Wednesday, October 28, 2009

Kathy Howard

Yesterday was the anniversary of my friend's, Kathy Howard, bone marrow transplant. She is never far from my mind and is always in my prayers. Unfortunately, her transplant was unsuccessful and she passed away in March the following year.

Three years ago we celebrated that a donor had finally been found. She had very unique HLA typing and she had to wait for a donor. We celebrated that she lived long enough to get to transplant. And we celebrated the life she would have back after transplant.

Kathy taught me about leukemia. We had only met once, very casually, when I learned that she had been diagnosed with AML. She had gone to a routine doctor visit and was in the hospital that night. She taught me about the disease, the treatments, and bone marrow transplantation. She taught me about HLA typing, what happens if there is no match, testing costs, Social Security, being immunosuppressed, and Fred Hutch.

We held a bone marrow donor drive. Although statistically highly unlikely to match Kathy, it raised awareness and hopefully will save someone else's life.

Kathy taught me about Seattle Cancer Care Alliance and the Pete Gross House. I learned about conditioning, transplant, and recovery. We would talk as she swallowed the horrible daily regimen of pills, while sitting at her dining table in her apartment at Pete Gross.

She came home too soon. She enjoyed, a loose term, her last weeks in her home in Spokane, surrounded by family, and with the help of Hospice.

She was an incredible singer and made some beautiful music after being diagnosed. She was undoubtedly most proud of the song she wrote for her husband Dan, which was played at her memorial.

Interesting how a brief introduction drew me to her. She taught me what I didn't know I would ever need to know. There have been many times when of all the people I know, I have wanted to talk to her. She knew me before I knew myself.

Kathy was a wonderful mother who absolutely adored her grandbabies. She was a devoted and loving wife to her husband. She was a special neice to her aunt and uncle, who lived next door, also in a Historical Society house. She was a good friend to many.

She was a fighter and waged a valiant fight. She was proud and chose death on her terms, dying with dignity, surrounded by love, and having taught so many the meaning of "grace". I just wish the "Social Calls" were still coming.

My Body Over the Past 24 Hours

Yesterday was a really hard day for me. I would have written about it all yesterday, but things just kept coming. So, I have missed a day of writing and getting you caught up. I was actually really impressed that so many of you are still checking my blog and knew I had written. And without an email inviting you back to SallyLand!

I had a lengthy visit with my doctor yesterday. Frankly, I imagine she just shudders when she sees that I am on her schedule! She is absolutely wonderful, never looks at her watch, and follows up like nobody's business. (I would write her name but I haven't asked her yet if that would be okay.)

So I had a STAT vascular ultrasound study on my legs. I have been having this weird pain, knees down, and it seemed the best thing to do to rule at any clots in my legs. Hooray! Negative! So nice to hear. The oncologist told my primary care doctor that I shoul start cumadin (vs. Lovenox) so that was gone over. Then the whole blood infection and affects on the kidneys. Plus at least twenty other topics.

Once again, I called the Moms at John Paul's school to find a ride for him since I would still be getting my test. Again, they were ready to help. I can't thank all of you enough. And I am sorry to have asked, yet again.

Today I woke up with back pain. Then I couldn't pee. Then I had really bad back pain. Trip to doctor's office. Tiny bit of pee. Blood in the pee. Medicine hurting my kidneys (not really my back hurting). Doctor is contacted at home. Enter Infectious Disease doctor (in charge of blood infection). Vanco (IV antibiotics) ends tomorrow with follow-up cultures in a week. Enter Urologist. STAT CT with contrast being arranged as I type. So I'll be off to somewhere soon.

If I don't pee by the morning, the world ends, apparently.

Just hung up with my Home Nurse, who called to say that they need STAT draws in the morning. Now I am totally confused. We played who said what to whom and when. My high from discontinuing Vanco tomorrow is now gone. There are too many doctors, too many tests, too much conflicting info. Home Nurse will try to figure it out and will call me back.

