Mom's Spa Adventure Continued

So here's a quick update, I will try to get back later to post more. Mom's finally done with all the Interleuken-2 (IL-2) shots, the drug that keeps the NK cells revved up and aggressive. Half way through the doctor's did choose to drop them down to dosages of 2/3 instead of the full amounts. But basically after 2 weeks of non-stop fevering (ranging from 100-105) (AKA "Sweat Spa" treatment) and chills, mom is finally back to better health! (With one last fever of 101 yesterday.) Even her food is coming in fancy bags right now...though liquid form, that way she doesn't have to push herself to eat if she's not up for it. She's also quickly dropping fluid weight that she's retained during this process so if her weight seems different over the next week or so that's why. All of this was within "normal" side effects, infact according to the doctor's she did incredibly well with the treatment over all! :) Her counts are coming up day by day (here's keeping our fingers crossed that they are my cells not hers, in other words non-cancerous cells developing instead of Leukemia cells). Her White Blood Cells have jumped from 200 to 800 to 1000 to 1600 (see her caring bridge for details), needless to say her cells are coming back for the first time since going inpatient! :-D And she is now onto her first bone marrow biopsy today! So prayers that the interior of her person is currently behaving itself as well and that we are on our way to transplant!!! :-D Just wanted to say thank you all so VERY much for your love and continued support you are all part of our "cheering section" that keeps us going! :) With all my love, Kate


****Update****
"Unfortunately I should have knocked on wood before posting. Mom chilled and fevered 3 times today. So here's prayin' that my NK cells are keeping her body busy and that the results come back supporting the fact that all of this stress on her body is actually a good thing." (posted from facebook)

Rest required.

Facebook update: (3/22/11)
"Asking for prayers for Dixie Wolfe. In her own words she had "a hard day today". Spiking fevers of 103+ again (has been on and off all week) and a rash that's now covering her body (red and itchy). Prayers that these symptoms subside ASAP. She's not comfortable at all right now and having trouble sleeping because of the fevers.Thanks ...Team! I'll try to get a blog with updates up in the next day or two."

~~~~~~~~~~~~~~~~~~

Well since the transfusion of my NK cells last week it's been quite the roller coaster ride for mom. She started out day "0" (when she received the NK cells) with shakes ("rigors") and chills. And has progressed to fevers ranging between upper 90's and 104 (yesterday's temp). Though she had managed to keep it down for 1/2 of Monday when I went to visit her.

***correction: apparently mom's temp got up to 105.1 but was down to 101 by this afternoon when I checked in with my sister***

She stated over the phone yesterday that it'd be a "hard day". Her nausea has gotten to the point of being sick, where as during all of her chemo rounds (including this last one) she'd been able to keep her stomach in check. So prayers that the Interleuken-2 (IL-2) lets up a bit on her stomach so she can get a bit more nutrition into her body. Her mood is good, though she's slept the majority the last 36 hours, with the exception of when the times when the fevers are running high.

Unfortunately the fevers are a side effect and can only be treated with Tylenol. She also, on Thursday, developed a nasty red and itchy rash all over her body and because of her current treatment is only able to receive steroid cream instead of IV, because of her current treatment. So over all her body is responding, unfortunately the side effects are to be expected. (http://www.chemocare.com/BIO/il_2.asp)

Ali and I, along with a few family friends, are working on cleaning up the house in hopes that if she gets through this treatment and her counts come back, she might be able to be home for a bit before heading back in for transplant.

For those of you who are not medically knowledgeable, like myself, I will spend a bit of time translating here. I know I've explained the NK cells and IL-2, but the goal of this treatment is to get mom into "remission". In other words get the Leukemia out of her system/so beaten down that her system is weak enough to have the stem cells from a double cord blood transplant transfused into her system. Basically beat her blood cells to a pulp long enough for her body to be reset with new cells from another source. This would basically jump start her system and when the cells are recognized by her body and begin replicating the new cells (engraftment) she would not only be re-enforcing the remission from cancer, but also removing the genetic mutations that have caused her two blood disorders (Mylodisplastic and Myelopoliferative Disorders). Start from scratch and work up from there while establishing a whole new system within herself.


Planning on a Q & A session and/or blog next so if you have any questions please send me an email.

Day after D-Day (Donation Day)

Me during hour 4 of 5 for donation...


Well after a long day of adventures and a night of rest, and resting today...I thought it was about time I sent out an update to all of you. Most likely as I am typing this my mom is being infused the Interleukin-2 soaked NK cells that I donated yesterday. So prayers that they do their work and mom's system doesn't fight them.

