Day +292 Life's Joys aka Nasal Swabs and Phlebotomy

HGB: 13.7
Platelets: 232
WBC: 4.30
ANC: 2.39

There just doesn't seem to me to be any rhyme or reason to it.  My joints had been feeling relatively well - some swelling, stiffness, and pain, but minor, and inconsistent.  Then out of nowhere, last week, literally every day my hands, my ankles and my feet were so, so painful.  The outside bottom of my left foot actually felt like it was on fire for hours at a time.  I told my doctor that I just don't understand why, and she said that it's my immune response to something.  Anything at all could trigger it.  I told here that it's been hot, and that I've been getting a lot of sun, despite my best efforts not to (I try to stay out of the sun during peak hours, wear long sleeves, and always wear sunscreen) and she said that for all we know, that could be triggering my joint issues.  Seasonal allergies could trigger the GVHD, if I pick up a cold, that could trigger it.  There's really no way to pin it down, unfortunately.  So, we have elected to go up on my Jakafi.  I should be starting 15mg twice daily this week.  I am still on 10mg prednisone daily, and my doctor was unwilling to lower my dosage while I'm having joint flares.  When we do begin to taper again (hopefully at my next appointment, if all goes well with the higher dosage of Jakafi) we will be going very slowly, and they will only taper me down by 1mg at a time, as I seem to be really adversely effected by the side effects of prednisone withdrawal, even though it seems like I'm taking it so slow.  Every time we lower my dose of prednisone, the fatigue is almost unmanageable.  Like stop what I'm doing and lay down on the floor to sleep for a couple of hours unmanageable.  The ultimate goal is to get me off prednisone completely, but it's going to take quite some time. 

I've added another pill to my daily regimen in the past month, as my blood pressure has been steadily climbing, and even at home in non-stressful situations I've been running 146/96.  I really honestly used to have good blood pressure, and the doctor told me that she feels like this elevation is most likely caused by the other medications that I am on.  So I'm hoping this is just a temporary addition, and that I can wean off this as well, but to be honest, it's not looking good, as I think I'm actually taking more medications than I was when I was initially released from the hospital post transplant.

More joy in my life, I've been noticing a lot of blood when I blow or clean my nose.  (Gross, I know.)  I haven't really been having active bloody noses, but when the NP checked it out she said that my nasal passages looked so raw and inflamed that she was reluctant to even swab the right side, for fear of hurting me.  Convinced that I had picked up some sort of virus, she prescribed my a Z-pac.  By the time the results came back (negative - no infection) I had already finished 3 days of the meds, so I went ahead and finished them up anyway.  She suggested that I try a saline nose spray, but I am apparently a child, because as soon as I shoot something up my nose I start choking and sputtering like I'm drowning, and by the time I'm done hacking and blowing my nose, I've kind of defeated the purpose of trying to moisten it.  They've put in an order for a CT scan, to see if there is anything sinister going on up there.  I don't think that there is, but how would I know?  Its a huge pain in the rear, but I tell my doctors about anything weird that's going on, stuff that I usually would have shrugged off and lived with in my past life, because that's how people die.  I don't have the luxury of ignoring shit, and pretending like everything is fine, because I know that with the medications that I'm on, my immune system is suppressed, so I could be ill and not even know it.  So now I'm one of those hypochondriacs that carries tissues in my bra and checks the colors of my boogers.  I'm a joy to be around. 

After my first phlebotomy, my ferritin level went down to 1509.  My doctors want it below 1000, so I had another phlebotomy treatment last month.  This one was worse than the first, as the blood just would not come out.  My nurse kept adjusting my needle and then closing the curtain and walking away, and I was making literally no progress, and was completely immobilized by the needle in my arm attached to the bag of blood sitting on the scale on the floor.  Finally, after I'd been there an hour and a half, she agreed to manually pull the blood out with a syringe, as long as I agreed to drink a cranberry juice.  It made me nauseous and sweaty, and a little faint, but I was just glad to have it over with.  Every time Keith and I go to UCLA, the ultimate goal is to come home.  Phlebotomy days (once a month) are literally 12 hour days with travel time.  I pack our lunch so that we don't have to make unnecessary stops, but even so, with travel and appointments, and traffic and treatments, we leave at 6am, and don't get home until after 6pm.  So much of life these days is about being a patient.  Still.

I remember my grandfather telling me that he had become a professional patient, and I feel like that it what I've become too.  We are still traveling to UCLA every two weeks for appointments, and my medication and appointment management take up several hours a week.  I didn't think that it would come so early.  I thought that I'd have a few years yet.  I turned 39 in May.

My hair continues to grow.  It doesn't look good, but it is growing some.  It is weird straight in the front, and perm curly in the back.  At 39 my hair looks like one of the Golden Girls.  I suppose I should be thankful that it's Blanche instead of Sophia? 

Thank you for being a friend.

I have been so hot lately.  I know that I'm in the minority, but I hate the summer time.  Where I live, most people don't have air conditioning in their houses, as there's really just no need for it.  The hottest we get is low 80's, and that only happens a few days a year, so on those days we just turn on the fan and deal with it.  While most of Southern California suffers from May Gray and June Gloom (the marine layer, that usually keeps things cloudy and overcast with cooler temperatures) we, at a higher elevation are above it, so we get bright relentless sun while others in our region sometimes get a bit of a break and a cool off.  (That's one of the reasons that we have a solar observatory here.)  No public pools for me, as I'm still immune-compromised, so it's just a lot of lukewarm showers, and crying about being hot for a couple of months.  First day of July, and I'm already waiting for Fall.

Day +167 Progressive

Blood Counts:
HBG:15.5
PLT: 260
WBC: 7.46
ANC: 4.26

Hemoglobin was a little bit high during my last round of tests.  They said that it could be from dehydration, but that it bears watching, and that they will keep an eye on it.

Being on steroids is so hard.  On the one hand, I believe that they do have a positive impact on my joint issues.  They don't eliminate the pain, but I feel like they might help alleviate the inflammation a tiny bit.  (I was also prescribed a topical ibuprofen gel...it does absolutely nothing.)  I was put back on 40mg of prednisone daily at my last appointment, and have tapered down to 25mg.  Don't get me wrong, my fingers are still stiff and sore, and the joints in my toes, feet, and ankles can't tolerate much activity without pain, but I feel like the steroids are keeping it from getting much worse, as I haven't had very much progression into my other joints, like elbows shoulders or knees yet.  So far the pain and stiffness is keeping to the periphery, so that's better than nothing. 

