So the third time is a charm – I have created and lost this update twice….here goes!

I spoke with Kristina last night and she is not feeling well.  It has been a rough week. Over the weekend she began spiking fevers and experiencing very low blood pressure. Her medical team ran tests and blood cultures to try to find the source.  So far her cultures have grown out a run-of-the-mill staph infection.  For we healthy folks, this would be no big deal, we all carry staph in our bodies and fight it off regularly.  For Kristina, in her compromised immune state, however, this infection is making her feel, well, like crap. She is being treated with IV hydration and IV Vancomycin, a strong, broad-spectrum antibiotic to fight off this infection.  Her blood counts are not coming back up as quickly as she experienced previously and this is distressing to her, although her physicians say not to worry, every “body” reacts differently at different times.  She is unable to walk or stand unassisted due to her low pressure and this is very frustrated and defeating to her as she cannot do her “laps”.

Her nurse did have to shave her blond locks over the weekend as her hair was beginning to fall out and was, as she put it with a tired, frustrated laugh, “all over the place”.  Kate ordered her a Smartwool cap that she will rock, I’m sure. Kristin and I are going to show up with Henna and decorate her beautiful bald head!

While she welcomes and loves our visits, please call first as she is not always feeling up to having visitors at this time.  Use the hospital phone number first of 206-906-7470.  Also, her hospital meals have been arriving cool or cold and have been rather unappetizing.  If you bring food, please let her know ahead of time. If food is brought into her room it cannot be taken out to be reheated.  You may heat a portion for her prior to entering her room and leave the rest in the floor refrigerator for her to enjoy later. 

Kristina added a caregiving calendar link to this page just to the right of this post under “critical links”. We need to get folks on board and committed to a caregiving schedule. While it is not critical at this point, SCCA will not proceed with her transplant until they see a firm schedule in place prior to her discharge.  Kristin Munnell and I both took care of Kristina last time and although I have a medical background, it is certainly not needed.  She will need help with meals, errands, light housekeeping, keeping up your end of the conversation (we all know how this woman can talk!), and generally keeping her healthy and safe.  Its and easy rewarding way to show our love and support of this amazing lady.

Continue to send your positive thought and healing energy her way, she is feeling pretty defeated at this point and needs our love and support!  Thank you my friends – more soon!

Neva

...and so the hair goes

Good news and; not so good news. As of this morning I am officially out of "Isolation". The rash was nothing more than a reaction to one of the med's I am on. Visitors no longer need to suit-up in gown and gloves before entering my room. This also means I can again leave my room to walk laps around the 8th floor unit (geez, just 2 wks ago I climbed up to 4000 ft ). Because the floor is full with patients I may not be able to move rooms again. Regardless, being mobile is a good thing, I was beginning to sink into cabin-fever.


Today's blood levels are:
           WBC                   .29
            ANC                    0
            HCT                    28
            Platelets              44


On Sunday I received my 4th blood transfusion. My HCT didn't bounce back after Saturday's RBC transfusion so they gave me another. I also found an interactive calendar that we will use when the time comes. Please see right-side column under "Critical Links". We will need to set-up a plan sometime in Sept for post-transplant care in possibly Dec, Jan and Feb.


On a different note: my hair is finally starting to fall out. As I run my hand thru it I am left with strands draped between my fingers. This makes me sad. So unbelievably Sad. There's no denying now. I've reach that definitive point of no return. And it's hard to swallow. By Thurs/Friday it will be coming out in clumps, just like last time. What a surreal phase in this journey.


I don't really know why I decided to attach the below photo, but I did (my original is in focus). Maybe because this is one of the last things in my cancer diagnosis that I hoped to hold on to, to look like a healthy real person instead of a ghost of myself. As I let this image slide away I need to focus on what comes next, no matter how much I dread it.

ALERT: Yet another room change...

