Update and a Few Papaya Details

Not a whole lot to say here, which is always nice. I saw my Hematologist for my semi-annual visit in May, and my platelets were at 199. That was a great, great day.

So, I'm just going my way at the moment, taking my papaya leaf supplements, trying to get plenty of sleep, and working of getting rid of the extra weight that I gained during my steroid days.

For any interested, these are the papaya capsules that I take. I used to get them on Amazon, but now I order them directly from the Swanson website. They run between $6-10 for a bottle of 60.

on stopping nosebleeds and other winter activities

So, a little update since I last posted:

On December 3, as I was getting ready for church, I got one of those hard-to-stop nosebleeds that make us itp'ers feel like all could be lost.

I got it stopped after about an hour, and then went up to the lab to get my blood drawn. Funny little aside, once I finished with the blood draw, I went to church as is my habit. be However, not as habit, I spent the first 40 minutes or Sunday School obsessively (and hopefully inconspicuously) checking my phone tho see if my results had been posted yet. Never done that before!

Platelets came in at 55, and so I chalked it up to dry winter air and went on my way.

A few weeks later, I had another nosebleed. Again I got the CBC done, with a result of 44. Again my doctor and I decided not to treat. I went down the visit family at Christmas, and didn't participate in any of the tubing, ice skating, or skiing options, but otherwise had a normal holiday.

In January I noticed some semi-large bruises, though no nosebleeds. My daughter started ski lessons in January, and between being semi-concerned about the bruising and wanting to know if being able to ski safely was even an option at this point, I got another CBC on January 11. Platelets were at 75!! My levels had gone UP by over 30,000 and I'd done nothing medically to treat my low platelets! I was thrilled, to say the least.

Since then, I've basically been living my life. I try to get 8 hours of sleep each night, and to decrease my stress levels by redirecting my thoughts when I start getting tied in knots over things I can't control. I have been skiing each week when my daughter has her lessons, though I am very slow and careful on those slopes. Actually, that's the way I like to ski anyway, so in some ways, it's nice to have a directive to be careful that I can fall back on.

And that's where we stand for now. I'll take it. 😃

Ducks in a Row

So, I met with my hematologist for my semi-annual exam last week. Platelets were at 73, which both he and I feel fine about. However, given the fact that sometimes my platelets will drop from the seventies to the thirties with little warning, and the fact that I've had some unsafely low-platelet occurrences within the last few months, we spent a fair amount of time talking about second-line treatments. (where steroids are considered first-line treatments).

The way I've researched it, there are basically four different potentially effective options at this point. They are:

1-Continue treating with Dexamethasone as platelets drop
2-Rituxin--an infusion chemotherapy medication that has been proven effective in some cases
3-Spleen removal surgery (splenectomy)
4-A fairly new class of kind of medications called Thrombopoietin Receptor Agonists or TPOs

I don't want to take the time or energy to go into all the ins and outs of the different options here, but there are benefits and drawbacks to each one.

In my case, my doctor and I have rejected (for now) options 2 and 4, and we are focusing on options 1 and 3.

We're considering option one because we have already seen that, while it wreaks havoc on my emotional health while I'm doing it, Dexamethasone has proven to be quite effective at restoring my platelet levels, so while neither of us are committed to it as a life-long course, we both do have a bit of a "don't fix what's not broken" mentality as it relates to this option.

We are considering option 2 because studies have shown that splenectomies tend to have a higher rate of success in treating ITP when the patient is around age 45 or younger, and whose platelet levels respond well to steroid treatment. I meet both of those criteria.

So, right now, we're "lining up our ducks" for a possible splenectomy. This week I've received pre-splenectomy immunizations, mainly pneumonia and meningitis, because apparently those are diseases that are more easily contracted and more difficult to fight off when one doesn't have a spleen. Also, my doctor (who practices about an hour away from me) is speaking with his colleagues to get a recommendation for a surgeon that practices at my local hospital and would be skilled at a splenectomy.