Downsides are that, once again, I can't sleep at night.  I spend hours lying awake, alternately staring at the wall, or the inside of my eyelids, just hoping that I can get more than 4 hours or so.  My face is starting to fill out and look a little jowly and round again (which I hate), and I've gained back one of the lbs that I had worked so hard to lose.  Just trying to remember that they are hopefully just temporary, as my Drs have decided to try to see if Jafiki (ruxolitinib) can help with my joint issues.  I should be starting it in the next couple of days, and I'm hoping that it helps with my chronic GVHD.  If it does, then we can discuss tapering off the prednisone again. 

And by the way, how bummed am I to have developed chronic GVHD when I had literally no signs of acute GVHD in my first hundred days post transplant?  I thought I was home free.  While I'm thankful that the manifestations of GVHD have not been severe, I'm also concerned about progression, as my symptoms literally came out of nowhere, and are not completely alleviated by steroids.

Adding to my medical anxieties, I learned at my last appointment that the nurse practitioner that I have been seeing since I was released from the hospital is leaving UCLA.  On top of that, my doctor just went on maternity leave, and won't be back until May.  So I'm feeling a little bit abandoned.  I have no doubt that my new NP, and my interim Dr will be more than capable, it's just a bit difficult having to form new relationships, and explain all the nuances of my medical history to new people.

Day +151 Expectations

My blood counts continue to look good, but the joints in my hands and feet continue to ache.  I have been back on 10mg of prednisone (steroids) for almost three weeks now.  They do seem to help some, but they don't eliminate the pain and stiffness.  They've done blood tests checking for arthritis and inflammation, as well as some for graft vs. host disease, but nothing has come back red flagged...meaning nothing is off the charts high.  So they don't really know why.  All I know is that door handles are difficult, I struggle to open jars and bottles, and tasks like typing...remaking the bed...grasping anything heavy or awkwardly shaped are all very painful, and difficult.  My dr. mentioned perhaps switching me off steroids and onto a medication called Jakafi, as it has been known to help with GVHD, but if my blood tests don't support that diagnosis, I'm not sure if I'll be able to get insurance approval. 

So I'm not sure what the game plan is at this point.  The steroids make me hungry, occasionally sleepless, and give me a dull headache (not to mention long term steroid use has major negative impacts on bone health and can cause bone degeneration and osteoporosis.)  I've tried Ibuprofen, as well as a very expensive ibuprofen gel, at the urging of one of my doctors to help with the joint pain.  Neither have helped.  All I know is that my joints ache like they never have before in my life - and it's not the weather (or my age...I would hope, at 38).

In recent testing, my vitamin D level also came back very low.  They are having me take 50000 IU of vitamin D weekly for 12 weeks to try to bring it up to an acceptable level.  The doctor said that low vitamin D could play a role in my fatigue, and that it may get better as my level increases.  I've taken 3 doses so far, and I'm not running any marathons, so we'll see if it gets any better.  I had an appointment scheduled with an endocrinologist to check that my adrenal glands are functioning correctly, but had to cancel when I went back on prednisone, as the testing cannot be done accurately while on steroids.

Good news is that my BCR-ABL test came back (this is the test that I've been having ever since i was diagnosed that tests the "cancer level" for CML).  Before I went to transplant, my number had inched back up over 5%.  My recent BCR-ABL was negative.  Meaning no cancer.  No leukemia.  For the first time in almost 5 years, I can say that I don't have cancer.  At all.  Most CML patients in this day and age never get to say that, so in that respect I feel very fortunate.

As much as I hate to say it, I have to admit that I feel like a horrible and ungrateful person most of the time, because to be honest, I felt physically better before my transplant.  I felt physically better with low levels of cancer, than I do now almost 5 months post transplant.  There it is.  No caveat to add to that, no "well at least..."  I'm happy that I don't have cancer any more, but I'm sad about the things that treatment has cost me. 

I've been trying to lose some of the weight that I seem to have acquired.  (No one ever tells you that's going to happen.  They tell you about the chemo nausea and weight loss, but they never tell you about the medication weight gain.)  It's coming off twice as slowly as it went on.  I purposely gained 15 lbs before I went into the hospital, thinking that it would help me once chemo killed my appetite.  That never really happened for me, and with three months on high dose steroids, I gained another 15 lbs.  In the past 6 weeks, I've managed to ditch 7.5 lbs, but it's been a struggle, especially since I'm on steroids again, and they make my stomach think my throat's been cut (aka I'm always hungry), and exercising a lot has been difficult since my ankles and toes start killing me after about half an hour on my feet.  Struggling, but trying hard.

Hair is also coming in a bit more.  Every week I can see a little less scalp, so that is a good thing.  Very soft, and kind of dappled in color.  I've heard that it often comes in curly - like Richard Simmons curly - after chemo treatment.  So far, laying pretty flat in most spots, so I hope to dodge that bullet.

Almost real hair

Still traveling to UCLA every two weeks.  Sometimes (especially when the weather or traffic is horrible) it feels like a waste of time, since my doctors don't really know what to do about my recent joint issues, and according to them, compared to other transplant patients, I am doing "so, so well".  I don't want to be compared to other patients, though.  I want to be better than *I* was before.  Maybe I have unrealistic expectations.

Day +124 Aches and Pains

Someone asked me a couple of weeks ago if I'm bored.  I'm not.  I'm not even close to bored.  I feel so exhausted all of the time, that making it through my daily tasks right now feels like an accomplishment.  Just showering and changing my clothes, or changing the bed sheets and doing a load of laundry, make me tired enough to need a nap.  I've mentioned my fatigue to my doctors and they think that I should be feeling better/more energetic by now.  If things don't improve in the next couple of weeks, they may want to send me to an endocrinologist to make sure that my adrenal glands are functioning correctly.

My blood counts had actually improved from their downward trend in December, and all of the biggies were back within normal range when I saw the Dr. on Jan. 2nd:

Blood counts:
HGB: 13.7
PLT: 222
WBC: 4.93
ANC: 2.6

Something weird is going on with my joints in my hands/feet, though.  It started on Christmas, and I felt like maybe I had just done too much that day, and that my hands were just fatigued...but then it didn't get better.  The joints in my fingers are very sore and stiff - almost like I have severe arthritis.  The thumbs are especially painful.  I have a hard time opening bottles and jars, and they feel weak, like if I needed to pick up or hold something large or something heavy, they would fail altogether, and I would drop it.  The doctor tested my uric acid levels to make sure it wasn't gout, tested my tacro level to make sure that it wasn't too high, and was otherwise stumped as to what it may be causing my discomfort.  I told her that I felt stupid for mentioning it, but she noted that my liver enzymes were high (for me) and that my potassium was high - so there was definitely something going on there, they just don't know what yet.  She said that they could send me to a reumatologist, but that it was generally unhelpful.  I asked if people get GVHD in their joints, is that a thing? and she told me that it does sometime manifest in joints and connective tissues, but that it generally causes a stiffening and limits the range of motion, instead of causing pain.

