Michelle's Kidney Adventures

Worth posting that last week I got the news that I am “well beyond partial remission”, and on my way to “complete remission.” This is exciting news!

There’s still a lot of maintenance…continued medications, blood tests, other tests, in-hospital respiratory treatments, ultrasounds and many appointments. It sounds a bit overwhelming, some might say depressing, even. I guess the important thing here is to take each day at a time, following the calendar of what needs to be done, but not let it consume me. There is no other option than making sure we catch problems early, and following the doctors’ instructions — a strategy that has served me well thus far.

I suppose my biggest challenge at the moment is re-integration. I feel as if I’ve dropped off the face of the earth in a non-medical sense, with the exception of some key professional events. I’m ready to be back, and know I need to take care of myself, but look forward to returning to what my life used to be before the last six months. I’m going to make more of an effort to see people outside of my work and medical life. This is my new challenge — no more or less difficult than any that have come before. And it, too, will work out.

Hello, everyone!

Hopefully, I will not be writing this blog from an inpatient hospital bed for a long time. I have now finished the last round of chemo, and am writing from my parents’ house, flying back to DC Sunday afternoon! (Everybody cheer!!!!)

It has amazed me how little the chemo has impacted my life, but yet how much it has annoyed me. It’s not so much the medication or its side effects, but the fact that it’s interrupted my life. It’s been nice getting back to Chicago more often to see people, but it’s taken me away from DC. The loss of control one gives up as an inpatient is debilitating. I still don’t understand how an 8 hour treatment can take more than 24 hours of hospitalization. There’s a message about our medical system and bureaucracy in here.

My last dose was originally slated to be last week, but some miscommunication meant we actually went through the appointment/treatment process this week.

There have been some recent scares with the numbers, but overall, things are going better. In the end, chemo has brought the amount of protein spilling from my body to 1/8th of what it was. But 500 mg of spilled protein is still 500 mg too many. So, we use many, many medications to try to maintain/improve that number, as we strive to save the kidney.

I must refocus my energy on diet and exercise, get my high cholesterol down, stop focusing on letting myself go. I am starting a Twitter account at @healthymichelle to try to stay accountable to the community, if you follow such things. There’s a lot to get up to speed on, and I’m planning on doing this in steps, but viewing it as a lifestyle change, not a binge diet.

My medication has also been changed, which has its own risks. HIgher doses of blood pressure meds mean more potential dizziness, and new cholesterol meds could mean severe leg cramps that make me temporarily unable to walk. Not going to lie, it’s scary stuff. I’m going to have to watch myself closely.

But the bottom line is that pills, blood tests, occasional outpatient visits, these things I know how to handle.

Here’s to hoping there’s some stability, at least for a while, and the next rounds of blood tests turn out as well as possible.

There’s no happy ending that’s guaranteed for any of us, ever, but for me, right now, this is certainly a happy middle.

NO MORE CHEMO!

I’ve neglected this blog, because I’m fully integrated/loving my new job at the Associated Press! I’ve been doing a lot of traveling, and had the pleasure of attending/speaking at the Online News Association last week.

Bloodwork just came back, and to my untrained medical eye, things look stable, even improving. This week is slated to be my last round of chemo, if all goes well. I’m hoping that holds. I won’t say I’m looking forward to the last treatment, but we’ll get this done.

In other news, I’m trying to take more time for myself, and got a manicure/pedicure and massage for the first time in my life. I doubt this is as effective as actual medical science, but I suppose it can’t hurt. Really just a matter of reassigning the money I’d use for hair styling, but that’s just not worth it right now.

More from the hospital later this week, should I remember to post.

I’m finishing up PBS tomorrow, and just gave a speech at work on recognizing the importance of what one can and can’t change. I posted it on my blog, and it focuses a lot on the illness I’ve been dealing with, so I thought I would post/send the link out here as well: http://michelleminkoff.com/2011/08/18/hope-recognizing-what-you-can-and-cant-change/

Starting the AP on Monday with a week-long trip to NY, then I have a week and a half at the AP’s DC office before treatment #5! Still feeling absolutely fantastic!!

Quick update that this past round of treatment (#4) went well. My doctor is looking at cutting the treatments off early, making the next one the last one, but has also said he may still include the sixth one. Either way, he thinks it’s unlikely we’ll have to go beyond that. This puts me in a good place to transition care out of Chicago over to DC sometime around October, and I meet with a new doc in DC in September to get that process going.

Hospital stay was uneventful (yay!), and I’ve had some helpful phone calls/visits. In addition, having both parents with me during this last trip (Mom’s doing GREAT after her hip replacement!) was healing and just wonderful.

I’ve also been reading a fantastic book about perspective on life during chronic illness called Happiness During A Storm (http://www.amazon.com/Happiness-Storm-Illness-Embracing-Survivor/dp/0393329054/ref=pd_sxp_f_pt). It’s really helped me keep my spirits up, and remember the power of hope. I recommend it to everyone, even if you don’t have a chronic illness, to help us remember what’s important in life and help us get through life’s ups and downs — whatever they may be.