Once our "ducks are in a row" regarding all of this, if my levels do tank at some point, we'll have the option of deciding if we want to stay with steroids or move on to splenectomy. I really like the thought of getting all this groundwork done now, in the calm of good health, rather than later, in the heat and stress of super-thin blood.

In other news, I started taking papaya leaf capsules. I don't know that they will help, but I found an economical source for the capsules on amazon, and I thought I'd give them a try. My doctor is fine with it, and it seems, a little curious as to whether or not it will make any difference.

ITP-Breakdown of the effects of Dexamethasone on my body--DAY #10

Day #10:

Morning:
I generally consider the steroid cycle to be a 10 day affair, because historically by day 10 I always feel back to normal. I realized this the first time I did it, back in May 2016. I started the Dex on a Wednesday that time, and had signed up to run a color 5K with my daughter that next Saturday. We'd paid the money and she was looking forward to it, but I felt awful (as I've since learned that I always do on day 4 of the cycle), and it was a pretty rough day.

If you look really hard, you can see a distinct lack of twinkle in those eyes. This is a woman who is going through the motions, trying to fool her kid.

I struggled through that week as I have every time since, although this first time I had more anxiety because it was all new and I didn't know what to expect. That time (as this time) just when I thought I could endure no more, my body turned a corner and each day started to feel a little better than the last. When Saturday came around again, I felt well enough that my daughter and I took the morning and went on our annual spring hike to the wind caves, a 3.5 (one way) mile hike that gains over 1,000 feet in elevation and provides beautiful views, ample time for mother-daughter chatting, and a real sense of accomplishment.

Instagram post from that Saturday. Full caption reads: "If you would have told me last Saturday that in one week is be hiking straight up a mountain with my muffin, I would have shot you one of my patented (but rarely seen) "looks of death". But that's exactly what happened. So grateful for the way this old body of mine takes care of business."

I remember being amazed that my body, which had felt so week and frail only a week before had rebounded so completely.

I'm still amazed that my body is able to do this. I've done the Dex cycle 8 times now, and each time, it's awful and disruptive to my life and to our family "groove", and each time I feel sorry for myself that it's a part of my road. But each time, I make it out alive, and when I do, I'm more compassionate and more grateful and more humble than I was before.

I'll be honest, if I could wave a magic wand and banish ITP from my life, I'd do it so fast it would dislocate my elbow. But, the road isn't all bad, and the rewards for enduring it all feel more substantial than you often get from ordinary life. I feel like (and truly hope that) ITP is molding me into a better person than I was before, and I can't help but be grateful for that.

ITP-Breakdown of the effects of Dexamethasone on my body--DAY #9

Day #9:

Morning:
Slept well, and woke up (with alarm) around 6:45. I feel a little bit tired, but mostly normal. Appetite is normal, brain fog isn't there, sensory sensitivity isn't there. I still feel a little warm at times, and my vision hasn't returned to its normal level, but other than that, I feel like the old Charlotte that I'm used to being.

I feel good mentally and emotionally as well. It's amazing to me just how quickly things can turn around. Three days ago I was in the absolute depths of despair, and now today I'm thrilled to be able to live my life. The crisp air feels better, my daughter's laughter fills up my heart with gratitude, the simple things like eating a meal together as a family and chatting about the mundane normal things of life feel like a miracle.

I guess sometimes it truly does take the bad to truly appreciate the good.

ITP-Breakdown of the effects of Dexamethasone on my body--DAY #8

Day 8

Morning:

It's bloodwork day, also known as the day that I get my arm poked, and then spend the next two hours obsessively refreshing the myhealth.org website until my results are posted. 

I definitely feel better today than yesterday. I slept less fitfully, though I did wake up for a bit in the middle of the night with a clenched stomach (i.e.-anxiety), and I had weird dreams. Still, I feel more rested. Brain fog has decreased significantly, as has sensory over-sensitivity. I was able to listen to the radio (peppy tunes even) as I was driving to the hospital to get my blood drawn, no worries, no problems. I do feel tired, and somewhat weak, but I feel sooo much better than yesterday, and really no comparison to how I felt the day before.

