June 4, 2019

Packs a Punch.

*Course language and disgusting pictures.  Scroll with caution.*

Journal Entry #29

I just want to sleep through the next 5 days and wake up when this is all over.

This. Sucks.

It’s like my body anticipates the Miltefosine now.  I start cramping and feeling nauseous even before I take the Pepto and Gravol.  My body knows what is coming.  I guess 32 days of chemo builds up until there is no reprieve between doses…no moments of feeling okay.  Just yuck. Yuck.  And more yuk.

I have had conversations with people who experience anxiety.  I remember one telling me that they have anxiety attacks even before they go into an anxiety inducing situation.  That they have anxiety about their anxiety.

I totally get it now.

The last 24 hours have been exceptional.  And by that, I mean awful.  I am forcing myself to eat in order to take the medication, and then I am fighting myself to keep the medicine in my body.  I need the medicine to stay in my body so that it can do what it needs to do…kill these fucking bugs!  But my body wants to puke and poop it out…and so I fight, fight, fight just to keep it in.  Writhing in pain, I failed last night.  In protest, my body took over my mind and upchucked the contents of my stomach.  I fought a good fight…but I failed.

Curled in the fetal position, I just cried. 

My body is tired.  Today, I slept until 3pm.  A drug induced sleep, but I don’t care.  I wasn’t fighting in my sleep.  This afternoon and tonight, I feel like I have been hit by a Mack Truck.  There is literally a war happening inside by body…and I hope like hell the Miltefosine is stronger than these bugs and wins it!

It is hard on everyone around me to see me like this.  I am thankful that my kids didn’t see me at that worst low point last night.  I am sad that my mom and Tim saw it.  How helpless they must feel.  I know that they would take it from me if they could…but they can’t.  No one can.  They are helping keep me comfortable, encouraging me, tolerating my moaning and groaning.  I am probably an awful patient at this point.  Nothing feels good.

We’ve decided that Tim will take some time off of work – a stress leave.  He is worried and distracted by what is happening at home.  He is stressed about what I am going through – what our whole family is going through.  The kids are both having trouble navigating their emotions and are feeling the pressure of having to do more around the house and they want to look after me.  It is all overwhelming, and thankfully we have this option of Stress Leave to lean into right now.  Life doesn’t stop because I am down for the count.  The household still needs to run, the kids still need to be nurtured and fed and life has to go on.  We have to remember that they are only 11 and 12 years old.  Sure, there are chores and helpful things that they can do around the house, but they are still kids.

Leishmaniasis will not rob my kids of being kids. 

I know that this experience will make them mature in ways that other 11 and 12 years might not, and that is okay.  This life experience is preparing them for something…something in their own lives…even if we don’t know what that is…everything happens for a reason.  This has to be teaching them something valuable…it just has to…right?  Canyon admitted the other day that he is missing his friends.  Our house is usually Grand Central Station, with kids coming and going…sleepovers, playdates, craft days…but it has all come to a screeching halt.  Instead, he wants to be around in case I need him…or in case I need help.  The kids and I have been watching GLEE on Netflix together…and that is about the extent of excitement that happens around here.  But, really, doesn’t music make everyone feel better?  I am thankful that we have kids want to help me.  I am thankful that Tim has the option to be home, where he is really needed right now.

Tim and I are very keenly aware, that even in the midst of all of this stress, and the experience of Leishmaniasis, that we are modeling for the kids.  Everyone handles and copes differently, but as a mom, I am still modeling what a wife, woman and mother looks like.  Tim is modeling what a husband, father and man look like.  The choices and decisions that we are making right now, matter. They are hard decisions in the first place, but when we consider the bigger impact of what we are modeling to our children, those decisions can become very clear.  I am modeling that it is okay to ask for help, that journaling is a safe and effective way of getting through hard things, that it is important to listen to your body to know what it needs, that saying thank you always comes from the heart…I am sure I am modeling other important things too…hopefully only the good things stick.

Tim is modeling something else entirely.  He is modeling strength, compassion, care and paying it forward. He is making decisions that show family is important, that our children’s welfare matters to him, that his own mental well-being is important.  He is holding us together as the glue right now…and proving himself capable, proficient and successful.  I think that Leishmaniasis has given our family a great opportunity to redefine the roles in our household…and has revealed to us new strengths, approaches and ways of loving.  I can only hope that Canyon grows into his own man-version of Tim.  I pray, that Faith finds a partner in life that mirrors her Dad’s qualities.  But most of all, I hope that they are happy.

Both kids had smiling faces, coming home from their Track and Field Meet today.  Not because they were stellar in their events, but because Daddy was there to cheer them on.  Rarely, does Tim get to see their volleyball or basketball games, school performances, or track meets. Today, he was present for them.  And that is important.  For the kids to know that we are cheering for them and that what they do is important to us.

My mom and I had a little cheer this afternoon when we changed the bandages on the wounds.  On June 1, I started using the Medihoney on the foot wound.  It took about 5-6 hours for the burning sensation to subside when I first put it on.  As it moulds to my body and melts into the wound, it creates a barrier for healing to happen from the inside out.  It is a dressing, intended for use on both small and large wounds, has anti-viral, anti-bacterial, anti-inflammatory and antioxidant benefits.  In the first 36 hours of using the Manuka Honey we can see major improvement.  This is very exciting.  The arm wound is showing a reduction in size and new epithelial growth around the edges as well.  This progress is really good and shows that we are moving in the right direction.

Right now, I have to be done.  A headache has just hit with a hot-flash and the cramping has started. I hope I am not in for another long night.

In the grand scheme of things, this Leishmania will be a little blip. A little blip, that packs a punch.  A little blip, with huge impact.

Xo Juli

2 thoughts on “Packs a Punch.”

  1. Our family very much appreciates being able to read your posts together. Great thoughts and discussions come from them, a learning and growth experience for us all. Juli, you and Tim are wonderful and thoughtful parents and it shows in Faith and Canyon. It’s the difficult times when you can really see this I am sure. Big hugs xxoo

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