tag:blogger.com,1999:blog-65804339096806479602024-02-06T19:47:00.695-07:00The Cunning HandI love food. I love words. A recipe for success.Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.comBlogger57125tag:blogger.com,1999:blog-6580433909680647960.post-71167671614662406592022-02-21T12:27:00.001-07:002022-02-21T12:27:45.489-07:00Winding down<p> The Olympics are over, but my leukemia journey continues. </p><p>I was diagnosed in July when the Summer Games dominated the airwaves. At the time, I drew some parallels to the struggle of athletes and my body to fight this invader. </p><p>And now, as the Winter Games wind down, so goes my fight. Weekly lab tests indicate no bad cells, and the team is weaning me off many of the 18 medications I once took to combat the assorted effects of chemo, radiation and a new immune system. </p><p>All goes well. I got to get my new Covid vaccine (since the above treatments wiped out the first one). No side effects! I love this new immune system! </p><p>The true test will be the next biopsy, probably in late March, so let's keep our fingers crossed for no sign of mean ol' leukemia cells.<br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com0tag:blogger.com,1999:blog-6580433909680647960.post-27653046712381601422022-02-02T17:08:00.002-07:002022-02-02T17:08:29.661-07:00More hope and some change<p>My most recent visit with my Colorado Blood Cancer Center doc was very positive: (Should I see it as a sign that his name is Mountjoy)</p><p>No indications of leukemia in the blood! We'll wait a bit for another biopsy to see what's lurking in the marrow, but things are looking good.</p><p>We've cut out the steroid prednisone, and that in turn reversed the hypoglycemia, so I no longer have to draw blood and inject insulin 4 times a day!!</p><p>Throughout this very roller-coasterish journey since the transplant, I have spent many sleepless nights (another joy of prednisone) thinking about what I want my life to be, however long that may be.</p><p>None of us knows how much time we have, after all. We could be killed in a car wreck or set a new record for oldest human.</p><p>But I did determine that I want to be closer to the people that matter to me, and living in a too-big house in the beautiful forested mountains of Evergreen is not doing that.</p><p>So, much to my husband's dismay, we have agreed to sell the house we bought just 9 months ago. My vision has been that someone who lost everything in the December fires in Louisville and Superior will find solace in our home. It's not close to the affected areas so schools and jobs have to be considered, but I am asking the universe to let the right person find our home.</p><p>And that means we have to find a new refuge. I would prefer to return to the mountain-hugging environs of Boulder.but supply, demand and finances are major challenges (along with the loss of 1000 homes)<br /></p><p>So, in addition, to the battle going on inside my body, I get to balance selling a house, buying a new one and moving in the next few months. Your continued thoughts are all that sustain me!<br /></p><p><br /></p><p><br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com1tag:blogger.com,1999:blog-6580433909680647960.post-87285153814929413892022-01-26T09:24:00.000-07:002022-01-26T09:24:06.543-07:00As I see it ( and I could be wrong)<p> For better or worse, I'm not a quitter. When my body decided to attack itself, it went full on. Mutations add a bit of color ro the mix. But the early chemotherapy seened to get rid of the cancer. I was twice told I was in remission.</p><p>So the stem cell transplant was to put an end to it altogether. Only it didn't quite work as well as hoped. Yet. The latest bone marrow biopsy indicates my body is still making nasty leukemic blasts that invade the good cells. The eminently qualified team at Colorado Blood Cancer Institute is crunching every number and investigating options galore. If there is a chance, they will find it.<br /></p><p>But my stubborn leukemia may just win the battle. I suspect there will be no cure. My time on this beautiful planet will be cut short. (the way our country is going this is not a totally bad thing)<br /></p><p>But I am going to try to make a life of joy and fun and connecting with those who have supported me throughout this life.</p><p>Come along for the ride.<br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com0tag:blogger.com,1999:blog-6580433909680647960.post-18871337392281521542022-01-23T16:41:00.003-07:002022-01-23T16:41:27.482-07:00No news is ....<p>More than halfway though the transplant journey now, I am cautiously optimistic. Nasty prednisone pills are hopefully a thing of the past , along with the insulin resistance they cause.</p><p>I had to celebrate with ice cream, especially after my platelets did a big recovery over the weekend. They had tanked last week so Sunday morning infusion brought me in to learn I was twice the needed level!</p><p>Hopefully, biopsy results will be forthcoming. My leukemia has a mutation that responds to a particular drug, and we have upped that dosage to fight any invaders.</p><p>But now we wait and see, holding fast to your wonderful thoughts and prayers and universal love.</p><p><br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com0tag:blogger.com,1999:blog-6580433909680647960.post-63636061743179404482022-01-14T15:49:00.002-07:002022-01-14T15:49:41.926-07:00360-degree turnaround<p> I do not know how I could have gotten things so wrong. It's not the end of the road but just more .uncertainty and tests to see what is really happening in my body.