave Act, which is a law that requires your employer to maintain your wages and your job during a family crisis...I may or may not have to use this when my mom has her double cord blood transplant. But it might end up being a FML type scenario since my 40 hour/week employer, that offers FMLA, only offers the first two weeks (of the 12 available) to be paid-since that's all the PTO I have. After this point, though my job would be secured for 12 weeks-I would still be without pay for 10 weeks and would have to opay my own benefit premiums out of pocket! This hopefully, once we plan and hold the event, would be partially covered by the funds raise by a fundraiser for my mom to help off-set the costs of this process.

Current update on mom, she had a blood transfusion yesterday and is feeling exponentially better since her hemoglobin is back up and hopefully will be back to the right levels for her Round 2 of chemo starting Tuesday of next week (since Monday's a holiday). So that's that.

For those of you who are like me and have no working knowledge of anything from science class from high school anymore, aka me...I am sorry but it didn't seem like important information to retain here's a general guide to the cells in your body:

http://www.haemonetics.com/site/content/bloodsupply/blood101.asp

Well back to work! Happy Friday Everyone!

Back to reality-first set back so far

Back to reality...current update on mom:
Soooo...mom was supposed to be starting Round 2 of chemotherapy today. Instead, she went back in to have her labs taken this morning, since last Thursday her white cells were down and out and the platelets were climbing again. Well it turns out it's only continued on it's trend. So now the game plan is to have a blood transfusion on Thursday and reschedule chemo for next week (five days on) assuming her labs come back ok next Monday. So keep the crew in prayers-specially mom and her doctors and other staff. Thanks for the support everyone.

Trying to remind myself to find the beauty in everything...including the junk/trash and remembered this photo:


(http://browse.deviantart.com/?q=ahermin&order=9&offset=120#/d14h19u)

Dark and Twisty (WARNING:SPOILERS OF BLACK SWAN)

So first things first. FINALLY went to go see Black Swan (http://www.imdb.com/title/tt0947798/) and it was marvelous in that it was the most raw and honest portrayal of self distruction I have ever seen in film. Natalie Portman is definately one of the most BRILLIANT actresses of our generation. And I am SURE her Harvard BA in Psychology helped her get into the skin/wings of her character in this film. The depth that she brought herself to in the development of this movie was genius! Honestly it is my current favorite! For though it is a dark and twisted film, it has lead me to fall even more in love with Natalie- not only for her acting abilities but her ability to maintain a quiet and healthy life outside of film. She's one of the few actresses out there who only chooses to be in the limelight when it serves a purpose to bring attention to her work. Her co-stars: Mila Kunis and Vincent Cassel (even Winona Ryder) are all wonderful supporting cast in that they lead her to an even more dark and twisty place than I could have thought possible. Gah! So after all this raving...I still have to say I felt that this film was hyped by Hollywood and the general public a bit to much and kinda wish I'ed seen it before I was influenced by the opinions of everyone else. SO if you choose to go see this film-keep expectations low and watch for the showcasing of incredible talent. Overall it was a great film!

Looking Forward...

Round Two is just around the corner...Chemo that is, if her counts allow her. She had everything tested today and it sounds like she'll need to be re-tested on Monday before she starts her second battle. Mom will is currently scheduled for her second round of chemotherapy Monday-Friday of next week.

So this is me asking for prayers for all of us right now. We are all VERY strong women but between the holidays, people getting sick, work, and life... we are all running pretty ragged right now. So a kind word or text would mean the world to Mom, Ali and I. Thanks everyone for your continued support.

With love,
Kate

On a lighter note: Eddie Izzard is AMAZING...and is currenlty keeping me company during my lunch hour...or rather his "Dressed to Kill" tour of him is...this was my favorite from today:
http://www.youtube.com/watch?v=tKfeJ2mw0LU

Take a breath...and then another...

Sometimes those days come when the darkness seems to swallow up all light in its path...till it becomes so dark that you can't even see yourself within it. And yet some how you find the strength to keep pursuing the path once set before you. The inner fire driving you back into the world you burst from the darkness and dance in the light that surrounds you. Dancing with such passion as you have never danced before. A hope renewed. Yup it's been one of those weeks and it's only Tuesday! Just going to say this is a shout out to the force that is beyond me, the one that lay the right conversations, images (see below) and songs (see Sarah McLachlan's "Forgiveness" (http://www.youtube.com/watch?v=GKi86JYwMYk) and Sia's "Breath Me" from previous posting) in my path during my journey these last couple days. That loving comforting presence is more real than my own heartbeat within my chest...

So here's to you my beloved. Thank you for all of your grace and silent comfort. And blessings to you my dear friends.

Current song in my heart and in my head...

http://www.youtube.com/watch?v=ghPcYqn0p4Y

Help, I have done it again I have been here many times before Hurt myself again today And, the worst part is there's no-one else to blame Be my friend Hold me, wrap me up Unfold me I am small I'm needy Warm me up And breathe me Ouch I have lost myself again Lost myself and I am nowhere to be found, Yeah I think that I might break I've lost myself again and I feel unsafe Be my friend Hold me, wrap me up Unfold me I am small I'm needy Warm me up And breathe me Be my friend Hold me, wrap me up Unfold me I am small I'm needy Warm me up And breathe me

***on a side note: no, I haven't actually hurt myself and I am not suicidal...I'm just a little overwhelmed by life right at this moment...and could use a hug and time to breath...***

Another year begins, another series of adventures...

Shout out to my mother blogger extraordinaire! Loving her bit about the Black Eyed Peas! :)
http://www.caringbridge.org/visit/dixiewolfe !!!

My new years eve was one outside of the state-MUCH warmer climate! I traveled to sunny Charleston, SC for my friends, Kelly and Jonathan, wedding celebration weekend! :)


Though it was a much needed session of party time and sun it was also VERY busy! I flew in on Thursday, mid-day, and out on Saturday, mid-day...with adventures around town and the New Years Eve Wedding squished into the 48 hour turn around...in the end I wound up completely exhausted but glad to be a participant in the couple's celebrations. Definitely a memorable NYE! (And a glimpse into the historical city).

Here's couple photos from the trip to give you a taste...



Mental processing as of late:
I know at some point in the last week or so I have talked to people about wanting to stop the clock that's keeping life flying by, but now I feel like it has been stopped in my world. My life right now is focused solely around my mother and her treatment while, it seems, everyone else is still moving through theirs. I am feeling frozen in time unable to communicate or express my questions, concerns, and fears of what's to come. I feel like I need a support group Guru to help train me in the steps to come. I have read many articles about the process and the medical side of it, and the emotional for that matter, but none on how to organize and explain to those around you what's going through your mind. This is not to say that I don't appreciate conversation or messages from people about the situation-I love to be able to process my experience with others. I just hate feeling like I am throwing a "pity party" when I am not even the patient. Ok done with my word vomit and off to bed. Gnight all!

Thanks to those who have been there so far and those who choose to read my ramblings I appreciate the support! Happy New Year everyone!