Summer Daze of chemo:

The past two weeks have been both intensely surreal and chaotic, hence the lack of a new update. So sorry for the delay. I've had a tremendous amount on my plate aside from the diagnosis. Most important was moving my mother and her belongings into a newly available spot within the community she lives in before I was admitted. She now requires far more caregiving. Needless to say this was a tremendous endeavor, considering the timing and circumstances. 

On Monday July 7th I had a MUGA study test at Seattle Cancer Care Alliance (SCCA) to confirm heart pumping ability thru my left ventricle. This is to ensure the chemotherapy I receive thru my Hickman chest-tube will not pool in the ventricle. Tuesday the 8th I was admitted into University of Washington Medical Center and Chemo started right away. Rather daunting. I am now day 5 into my High Intensity Chemo, this the last day. Wednesday was the worst so far with nausea and a small bit of vomiting - only a glimpse of what may yet come. A new added element, my blood pressure has been running rather low. The lowest 89/43 and 88/52 but I have no other symptoms so we're simply monitoring it at this point. 

How am I feeling ? That's a loaded question. I'm still horrifically stunned I'm back in this place, again. My appetite is diminishing far sooner then I would have thought this time. The nausea is being masked (just barely) with various med's. My blood counts are dropping.... significantly, which is what we expected. I likewise needed my very first red blood cell (RBC) transfusion on Wed, far sooner than I thought. I've been surprisingly lethargic, likely due to my hematocrit being low at 24. It's a bit scary when all the blood lines bottom-out. This means I have no protection against virus, fungus, bacteria, etc. 

Once Neva returns and takes over posting these somewhat daily updates we will be posting bloods levels as well as an interactive calendar. Blood results are an extremely crucial element in charting the progression of the treatment. On a different note, there are several hospital regulations that must be observed on the Leukemia floor (8SA wing). As mentioned earlier no live flowers or plants. Home-made fully cooked food is always welcome (dependent on my appetite) but all food must stop off at the nursing station first. Only bring to the room what will be eaten. If food comes to my room first the leftovers can not be stored in the community Patient refrigerator. If you have a cold, or even just a runny nose please wait to visit until it has resolved. Neither I nor any of the other patients on this floor have enough cells on-board to fight against infections. Thanks so much for observing and understanding this.

Game plan is now 2 rounds (!!) of this high intensity Chemo, with perhaps 2-3 weeks of rest in-between - if all goes well.  Then, if I decide to carry on to another transplant, it will be a 6+ week wait after the final chemo. This would likely be sometime in/near November ??  This whole thing just kinda sucks pickles a bit.

Please continue to visit (rm 8420) or call thru the hospitals main # . Please don't be offended if I'm tired, or uber-spacey, I would still love to hear/see you. Maybe call 1st. If I'm feeling crappy I'll let you know. With that being said, please also don't wait for me to reach out and initiate contact first. Simply for the above mentioned reasons Everyone of you have been simply wonderful with the rallying calls for victory and offers of support. At the moment we think we will likely need help mid-Sept after the 2nd round of chemo. And again if we move onto Transplant. Potentially Nov, Dec, and into Jan. Yikes !!   

Again... WTF  ? ?

Kate has so graciously volunteered to be the point person this go-around. We are putting together a list of names who offered support and various needed skills. However it probably wouldn't hurt to reach out to Kate as well. Her e-mail is: 

            katred1969@hotmail.com

.

The group e-mail might be the last one sent out via internet. We will likely post updates, photo's and links directly to this web page. Please check in here every few days for the scoop.

             http://kristinasouthard.blogspot.com/

  

And....for odd cravings of the week:  a super dirty martini & tater tots     = ) 

Stay tuned

To Life

Kristina -

Oh, P.S.  does anyone have a good quality Baby Monitor they'd like to get rid of ?  This played a significant role in my nighttime monitoring right after the transplant 7 yrs ago...

I am speechless. And utterly stunned at the sheer amount of powerful words of encouragement, offers of support, and of course rallying cries to bust through the glass ceiling of odds. In fact I am stupefied. Each and every response was profoundly needed, desperately welcomed, and in the same breath a tiny bit heartbreaking as it likewise confirmed I am indeed in the same spot as before. My soul has been touched deeply by every single one of you, individually, and beyond anything you could even imagine. I am honored. Truly. Thank you All for touching my heart.