As of my last appointment, she told me to go ahead and take occasional ibuprofen for the discomfort, but that if it didn't get better, they may want me to go back on a small dosage of steroids to see if that improves the situation.  (Not a fan of this plan.  Finally starting to see improvement from some of the awful steroid side effects, like not being able to sleep, wanting to eat everything that's not nailed down, and my lovely moon face and camel hump has finally receded a bit, so I'm not too keen on inviting all of those things back into my life.)  It's been almost two weeks.  My hands still hurt, so we will see.

Finally growing a little peach fuzz on my head.  It's strange colored, and like a fuzzy baby duck.  I don't think that I was prepared when I lost my hair for how long it would take to start growing back.  I am still very bald.  You can still see my bare head through the little bit of hair that has decided to grow.  It's been four months since I lost my hair, and it isn't coming in very quickly or very evenly.  The sides of my head are still quite sparce.  I will be wearing hats for quite some time.

Fuzz

(Before anyone wants to go and tell me how good I look bald, check yourself.  Imagine how you would feel being bald for 4+ months, not by choice - especially when you've gained 15lbs from steroid hunger and the full body view looks more like Shrek than Amber Rose. )

I'll be seeing the doctor again this week.  At my +100 day appointment I was told that my tests came back < 97% donor - or donor to the limits of the test - which is great, but at my last appointment, the doctor told me that more of the tests had come back and that one of the cell lines - my T-cells - testing came back 90% donor, 10% me, so they'll be continuing to test and monitor this every 4 weeks or so to check my chimerism. 

Still keeping myself very isolated.  Whenever I do venture out, I'm shocked about how icky people are in public places.  Way too much coughing and snarfling - I think I physically recoiled when I kid sneezed on his mom, behind me, in line at Walgreens last week.  I think I'll just order as much as I can online for home delivery.  Heading out to the store for a sale on toilet paper is just not worth it.  Getting sick terrifies me right now.

Stay well.  I plan to do the same.

Day +100 Hard Core

Well, I made it.  Today is day +100 and I didn't die, so, success!

Blood counts:
HGB: 12.0
PLT: 172
WBC: 3.79
ANC: 1.6

Bone marrow last week did not go well. The nurse practitioner had a really hard time getting through the bone, and then once she did, there was no fluid to pull out. Dry tap. So they got a different NP to give it a try. It was a struggle. At one point she was bracing her knee up on the table with me, and pushing as hard as she could, and still couldn't get through. She was finally able to get in, and pull one vial of aspirate, but then the well dried up, and they couldn't get any more. (They needed three.)  So they took the one aspirate, and a piece of the bone and ordered most of the tests to be performed on peripheral blood.  And its a good thing too.  When I went back this past week, none of the bone marrow samples had sufficient cells for testing.  So I have two holes in my hip bone, but nothing to show for it.  I asked the NP if the bone grows back, and she said, "I would hope so."  Love the honesty.  Yeah, I would hope so too.

I also had a dental crown fall off this week.  (Again.  The crown actually initially came off a couple of weeks ago, but my doctors told me that they would prefer that I not have any dental work done while I was still on steroids, so I put it back on with dent-u-temp and hoped for the best.)  I'd been super dreading going to the dentist to have it fixed.  I hate going to the dentist the most because I hate getting the lecture about how my bad my previous dental work is, and how this silver filling is cracking my teeth, and this crown fits poorly, and this tooth has a cavity.  I was hoping he would just glue the crown back on and I could be on my way, but that is never the case, and it turned into more than I had hoped for, when he found a cavity in the tooth in front of the crown, that could only be filled when the crown was removed, so I ended up in the chair for over two hours having a filling, and then a build-up, and then getting the crown re-cemented.  When the dentist asked me why I hadn't come back to complete the other things that I needed done, I told him, uh, yeah bro, in case you couldn't tell by my bald head, I've had some other more important health issues to worry about lately.  I hate the dentist, but I'm glad I sucked it up and acted like an adult and got it taken care of, so that I didn't have to worry about it falling off again over the holidays.

It feels like my whole life is sucking it up and having to act like an adult, doing things that I don't want to do, all of the time these days.  There is no putting things off, there is no procrastinating, all the time it's hard core adulting every day, all day.  Doctors appointments, scheduling appointments, at home nursing appointments, driving in traffic, medication refills, medical bills, dozens of pills multiple times a day, broken down cars, loose dental crowns, showering with a plastic bag on my arm, antifungal bath powder, constant hand washing/sanitizing ALL OF THE TIME.  I know that sometimes you gotta do things that you don't want to do, but do you have to do them EVERY DAY?  Cause I do.

Despite that, here I am 100 days post transplant, and according to the doctors I am doing well.  I am <97% donor, which means that the transplant worked, and that the donors blood making system has replaced my own.  I've had no GVHD, no significant infections, and I've made it to day +100 relatively unscathed.  They pulled out my PICC line on Thursday, and I couldn't be any happier about that, as the skin around it was beginning to get very irritated.

No more PICC

 I still need to be very careful about being getting sick, as I was told that any type of infection could activate GVHD - which I had no clue about.  I'm still sleeping about 12 hours a day/night most of the time, and really don't have very much energy.  I'm starting to get a little bit more fuzz on my head, and it's almost more unattractive than being completely bald.  I anticipate that in another 6 weeks I'll look like a Chia Pet.  Still not sure what color I'm going to get, right now there's a bit of variety, so we'll see which ends up dominating.

Kitten fur

Christmas this year will be quiet, which is my happy place anyway, as I've always been an introvert, and generally find holidays and occasions exhausting.  My next doctors appointment isn't until next year!!!  (Ok, it's on the 2nd, so barely next year, but it's nice to know that we don't have to make the drive in the midst of the crazy holiday traffic.)   Keith has been amazing through all of this.  Extremely protective of me, the voice of reason when I'm on the edge, he's taken on so many of the household tasks that I'm still unable to do, and kept us both sane during all of this crazy. 

Thank you.  You're the wind beneath my wings. 

Day +65 Sleepy

Date: 11.17.18
Time: 5:10pm

Blood counts: all good

Still struggling with fatigue.  I slept all day again yesterday.  (Hey, at least I'm sleeping now, right?)  My prednisone has been reduced to 5mg daily, so that is probably part of the reason why I'm so tired.  The edema...the edema is still there.  Last week, the doctor finally agreed to let me take lasix, which is a diuretic or a "water pill" and it seemed to be helping some.  However, this week, I showed up with what looked like a razor rash on my shins...turns out, lasix has a "sulfa drug" component.  Which I am allergic to.  So no more lasix.  I've been doing my best to avoid a lot of salt, and wearing compression stockings, but every morning I wake up and can see the seams of my pants imprinted in my legs from ankle all the way up my thigh, so I'm retaining quite a bit of water, but can't really do much about it.  Since I'm not having any breathing or heart issues, the plan is once again continue to monitor, and do what I can, personally, to try to keep myself comfortable. 