</p><p>At my clinic visit on Tuesday, I was pretty sure I was told my transplant had not really taken, and there were leukemic cells replicating. Morose faces saying "we're sorry" from physcisan assisstant, transplant coordinator and even a social worker.</p><p>Today with the doctor it was much more hopeful, while still being unclear. We just need more time to let the donor cells work. There are stil many twists and turns thngs could take, but it s not OVER. </p><p>To manage all this, I'll be on lots of meds for a while. The worst is steroids, which cause high blood sugar so I'm learning the ropes of insulin management. My poor fingers are dotted with pinpricks but that should be short lived. </p><p>And sleeplessness is a hallmark so I often lie awake thinking about all the what ifs and trying to control the future.</p><p>At least there is one...<br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com0tag:blogger.com,1999:blog-6580433909680647960.post-21067431709508083572022-01-11T14:40:00.000-07:002022-01-11T14:40:09.949-07:00Whiplash<p>I am soooo confused. Today's appointment seemed a slam dunk: Labs, discussion of the blood sugar issues and a visit with a physician's assistant.</p><p>So, when said PA sat down with a morose look, I was taken quite aback. She seemed to be saying that the blood work and biopsy indicated the transplant did not work. The donor cells are not fighting the leukemia.<br /></p><p>How could this be true? I went into the transplant with full remission.But cancer cells are sneaky little devils and mine particularly so.</p><p>There will be more tests and the return of a chemo drug, but most likely I will have to live with this disease until I can't.</p><p>The news seems to change from one lab draw to the next, but I cannot believe they would have told me this shocking news if they did not believe it to be fully true.</p><p>So, I guess it's time for the bucket list....<br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com1tag:blogger.com,1999:blog-6580433909680647960.post-28367535575939138162022-01-08T19:50:00.000-07:002022-01-08T19:50:01.329-07:00In awe<p>Maybe I was delusional aout this whole leukemia process, but I had been thinking that I was following the protocols set forth from the previous years of research and treatment. </p><p>You have AML, you get this chemotherapy. It works or not, or they try a different one.</p><p>But since the bone marrow transplant, I have learned it is so much more individualized. Yes, there are the standard medications that all transplant patients get to prevent infection, rejection, etc.</p><p>And I finally spoke up after about three weeks of gastrointestinal issues: maybe I didn't need to be on a certain antibiotic if there was no infection. Why was I taking a nasty liquid to quell upper respiratory distress that I didn't have.</p><p>And lo and behold, the team listened to me. We dropped some things with good success, and are continuing to hone in on what my body needs.</p><p>But the most amazing development for me was a report on my 30-day biopsy. At first, my doc said there appeared to still be some leukemic cells in the marrow. Oh that hurt -- other biopsies had shown remission. But he explained that the pathologist had taken my individual cell and put it through its wringers to find out what was really going on. It could be just immature or something else that could be good or bad down the road.</p><p>What amazed me was that was just for me. (A couple days later, it was determined to be innocuous, whew)</p><p>Even with that good news, though, came the judgement that the steroid treatment to ensure total engraftment is playing havoc with my blood sugar. So I get to start on insulin. Poking my finger 4 times a day is simply no fun. </p><p>But we expect it to be a short-term problem. Weaning off steroids should set things back to normal in a month or so. </p><p>There are likely millions of people who endure this for their entire life, and while some advances have been made, it is a complicated system. Somebody really needs to do user interface or usability studies to make it a lot easier. Massive instructions in tiny print do not work. We need pictures and step-by step how-tos..</p><p>After a couple of tries, though I was able to successfully test and dose myself. So I guess it's not that hard.</p><p>Now I just have to figure out sleep. My body is working very hard now to fix itself, and that keeps me awake (maybe it's on the time zone of my German donor!)</p><p>I'll try not to post my wild 3 am thoughts...<br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com0tag:blogger.com,1999:blog-6580433909680647960.post-34106111287439449182021-12-30T16:17:00.001-07:002021-12-30T16:17:20.731-07:00Onward and upward<p>Thirty-one days since transplant! Things are looking good, though the GI issues continue to devil me, and the docs seem to just be throwing darts to see what will clear it up.</p><p>Nonetheless, it has been a fairly easy recovery. I still have most of my hair, and no other common issues like mouth sores, skin problems, nausea or assorted other maladies that often crop up.</p><p>And I have been so fortunate to have my daughter and her husband with us --turns out he's a great cook! Christmas evening he pulled together seafood chowder to die for, then made stock with the shells to create a swoon-worthy paella the next day.Alas he must return to Chicago so dear Esteban the French bulldog doesn't jump ship (and maybe Karl can work some too).