I will be admitted into UW Medical Center Seattle on July 7th. First priority is to beat the leukemia back into remission before we can consider any next steps. There are 2 chemo options on the table. One is an intense but standard protocol. The other is a similar & equally intense clinical trial. The length of stay in hospital will largely depend to how well I will fare and the degree of full time post-chemo caregiving needed at home. I may be admitted for an entire month. Instead of me sending out updates while likely feeling very much like ChemoCrap - and as we found necessary 7 years ago - we will be reviving my old Transplant web-page in an attempt to communicate on a regular basis & to keep everyone in the loop. Please simply Google "KristinaSouthard.org" or use the link below:

            http://kristinasouthard.blogspot.com/

For those of you onboard from last time you know how it works. For those who are new on this journey, most transplant patients have a Transplant webpage/journal for communication and to post blood levels. Daily blood counts are so very crucial to us. They measure our tiny successes. Although this round of chemo is not quite a "transplant" yet the webpage will have helpful links, daily postings of my progress, blood counts, and a calendar where volunteers can sign-up to lend helping hands. Even though much of this relapse is so unknown and dependent on my resiliency, we know I will need some help. We just don't know exactly for what yet....nor when. Fear not, we will put the call out when we know. Neva has volunteered to be the web-master this go around and will likewise be able to translate medical jargon into understandable layman's terms. We are also gathering names & numbers of those who have already offered their support. My fear is with everything I must manage & arrange at the moment it is so very very difficult for me to get back to each & every one of you personally. There simply aren't enough hours in a day. I have soooo very much to do. Continue to call & e-mail. But please forgive me..... Just know you are in my heart.

And lastly....if you're in Seattle, please swing by the hospital and perhaps save my sanity ? Snake charmers, dirty martinis, Burning Man fire shows & rowdy ozzie pub tunes all welcome.

I praise you, and thank you.

To Life !

Kristina   xo  

I Don't Know Where to Start

....truly. 

Nor do I really know what this all means....

Yesterday afternoon I was diagnosed with MDS/Leukemia...again. How Ironic, this being on the heels of the Leukemia Cup Regatta only 2 wks ago. And after 7 years of being cancer free. I am in utter disbelief. Simply numb. And just plain devastated. I just returned from North Africa only a few weeks ago. I just hiked 6+ miles up to Snow Lake in the Cascade Mountains (4000 ft) on Sunday. I simply don't understand how this can happen. I don't understand how this can happen yet again.  It's just not fair.

There are too many of you spread out across the country...and too many of you out around the world. Admittedly this is a rather crappy way to include you in the loop but there just isn't enough time to call everyone individually right now & explain. This is all rather sudden... I'm so sorry for this rather crude mode of communication but I love too dang many of you to not let you know. So.... just like last time, email is the best option. Except this time I'm sending it myself.

I know you have questions. No fear, I too have endless ones myself. I have a new Oncologist who is putting all the options on the table and we are discussing the imminent next steps. Part of the plan: I will be admitted into UW Medical Center here in Seattle for an intensive round of inpatient-Chemo. If you can think of anything I may overlook - perhaps due to my brain being numbed, please speak up ! ! !

Please also bare with me as I wrap my mind, and my heart around all this.... 

Love Kristina -

The Summit ! ! !

Need I say more....

(Mt Adams, 12,276 ft. Please click on the "Mt Adams Climb Pix" to the right, under Kristina's Photo's to see the rest of the picture's. Also, attached below is video shot on Adams. This will give you a very small taste of what it was like.... )

Game on....

Okay folks, briefly, I'm off to Mt Adams. Summit day is upon us. Time has flow and much has happened. I fear I'm still not prepared. My living room floor is spread willy nilly with climbing gear, batteries, energy bars, crampons & wool socks How am I going to fit it all in my 65 liter pack ? ?

I apologize for such lousy post's, so far & few in between. Time has spun out of control, and now our final Gear Check is tomorrow morning. My only bartering point is that I promise a far longer and more detailed posting after the climb when we return to civilization. There is much to tell indeed. The almost religious Physical Therapy that I've been dedicated to for an unexpectedly tweaked ankle and shoulder, a strategically sacrificed Camp Muir attempt on Mt Rainier @ 10,000 ft last Saturday, as well as the equally unexpected passing of a dear friend, climber and fellow transplant patient whose gear I will be carrying to the summit with me and whose spirit is in my heart and is my inspiration for this utterly challenging journey. A daunting thing to happen when she had been doing so well.

Please send ton's of positive energy. I truly hope to conquer this mountain, complete this journey. Here's to living life, adventure to adventure ! Here's to a Celebration of Life. Cheers.

Hey Ma, Look....

Above: Camp Muir, Mt Rainier - our last "training" hike before Mt Adams bid.....