Still very little hair on my head.  I'm starting to get a tiny bit of stubble, but at the rate that it is growing, I will never have long hair again.  I do wear a wig every once in a while, but if I'm doing anything other than sitting around, they make me really hot really fast, and it ain't a pretty sight when I start sweating my bald little ass off.   

Sitting around my house with hair.

So really, I sleep a lot.  I do a few things around the house when I'm able.  I eat more than I should for the level of exercise that I get (slim to none), and I'm still pretty much on lock down at home, except for my weekly appointments at UCLA, which is for the best, because I'm terrified on getting an infection (a cold, the flu) and the less exposure that I have to people, the better.  I'm beginning to realize that my recovery is going to take a lot longer than I had originally anticipated, since I can't even make it through an entire day right now without a 4 hour nap.

Day +40 Released

Date: 10.23.18
Time: 4:53pm

HGB: 13.9
PLT: 165
WBC: 7.98
ANC: 6.84
Tacrolimus: 21
Magnesium: 1.2

I'm apologize for the silence last week.  I saw the doctor on Thursday, and I fully expected her to release me to go home, and was unpleasantly surprised when she told me not until next week.  It kinda crushed my hopes.  To be fair, she did adjust two of my medication dosages on Thursday, and most likely wanted to monitor to make sure that nothing cropped up, but it was hard to take.  I'm not cut out for city living.  Especially when I'm restricted from going anywhere.

Yesterday, though, I was finally released to come home.  Keith and I waited out the traffic, packed up, and came home late last night.  It's beautiful here.  Its good to be home.

Home Sweet Home (*photo by Keith)

Our Favorite Hiking Trail (*photo by Keith)

I've been feeling a bit of disconnect.  Every time I see my doctors they tell me how well I'm doing, but every day I feel a bit worse.  For about two weeks now, I've had headaches that have been getting worse daily.  Headache when I wake up in the morning that lingers until 10 or 11, and then comes back at 4 or 5.  Headaches that stop me in my tracks where I literally cannot function.  I believe that these are related to my tacrolimus level.  The doctor gave me the okay to try tylenol or a very occasional ibuprofen, which I did.  Neither helped.  She reduced the amount of tacrolimus that I'm taking last Thursday, and it seems like that is starting to help.  I'm now alternating .5mg one day, and 1mg the next, and it seems like the headaches are getting less severe and I'm getting more time mid day headache free.

I'm starting to feel much more fatigued too.  I pretty much slept the entire day on Saturday, and have been taking naps almost everyday.  Good news is that I'm starting to sleep more at night too.  Last night was the first night that I slept through the night without waking up and staying awake for a few hours in the middle of the night.  My prednisone has been reduced to 20mg a day, and I'm really feeling the tiredness and fatigue catch up with me.  My doctor tells me that this is totally normal, and that as my steroid is reduced further, that I will continue to feel tired, but that my blood counts look good, and that it is just my body recovering and making new cells.

Aside from that just enjoying being in my home, sleeping in my bed, petting my cats, feeling the cool air, and seeing all of the beautiful changes of fall.  Oh yeah, and Keith painted my bathroom vanity while I was gone.  How pretty.

"All White Errthing"

So I'm tired with a dull headache, but I'm home so today, is a good day.

Day +31 I Wanna Be Sedated

Date: 10.14.18
Time: 3:24pm

Fun fact: My mouth tastes like I licked an envelope.  ALL THE TIME.  Not like I just licked envelope glue, but kinda faded, like I did it 20 minutes ago, and the bitterness is still there.  I hope it goes away, eventually.

They forgot to give me a print out of my blood counts at my appointment Thursday, so I don't have them on hand.  Platelets were a touch lower, but not concerningly so, magnesium was still low despite the fact that I take 9 magnesium pills a day, but that's because the Tacrolimus eats it.  My Tacrolimus level was high, so the NP had me hold my dose for a full day.  Hopefully that helped to bring it into the range that we are looking for.

Morning Trail Mix and a Shot of Liquid Sunshine

My steroids have been reduced to 30mg daily, and no GVHD flares, so that is a good thing, because my face is approaching the size of a planet.  It will most likely continue to get fuller until I am off the steroids completely, which may take awhile.  My doctor indicated that once I get down to about 20mg, that they will taper me much more slowly, so it could still be several weeks or months, depending on any reactions that I have as the taper continues.

My face on steroids.

What my face usually looks like.

Thursday was a marathon day at the clinic, I was there from 8:30am until 2:00pm.  I had my blood drawn, had my PICC line dressing changed, saw the NP, and had my IVIG infusion.  I've been feeling a little under the weather, so I mentioned to the NP that I had a dull headache, and my glands felt tender.  She said that it's possible that the headache is caused by the Tacrolimus, and she felt my glands, and said that she didn't detect any swelling or lumps, but decided to take a nasal swab to test, to make sure that I wasn't fighting any sort of viral infection, or anything else.  I don't know why I never thought about what a nasal swab would entail, but I'm pretty sure that she nearly reached my brain with how far she stuck that thing up my nose.  The results came back on Friday - normal.  Still feeling a bit tender and run down, though.

Still having a difficult time sleeping and staying asleep.  The NP gave me a prescription for Trazadone which is an antidepressant with an off label usage of a sedative.  She said that it is a "cleaner drug" than some other kind of sedative, and that it would have less interactions with the medications that I am currently on, so I'm giving it a try.  For the most part, I think that it has been helping me sleep, but I've been getting horrible tension headaches in the back of my head and neck.  So bad that I can't stand up without stopping dead in my tracks and closing my eyes, and can't turn my head to the right without debilitating pain.  I don't know if it's the stress of everything that I have going on right now (which is very possible) or if it's the new medication.  I'm going to try to go without it for a few days and see if the headaches go away.  Back to lying awake staring at the wall all night.  Sigh.