</p><p>Boredom is now my cross to bear. My various Santas gifted several good, meaty books, a subscription to the New York Times games site and a weekly storytelling program that will compile my family stories into a yearlong memoir of sorts. </p><p>And then there's the medication management. I take 16 different pills and concoctions to fight everything from potential fungal/viral/bacterial infection to liver function to graft vs host disease and cell rejection. Those all have their peculiarities (take with food or empty stomach; space 4 hours apart but don't take before lab work, etc.) so it's a complicated array. Good thing there's a app for that.<br /></p><p>Between stuffing my face with food or meds, I try to get out at least once a day. The little Highlands neighborhood where we're renting a home is eminently walkable for a bust of sunshine and maybe a trip to the grocery. I'll work up to longer distances and more exploring if the weather doesn't turn too wintry.<br /></p><p>Being idle is difficult for me -- I want to get things done without help. Asking someone to make breakfast for me just goes against my grain. </p><p>But better safe than sorry so I take baby steps. It's not a race, but a journey to better health.<br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com0tag:blogger.com,1999:blog-6580433909680647960.post-80637742619232925032021-12-24T14:11:00.003-07:002021-12-24T14:11:40.873-07:00My Christmas/New Year's Wish<p> I've been so fortunate this year to learn of the beautiful people in my life, so it seems a little selfish to want for more.</p><p>But spending lots of time in hospitals and isolation gets the ol' noggin working overtime, and I just cannot fathom what has happened to this country.</p><p>We are hardly United States anymore -- a 50/50 Congress is proof enough that there are some deep divisions here. But what I cannot understand is how one man --a silver-spoon multimillionaire representing some of the country's poorest areas -- can hold up our government.</p><p>The guy drives his Maserati to his yacht, yet worries that an extra $300 payment to poor families will be wasted on drugs. Oh, and it will cause the debt ceiling to rise further. A minute fraction of the military budget could fund that program in spades.</p><p>And then we have the people who think a vaccine will 1. impinge on their freedom, or 2. allow the government to track their every move (as if their phone doesn't already) or 3. create even more demand for aborted fetuses for research purposes.</p><p>Most of us are alive an healthy because of the vaccines created decades ago. Not many folks are left in iron lungs these days. It's science, not evil.<br /></p><p>I was never a fan of the Bush presidents, but I do remember the elder extolling us to be a kinder and gentler nation -- where did that go off the rails?</p><p>We need to re-examine what's really important in life. My former Virginia neighbor alerted me to a chronicle of a young woman diagnosed with leukemia,<i> Between Two Kingdoms. </i>She had a horrible case with too many side effects and setbacks, but in the end she seems to have conquered the immediate threat. </p><p>To transition back to "normal" life, she takes a road trip and visits many people who corresponded with her during her illness (she somehow managed to snag a New York Times column to chronicle her cancer journey). The wisdom from the people she met was astounding, but the one that really struck me was a woman who'd lost her son to suicide then developed her own cancer. </p><p>"The events of the last few years have been a terrible lesson in being present,, not just in my own life, but in the lives of the people I love. Tomorrow may happen or tomorrow may not." </p><p>Just in case it does though, why not be kind? For any number of reasons, some people struggle with daily living -- give them a break. To go back to the mantra of the '80s, think about What Would Jesus Do? He would show love for whomever needed it.<br /></p><p>Can we honor that concept, and make this a nicer place to be present in the lives of all. <br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com0tag:blogger.com,1999:blog-6580433909680647960.post-90838236267553313322021-12-21T11:26:00.001-07:002021-12-21T11:26:33.104-07:00Sprung for now<p> YESSS! A few days later than planned, I finally got to leave Presbyterian/St. Luke's Bone Marrow Transplant center at the end of a very long day of waiting yesterday. </p><p>Twenty-six days without fresh air or the feel of the sun on my face. Missed the first Evergreen snow (2 in.) and the officially latest first Denver snow (0.3 in), but I just glad to be out of my room.</p><p>It's a mixed bag, though. We have to figure out when and what of the 14 or so medications to take. No nurses to swoop in at just the right time to dole out expertly curated doses. </p><p>I've left the IV pole behind in favor of a fanny pack holding a little bottle of magnesium supplementation attached to my central line. <br /></p><p>All in all, not too bad, and I have the best unskilled caregivers: my husband and daughter. I can't even imagine how I would have done any of this without them.</p><p>And, in time for Christmas! Infection protocols prevent a live tree but the fake one will get gussied up with our 35 years of ornaments to make it just as festive --without the pine needle shedding.</p><p>With my beautiful family here to share my new lease on life, I cannot help but feel so very lucky. </p><p><br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com1tag:blogger.com,1999:blog-6580433909680647960.post-85780902138570130872021-12-05T19:21:00.000-07:002021-12-05T19:21:36.678-07:00Sneaky farts and itchy feet<p>Fair warning: This might get a little gross.