So I wait by the phone for two urgent calls telling me where I will be and what life will be like for the next day. Nothing new here.

Monday, October 26, 2009

Sacred Heart Frequent Flier Miles

What a month it has been! When Craig and I were in Seattle in September (another story), I had a constant headache. As I am not a headachey person, I assumed it was stress and began an around the clock Tylenol regimen.

Within a few days of returning home, I gut instinct feeling that something was wrong, plus feeling like crap, hit. The primary care doctor saw me and called my oncologist, who requested blood cultures in addition to some other tests already planned. Turns out that nasty headache was a symptom of a blood infection. You know, that "blood poisoning" stuff? So off to Sacred Heart (it's a hospital)! My Hickmann line was pulled (the port access in the chest) and a PICC line inserted (peripherally placed central line) so I could go through IV antibiotic treatment. Although the Hickmann was colonized, both the blood draw from the Hickmann and a regular site were positive.

So I get to feeling a bit better and go home to finish the IV regimen. Then I go to the doctor for follow-up and I have REALLY low blood pressure. So for two days I go in to get fluids and have my blood pressure checked. My lucky day was three, where I could no longer maintain a reasonable blood pressure. At 70 over 30, I was passing out sitting up. I got to meet a number of very strong and handsome young men as they arrived at the chemo suite to take me to the hospital. We are talking firetrucks, supervisors, ambulances, the works. This is one of my worst nightmare scenarios.

Off to the hospital I go, except my hospital is diverting because the ER is full. So I go in an ambulance, across the street from my doctor's office, to that hospital. I didn't even get to check the inside out or see how good they were.....

Long story short, the next day I am at Sacred Heart for another vacay. Yes, less than a week later. Turns out the blood infection didn't quite go away and it was affecting me particularly through blood pressure and hearrate. Enter cardiologist.

By this point I have had three sets of blood cultures, all pending. IV antibiotics. Hospitalist discharges me saying cultures are negative. Two days later my non-hospitalist doctor calls me to find out what antibiotic I am on. Uh-oh.

Turns out the hospitalist read one set of cultures' preliminary report of negative. When the final reports came in, two of three sets were positive (don't ask about the third). I pack this time, knowing I will need to bring some stuff.

PICC line out, IV line in. PICC line in. Groovy sedation for heart tests. Good news: There's no "vegetation: on my heart valves. (Never heard of heart vegetation and I definitely didn't want any.) Lots of IV antibiotics. I did get to stay on a new floor, which was really nice.

So I continue my IV antibiotics at home, a two week regime. Then off for one week, then cultures. The only reasonable explanation for why the infection has not gone away are that 1. I am immuno-compromised and blood infections are serious for healthy people and 2. It's hiding out somewhere. Hopefully we will not have to hunt it down.

So for the last month I have been in some hospital each week and feeling crappy even at home. I have cancelled and rescheduled so many appointments that it is embarrassing. I am determined to make no commitments until I stay out of the hospital for two weeks. I have a week to go......

Unfortunately, I also developed a blood clot during the last Sacred Heart trip, followed by a second one which was either new or just discovered. So add some vascular ultrasounds to the mix, and daily Lovenox injections, and you pretty much know it all.

Once again, my body has betrayed me. I am so sick of being sick. I can't tell you how claustrophobic it can be.

So, at least for the past month, this is my story. And why I remain elusive and evasive and out-of-touch. I just haven't turned the corner yet.

Can I Use The Same Post Twice?

Here I am, finally, connected to the internet, logged in to my blog, trying to figure out where to start. Essentially, I would like to repeat all the sentiment of my most recent post, even though it was way too long ago.

Many of you have told me that you worry when I don't write..... Oh, you know me so well. I continue to be unable to manage it all and frankly struggle to get through a "good" day. I am beginning to feel the stirings of a need to write, almost a purge of sorts. This may be the "Blogfest" that I promised on Facebook long ago....

I am really going to try not to whine nor only express only doom-and-gloom. But sometimes it does feel that way.

Thank you for sticking with me. I AM still here.