The pretty NK cells...I think they look like a sunrise. :)

When I stopped by to visit her yesterday morning she was nauseous from the previous day of chemo and was a bit sleepy from the anti-nausea meds. By the time I finished my donation and went back to check on her (with my roommate) she was up and smiling and shocked to see me there-I was supposed to head straight home and rest but wanted to celebrate the moment for a little but. She's looked the best I've seen her look in a long time yesterday afternoon-and her low grade fevers only last that one day. So I think she's in the best place she can be to accept these cells. :-)

But I'll at least give you the breakdown of yesterday before we get into anything else...

Yesterday's schedule:

7:45am got to the U of MN with my roommate, went up to visit with mom for a bit.
8:00am had my 1st of 2 IVs placed. (Shortly after I lost my cell phone and my roommate and I found it in my car a 15 minutes later)...
9:00am was checked in and ready to go at the apheresis lab-got the second IV placed and started donation. Watched "A Fish Called Wanda," had a tasty salad lunch with the roomie, and then watched part of "Under the Tuscan Sun". During this time a family friend and my mom's social worker stopped by to say hi and check on my status.
Me all hooked up-and almost done this was hour 4 of 5...

Me with my wonderful roomie who was my chauffeur on the way home and marvelous assistant during the day! :) Love you roomie!

The Machine/ "Octopus" (according to my mom's cousin)...it separated my blood-kept the NK cells and returned the rest to me.

The final product! Those are the NK cells for mom (that she's having infused right now)!

2:30-3pm (sometime in there) I was done and on my way up to surprise mom with a visit and then headed to Chipotle for an early dinner with the roomie. Some time online catching people up and then fell asleep reading "The Girl Who Played with Fire".

Today has been a day of rest catching up on shows I've missed, doing updating and sleeping in. Tomorrow I am back to the grindstone (AKA work). Feeling great, though still feel like I could sleep the day away.

Prayers at this point:
- Mom's body accepting the NK cells and not having issues with side effects
- My sister's health. She just got home yesterday and has a sinus infection/possible cold. So prayers that she heals up soon so she can go see mom.
- Patience and strength for all of this experience for the Dixie's Chicks it's going to be a rough couple weeks-so if you have a free moment or a night free please give one of us a call. I know we will be tired but we will need to keep our spirits up during this time and company is always wonderful for that.

With all my love and gratitude for our INCREDIBLE team of support,
Kate

The Waiting Game

Well we are now days away (two to be exact) from D-day (donation of NK cells day). I will be donating them this Wednesday (currently referring to myself as "The Incubator" and avoiding booze, caffeine, and fatty foods like the plague..while hydrating like a camel). Had one last lab test today to re-confirm previous results so we can move forward.

My incredible roomie has agreed to be my "person" on that day. She'll be driving me to and from donation and keeping me company while I am there. We've put together a playlist for our i-pods and movies to entertain ourselves. It will start at 8am (CST) with the IV placements and then we will head over to the aphoresis department for 5-6 hours worth of NK cells donation for mom. They will then be soaked overnight in IL-2 (see previous blogs for details), washed, and then infused into mom on Thursday. So prayers starting Wednesday and going hard from here on out would be wonderful!

Updates on Mom:

- She feeling good though more nauseous with this chemo round, which in turn means that she's getting more anti-nausea meds, which then make her sleepy. So don't take it personally if she falls asleep while talking to you. Though according to one nurse since she finished (one of the three types of chemo) she should start feeling a bit less nauseous soon. :)

- As of tonight her naughty temp is on the climb again, right now it's "low grade" the high tonight was 99.6 (but it still sucks and we want it out of her system ASAP). So prayers for that too.

In other news:
My sister will be home over her spring break. She'll be flying in on the 17th and out on the 27th so be checking in with her as well to see if she needs anything as this will probably be a busy break for her too.

Thanks again loves for all the support and prayers you are all MARVELOUS beyond words!

Blessings and gratitude,
Kate

Things That Make Smile This Week

Sporadic moments in my past, and current, week that made me happy:

- My car insurance agent and her receptionist offering to donate cells if my mom needs them, almost made me cry

- The insurance field agent, who came to look at my car and assess the damage to the bumper,

found a dime on the ground, and handed to to me "saying your mom needs this more than I do"

- The music therapist who learned Michael Franti's song "Hey You (I Love You)" just for the Dixie's Chicks today

- Mom's nurse joking that the "crowd went wild" over her good temp and blood pressure, which then turned into mom's "goal" for the week...and now she's making all of the staff at the hospital "go wild" over her good health and attitude

- Mom's love of Mint Conditions from Caribou and the smile it brings to her face when I brought her two of them during this weekend :) She's missed the coffee in her life

- My bowling adventures with the Bou crew on Sunday-always a good time

- Movie night/pizza with the Bakers and Mikkii

Getting Our Games Faces On!