</p><p>Almost a week since my transplant day, and I'm still feeling pretty good, Doctors says things are progressing as expected. No major problems, but then the dreaded Graft vs Host Disease apparently doesn't kick in (if at all) until two weeks out.</p><p>The stem cells are not "engrafted" yet, which I think means they haven't started to produce their own blood cells. That's when the clash of old vs. new might occur. </p><p>And I'm not sure how that will happen, because my own blood is seriously lacking these days. For example, my white blood cell count today is .20 where normal is between 4 and 11. That makes it difficult for my body to fight infection. Platelets, which allow your blood to clot and stop bleeding, are at 47. The dentists wouldn't even see me until I had a platelet count over 50.<br /></p><p>So, the procedures of my first few days here --chemotherapy and irradiation -- have done their job. The expected side effects run the gamut (it can be anything, one doc said) but the common compliant is nausea and diarrhea. So far I've been lucky with (and medicated against) the former, but the latter persists.</p><p>The first night of the malady, my nurse warned, "don't trust a fart." I didn't get it until, well, I did.</p><p>My only other compliant sneaks in at night when I have trouble sleeping: itchy feet.</p><p>Maybe they itch all the time and I just don't pay attention to it, but it drove me nuts one night. Fortunately, as I suspect there is for any other malady, there's a drug for that. I'm not sure if Benadryl actually stops the sensation or just knocks you out so you don't notice.</p><p>As long as you don't ignore the fart.<br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com1tag:blogger.com,1999:blog-6580433909680647960.post-84765110282527503402021-11-30T19:05:00.000-07:002021-11-30T19:05:15.761-07:00Gratitude<p>Maybe I'm a few days late with this post, but I've been occupied.... Truth is, I've been feeling too yukky to blog. <br /></p><p>Yesterday was the big day, Day 0, they call it in the transplant world. </p><p>I started early with a dose of Total Body Irradiation, which involved lying on a table and having bags of rice packed around me to make a solid block and not moving for 10 minutes while the hulking machine on the other side of the room buzzed away (presumably shooting radiation at me). Then the techs turned me around and we did it again. </p><p>Didn't feel anything; (knock on wood) no ill effects. </p><p>Hung around my room for a few hours, then did that again.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6Txe_KlZK4NrZDi02-cGJps4QgRzx_d-yXeYT_eifVphJ8b8lsAVQkN18uaNn1loYF_7IoHUPbUZqbz2gvxZCW1td1D1JuKKefvCIr0g-ullG_9OQe0SAPfiRVYhNvK8h84QPDC0yZWc/s2048/cells.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2048" data-original-width="1443" height="214" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6Txe_KlZK4NrZDi02-cGJps4QgRzx_d-yXeYT_eifVphJ8b8lsAVQkN18uaNn1loYF_7IoHUPbUZqbz2gvxZCW1td1D1JuKKefvCIr0g-ullG_9OQe0SAPfiRVYhNvK8h84QPDC0yZWc/w150-h214/cells.jpg" width="150" /></a></div>When I was returned to my room, we started the prep for the transplant, which is really just a transfusion. A technician brought in a huge steel container that had held my stem cells since they'd arrived from Germany. They are held at something like -400 degrees until needed.<p></p><p>Each of the three bags of cells then defrosted in a room-temperature water bath before being infused through an IV. And now my body starts to assimilate those cells with my own. <br /></p><p>It seems so simple, but the research that must have gone into this process boggles my mind. Yes, when you are lying inert with a giant machine whirring away delivering who-knows-what you think about strange stuff.</p><p>But the main thing I had to think about was the overwhelming outpouring of love and care that has come to me throughout this journey, and the apparently selfless actions of unknown donors around the world.</p><p>The transplant folks have all said a majority of the stem cell donors come from Germany, as mine did. Apparently, it is somewhat expected that you will register with the organization that handles transplants. <br /></p><p>Here, that is BeTheMatch.org and I encourage you to check it out. Most of the people reading this are probably too old to be donors, but tell your kids and grandkids. Chances are you won't be matched and asked to donate (I signed up ages ago and was never called to donate). If you are a match, the donation process is only a little more than giving blood. And how great would it feel to know you'd given someone else the gift of life...<br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com0tag:blogger.com,1999:blog-6580433909680647960.post-39520232280375489372021-11-23T09:55:00.000-07:002021-11-23T09:55:37.031-07:00Bags are packed, I'm ready to go<p> The waiting is over now. Tomorrow I check in to Presbyterian St. Luke's Hospital in Denver for the preparation phase of my bone marrow transplant (5 days of chemo, then 2 short bursts of radiation) to ensure all the bad cells are out of my body..</p><p>That is done through an IV port in the chest; that's the part I am most apprehensive about right now. Unlike many who have cancer, I have not had to undergo surgery in the process. I'm no stranger to the knife (3 c-sections and gallbladder removal) but I do not relish the pain when anesthesia wears off.<br /></p><p>Then, thanks to a generous 18-year-old German woman, my new stem cells will be infused on Monday, then we wait some more to see how my body reacts. Will the "old me" welcome these new cells and let them take over or will they put up a fight and cause problems, what the docs call Graft vs. Host Disease. It can be as simple as a skin rash or more involved, but there are good medicines to handle whatever happens.</p><p>And that's it! </p><p>The hardest part of all this has been following the transplant center's rule that my caregiver(s) and I must stay within 20 miles of the hospital for about 90 days. Our home is 28 miles away.</p><p>Thus began the search for temporary housing in Denver. True, our situation might be a little unique as my daughter will come