In preparing for my transplant, and even now post-transplant (a full month, people, I'm making it), I found the blogs and the stories of others that have been through this strange and awful thing so vital.  And that's a big part of why I continue to tell my story.  Its so rare for a CML patient to fail TKI therapy and have to go to transplant, I hope that it may help someone in some small way, because to be honest, it's not easy to write.  It's not easy to share the details of your life when you're at your worst.  In the words of another transplant survivor, Kevin McDevitt, " I realized that discussing one’s personal trauma publicly requires a level of emotional nudity that borders on pornography. That may sound extreme, but just know that if you’ve felt any truth or connection to what I’ve been writing, it’s come at great emotional expense. "  I'm the kind of person, that when I'm sick, or I don't feel well, I just want to hide away until I feel better.  It's hard to put it on display, it's a hard thing to share.  That said, I'm so grateful and thankful for those that went before me and have shared their stories:

http://hollowmeout.blogspot.com/

http://bloodyawesomejourney.com/

http://pattimoonis.blogspot.com/

(you will need to sign up for a CaringBridge account to access any of the CaringBridge links)

https://www.caringbridge.org/visit/leamorrison

https://www.caringbridge.org/visit/cherylthornton

https://www.caringbridge.org/visit/bjranier

https://www.caringbridge.org/visit/susanleigh

https://www.caringbridge.org/visit/shiraweisbach

https://www.caringbridge.org/visit/shanemyers

And also this young woman, who was diagnosed with Ph+ AML, which is very rare.  She had an incredibly difficult time with post-transplant complications and debhilitating GVHD that she is still struggling with.

https://amletc.com/?s=etc

I think that the biggest take-away that I've gotten by reading each of these other stories is that everyone is completely different, everyone's recovery happens at a different pace, that everyone suffers in their own way, and that no one else can really comprehend the levels and the depth of another persons suffering.  I will continue to share the details of my recovery, but please be patient with me, and please understand that putting myself on display when I'm at my worst is a difficult thing to do.

I'm not due back at clinic again until Wednesday or Thursday (depending on if they can get approval to schedule for my IVIG - still struggling with insurance issues on that), so I hope to have an uneventful handful of days.

Day +26 Onward

Date: 10.09.18
Time: 6:30am

No updated blood counts, as I haven't had labs drawn since 10.04.18.  My next clinic appointment isn't until Thursday, and my team believes that I'd doing very well.

Still having trouble sleeping.  I've been lying there since 4am waiting for the sun, and a respectable hour so I felt like I could get up.  It doesn't help that my internal temperature gauge is all screwed up.  I'm having crazy night sweats, and I wake up sweaty several times a night, even though I keep the room arctic.  The care partners at the hospital used to joke that when Keith came down to stay that he would need extra blankets unless he was a penguin.  I told them we're from Big Bear; we're used to the cold, but I think that I'm maybe running a little hotter than usual most of the time.  (No temperatures, though, I've been checking a couple of times a day.)  I think the sleep might be improving incrementally, as it's only taking me an hour or so to fall asleep, but my activity tracker recorded 2hrs 50min of deep sleep last night, and 4hrs and 26min of "light".  It's still a far cry from the way I used to sleep, but hopefully as I continue to reduce some of my meds, the sleep will get better.

I'm down to 40mg of steroids a day (thank goodness) and all has been well on that dosage, so hopefully I will get to reduce further this week.  I am still on a fairly high dosage of Tacrolimus, however, and the tremors and shakes are frustrating and foreign. 

A lot of people have asked me about my dietary restrictions.  I am no longer required to eat a "low bacteria" processed neutropenic diet.  I can have fresh fruits and vegetables, as long as they are well washed, and can eat most things.  My only restrictions are that I cannot have raw or under-cooked meat, eggs, seafood, unpasteurized dairy products, or any food from buffets, service deli's, any food cut or cleaned by someone else, and all cooked food must reach an internal temperature of 165 degrees.  I am still eating a fairly processed diet, as Tiverton (the hotel) does have a communal kitchen, but I feel uncomfortable mixing my food with everyone elses, so we have just been using the small bar fridge in our room to store our meals, and really buying a lot of convenience foods that can just be cooked in the microwave.  Still the queen of peanut butter and jelly sandwiches.

Tiverton House

I've had a difficult week mentally, as my employer decided to change our health insurance as of October 1st.  I was previously enrolled in an HMO plan, and as such, my selected medical group was responsible for my post transplant care up until day 90.  (I was still responsible for meeting my deductible and my max out of pocket for the year, but they were responsible for covering and making sure that I got the required care that I needed.)  My employer decided to no longer to offer an HMO plan, beginning on October 1st, so my medical group immediately dropped all plans of after care, and I had several departments at UCLA scrambling to try to secure emergency authorizations to keep "continuity of care" so that I could get the treatments that I immediately needed.  The staff at UCLA said that they have never had this happen to a transplant patient.  On top of the change from HMO to PPO, I am now again required to meet a new deductible and max out of pocket amount between now and December 31st, 2018 and then, again, beginning on Jan 01, 2019.  Under my new PPO, the coinsurance on a single month of ONE of my required medications is $2765.  When I went into transplant I fully expected to meet my max out of pocket for 2018 of $4500, but I didn't expect to meet that, and then have to meet another max of $6350 as well.  Between appointments, and fatigue, and not feeling very well some days, I've been working on contacting the drug manufacturer for the most expensive of my medications to see if they have any copay assistance programs, researching assistance programs online, and juggling calls from the financial department, nurses, and social worker at UCLA who are all trying to help make sure that I continue to get the care that I need.  It's fucking exhausting and entirely emotionally draining on top of everything else that I have going on right now.

IVIG Expensive but Necessary

So, I am keeping on keeping on, doing my best.  I feel fatigued during the days, but part of that may be my lack of quality sleep at night.  My next clinic appointment is Thursday - and it will be another full day of having blood drawn, seeing the nurse practitioner, and having my IVIG infusion, which takes 3-4 hours.  (I will need to have IVIG weekly until day +100.)  Again, "Intravenous immune globulin ("IVIG") is a product made up of antibodies that can be given intravenously (through a vein).
Antibodies are proteins that your body makes to help you fight infections. Each antibody made by your body is slightly different, because it fits like a lock and key to every foreign substance (such as a virus) that gets into your body. Over the course of your life your body makes thousands of different antibodies. IVIG is prepared from the blood donated by thousands of people, to make a super-concentrated collection of antibodies against many possible foreign substances your body might encounter.One reason you might need IVIG is if your body does not make enough antibodies. The IVIG simply provides extra antibodies that your body cannot make on its own. The antibodies usually last for several weeks and help your body fight off a large variety of infections. If you are getting IVIG for this reason, you will need to get it on a regular schedule."  

I'm a quarter of the way to Day +100 which is a really important milestone post transplant.  Day +100 is when the greatest risk for critical side effects is past, and hopefully my new stem cells have engrafted and started making new blood cells. 

Onward and upward. 

Day +22 Surreal

Date: 10.05.2018
Time: 8:15pm

HGB: 12.6
PLT: 159
WBC: 5.62
ANC: 2.73

Well, I continue to lose my hair. I thought that I was pretty much as bald as I was going to get, but as I was washing my...head (by the way, what exactly are you supposed to wash your bald head with? Body wash? Shampoo? Mr. Clean? ) A bunch of little whiskery hairs kept coming off on the wash cloth. I have one patch right in the front that is still hanging on, and I'm convinced that if I hadn't shaved it, I'd have a cupie doll curl right in the top front. How attractive.