Mentally and emotionally, I can see myself returning to the person that I generally am, and it's a relief to have "her" coming back. 

* * *

Results are in, and platelets are at . . . 

303!!!!!!

That's a HUGE improvement over the 19 I had a week ago, and the largest jump I think we've ever recorded. So, I'm pleased. I would love to think that this number would carry me for awhile and that steroids will be a thing in my rear view window for a good long time now, but my August steroid cycle bumped me up to 268, and within 6 weeks my ultra-efficient (and sadly confused) body had gotten me all the way back down to 19. So, I'm not making assumptions or getting hopes up to high. If there's one thing I'm learning about this ITP road, it's that it's unpredictable and I never know what this old body of mine is going to do next. 

Regardless, 303 is good news, and good news is always welcome. I'm grateful. 

ITP-Breakdown of the effects of Dexamethasone on my body--DAY #7

Day #7:

Morning/Early Afternoon:
Slept fitfully again, woke up not very rested. Hand tremors seem to be decreasing, brain fog is still there, as well as exhaustion, concern and discouragement.

When I feel lousy like this, it's so hard to remember that I'm not always going to feel like this, that this isn't my new life, that there are better days ahead. I remember when I was pregnant with my daughter, the morning sickness and the fatigue would get to me, and I would start to panic, because a part of me (a large part of me, honestly) assumed that this was my new life, and how in the world was I ever going to be able to take care of a baby if I was never going to feel good again?

Obviously, rationality is not my strong suit when I'm not feeling well. I wonder if other people feel this way too, or if I'm just the weird one who can't keep it together in the midst of trial.

I do think that my symptoms and side effects are decreased somewhat today. It's hard to tell though, because the fatigue and tiredness from the internal war zone that my body has been through the past six days carry their own difficulties. Were I not so tired, I think I would feel better. As it is, I think I feel about the same. Fortunately, I don't think that I feel worse. So, there's hope there.

Afternoon/Evening:

I think I've turned the corner. Thank Heaven! Sensory sensitivity is still there, but I was able to listen to my daughter practicing the piano without wanting to climb the walls, and I could carry on conversations, even animated ones (not ones where I was animated, but ones where others were) without feeling like I was going crazy. Probably not coincidentally, my mental outlook has improved considerably. Whereas this morning my life stretched out before me as one endless trip to the rock pile, now I feel like there actually might be some joy and happiness to be found along the way.

If history holds, the trick now is to enjoy each step back to health as it comes, not trying to do too much too soon, and being grateful that I'm able to ease back into life, rather than impatient that I can't jump right back in with both feet.

Truth be told, having ITP has given me the opportunity (however unwelcome it may be) to learn quite a few life lessons. Surely those lessons are molding me into a more well-rounded person, right? That's not too much to hope for, right?

ITP-Breakdown of the effects of Dexamethasone on my body--DAY #6

Day #6

Historically day 6 is the worst day of the cycle. I'm hoping that is the case this time as well, because I'm not at all excited about feeling any worse than I do right now.

I went to ward council (I'm currently the Relief Society President in my ward), then came home, had some breakfast, and went to church. I only stayed through Sacrament meeting, then came home and went to sleep. Woke up around 2:30 when Eric and our daughter came home. Watched Harry Potter (our October Sunday tradition), and now I'm back in the bedroom, door closed, sequestered in the quiet. The sensory sensitivity is much much worse today.

Today I feel fragile, and exhausted, and very very discouraged, maybe even depressed. But experience has taught me that this is all temporary, and it will turn around soon. The trick is just to hold on until it does.

The love that has come to our family by way of good wishes, and food, and little pick me ups has been so humbling and so kind. It's truly a blessing to know of the love that surrounds me. Difficulties notwithstanding, I'm a blessed girl.