Just a quick up-date: I have once again changed rooms. My new room is #8004 & new ph #206-906-7470. After an up & down week, we noticed the other day that I had developed a mild rash. By yesterday afternoon the rash had grown a little bit. My medical team believes that this may be a reaction to one of the med's I am on (not surprising), but to be on the safe side for all the other patients on the floor they have moved me into an isolation room until test results come back. We want to rule out things like chicken pox, shingles, zoster, etc. I know a few of you were planning on visiting today, which is still welcome, but all visitors will need to suit-up in a yellow gown, gloves and a mask. Several of you have children. Unfortunately we don't have protective gear in their size. Therefore it is probably best if they do not accompany you should you decide to visit today, and possibly even tomorrow.


This week was much watching as my blood levels continued to drop. Wednesday was a bit scary. As mentioned in an earlier post my blood pressure - which has always been a healthy low-normal dropped significantly and I almost passed out while showering. 6 or 7 nurses came flying down the hall & into my room when I had to pull the alert cord. Presently I have .25 white blood cells, no neutrophils, hematocrit was holding at 29, but is now down at 24 today, and my platelet count was down to 9. Yesterday I received a Platelet transfusion, and this morning I am hooked up to a red blood cell transfusion - my third transfusion since being admitted.  I still have my hair, but I imagine it won't be for much longer. It feels slightly different, strange, kinda straw-like. The hair on my shaved legs has stopped growing.


To give you some perspective, here are the normal blood ranges compared to today's level:
                                                Normal                             Today
White Blood Cells (WBC)     4.3 - 10.0                            .25
Neutrophils (ANC)                 1.8 -  7.0                               0
Hematocrit (HCT)                  36 - 45                                 24
Platelets                                 150-400                               97   


Much of my time has been spent trying to muddle thru all the medical insurance issues, applications and disability forms. Countless phone calls later and I feel like I've made only a little progress. Many of you have offered a helping hand.  Yes, I will indeed need it. I am being geared up for a 2nd Transplant. Depending on how I fare with these 2 chemo rounds it is likely that the transplant may potentially be in November (??). However - as is Fred Hutch policy - I need to prove I have a caregiving team in place before I head to transplant, otherwise I will not be eligible.  We will do the repeat strategy we used 2007 & 2008 - evening & weekend warriors sign-up, but this time the crucial push will be for weekday daytime care for the couple of months immediately following the transplant. In all honestly this is very easy, very much like babysitting but also accompanying me to daily dr's appt's at SCCA for close monitoring.  Please stay tuned as we figure out a way to post an interactive Calendar linked to this page. I'd also like to give a YOU GO GIRL cry out to my friend Anna who at this very moment is summiting Mt Rainier 14,000 ft and is carrying my Tibetan prayer flags with her. To the Summit ! ! To Life !

An Introduction and An Update

Hello Friends -

For those of you who do not know me, my name is Neva Martin.  I met our lovely Kristina a mere 23+ years ago through mutal friends and family while slinging fish at Excursion Inlet, AK. I will be taking over updating of this blog from Paul - although I doubt my skills match his! 

Kristin Munnell and I visited with Kristina Sunday night and she was in good spirits and feeling fairly well that day.  We had the pleasure of meeting two of her hiking group friends as well.  She had some nausea in the days before, but that had subsided.  Her blood counts are going down as expected and will continue to do so.  This round of chemo is over, now wait and watch those counts. 

Her counts today were:  WBC (white blood cells) .11
                                        ANC (neutrophils) 0
                                        HCT (hematocrit) 27
                                        Platelets 32

Kristina has moved to a new room tonight #8058, with a new phone number of 206.906.7493.  Try this landline before her cell when calling.  She welcomes visitors (healthy ones please) and her doctor even told her she could share a glass of wine with us!  Party time in Oncology! A phone call before visiting is still a good idea, as her energy waxes and wanes.  A reminder that no live flowers or plants are allowed on her floor.   

I have worked in the medical field for many years, so please feel free to reach out to me as well with any questions you may have. 

Keep that positive energy going out to our brave and beautiful friend!

Neva

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...