Tag Archives: side-effects

Sometimes you’re the windshield…

Hello again all! It’s Jess, back in front of the keyboard. Momma did so well with her updates, I’m grateful that she helped document the process. I’m not sure what good drugs I was on I was thinking that I was going to be able to do it, I just had no energy to update you properly myself.

Last she posted, I was out of the hospital for the second time, and going to the BMT clinic on Oct 5th.

October 6th, 2016 (Day +13) to October 16, 2016 (Day +23)

A belated happy thanksgiving to you all!  I have so much to be thankful for, not least of which are all the wonderful, thoughtful people in my life. This experience has been made tolerable by the lovely surprises and great support I have received in recent days. Thank you. Thank you. Thank you.

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Me and sis. You may notice that my right eye looks weird, I burst a blood vessel, adding to the overall loveliness I got going on right now. *wink*

Both Daddio, and the Sister were in town for thanksgiving and it was awesome to see them. Daddio even came to the BMT clinic one day so that he could see where I was spending so.much.time.

Fall is in full swing, and we’ve had some beautiful autumn days. Momma has done her best to encourage me to get some fresh air every day, and I’ve even been out for a couple of short strolls.

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Mom and I took a short stroll at Hog’s Back park.

Over the last 10 days, my time has been spent between home and the BMT clinic. I’m pleased to say that I haven’t had another admission to hospital since our last post.

As you may recall, I started out by having an appointment every day at the BMT clinic (day hospital), then it became every other day.  On October 9th, I was officially “discharged” from the hospital. This means that, I will no longer have appointments on 5 West, as part of the day hospital, and if I need to be readmitted I have to go through the emergency department like everyone else – they are no longer holding a bed for me.  It also means I will start to be seen once a week in the BMT clinic in Module L, at the hospital. (Much more like a doctor’s office than a hospital room.)

On October 11th, I had my first “post-transplant” appointment in Module L. Nothing significant to report. They do blood work at these clinics but we don’t have to wait around for the results anymore, and we were told that they would call if there was something urgent. So, no news, is good news.

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A work of art by mom. So.many.pills.

The song lyrics for how I’ve been feeling these last 10 days are: “Sometimes you’re the windshield, sometimes you’re the bug.” I have good days, and bad. Some days I have energy, some days I sleep most of the day.  I’ve been struggling with nausea, but the doctor changed my anti-emetics from “as needed”to several times a day.  It seems that that has taken the edge off of the nausea. The doctors assure us that all of this is normal.

Another common side effect – poor appetite. Although I’m not nauseous, my appetite is pretty much nonexistent. I’m mostly eating soup, jello, toast, and crackers and cheese. Everything tastes strange, and NOT in a good way. I wouldn’t call it metallic so much as bitter.

One other side effect that I’ll mention that’s popped up, is hyper-pigmentation. Busulfan causes this, and it’s under my arms, and in the creases where my body meets my legs. We were told it would happen, and that it would resolve itself.

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*!%*# Could a girl get some sleep, already … *!%*#

September 29th, 2016 (Day +6)

The feeding tube was taken out today because, although it eliminated much of the pain on eating/drinking, it was adding to Jess’ throat irritation.

Her pain is much better controlled with the Fentanyl pump. Even with all the scheduled meds she is on for nausea there is still breakthrough and maxeran helps with that. Diarrhea has been a problem as well, I suspect because of all the fluids and no solid food to speak of.

She was able to have a shower and we played a game of Skip Bo. Even under the slight influence of narcotics, she beat me!

September 30th, 2016 (Day +7)

I can tell the pain is better controlled because Jess has asked me to bring jello, mashed potatoes, baby food (fruit), and .. wait for it ..steamed broccoli!  We’ll see how much of it she actually eats but that she is fancying it is a step forward.

Little bit of urinary incontinence today (that’s exciting!) and she’s exhausted. The care is excellent but the CONSTANT vital checks, starting/stopping IV drips, pumps alarming, doctor, physio, pain doc visits not to mention having to get up, unplug all the pumps to pee every 30 minutes then plug back in and get back into bed there is very little opportunity for meaningful, rejuvenating sleep.

Tongue in cheek, she was looking forward to losing a bit of weight through all this; so far, she has gained about 2 kg while eating only nibbles for seven days now. I suspect it’s fluid.

Because her platelets are low she is bruised all over, has been having nosebleeds, and has a big broken blood vessel in her eye that kinda makes her look like she’s been in a fight … which I guess, metaphorically, she has for a long time now.

October 1st, 2016 (Day +8)

The great news is that Jess now has some white blood cells to speak of !!!!!!!! She seemed to have bottomed out at <0.02. The doc was ecstatic today when he came in because she’s at 0.1! Definitely going in the right direction … com’on new immune system … you can do it! I believe in you! You can be anything you want to be when you grow up, even a new Jess!

Jess had a mostly sleepless night because of some of many of the interruptions mentioned previously. Her legs and feet are very swollen from the copious IV fluids. This morning the doc halved her IV hydration because she is taking in more water/ice/Ensure by mouth now so she should see some relief from the constant bathroom runs and lower leg swelling over the next 24 hours or so.

She received a bag of platelets earlier this afternoon.

Mama bear that I am, her room has been prepared for sleep (shades down, check; white noise on, check; sign on the door that says “quiet please … she finally sleeps”, check) and I’m sitting guard. No one is disturbing her unless it’s imperative and they get past me … we are now one hour into a lovely nap.

This post has not been reviewed by Jess; she would never have let me tell you about the urinary incontinence or the diet plan 😉