ITP-Breakdown of the effects of Dexamethasone on my body--DAY #5

Day #5

Morning:

No Dex today. Today I turn back the other way on the road to being off steroids again. If I felt better, I'm sure I'd be overjoyed. As it is, I'm pleased and tentatively hopeful.

Got to sleep around 11, slept kind of fitfully, woke up around 7:30. Hand tremors (those often seem to be worse in the morning). Also kind of thirsty. Laid in bed for an hour, surfing the web and other mindless things. I feel a general sense of anxiety in the background about any number of things, most of which are completely out of my control. My inclination is to dig in mentally, come up with a plan or plans to make things better with what I can control, but experience has taught me that this is the absolutely wrong time to do that. Patience is key right now. Patience and trust and faith.

Before we knew that I'd be on steroids this week, Eric and I had planned to attend the temple today. We'll be playing that by ear, but if I find I have the energy, I'd like to go there and feel that peace. We'll see what the day brings I guess.

Afternoon/Evening:

Didn't make it to the temple. Didn't really make it too far off the couch. I'm ultra sensitive to sensory things, much more than yesterday. Fortunately, Eric took Heather out to the Fall festival today, so I got a few hours of being blissfully alone and quiet.

This was a hard day, but made much easier by the fact that I was able to lay low.

ITP-Breakdown of the effects of Dexamethasone on my body--DAY #4

Day #4

Last day of meds. Thank Heaven!!

Morning: 

Considering that it's meds week, I slept pretty well, got to sleep shortly after 10, and slept until 8. Had some weird dreams, but that's nothing new for a Dex week. I'm still feeling shaky, hotter than usual, more easily annoyed (the dab of toothpaste that someone had left smeared on the bathroom counter this morning was particularly galling--see what I mean about how I'm unreasonable on steroids?), and more prone to discouragement than I usually am. The brain fog is definitely there, and my vision is more blurry than it is when I'm not on meds. All normal-for-me reactions.

Last night after I wrote that ending paragraph, I had a nice hug/cry with Eric (he did the hugging, I did the crying), and then went upstairs to bed. Before I got in bed, I knelt down by my bed for my nightly prayers, and Heavenly Father and I had a little chat about how all this is going. This round is harder for me than usual, and in thinking about it (admittedly, a dangerous thing to do when my judgement is compromised as I know it is now), I think it's because for the first time since the beginning, I don't have the hope that I used to have. When I started this journey, once the initial bad news came (that I had a platelet level of 2), it was almost all good news from there. My body responded well to the hospital IVs, and then again to oral Prednisone. Then, a few months later I relapsed (which was admittedly discouraging), but I was soon put in contact with an excellent hematologist and we started what was to be a 6-month round of Dexamethasone. I tolerated that relatively well (no small thing, from what I've heard), and my platelets responded admirably. Studies had shown that of those people who are able to endure a 6 month course of this treatment, the average amount of "remission" (by which we mean counts that are high enough to not require treatment, not counts that are normal) runs about 15 months. Sadly, I only got 8 months.

In August, when I got back on the Dex, my body responded exceptionally well, and I was hopeful (perhaps naively so) that I would get another nice long break, that this dropping was due to some rather severe bouts of stress that I'd been enduring over the summer. I picked back up on my yoga practice, adopted other strategies to better deal with stress, and hoped for the best. 

But, with this drop again, just a little over a month after the last drop, my doctor is intimating that it might be time to look at second-line treatments. Taking high doses of steroids as I do so frequently can cause a whole host of other issues in the body, making so the patient can easily get into a situation where the cure is worse than that disease. Second-line treatments are significantly more expensive than first-line treatments, and that concerns me quite a bit, not to mention the apprehension that comes from something new with new side effects, etc. 

So, as much as I try to push all this away and tell myself that it serves nothing to worry about it until we have more information and until I'm in a better frame of mind, it's a tough thing to do, and I don't succeed at it as often as I'd like.