from Chicago to share the load of caregiving. so we needed more than the
one-bedroom apartment the transplant center usually arranges. And the
90 days will span the Christmas holidays so we expect to enjoy some
family time together.</p><p>What a saga --we were almost caught in a scam where people would take our money for a house they didn't have. Buyer Beware! Then the landlord of a 1940s-era tract house wanted ridiculously extensive background checks at our expense (both financial and potential online exposure). </p><p>So many others listed online either got rented before we got to them or were more scams, because the listing people NEVER responded to our requests for in-person showings. So rude -- if you post something for sale (or in this case, rent), have the decency to answer people who want it....</p><p>And then you have the differing tastes of the parties involved. I love old houses, and Denver is full of "cute bungalows" with tiny kitchens, clawfoot tubs and questionable stairs. My husband wants to be careful and have the comforts of home in this century, including a garage to charge his electric vehicle. </p><p>A lovely compromise in the West Highland neighborhood (former site of Elitch Gardens amusement park) will serve as our home for the coming months. It may not be perfect (as our Evergreen home is) but it fills the bill.</p><p>I'll definitely miss the big picture window full of bright blue sky when I wake up each morning, the keening bugle of the elk in the yard and the first winter in Evergreen (most of it), but I'll return in March (likely) with a whole new immune system.</p><p>Can't wait to start over. I'll try to treat this one better.<br /></p><p><br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com1tag:blogger.com,1999:blog-6580433909680647960.post-31534240551777792302021-10-15T22:41:00.002-06:002021-10-15T22:41:25.949-06:00More waiting<p>The good news... the latest biopsy showed no sign of leukemia. However, the experts assure me it will return, so the only permanent solution is a bone marrow transplant. And I have matching donors!<br /></p><p>The bad news is I have to wait until there is no chance of infection. In my case, that comes down to teeth. I have bad teeth; from my childhood I have known this and therefore generally avoided dentists until major pain developed. </p><p>That avoidance has come home to roost now as I need several procedures to ensure no infection. And, that it seems, has delayed the transplant. After meeting with the onologist on Thursday to hear the good news of remission, I received a text from the hospital giving me an admission date of November 24.</p><p>Really? The day before Thanksgiving? I know once it's all done I will have much to be thankful for, but it seems like we could have started a few days later (or preferably, a week earlier) without much harm. I kinda doubt the doctors are going to be working on Thanksgiving and its ensuing weekend. </p><p>And it's almost six weeks away. I've already started packing for the hospital, I'm ready to get this show on the road. What am I supposed to do for the next 30 days? </p><p>So, unless I am able to talk the team into an earlier date, I won't have much to post until post-transplant. It doesn't mean anything but I'm waiting for more good news to share.<br /></p><p><br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com1tag:blogger.com,1999:blog-6580433909680647960.post-26861515506982332021-10-03T14:59:00.000-06:002021-10-03T14:59:20.725-06:00Be careful what you wish for<p> In the hustle and bustle of everyday life, most of us long for a day (or so) to just do nothing. No meetings, no calls, nowhere to be, no one needing us right now. <br /></p><p>Being in the hospital for 3 weeks can change the perception of that. It's hard to do nothing. Even on vacation, we usually plan some activities to fill the days.</p><p>But the real kicker is that the body can get used to doing nothing and want to keep it that way. For the past week, I have been unable to stand or walk for more than a minute or so. I am utterly exhausted at the slightest exertion.</p><p>Is it the low blood counts trying to recover from chemotherapy? The aftereffect of neutropenic fevers and double pneumonia? Or a loss of muscle mass from lying in bed?</p><p>The nurses just say it is to be expected, but that doesn't make it easier. Oddly enough, I want to be able to do my laundry or make a meal.</p><p>Someday, when all this is over (i.e. when my bone marrow has recovered from transplant) remind me of that.<br /></p><p> </p><p><br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com1tag:blogger.com,1999:blog-6580433909680647960.post-41416758155075334442021-09-28T14:42:00.000-06:002021-09-28T14:42:55.781-06:00The roller coaster always lands on the ground<p>It was a surreal phone call this morning, as I lay in my Swedish Hospital bed for the 11th consecutive day. The cancer center wanted to schedule an appointment for tomorrow and a follow-up on Friday. Apparently, they knew more than I did. </p><p>Soon after, oncologist Florencia Benton cleared things up with the great news that I would get to go home today!