It may not seem like a big deal, but I’ve returned to teaching myself more new computer programming skills. I’ve been laying off on this while I’ve been sick, and partially because I didn’t believe I’d be pushing on much longer professionally/working on projects requiring complicated skillsets. And the more I do it, the more optimistic I feel. So, that’s definitely good!

Taking it easy, but no real pain or discomfort. Staying on track to enter my last two weeks of work before my job switch, and push, push, push to the finish line. The last few weeks have reminded me why I’m fighting for my life, and I’ve felt a real emotional boost, and I’m ready to move. I start work in two weeks at the AP’s NY headquarters, and am taking the weekend before to see friends and family. Should serve as a nice transition, and then I’ll be rearing to go to enter the next stage of my professional life. Promises to be awesome!

This week, I head back for round 4 of treatment. There is a slight possibility that they may cut it off early (because it’s been pretty successful) after this one. But if not, I’m all for doing whatever is medically necessary.

The other news in my life, if you haven’t heard, is that I will be changing jobs soon. I’ve accepted a position doing the computerish journalism I do over at the Associated Press, in their Washington office.

Some have asked how this dovetails with these ongoing medical issues. A mentor of mine suggests that you must assume you are at your best, and then work w/your employer to deal w/the issues when they are anything other than the best. I’m hoping the positive working environment does some healing of its own. And I’ve been feeling great. I also plan on telling my body this is no longer acceptable — we’ll see how that works out!

Seriously, my new colleagues and I plan on working together to get through this, and dealing w/absences for treatment as it comes.

Another friend suggested that people are only given the trials/life experiences they can handle. So, handle it I shall!

I’ll be in the hospital Thurs. and Fri. should anyone want to call/visit. And I’ll post updates as I can, per usual.

Things have been going quite smoothly the past few weeks. Energy level is decent, as long as I get enough sleep. There’s a few frustrations with hospital bureaucracy, but it’s been a while since that was my biggest issue.

The other main inconvenience I’ve been facing is that my “hair thinning” has now turned into a significant portion of the hair on the very top of my head falling out. It’s very emotionally concerning, but not a true medical issue.

It’s to the point where I avert my eyes from the mirror when I walk by, but know I have to face the harsh reality for obvious reasons (brushing my teeth, putting on makeup (sometimes), combing the hair that’s left.) I don’t like going out in public like that.

It’s nowhere near bad enough to justify shaving it all off, or a buzz cut — I’m hoping it doesn’t get too much more serious. Scarves are out of the question, because I’m horrible at tying things, and again, there’s got to be a solution that’s a little less “I’M A CHEMO PATIENT!!!!!”

Since I still have a lot of hair on the sides and back of my head, hats seemed like a good, fun solution. People have always commented I look good in them, I just don’t wear them that often.

I had fun this past weekend shopping for them around D.C., including a fun store in Dupont called the Propper Topper.

Below, I’ve included a slideshow showing off the various styles (you may need to click on a link if you get this via email.) I’ll add to the collection over time. And when you see me in person, don’t be surprised to see me rocking something on top of my head, at least for the short term. And maybe I’ll keep wearing them long after I need it, but I’ve got a while to think about that.

If you’ll excuse me, I’m off to answer some emails before getting a good night’s rest before work tomorrow! More to come when there’s news, hopefully not for a little while!

I should post something about the happenings of the last month. I’m back into the swing of work, and things are quite busy, so I don’t have as much time for rambling posts. Last treatment was alright — a full, cancer-sized dose, but we may not have to go the full six months. I was really wiped out, and suffering from severe stomach pain. Pain was fixed by med adjustments, exhaustion is fixed by sleeping a whole eight hours a night (suppose it’s not so abnormal).

I’m back to work these days, getting out and about, but taking it slow. Less heading out socially on weekdays, but I’m getting a lot accomplished, and feeling better about life. The medical tests are an interrupution, rather than my life interrupting the medical tests.

The next treatment cycle is in about three weeks, so I have some time to just…live.

Here’s hoping things stay like this for a little while — there’s been enough excitement for a bit.

I realized I hadn’t really updated this since my hospital stay that ended about a week ago. I’ve spent the week pretty much homebound in my apartment. And if you know me at all, having to do that is more painful than all the needles I endure in my hospital visits. Wait. I take that back. Just as painful. Because I really hate needles. But I like being able to do things. I haven’t even really done much on my computer, letting correspondence, social media, and yes, even my coding work, just sort of…lapse.

I was finally feeling a little better on Thursday, but a simple blood test turned into a bureaucratic quest from hell. I believe it would have exhausted someone at full energy, and for someone with anemia, still recovering from a 4-day hospital stay, it knocked me back a few more pegs.