Look... Pretty slick, eh ? About time I up-date the page a bit. Appropriate as well. So, we've been doing a tremendous amount of hiking in the rain. Yes, the Pacific Northwest & Seattle are known for rain, however nowhere near as much as the rest of the world mistakenly believes ! And no where near as much as what we've been experiencing lately. Once every 5-6 yrs we fall into a rare weather pattern of a summer that just never materializes. Dare I say this may indeed be one of them ? Unbloodybelievable, considering we were legitimately worried about lack of snow-pak and draught back in an unusually Gorgeous Jan, Feb & March !! Am now up to 42 lbs, 2,200 ft in 3+ miles. Urrrg ! Grueling. And personally, a challenge for me. Yet I'm also a bit proud of myself. Been doing alot of online looking into the actual Adams ascent, info, topo maps, aerial shots, etc. We've all been discussing logistics & formalizing plans. Have three lovely friends that have volunteered to act as part of our Sherpa support group for the Climb. They will accompany us to base camp laden with some of our gear. One is Portland Paul, the Originator of this web-page, and devoted writer of my earlier Transplant journey. And I am Honored to have him with us, as well as Leigh & Jeff ! Have likewise been checking out the same info for Camp Muir (above pix), which is on a Mt Rainier glacier. This will be our last training "hike" before our Mt Adams climb. Several of us on the team are opting for the "full effect": camping at a lower elevation the night before, only to wake up, roll out of our bags, and trek up to Camp Muir in the early am, again - only 1 week before our Adams Bid. Hell, I've done crazier before....

Speaking of Camp Muir, it happens I will be far up at Muir during my High School reunion back on the East coast ! Unfortunately, I won't be able to make it. Too much on my plate, and honestly, still a bit leery of long flights while still on such immuno-suppressants and med's, post-transplant. Just not willing to risk getting sick on an already compromised immune system before a Summit bid. However, Trish, one of our HS contacts, has very kindly made me write a "Bio" for the non-attendees. Can I please express how truly sucky it is to write a bio on such short notice, no prep, and when my arse and mind is exhausted from training.... Crap ! I ended-up cheating by pasting the thing together with bits of several speeches I've been asked to give.... Still it wasn't easy. And I fear it's not a bit "objective". Oh well....

At the same time, I am also looking forward to my Donor Bruce and his wife coming to Seattle. Exciting, humbling....and admittedly a bit scary all in the same breath. How does one begin to express and acknowledge the unmeasurable gratitude of both giving & receiving life, yet still be normal & grounded peeps.... ??? This simply may be a speechless moment kids.... Yep, believe it or not. I'm also keeping my fingers crossed that we will be blessed with far cheerier weather than we've been having. There are many things on the wish-list for their short visit: Mt Rainier, Olympic Nat'l Park, Rialto Beach and the wild coastline, Hoh Rain Forest.... Breathtaking as the PNW is indeed, they would be far more spectacular if we could mop all this chilly wet crap away for their visit. Had a seemingly rare beautiful day yesteday & got a Sail on Elliot Bay in with Steve. However there wasn't any wind.....just 77 degrees and lovely sun ! Cheers.

Memorial Day Wknd...

Yet again I am hopelessly overdue for a posting, and I am sorry. Training has been evolving. Or rather my pack has evolved it seems into a heavier and larger beast which has taken on a personally all it's own. This Saturday was 11 laps on the Howe St stair-climb, with 30 lbs on my back. Argh...... Here you can see us trudging up and down in the drizzle. And what you see is actually the 2nd flight of steps, 272 of them, one way. Memorial Day was a soggy affair here in Seattle. Even our hike in the North Cascades was cancelled, which is rare.

We are all now starting to assemble the bits and pieces we will need for the climb. Presently, the largest group issue is the climbing boot "strategy". And this seems rather daunting for many of us on several levels, myself included. REI has graciously agreed to donate the heavy double-layered insulated expedition climbing boots required (which typically cost $250-$500 new) among other things. However, I personally am not thrilled about having absolutely no "break-in" time prior, only getting to wear them for the first time on the very 1st day of the climb. One certainly doesn't want to start off an epic adventure laden with lethally debilitating blisters from the very start. Not to mention these suckers are about 4-6lbs of unwanted weight ! However, taking my own precious lighter boots might not be the wisest choice either, as tho they are sturdy alpine trekking boots, they simply aren't high enough to protect against a dratted tweaked ankle climbing over loose shale...or covering distance on the glacier locked into crampons. On a lighter note, I finally broke down & purchased a Big Agnes expedition insulated sleeping pad weighting only 24 oz. I have also arranged for the teams mountain-top caffeine jolt to be graciously donated by Jim Eustace of Forza Coffee in Tacoma. We are both truly honored and utterly grateful to say the least.

In a wonderful side note, my bone marrow donor Bruce and his lovely wife Beth will be coming to Seattle to meet me, for the very first time (!!)....several days after my climb ! I am both thrilled and humbled in the same breath. What an immense honor.