</p><p>This, after a thoroughly frustrating day on Monday when we had to wait for someone to draw my blood for lab tests. Normally, technicians I like to call the vampires sneak in during the wee hours of the morning and steal away with a few milliliters of my essence. Then lab folks do their job to give the doctors information for rounds at 10 am. </p><p>Yesterday there was ONE person available to draw blood in the ENTIRE hospital. She got to me about 3pm, a little late to be making decisions about discharge.</p><p>I just have to wonder what is wrong with our country that a hospital cannot find the staff it needs to carry out its job. Do people just not want to work at 3 in the morning? Or are businesses (and hospitals are, in the end, businesses) cutting staff to improve the bottom line? </p><p>It's a mystery I can't solve, but hope that there's enough staff and resources -- in the facilities and in my own body --to continue on the journey to transplant.<br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com2tag:blogger.com,1999:blog-6580433909680647960.post-75301096129580090982021-09-23T17:49:00.000-06:002021-09-23T17:49:32.489-06:00Hot stuff<p> Fever is such a strange phenomenon. You feel like your body's on fire, then can't get warm. Chills can wrack the body for hours but overcompensating can put you back into the fever zone. </p><p>Usually fever is the body's response to infection, the body's soldiers sent to do battle with invaders. <br /></p><p> But chemo pretty much wipes out those defenses, leaving one vulnerable to, well, everything. So doctors step in to help the process by identifying the invader and sending targeted medicines to wage war. Thus, the 5- or 10-day course of antibiotics most of us have taken at times throughout our lives.</p><p>The problem is determining which flavor of bad guy is attacking. There must be hundreds, and each responds a little differently to specific drugs. Though I'm sure it's much more scientific, it feels a bit like looking for a needle in a haystack, or spinning a roulette wheel.</p><p>Or maybe there is no bad guy. Neutropenic fever occurs approximately 60% of the time when chemo has wiped out the immune system. So what fights the fever when there are no "soldiers?" Fresh recruits, of course.<br /></p><p>But before the white blood cells and neutrophils can regroup, frequent and high fevers make life pretty miserable. I'd been told 24 hours without fever would be a landmark, but time after time, I'd get only 12, 18, or then 20. So discouraging!</p><p>About this point, I got frustrated with the "telephone tag" between St. Anthony's Hospital and my oncologist from Swedish Medical Center, Dr. Chris Benton. A little hissy fit got me the transfer I wanted.<br /></p><p><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnz1juYSRbx1wDCBr-2oeT63WI8-mX_DDtCTiHMq9iciRk8FR5g784MVGHZB1r7MIP8hwK0ddQxouIkXqBrxOr8OszFtZv5r1oig74N6u81QmbFOTFG3PCxFMKixQeoOx63pmVVu_7Ukc/s1932/nutro+graph.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="707" data-original-width="1932" height="144" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnz1juYSRbx1wDCBr-2oeT63WI8-mX_DDtCTiHMq9iciRk8FR5g784MVGHZB1r7MIP8hwK0ddQxouIkXqBrxOr8OszFtZv5r1oig74N6u81QmbFOTFG3PCxFMKixQeoOx63pmVVu_7Ukc/w394-h144/nutro+graph.jpg" width="394" /></a>Talented at breaking down the complexity of medicine, Benton put a lot in perspective with this illustration on my room whiteboard last weekend. Early on, there is only fever, but as the body's defenses build enough to fight, the intensity and frequency of fevers slowly dwindle. <br /></p><p> For the first time in two weeks, I have hope there might be an end to this carousel of discomfort. Though the infectious-disease docs still want to be absolutely sure there is no infection. I'm pretty sure I've reached the final bump in the road.<br /></p><p><br /></p><p>.<br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com2tag:blogger.com,1999:blog-6580433909680647960.post-82946128257369795062021-09-14T20:57:00.002-06:002021-09-14T20:57:25.926-06:00You folks rock!<p>Thoughts and prayers have been mocked ineffective platitudes, and for someone losing a loved one to random violence they are but often all we have.</p><p>As I've written before, my journey with leukemia has definitely been smoothed by the amazing outpouring of support from all sides. When I thought the next hurdle was just finding a domor, I posted my hope for that.</p><p>But after 8 days of fever and chills without a seeming end, a new priority popped up and I hesitated to ask for more help.. As newspeople know, after 5 days, the news and fish need to be thrown out.</p><p>OK CHunt (HS journalism teacher}: I'm burying the lead again.</p><p>The exciting news, which I am attributing to your T&P, is that 4 people are willing to donate bone marrow cells.</p><p>I just have to get better.<br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com0tag:blogger.com,1999:blog-6580433909680647960.post-86594898826821172502021-09-10T22:58:00.003-06:002021-09-14T21:19:02.083-06:00The other shoe<p style="text-align: left;"> Given my relative breeze through Leukland, I suppose I should have expected it might not all be clear sailing, or maybe paid attention when the nurse practitioner told me 90 percent of people in remission end up back in the hospital with an infection.