As I laid all this out in my prayer last night, A song came to my mind, a song that I learned in voice lessons back in my college days. It's called "In My Father's House are Many Mansions", and it follows the text of John chapter 14, starting out, "Peace I leave with you, my peace I give unto you. Not as the world giveth give I unto you. Let not your heart be troubled, neither let it be afraid."  As I explored that idea a bit in my mind, one word came to me rather strongly. It was trust. I felt (and feel) that I need to focus my energies (what little energies I have right now) on trust. Trust in the Lord, trust that He knows the end from the beginning, trust that He loves me and is with me and with Him all will be as it should be. 

I felt peace then, and went to sleep. 

Now, to get through another day. It may be tough, and then tomorrow and the next will probably be tougher as my body adjusts to the shock of not getting the huge amounts of meds that it's had, but then it should adjust, and each day should start to get a little better than that day before. I've cleared my schedule today, so after I get done with work, I should be able to rest as much as need be. Also, a dear friend is bringing us dinner tonight--so the likelihood of me eating chocolate chips on the couch again is pretty low. Always a good thing!

Afternoon/Evening:
I left work a little bit early today because I felt so poorly. Came home and took my usual place on the couch, crochet hook in hand. I was able to do a better job this time of keeping my fears under control and keeping my mind from wandering into the paths of "what ifs" and discouragement. Also, I didn't have as bad of a case of the munchies today as yesterday.

I'm noticing an increase in the sensory over-sensitivity that always comes to me with steroids. Any touches, noises, jesting, playing, all kinds of things have been difficult for me today. I've tried to get by with deep breaths and taking my mind away from it all, and I've been mostly successful I think.

So, all in all, a better day today than yesterday. Physically I've felt worse, but mentally and emotionally, I think I've done better. That's no small thing, and I'm grateful for it.

ITP-Breakdown of the effects of Dexamethasone on my body--DAY #3

Day #3

Morning:
Once again, got to sleep around midnight. I generally take a Unisom around 8 or 9 in the evening, which will often get me tired enough to actually sleep (rather than lying in bed with my eyes wide open) around 10. But last night that wasn't the case. Oh well, there are lots of little changes on this road, you never know exactly what you are going to get. Once I did get to sleep, I slept mostly well, and didn't wake up until my alarm went off at 8:00 (I purposely set it late once I realized that I wasn't going to get to sleep until late). Took my meds, drank a kefir peach smoothie, and started moving around and getting ready for work.

I'm definitely moving slower today, having a harder time focusing. As I was reading my scriptures, I only read a few verses until I set them down because I was having a hard time concentrating. Similarly, while driving to work, I turned off the book on CD that I'm listening to, because it felt too distracting. I'm also having hand tremors, a bit of congestion in my nose, and a case of the munchies. My impatience with people and situations (that are surely much more innocuous than they seem to me right now) is continuing and worsening, so I'm just trying to keep my mouth shut, and remind myself that everything will look better in a week or so and not to do anything stupid now while I'm viewing life through "steroid eyes."On the bright side, my emotions seem to be more in check today, I'm not tearing up at things. So, that's a welcome development.

I must say, I'm grateful to have been through this process enough times so that I have a feel for what it all entails and what to expect. It helps me not to blow things out of proportion or get feeling too sorry for myself, and it helps me to remember that it will pass, and that this isn't the way my life is going to be day after day forever and ever, that sometimes I will have to fight, and sometimes I will get breaks from fighting. All very encouraging aspects of this condition.

Afternoon/Evening:
The day got harder as it wore on. I skipped karate and my weight meeting, went to parent teacher conference (where I learned that my kid is A ROCK STAR!!!!), went visiting teaching (which was calming and helpful), had my hubby take our daughter to karate while I sat on the couch and ate chocolate chips, (the dinner of champions) and half-heartedly watched "Call the Midwife" while stewing over some things that had happened during the day. Definitely a few poor choices there at the end, but sadly, not all that out of the ordinary on steroid day 3,4,5, or 6. 

This too shall pass. I know it will pass.