My face is also filling out and I'm starting to get the traditional "moon face" that usually goes hand in hand with prolonged high doses of Prednisone. I look in the mirror and I hardly recognize myself.  I tried to remedy that somewhat by putting on makeup the other day, but the Tacrolimus that I am on makes me so shaky that I ended up looking like Edward Scissorhands - well bald, fat Edward Scissorhands.

Things continue to go well healthwise, and my Dr. said that I'm doing "so, so, well" when I saw her yesterday.  I feel like a shell of a human being though.  I'm not allowed yet to resume my life in any way that feels even a little bit normal, I look like the marshmallow man version of myself, I barely sleep, and I spend my time devising menial tasks to keep myself occupied.

Day +15 Outta the Joint

Date: 09.28.18
Time: 8:27pm

As of 09.27.18

HGB: 11.3
PLT: 97
WBC: 5.83
ANC: 3.06

They let me out!  Not without restrictions, but they decided that I was doing well enough to be discharged from the hospital to the "hospital adjacent" housing, and Keith came and picked me up on Wednesday night!  I got unhooked from my trusty IV pole, threw on my wig, loaded up my tank top/ lounge pant gear into my mega suitcase, and moved the half a mile from UCLA ward 6East to Tiverton House! 

Not sad to see you go.

Still have my Picc, but at least I'm detached.

My home for 21 days

Tiverton is housing mostly specifically for UCLA medical patient recovery.  It's nothing fancy, but it is convenient.  So I've had two nights now where I haven't been woken up for vitals in the middle of the night.  Two nights of sleeping next to Keith.  Two nights of freedom, where I've been able to walk in the open air and feel the breeze a bit.  (While masked, and sanitized, and extremely careful, of course.) 

The hard part is that I have little to do, except focus on recovery.  I am required to have a caregiver 24hours a day, and required to stay within about 15-30 minutes of the hospital in case anything happens and I need medical attention.  So, it's like we are on vacation in LA, but we are not allowed to go anywhere crowded, I still have dietary restrictions, so I must prepare most of my food myself, and we can't really go too far since traffic is always outrageous.  I have been able to walk outside some with Keith.  We try to go on less busy streets and not during peak hours, and it feels good to try to regain some of my strength. 

So, I'm still very fatigued, still having a lot of taste issues (things taste and smell gross/weird) and generally feeling slightly under the weather most of the time.  I'm 11 different oral medications that I take multiple times a day, and may still have at least one med that I need to get by infusion on a weekly basis (IVIG).  I'm on a huge dose of steroids right now (70mg per day), so I haven't lost more than a few pounds since they make me feel jittery and ravenously hungry most of the time.  They will begin to taper these down, but it's a slow process, they need to do it slowly so that I don't have any flare ups of GVHD.  Until then, at least my mouth doesn't hurt as much anymore and I can actually eat without too much discomfort.

I had my first "clinic" appointment yesterday.  Everything looked ok, including my counts, so they gave me a couple of days off, and I don't have to be seen and or have blood drawn until Sunday.  The clinic is less than half a mile from where we are staying, so I have been able to walk there (with Keith as escort) and hopefully I can continue to do so. 

Tres' Chic

So good things are happening.  Cleared to brush my teeth with a real toothbrush instead of a sponge, able to take showers again instead of baths, unhooked from my dance partner, and reunited with my real partner.  It may be some time before I am released to go home since we live so far away, but for now my quality of life has definitely been improved this week.

Day +11 Wigging Out

Date: 9.24.18
Time: 5:42pm

HGB: 9.4
PLT: 13
WBC: .88
ANC: .15

As you can see I have a few neutrophils floating around in there.  And thank goodness for them.  I've been on iv morphine every 4 hours for the past four days - the pain in my mouth and throat has been so intensive.  Eating half of a peanut butter and jelly sandwich last night felt like swallowing glass.  The neutrophils are going to help me to heal faster so that I can swallow again without immeasurable pain. 

My team of doctors are tentatively excited about these little cells.  The didn't expect to see them on the upswing for a couple of days more, at the very least.  In fact, for the past four or five days they'be been telling me that things are going to get worse before they get better.  I'm hoping they're wrong.

Doing a lot of morphine sleeping, a lot of drooling on my pillow instead of swallowing, and a lot of slouchy hipster hat wearing on my bald little head.

Before I left for the hospital a good friend let me try on all of her wigs.  The short blond is going to be my go-to.  And maybe the long blond when I want to feel a little bit country.  (Thanks Marilyn & Chris.)

Scandanavian Bob

Mad Scientist

Storm of X-Men Fame

Midlife Crisis

Texas Wife

Aside from all that, just hard at work growing cells here.

Day +7 C'est La Vie

Date: 9.20.18
Time: 7:34pm

HGB: 9.8
PLT: 23
WBC: .08
ANC: 0

I have no hair.

Cancer Style

Lex Luthor Look

It was coming out in strands when I touched it, and getting all over my bed when I slept.  It had to go.  Hopefully it doesn't take too long to come back again.

My mouth and throat are sore and peeling.  Eating, drinking, swallowing pills, hell - swallowing my own spit - hurts today. 

Making it through, regardless. 

Day +5 Still here

Date: 9.18.18
Time: 7:55pm

HGB: 10.1
PLT: 19
WBC: 0.28
ANC: 0.1

Well I'm still here.  I still have all of my hair.  I still have cable TV.  I still get my meals delivered by men in tuxedo shirts.  Tonight's entree:

Gourmet Dining

I'm beginning to get a bit of mucocitis, so eating is becoming more and more difficult.  Inside my mouth my inner cheeks are starting to peel, and my throat is starting to hurt, which makes eating and swallowing more difficult.  The smaller the bites and the mushier the food, the better right now. 

I still am keeping busy with my hall laps.  (Trying to keep up three-ish miles per day.)  This weekend I was doing my laps and in a little alcove in one hallway, I kept passing this green peanut m&m on the floor.  I started fantasizing about peanut m&ms, and how I'm on lock down, and don't have any access to peanut m&ms.  After half a dozen or so laps, I finally got closer so I could get a better look.  I don't know what I was going to do.  I certainly wasn't going to pick it up off the floor and eat it.  I think I just wanted to see the printed "M&M" on the shell up close.  Guess what?  It was a green cap like the ones they put on our tubing.  Talk about disappointment of the week.