Well Team,

Last week my "half match" status was tested by blood typing tests and I was approved as of Friday. So more thorough exams for my Natural Killer (NK) Cells* begin tomorrow at noon. Mom and I are listening to Pat Benetar's "Hit Me with Your Best Shot," tonight, as motivation for the weeks to come. (http://www.youtube.com/watch?v=fa0KZFz-az4 ). Think 80's dance party as the theme for this round of treatment! ;-) I mean even "Love is a Battlefield" would work for this one!

*(NK cells: part of the immune system that specialize in fighting cancerous cells in our system).

Back to the basics- the extensive exams are to make sure I don't have any nasty bugs hiding in my system that could be transferred to her through this donation. For more details on this next treatment plan, see the link my mom shared with me: http://www.cancer.umn.edu/research/programs/transbioimmuno.html.

The biggest difference, between this treatment and the last one they tried, is that this one is more experimental than the last one. Her first treatment in-patient was straight "chemo" that's relatively standardized for Leukemia patients who's goal is remission and then transplant. The end result, though it dropped her blasts, was that is did not send the Leukemia into remission. In addition to the lack of remission, was a boat-load of side effects that showed up during the second round of chemo. She ended up getting donated granulocytes** (a part of the white cells) from unrelated donors during her second round of chemo because of an infection she acquired while she was in patient.

**(Granulocytes: specific parts of white cells, that served as a transfusion of the donor's immune system to help my mom's vulnerable system fight off the infection).

Thanks to the granulocytes, she's back to normal cultures and has gotten rid of the infection (as far as we can see). All in all it was a rough couple of weeks for mom but she's back on her way to health, we even got to the point that the nurses (and doctors) agreed that she was okay to go for a walk around the hospital today, so we did a mini (masked) walk-a-thon and she LOVED IT!

Treatment wise, we are back to learning from the past attempts and changing the parameters.

This treatment- will be mom getting 6 days of chemo before the transfusion of my cells, though this one will be 3 different types of chemo, in combination and variation, during those days. The goal being, that her system will be knocked on it's bum and be in a vulnerable enough state that it will accept my "foreign" cells and help her fight the Leukemia.

Think of the NK cells as little ninja pac-men kicking her Leukemia's butt! Though downside is, that each of the medications she will be on to support this effort have significant side effects. For one, the NK cells (like all "foreign cells") only last in the body for short time. So they will have a chemical called Inter-Leukin 2 (IL-2), which will keep them hyped up and aggressive, paired with the treatment. (Starting with the NK cells being marinated in the IL-2 for the first 24 hrs after donation, and continued injections into mom every two days.) Side effects for this drug alone include chills, fever, nausea/vomiting, among the top of the list side effects. So keep in mind, that when you come to visit mom that she will NOT be looking her best and will need major prayer ESPECIALLY during the first two weeks. When she will be facing her most difficult battle yet.

According to the doctors and nurses the first week will be the hardest and it's all down hill after that, a rough and bumpy hill, but still down hill non-the-less. So prayers, guestbook signing and support, and lots of hugs would be appreciated during the next month. More to come as we hear it but wanted to give you all a heads up! Thanks Team! Much love from Dixie's Chicks!

The Truth About Being Authentic.

Our discussion question tonight at Socates Cafe was: " How do we know our authentic self?" (And though I will honestly admit I was distracted for the majority of the conversation, because of life at present, the question itself haunted me on my way home). During the discussion there were subtopics of:

- A fluid/ever-changing authenticity of self
- The difference between the authenticity of self and the perceived "authenticity" of one's self by others
- Authenticity of self being the sacrifice of one's self-definition for the greater good, or God
- Authenticity should not be mistaken for the pursuit of happiness/nor does it require happiness
- Society's corruption of the authentic self, we are only authentic apart from society
- That authenticity is the consistent portrayal of one's self (in various settings and circumstances, a comfort in one's being)
- Authenticity vs. "real"
- Authenticity vs. integrity

The following is one of my favorite moments from the film V for Vendetta when Natalie Portman has a completely authentic, self actualizing moment in her journey:



But back to Socrates Cafe:


After all was said and done. I found myself in an introspective walk home. In my recent observation of myself, over the past month or so, I have found myself being more and more structured and self confining. Almost to the point of robotic-like behavior. I have developed a strict schedule, have becoming self-isolating, and am rarely choosing to display my emotions and concerns over events that have passed.