<br /></p><p>So here I am, and that's why I have not updated in a while. It really knocked me for a loop. Chills and fevers alternating throughout the day. And the docs are still not sure what's causing it. Through MRI and CT, I have had every part of me scrutinized. Sometimes that is more than you want to know...</p><p></p><p></p><p>The oncologist says sometimes it's just the body reacting to having no immune system,. So, while I wait for my parts to kick into gear, I'll share how great these women are.</p><div class="separator" style="clear: both; margin-left: 240px; text-align: left;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgglerOeOJUiuGjMoKGC3-eIZFAekdPecbntuECwX3ixqQWGokZN6-laikdSUpO7Kpl8WY_ds3NtnxpT_jYRjHmcS6D8WZDRN_psYP6ijWvTUaY7xVOOYR9S-BDHE-2XEAMcCKFd0OFA-8/s2048/girls+at+house.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1536" data-original-width="2048" height="134" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgglerOeOJUiuGjMoKGC3-eIZFAekdPecbntuECwX3ixqQWGokZN6-laikdSUpO7Kpl8WY_ds3NtnxpT_jYRjHmcS6D8WZDRN_psYP6ijWvTUaY7xVOOYR9S-BDHE-2XEAMcCKFd0OFA-8/w385-h134/girls+at+house.jpg" width="385" /></a></div></div><p></p><p style="text-align: left;">M and C were my roommates and coworkers, spreading news in suburban San Antonio, the first professional job for most of us. Needless to say, we bonded big time. I don't remember who moved up first to the big -city San Antonio Express-News but she brought us along in time, and we added another 20-something single woman to our crew. Boy, we had some wild times, and I think that is where I learned to love cooking.</p><p style="text-align: left;">We did not attempt any of that (doctor's orders for me) this weekend, but I did want to offer the bounty of our state. Olathe corn and Palisade peaches just <i>had </i>to be consumed. Unfortunately those and some other menu items were the very foods M was not to eat, she now knows.</p><p style="text-align: left;">Teaching Mah Jong to the group became exceeding difficult, as the sounds of distress intensified. Concern about my fragile system prompted me to jump ship, or in this case, wheedle a ride down the mountain to home. M needed a thermometer anyway.</p><p style="text-align: left;">The short-term rental the ladies found was a great place, with awesome views and very challenging access (More than one of the flatlanders--Texas and Virginia--commented, I can't even imagine driving this in the rain. I didn't dare correct them for at 3 am M was in serious enough shape to warrant a doctor and whatever lurked on the road. I'm not sure it would have had a chance against these ladies, though.</p><p>Of course we were sad to have not completed our long-lost adventure, but had a good time and are making plan for the next one: Within 20 miles of hospital? On call nurse? Thtt's traveling while elderly, I guess.<br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com2tag:blogger.com,1999:blog-6580433909680647960.post-31037044134787759142021-09-01T10:03:00.001-06:002021-09-01T10:04:33.583-06:00Matchmaker, matchmaker, make me a match<p>The waiting game continues, toward a new goal: the only cure to this nefarious condition, stem cell transplant.</p><p>Many things need to line up just right for this to happen, but the team at Colorado Blood Cancer Institute seems to have worked that magic many times with great success.</p><p>First, I need to be in remission, which I am and hope to continue to be while this plays out.</p><p>Most importantly, though, is a donor, some selfless individual of Northern European lineage who will need to take several hours to give me my life back. The initial screen showed 30 potential matches, so I am hopeful.</p><p>From there, it is another hospital stay of 3-4 weeks, then a very compromised immune system that will require me to stay within 20 miles of the hospital for 90 days. (unfortunately, we live 28 miles away). </p><p>There's no telling when this will commence, but it looks like I won't be doing much leaf peeping or early-season skiing this year. I may miss our first elk rutting, which I am told is a sight (and sound) to behold. And depending on the timing, the holidays may look very different this year.</p><p>But if it gets rid of those nasty cancer cells lurking in the my body, it'll be a small price.<br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com1tag:blogger.com,1999:blog-6580433909680647960.post-58679489662912899142021-08-23T20:13:00.014-06:002021-08-23T20:29:23.213-06:00Lessons in patience<p>Ironic, isn't it that patience and patients are so similar sounding, and also so intimately connected? For as patients, we must endure so many delays, backlogs, reschedulings and just plain ineptitude that causes all of the above. </p><p>It is enough to try one's patience, for sure.</p><p>Today, I was supposed to start a new round of therapy involving 3 days of infusions, 10 days of twice-daily injections, 7 days of an oral medication I took before and an indefinite dose of a new pill to address a mutation in my leukemia. </p><p>So we took the 50-minute drive to the outpatient infusion center, a pleasant-enough place with caring nurses, warm blankets, free snacks and reclining seats looking onto green trees. I settled in for the 2-hour infusion.<br /></p><p>I hadn't even gotten through a chapter of my novel before the nurse informed me that there was an insurance issue with the injectable drug, and since protocol is to start the therapies at the same time I would not start treatment today. If I were to receive the drugs Tuesday morning, we could go ahead with a slightly altered schedule.