Probably for the best that I don't go around eating floor M&Ms, as it looks like my blood sugar is elevated.  This is almost certainly due to the Herculean dosage of steroids that they currently have me on.  The steroids are yet another medication to make my body more hospitable to my new cells, and prevent any GVHD flare ups.  Hopefully I can start to taper the steroids before the blood sugar gets out of hand, and I have to start taking insulin.  When I asked about a taper, the doctors told me that won't begin happening until I am released out-patient, so I've got another probably 10-14 days to try to keep a balance.

I'm currently failing to keep a balance with my blood pressure, however, which has been trending up as well.  This is most likely due to yet another medication that they have me on called Tacrolimus.  Tacro is given as an immunosuppressant to, again, make sure that my old body and my new cells get along.  They've started me on a low dosage of blood pressure medication just tonight.  It's most likely temporary, but it's difficult to not have any control over your systems. 

Tomorrow, Day +6 is another big day.  I'll have an infusion of IVIG.  WebMD describes the need for IVIG as:

Your body's immune system normally makes enough antibodies to fight germs that cause infections. But if you have an immune deficiency, your body can't make enough of them. ... IVIg gives you antibodies that your body is not making on its own so you can fight infections.

Tomorrow is also my third dose of mexthotrexate - the "chemo light", so big day on the ol' IV pole.

So we'll see tomorrow if my WBC finally hits the magic number, which is a big zero.  Once I hit zero, the next thing that I'll be waiting for is that number to climb again, which will mean that my new cells will have found their home in my bone marrow and started to grow - a process medically referred to as "engraftment".  It's also possible that I'll need my first transfusion tomorrow.  My hemoglobin is holding steady, but it's possible that I'll need platelets, as they transfuse when your platelets drop below 10. 

Rest assured all.  I'm just doing my thing.  Controlling the things that I'm able to (mouth care, exercise, good personal hygiene) and rolling with it for the things that I can't. 

Hydration and Pee

Date: 9.8.18
Time: 8:40 am

HGB: 11.1
PLT: 112
WBC: 5.51
ANC: 3.03

So who knew that I wouldn't be able to take a shirt on or off for a month?  Oh, hey, not me.  I refuse to give in and wear the gown, so I've kinda got a Xena Warrior Princess asymmetrical thing going on, where I wiggle into my shirt by sliding it up over my hips.  I can only put my arm in one arm hole, as I am permanently hooked up to hydration full time to protect my liver and kidneys (and I have to pee like twelve times a day), and chemo every 6 hours for 2 hours at a time, so my tubes are in the way of getting fully dressed. 

Me and my dance partner

The sweatshirt is harder.  I've taken to flinging one arm across my neck like a jaunty scarf, or tucking it under my arm pit so I can wear it like a cape.  So after my daily bath (that I'm required to take) I look kinda like a cross between Snoopy and the Red Baron, and the Wild Woman from Borneo touring the halls.

I'm a fairly fast walker and I pace the halls like a caged tiger, usually in the early mornings (between 6am-7am).  They encourage you to walk the halls a lot.  13 laps is supposed to be a mile.  According to my activity tracker each lap is .08 miles - so just about right.  After a few times around I always lose track of what lap I'm on, so I've been gauging it in mileage.  Yesterday I did 5 miles total, and some light, don't touch the floor yoga stretches.  So far today, I've only done one mile, but I ain't got nothin' but time, so that'll increase.

The nurses, and one of the doctors has told me that I'm one of the only early bird patients that they have.  Thats probably because the sleep schedule here is so fucked up.  Vitals are taken every four hours, I get chemo every six, blood is drawn at 2am, and I have a variety trail mix of pills that I get to swallow everyday.  I also have people that come it to clean, to take the laundry, and to deliver meals.  I have probably gotten maybe 16 hours sleep, all together, in the three nights that I've been here if you add all of the small pieces together.  For someone that's used to getting more than eight hours a night, it's bad for my metal health.  It totally makes me a crank-o-saurus. 

Pray for my nurses.

The Countdown Begins

T - minus 12.  And so it begins.

On Wednesday, September 5th, I will be admitted to the hospital to begin my stem cell transplant conditioning therapy.  I will be having sixteen doses of intravenous Busulfan, spread over 4 days, and two days of Cytoxan.  I'm going to have a Picc line inserted into my arm on Wednesday and will start my first dose of Busulfan that night.  The transplant will take place either on September 13th, or 14th, just depending on when the cells get there.  My coordinator told us that it is a very anti-climatic event, as it is a very small bag of cells that is given like a blood transfusion.  I've had all of my pre-transplant testing, have a "perfect" match unrelated donor, and have signed all of the scary consent forms.  This is happening. 

I feel...not ready, but kinda like I should have done this years ago.  The hardest part for me will be being away from my home for two full months.  I've been told to expect to spend a month in the hospital, and then a month in temporary housing adjacent to UCLA.  For some people being in the heart of LA would be exciting.  For me, it's hell.  I'm a true mountain girl through and through, and the fact that I'm going to be missing the majority of the Fall season in the mountains makes my little heart sad. 

Fall 2017

I will suffer through, mostly because I don't really have much of a choice.  I'd much rather be home hiking our little section of the Pacific Crest Trail, watching the leaves turn, and the sage bloom, splitting and stacking firewood, and waiting for the first snow...but for this year, for this season, I will endure so that I can enjoy all of those things for many Falls to come. 

But goddamn, it's going to be hard to be away from my home and these little faces for so very long.

Paco & Beeker

Miss

Trying to get my fill of everything.  Cat love and snuggles.  Chocolate cake.  Jacuzzi's under the stars.  Watching the sun rise through my bedroom windows in the mornings.  Hiking in the evenings.  Kisses and holding hands.  Having hair...

I just keep telling myself that it's only a temporary absence.  It's the only way I'll make it through.  

Skipping Ahead

Reading back where I left off, it's hard to know where to start.

I'm going to have a stem cell transplant.  It's happening soon.  Next month.

I have not had a catastrophic loss of response to my current TKI, but it is failing.  The tests that measure my cancer are creeping up consistently, and there is no telling how long Bosulif is going to continue to work to suppress the cancer proliferating cells, and prevent them from going wild again.  I have tried and failed Gleevec (imatinib), Sprycel (dasatinib), Tasigna (nilotinib), Iclusig (ponatinib), and am now losing response to Bosulif (bosutinib).  There are no other currently approved TKI's to treat CML, so I'm left with little choice.  If I lose complete response to Bosulif, and my CML goes into Blast phase, it will significantly reduce my chances for survival.

I have been experiencing more minor infections, increased fatigue, and my FISH tests have gone from a low of 20% last October back up first to 26%, and in June, up to 29%.  That means that out of 100 cells that they looked at under a microscope, 29 of them were positive for CML.  That's nearly one in every three.  Last year, it was only one in every five, so it's a slowly-moving, yet alarming trend.  (The bcr/abl PCR test has also gone up from 3.6% to 5.6%.)

