May 15, 2019

Stupid. Stupid. Stupid.

Journal Entry #16

Today is day 13 of taking the Miltefosine.  It seems that each day comes with more fatigue than the last.  I guess that is the compound effect of chemo. It builds in your system to do its work.

Yesterday found Tim and I down to Toronto General for a check up and check in.  This time we drove to Vaughn Metropolitan Center and took the subway into UHN.  It was slick and easy…but a ton of stairs!  It seems silly that I get so winded and tired and have to rest between floors, but I do.  Going wasn’t so bad…I was fresh to start the day, but coming home was brutal!

The wait times yesterday were very long.  Maybe they were trying to get more patients in before the long weekend?  My appointment was for 11:30 but I didn’t get called in until after 1 to see Dr. Bogglid. Tropical Disease is a teaching unit, so typically I see a fourth year dermatological student first to do vitals, assess, measure the ulcers and answer questions before Dr. Bogglid comes in…which wasn’t until 2:30.

There hasn’t been any change in the ulcers, not that she expected any at this point.  She explained that the foot is the hardest and longest to heal with this particular tropical disease and that it is important to keep the foot elevated above heart level for no less than 6 hours a day.  That will help promote circulation and drainage of inflammation from the foot and ankle.  We can track the pain along the inside of the ankle into the lower leg…almost like a root. I show no signs of cellulitis, (this is a good thing) it is because the bugs have infiltrated the lymphatic vessels that I can feel it so far up and away from the wound.  What does that mean?  They are likely eating internally the same way they are eating externally.

The pain in the foot has been intense and consistent for the last several days.  I had been using a CBD oil to help manage the pain, but it wasn’t quite strong enough to take the pain away, just dull it.  Tylenol and Advil don’t seem to touch the pain either – neither of which are good for my liver while I am on the toxic Miltefosine.  I have found a blend of Cannabis (a Hybrid Sativa/Indica TCH 8% and CBD 12%) and have started vaping over the last 5 or 6 days.  I simply CANNOT believe the relief I am getting. Until I had NO PAIN after vaping, I didn’t realize how much or how long I had been living with it.  It allows me pain free moments in the day and quality periods of rest.  It seems to last between 2-3 hours at a time.  The doctor and I are really encouraged to know there is something that provides relief.

She prescribed Ondansetron, an alternative to Gravol, mostly prescribed to Chemotherapy and Radiation patients.  My gut is not tolerating the Miltefosine, which is why the toilet has been such a good friend lately.  This medication doesn’t cause as much drowsiness either, so I am hopeful that it makes a difference for my gut.

Dr. Bogglid filled out all of our insurance paperwork too and we are hopeful to get that filed asap.  It will be helpful to know if our drug company will make an exception and cover the medication. They originally told us not to hold our breath, that coverage is unlikely, but one can hope.

She ordered the weekly blood work and urine samples to monitor my organs and immune system and how it is tolerating the Miltefosine.  We use the lab at UHN as she gets the results almost immediately.  We made our way to the lab at 3pm and at 4pm we stopped at the food court for a (very) late lunch before the rush hour subway ride home.

As we waited to see the Doctor, the woman next to me noticed that the bandage and weeping wound on my foot looked like the ones she had on her leg.  Turns out, we both were on day 12 of Miltefosine for Leishmania.  She contracted the disease through sand flies in Costa Rica in early February, where as I contracted them through sand fleas in Belize on Christmas Day.  She showed me one of hers on her leg, that appears to be about the size of the one on my arm.  Her situation is not as progressed as mine and she also had an earlier intervention. She lives in the city, and upon first notice that something was wrong, went to EMERGE at Toronto General, who referred her immediately to Dr. Bogglid within 2 days.  I doctored locally in Port Perry and Oshawa for 2 months before landing in Dr. Bogglid’s office.  We both are suffering the similar side effects of the Miltefosine and she too is unable to work due to the treatment.  Because of the location of her wounds (on her legs and shoulder) I would imagine that she will be back to work once she is feeling better.  Her children are all grown and live on their own so our home lives are different too.  She has also started vaping this week and has found great relief of pain and she said it is helping with her nausea too.  For this being an uncommon condition that doesn’t happen very often in the developed world, there was a rare comfort in chatting with her yesterday.  I didn’t feel so alone in the wilderness.

Sometimes, I have this complete wave of stupidity that comes over me.

I mean, before I go to do Mission Work, I do the full round of inoculations, travel preparations for my health and double check to be sure tetanus and Hep. B are up to date.  Even in preparation for Guatemala in April, I did a vaccine for Typhoid Fever, the Dukerol for tummy bugs, and took the anti-malarial medication. Why then, when we went to Belize (it borders Guatemala) was my mindset so different??? Why, when I travel for vacation, do I not think of these things???

Stupid. Stupid. Stupid.

Since I am being honest here, I will note that both Tim and I always keep current with our general vaccinations for travel, and our children are up to date with what is required here in Canada. We took our children not only to Belize at Christmas, but Costa Rica last winter, and Mexico the winter before…completely unprotected for that area of the world.

Stupid. Stupid. Stupid.

Why do I think so differently when I travel for pleasure? Travel is travel.  I am vulnerable to whatever those countries offer, every time I travel.  Not just for Mission.  I know, I am in more susceptible areas, but really…I was on a beautiful beach when I was bit by sand fleas.  Disease and parasites don’t care if I am at a 5 star resort or in an impoverished community. Disease lurks everywhere and I have simply been foolish to not protect myself and my family each and every time we have travelled. It makes me sick when I think of it.  I can’t imagine what I would be feeling if one of my children were going through what I am going through.  OR if one of them would have contracted something that was completely preventable by proper travel preparation.  I can’t imagine.

In all fairness, every doctor I have seen, has said that there is NO prevention for Leishmania.

We will never travel blindly again.  Now that I know what lurks in the world, I will travel prepared in the future…and so will my children.

I hope you do too.

Xo Juli

1 thought on “Stupid. Stupid. Stupid.”

  1. I spoke with someone this week who travel alot to resorts. They said they had gotten bit by sand fleas only in Belize and will not go back. Someone else said it was on the news that an 18 year old got some type of parasite from the beach in Carolina and died. A customer brought up a post of an 8 month old baby who had wounds that looked similar to yours from head to toe. They were on route to different hospital for answers. She sent them message to ask if they should consider a sand flea parasite.?? They were in the Carolinas too. I am thinking this could be a more common issue than any of us could be aware of. ??
    Am sooo hoping for you to get some healing soon. Glad at least you found some pain relief! You will have to pass on the type of vape for others to use for pain relief. I know several MS patients who may be interested in this.
    Hang strong Juli!!

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