But some calls from friends Saturday afternoon perked me back up a little bit, and a visit from a dear friend who recently moved to the area made me feel much more alive, and just better. Thanks, Heather!

Today (Sunday) for Father’s Day, Dad (who’s staying with me) and I decided we needed to get out of the apartment for our own sanity, and also to do something somewhat celebratory. We went to the Georgetown Flea Market, and did some kitchen shopping. It was far from my normal. Going up a flight of stairs from the market to the car left me almost collapsing at the top, and it wasn’t that strenuous. We drove everywhere, whereas I would normally take the subway. And by the time we got back, my legs were SO tired. We didn’t even walk that much. But it was great psychologically.

I feel like I can start working from home, at least, again. However, I have tons of bureaucratic stuff to get in order for Georgetown, and I think dealing with it is going to exhaust me. Delaying my return to work a bit more. This is not what I want. This will be followed by three doctors’ appointments Wed, Thurs and Fri, and then next Tuesday, I fly back to Chicago for treatment No. 3.

Dad and I joke that I’ll feel better just in time to fly in for the treatment, and we’ll start this process all over.

The kidney disease numbers continue to improve, so I keep telling myself it’s all worth it.

And now, my hair has started to fall out. It’s not really noticeable, but when I dry, and brush my hair through it,more than a strand at a time is coming off in my hand. Which is just shocking to me, more than anything else. They did say my hair might thin, and I start off with pretty thick hair, so I’m hoping to weather it.

But things are moving along, and I’m still in pretty high spirits — considering everything that’s going on.

I guess I’ll end by saying having Dad here has been a real help, running errands when I can’t, picking things up so I don’t get dizzy, having someone to talk about all this with, etc. I don’t know what I’d do without my parents’ no-questions-asked support. And I know my mom would be here if she could (she just got out of physical rehab and is still recovering from a hip replacement.) I can’t think of a more fitting day than Father’s Day to let both my parents know just how much I appreciate them.

Coming to you sometime between Thursday and Friday from Georgetown University Hospital in DC — land of the waiters who take your food orders, beds that turn into full chairs (yes, you read correctly), tests where stat actually means, well, stat.

The fact that I’m here means this is an unplanned stay (boo!) although I will eventually transition care here.

Like everything in DC, this place has a storied history. Among other notable occurrences, this is where Reagan went after an attempted assassination. And if it was good enough for him, I bet I’m in good hands.

I slept much of Tuesday and until about 2pm Wednesday, all fairly continuously. I didn’t really have the strength to walk to the kitchen to get water. Lame. Called my dad and asked him to fly in, because it seemed serious. Long story short, my red blood cell counts and platelets were about half of the low side of normal. This is probably a reaction to one of the many, many meds I’m on — including the chemo. Again, lame.

The way you fix the symptoms is by getting someone else’s red blood cells, aka a blood transfusion. I was scared out of my mind, and convinced it was a surgical procedure, or they at least had to get thicker IV lines. But no, apparently, you can hang it just like a bag of fluids or medication, it’s just thick, like chemo, and red, not like chemo. A red like nothing else I’ve ever seen. Two big bags of — I’ll stop here before I get ill thinking about it. Or lose you entirely. Sorry.

I’m still not back to normal, but also don’t feel like standing up for more than 10 seconds is a marathon effort. This is actually a plus.

However, since the low blood cell count can cause me to be dizzy, have heart palpitations or simply fall from lack of strength, I’m not supposed to go anywhere myself without supervision.

I find it very frightening that this can happen all of a sudden, and get so serious. It also amazes me how much better I feel after one procedure, but it’s not something I could have gotten over the counter.

Fundamentally, we’re working on treating the symptoms, but not the issue, which is serious anemia, caused by the meds. I’m already on iron pills, but we may have to add more meds/treatments.

Don’t even get me started on how difficult it is to get IVs in me at this point (finite number of veins, people!) and how the one they put in got so irritated it had to be removed and they’re putting in a new one at 4am and want to discuss possibility of giving me a more permanent one that will last for six months which can also breed more infection and requires local anesthesia to install.

I guess I got started. Admittedly, a bit scared.

The ongoing lesson here, which I was told, but didn’t totally accept, is that this fight for the kidney has some serious meds with serious side effects. Not a rash or a cold, but low blood cell counts and cancer and infertility and other things that require hospitalizations. In an attempt to gain months, years, decades, this may be a rougher six months than I ever imagined, which could alter my life forever in truly horrific ways. I don’t see an alternative though. I made this choice, with complete information, and now I’m in it to win it. I just have to admit, despite being called “strong” all the time, there’s a lot more to it than I could have imagined. Color me just a bit scared. Because if I wasn’t, I’m living in denial.

Trusting in my doctors, support system and a positive attitude is the only way to keep going. So, here we are, and here we continue to go.

Calls (from any of you) and visits (if you’re around DC) are appreciated — you know how to find me for details.