I've spent the past month or so racing around trying to prepare for a nightmare.  Trying to smooth the way.  Stocking up, cleaning up, eating up.  I don't think that you can ever be fully prepared for something like this.  I've done my best.  Most people don't even get that chance.

There are undeiable risks. I just keep trying to remember, individual results may vary.

The Median Isn't the Message

I intend to rage.

Keeping On

No news is no news.

My January appointment at UCLA came and went. My PCR ticked incrementally down from 3.7% IS in August 2017 to 3.6% IS in January.  So, not really down by leaps and bounds.  A bit disappointing progress for an additional 5 months on full dosage (500mg) bosutinub.  Progress is progress, however slow, small, or incremental it may seem; I'll take it.  I again chose to delay bone marrow transplant preparations, in favor of continuing on my current treatment.

Chose is really the optimum word there, as by choosing to forgo a transplant at this time, I am essentially going against the recommendations of my doctors.  I've found more peace with the decision, and am committed to continuing TKI treatment until or unless that option is no longer feasible (like, if my PCR starts going up.)  My UCLA doctor has not contacted me to make a follow-up appointment, so at this time there are no impending trips to Los Angeles in my foreseeable future which, quite frankly, makes me ecstatic.

I have not had another PCR test since January, but will firmly suggest/demand that my regular oncologist order one when I see him again in May.  I have had subsequent FISH test, which came back higher than the previous - which is decidedly NOT GOOD - but not yet cause for alarm.  My FISH in October 2017 came back with 20% cells positive for the BCR/ABL1 translocation.  FISH performed in March came back with 26% positive.  The lab technician noted "There is no significant change from the previous studies, when the same abnormality was observed.  This result is suggestive of persistence/recurrence of the abnormal clone."  All other blood test results were normal.

So that's how I live.  Hope for the best.  Do those things that are within my power to tip the scales in my favor.  Live life.  Try not to sweat the small stuff.  Try not to sweat the big stuff, either.  Keep on keeping on.

Happenings

"God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And wisdom to know the difference."

I'm not really a very religious person, but this has been my mantra for the past few months.  (I'm not a recovering alcoholic, either.)  Things have been going...not exactly poorly, but not nearly as well as one could have hoped.  When I was first diagnosed with CML, I was told that I was lucky because I got the "good cancer".  There is no such thing.  Cancer sucks.  It's a life sucking, soul sucking kind of suck, especially when you have the "good cancer". Having the "good cancer" essentially means that you are supposed to pretend that you don't have cancer, and go about your daily life.  It's harder than one might think.

Ignoring my cancer has been made more difficult by the fact that I've had Dr appointments every two weeks for nearly the past year.  My blood counts continue to be very low - and I've consistently had to have red blood cell transfusions approximately every six weeks.  Sprycel stopped working for me in November of 2015, as my PCR (BCR-ABL) went from 8% to 18%, and I was switched to a new drug called Tasigna.  I'm on the highest dosage recommended (800mg daily), and my Dr. had taken to calling my cancer "refractory".  (I looked it up.  It means: leukemia that does not respond to treatment.  Lovely, thanks for that.)  Speaking of Dr's, my medical group decided to "outsource" their oncology department, and I lost my Dr at the end of February.  Luckily, his replacement turned out to be the Dr. that I saw for my second opinion, so he at least had a cursory understanding of my case.  At our first appointment, he was a little shocked at how low my (blood count) numbers were, but with my platelets coming in at 47, I assured him that they were actually on the rise, as I had been hovering in the 30s for months now.

Besides my new oncologist, I also saw a "specialist" at Loma Linda in January of this year.  It took an unbelievably long time to get an appointment, and for the first 15 minutes, he thought that I had AML due to a typo on his summary sheet.  When he found out that I actually have CML - something that he would have known if he had, in fact, looked at any of my medical records that I had painstakingly collected and had sent over - he briefly reviewed my history, suggested that I move to a lower elevation, try not to have so many blood transfusions, get better health insurance, and have a bone marrow biopsy, then sent me on my way.  Three months of waiting, for that?  Really?  He must not have got the memo about the "refractory" nature of my cancer.

However, my oncologist did take his advice, and scheduled me to have a bone marrow biopsy.  I felt like I needed one, but by the time the day came, I was pretty much petrified.  Some hospitals/Dr's will put you under anesthesia for the procedure, but the practice that I am affiliated with just uses a local - lidocane.  If anyone is wondering, they lay you on your stomach, and numb you up with a couple of shots of lidocane.  The needle is pushed into your illiac crest (which is low on your back, almost down to your behind, either to the right or left.)  It takes quite a bit of pressure to get it through the bone.  They then take a bone marrow aspiration, which means that they suck some of the fluid from inside the bone.  This is the part that was the most uncomfortable.  It felt like a white hot zap was flowing through me, and out.  Like the jolt of a nerve.  Unnerving.  Next, they twist the needle around in order to take a core - a piece of the bone.  They're looking for about a cm piece, and unfortunately, my first core was insufficient, so they had to go back in and take another.  Then they bandage you up, lay you on your back to put pressure on the wound, and send you home.  Quite honestly, the anticipation was the worst part of my first bone marrow biopsy, for me.  I've had dental procedures that have been more painful.

Unfortunately, more bad news when the report finally came in.  It stated that I have a "variant" of the Philadelphia Chromosome that is resistant to therapy.  In CML, in most cases, a portion of chromosomes 9 and 22 break off and switch places.  This creates what they refer to as the "Philadelphia Chromosome".  Upon review, they found that in 85% of my cells, a small portion of chromosome 9 was lost during the switch - the deletion apparently means that the drugs that have been developed to treat CML thus far, don't work quite as well as they should for me.  This was further supported by a test that they also do which looks at 20 cells to see how many still carry the Philadelphia translocation.  Nineteen out of twenty were positive for leukemia.  So that's frustrating.  To have to endure low blood counts, and almost monthly transfusions, and STILL not be making much progress toward eradicating the leukemic cells is absolutely disheartening.  Crushing.  Devastating.

My Dr's have started slipping questions like "do you have any siblings"?  "does your sister look like you"?  "have you been HLA typed"? "has she"?  into the conversation.  (Yeah, they're none too sly.)  I haven't.  And I'm not going there yet.  Maybe Tasigna is going to kick in, and start kicking leukemia butt.  (I'm giving it another month.)  If not, then maybe Bosutinib is the one for me.  Or Pontinib.  While there is a chance that the medications are not going to work well for me, there is also a chance that one of them WILL.

And so...for now: serenity, courage, and wisdom, please be with me.