So in my own self-observing way, I have come to the conclusion that I need to mix things up! I need to be honest and vulnerable! And allow myself to be cared for by others, instead of forcing myself into this box of confined emotions and processing. It's hard for me.

On my walk home I found myself checking my emotions over the past few weeks and honestly found that I have rarely felt happiness, or a state of calm, apart from being with my mom. The hardest moments for me during these last five weeks, are when I leave her in that room alone and have to go live my own life. Which is incredibly hard for me to do right now. (An in-authenticity to my self, though I think I am being authentic in my recognition of it).

My response to that situation has been to create my own "room" of self isolation to try to allow myself to replicate the emotions and concerns I assume she feels in that enclosed space. I realize it's unhealthy but it's what my mind has, subconsciously, been working furiously at for weeks.

There have been select occasions where I have allowed myself to be accept the moment for what it was and enjoy it, apart from her. I have found this a few times at work and with friends. But when I am alone I often am so confounded by the chaos that seems to enveloping me I have become downhearted and angry. I think part of this is me not choosing to reach out to those who are offering to socialize. Constantly choosing to be overly cautious with my own choices and life at the risk of not truly allowing myself to live it.

So for those of you who are constantly trying to assist and distract me from my stress and confusion, I am sorry I keep pushing you off. My mom on the phone tonight mentioned how many people are talking to her and want "things" they can do to help. I need to accept the fact that, like she, I have many who love and care about me who want to be there for me and I am trying to play the martyr and do this all alone. That's not okay. And it's causing the compassion fatigue/robotic state I mentioned a few blogs back.

So here's the plan team. It's time for me to change things up! I am going to keep the schedule the same for seeing Mom on Mondays and Thursdays, but could do dinner by her hospital those nights, and will intentionally mess with my structured Tuesdays and Wednesdays. Weekends are incredibly busy for me these next few weeks with bridal showers, bachlorette parties, baby showers, weddings, etc so they are out (for now).

So if anyone is free and wants to come over and watch a movie at my place, go for a walk, or anything cheap and random I am game. So call me or text me! (And I am going to be honest, the budget for me is tight right now). But I need to get my people around me now more than ever. I am going to try to accept that being vulnerable and honest about my life, my fears, my hopes, etc is a good thing and allow myself to share that with others. Planning to try this theory for the next month, at a minimum-however PLEASE be aware that if anything come up with Mom suddenly she will obviously take priority!

So here's to being honest and authentic! Hoping to discuss reality with you soon! :)

Not much to tell...reading between the lines...

So apparently, even though I took the afternoon off to see mom, I still missed the doctor. Mom's doctor caught up with her yesterday morning and was happy to hear that the fevers she'd been having, while he was out of town, had dropped back to a healthy temp. *knocks on wood*

Then went on to discuss treatment plans that one of the other doctors had suggested, unfortunately mom wasn't awake enough to recall all of this later on and didn't have the chance to grab her tape recorder. Shoot. But the doctor did ask if she had any 1/2 match tissue type options (aka, me and my sister, or one of her siblings) in town. Her siblings have already been tissue typed, and when he heard I was local he ordered the test for 2pm yesterday. And as mom recalled he said he'd "be back later". (But maybe he meant another day? We didn't see any of them in the afternoon-despite my best hopes).

Needless to say I am having a hard time keeping hope down. I'd assume that since he was asking for the tissue typing, of all of us, it means the Natural Killer Cells (NK cells) plan is well on it's way! :) From what I recall from earlier discussions these little guys are part of our white cells, and the hospital is currently doing a study to use these (I believe). The study takes NKs they alter the original form that they'd take from us, the donors, and use them like little "pac-men"/"ninjas" (that's how I imagine them) to eat up/fight off the rest of the Leukemia blasts for mom's system. And the reason they'd want a half match is because it would be more compatible with mom's system, but still have enough difference in the typing to be a little feisty.

Well folks that's the news for now! Mom's still improving though still feeling a bit groggy/foggy from one of the many adventures she went on over the last few weeks. So prayers that her brain clears up back to it's normal state. Thanks everyone YOU ARE ALL AMAZING AND WE LOOOOOVVVVVEEEEE YOU!