</p><p>By 3pm, I hadn't heard from the clinic or the pharmacy (located in North Carolina, i.e., Eastern time zone), so I called and entered the wonderful world of phone trees.</p><p>Reciting my name (with spelling) and birthdate has become almost second nature now, so I finally reached a pharmacist who found the order but could not explain why the drugs had not been -- and would not be -- shipped today."Probably a prior authorization thing," he ventured, noting that he would attend to it first thing the next day. </p><p>Sure, no problem, those of us already stressed dealing with a disease get to wait just a little longer. </p><p>Patience for the patients.<br /></p><p> <br /></p><p><br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com1tag:blogger.com,1999:blog-6580433909680647960.post-5664951483304531222021-08-19T11:08:00.001-06:002021-08-19T11:08:45.776-06:00Good news and....<p> We killed it !</p><p>The first biopsy after treatment showed no sign of leukemia!</p><p>The sneaky little devil might come back, though, so another biopsy tomorrow will show what has happened since I stopped treatment.</p><p>And Monday I start another round of treatment -- consolidation, I think the doc called it -- to ensure that it stays away. That's three days of infusions, 10 days of injections and 14 days of oral medication. But I get to do it outpatient. <br /></p><p>And enjoy my own bed with the breeze wafting in the window and the beautiful pines waving.<br /></p><p><br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com0tag:blogger.com,1999:blog-6580433909680647960.post-11655313573488786712021-08-17T09:17:00.000-06:002021-08-17T09:17:16.698-06:00Home, sweet home<p> Ah, a full night's sleep in my own bed. After a yummy dinner prepared by my daughter. I must be dreaming.</p><p>After the nightmare that was my hospital discharge, that is.</p><p>I signed the release papers at 12:21 p.m. and we drove away at 4:49. All because of our screwy insurance system.</p><p>Prescriptions for medications I would need in coming weeks were initially sent to the pharmacy near my home, but the nurses wanted to make sure I left with everything I'd need so they transferred the prescriptions to the Walgreens in the hospital. OK, that'd be easier, after all.</p><p>But insurance needed a "prior authorization" for one of the meds, meaning they wouldn't pay. To the rescue comes my case manager with a coupon allowing a 30-day supply. </p><p>Oh, but the pharmacy doesn't have one of the meds. They want me to call around and see where I might find it. The charge nurse who has dealing with this calls the home pharmacy and transfers all the meds back there.</p><p>But wait, I had already paid the copay at the hospital pharmacy. More confusion ensues and hours tick by as I'm all packed and more than ready to go. </p><p>Finally, the hospital pharmacy packs up all but two of my meds and we are instructed to pick up the other two at our home pharmacy.<br /></p><p>The bright light in the midst is the lovely nursing staff pops in with a balloon bouquet thanking me for letting <b>them </b>care for <b>me</b>! What an amazing group of dedicated professionals I was blessed to be with...</p><p>Now, in rush-hour traffic, we head home. And, of course, the local pharmacy has only a two-day supply of one medication.... <br /></p><p>Nonetheless, it's great to be home.<br /></p><p><br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com0tag:blogger.com,1999:blog-6580433909680647960.post-40152766491464640092021-08-15T10:58:00.000-06:002021-08-15T10:58:22.120-06:00She's coming home<p>One month to the day I was rolled into this hospital, it seems I will get to be rolled out, albeit in much better shape.</p><p>My body is responding well and making new blood cells, so there is apparently no reason too keep me here. I'm sure follow-up visits with the oncology team will be required, but being at home will be such a relief.</p><p>My own bed (though I'll have to change it myself), my own food (not delivered to my bedside three times a day) and my own sleep schedule (uninterrupted by well-meaning nurses), plus not having to juggle family visitors (two's the COVID limit).</p><p>I have no doubt that the amazing outpouring of support from friends and family far and wide have contributed to this oh-so-easy recovery.</p><p>A month ago, I didn't know what to expect from a diagnosis of leukemia, but I have been pleasantly surprised all along. I know this is not the end of the road, but it sure looks like a easy hike ahead.<br /></p><p><br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com2tag:blogger.com,1999:blog-6580433909680647960.post-46675321257148797802021-08-13T11:48:00.001-06:002021-08-13T11:48:23.483-06:00Scary stuff, not so much<p>Friday the 13th. I don't recall if it was a thing before the scary movie, and I don't much believe in the superstition now. It's just a coincidence of the calendar, after all.</p><p>For me today, it's one day closer to getting out of this hospital. Biopsy was yesterday and I'm sure the docs are poring over the results, ready to craft the ideal treatment plan.</p><p>Indications are it will be OK. I've started making platelets again, and I came through a digestive upset with only a little unpleasantness.</p><p>A daily walk to the hospital's memorial garden seems to be the ticket to better sleep. They won't let me go without a nurse, so taking them from their other patients and duties makes me feel a bit indulgent, but they enjoy it too!</p><p><br /></p>Kathy Leftwichhttp://www.blogger.com/profile/11924999928641952597noreply@blogger.com1