Nearly Done

Well, as planned, Heather got her 3:00 and 11:00 doses yesterday. The side effects are really ramping up, as is her misery along with them. 

I've always thought of taking a person's blood pressure as a non-invasive procedure, but the continual BPs since we have been here are really starting to take their toll on poor Heather's left bicep. For the last several days, fluid has been weeping out of her upper arm. Over the last 24 hours, she has developed abrasions along her bicep, that are very painful to the touch, let alone, the squeeze of the BP cuff. The nurses started taking her blood pressure on her forearm instead which worked for awhile, but she has now developed a rapid heart rate and they need to be sure that they are getting accurate blood pressures, so back to the bicep :( 

After reading that I'm sure everyone is wondering how she is doing with her IL-2 doses.... She received her 9th, 10th, and 11th doses yesterday.  Throughout the night, the nurses were able to get the dose of the BP medication down to near zero, but then, at around 4:00 this AM, her BP began to drop again. Her BP got low enough that they had to bump the BP med up to a point where they did not want to give her her 7:00 AM IL-2 dose. So dose #12 missed. 

It's 2:15 PM right now, and I can say with near certainty that she will not get her 3:00 dose. Heather has come up with a new twist for the doctors to sort through. Her heart rate sped up at about 11:30 to 190 beats per minute. Way too fast. They have been trying to figure out exactly why ever since. First thought was that she was just low on fluids, but she proved that wasn't the case after she got a bunch of IV fluids and her heart rate only slowed to 160. Next try, drugs... This does appear to be working, her HR has slowed to about 100, but is irregular. Something that may have to be fixed later, but she may convert to a regular rhythm on her own. 

The good news is that as I am typing this, I can hear her softly snoring in the background. She is tough!!!  She has told me several times that this is the hardest thing she has ever had to do.  I believe it, but she is doing great. Like I said, she will miss her 3:00 dose, but if the doctors give her the green light for the 11:00 dose, she will be happy to do it. 

Then on to recovering from this round and hopefully back home soon...

No One is Perfect....

She missed a dose... I know, hard to believe, but we knew it would happen eventually. She ended up missing her 11:00 dose last night. It was actually met with minimal protest from Heather.  Mainly due to the complete exhaustion that she is feeling. The dose of the pressor drug was up to 1.9 mcg/kg/min. They typically won't give the IL-2 dose if a patient is receiving more than 1.0 mcg/kg/min of the pressor, because 2.0 mcg/kg/min is the max dose they can give, so with Heather at 1.9, they don't have much room to move if her blood pressure drops more. 

She ended up picking a good time to let her BP get low and miss a dose, because she had 9 hours to recover before her next dose (thank you daylight savings). The nurses were able to get her dose of the pressor down to 1.0 mcg/kg/min by the time her next dose was due at 7:00 this morning. 

So, she is back on schedule!!  She received the 7:00 dose, and right now, she is only on 0.4 mcg/kg/min of the pressor, so she will be receiving her next dose of IL-2 at 3:00. That will be her 10th dose of this round with only 4 doses to go.  

The side effects are really starting to kick in.  She slept right through that riveting Seahawks game :) Sleep is the best thing for her right now. Not only will it help her body recover, but she doesn't have to be awake for all of the misery that this drug brings along with it. 

Keep sending all the good thoughts... 

Thanks... Kelly

Less Itchy, but....

Heather's itchiness has either subsided, or she is simply becoming too exhausted to care. She just had her 7th dose at about 3:30. She almost didn't get it though.  She is back on the pressor medication that she needed to support her BP last time, and the nurse was just able to get the dose down low enough that the doctors would allow her to receive another dose of the IL-2. 

The thought of having to miss a dose was vey distressing to Heather. She is set on, once again, getting all 14 doses. The doctors and nurses were amazed on our first trip down here that she got all 14. She has been told by everyone, including me, that she will very likely have to skip a dose or two on this trip down. She plans on proving everyone wrong :) If she does have to skip a dose, it will not be because she has decided that she does not want any more of this evil stuff pumped into her veins, but rather because her BP is way too low. It will be met with much protest and resistance from Heather!!  

I have spent most of the afternoon doing laundry.  I have already stated that we are so fortunate to be surrounded by such a great support group, but today, sitting in the "family room" here waiting for the world's slowest dryer to do what it is supposed to do, I realized just how fortunate we are to live in the part of the country, and even part of the world we do.  I talked to several families and I was the only person from Washington state. People come from all over the country and world to receive treatment from a facility that is right in our back yard!!!  One family had been bounced from The University of California, to The Mayo Clinic, to Stanford, then Stanford said, "We could do you your treatment here, but we are not very good at it.... You need to go to the University of Washington." Go Huskies!!!!

Thanks so much everyone, I will keep you posted the next few days until Heather regains control of her fingers again and you will actually be able to understand what she types :)

Kelly

Itchiness is the new water boarding

Last night's  dose,went pretty well, all the anticipated reactions, but the meds helped me through  the night well. I actually got a pretty good night's sleep.

My major issue to day is itchiness.  I think we have tried everything i.e  sarna lotion, Benadryl, clonazepam, Ativan ,hydroxyzine and finally demorol.

Guess what, still super itchy, -Argh

I got some visitors today, which is always nice;)

Back in the saddle!

Got a call this morning at 8 letting us know a room was available.  So, up and in the shower and on the road we go.  

We got to the hospital about 9, got into our room, met the PA. After going over my history with the nurse and PA I had to have a chest X-ray to assesses my PICC (even though I did this yesterday). No surprise,  PICC looks good.  


There was an issue with the dosage of my IL 2, so new orders had to be written and messenger from SCCA to UWMC. This ended up delaying my first dose until 3. This actually works out ok as far as scheduling goes, my doses will be at 3 pm, 11 pm and 7 am.  

My blood pressure has started higher than last time. That may be helpful, for a little while. I thought I would slide through the first day,however, similar to how the last round ended, about 4 hours after my dose I got extremely nauseated, chilled and just yucky feeling.  It lasted a couple of hours, but seems like forever.  Next dose at 11. We'll see how it goes:)

Minor setback

Well, we spent most of the day shuffling from one place to another. First the SCCA for bloodwork, then the SCCA to meet with the oncologist. Then to UWMC to assess my PICC, which was out of place, but now fixed. It is 2:00 at this time. I was scheduled to be admitted at 1:00. No rooms ready. "No rooms ready for hours". So we wait in the lobby. At 5:00 we got word that no beds will be ready until tomorrow, maybe?

So, good thing there are lots of hotels nearby, and we have a lot of Starwood points. Going to try and have fun, and get a good night's sleep. Cross your fingers that a bed is available for me tomorrow;

Last night of freedom, for a while anyway

All packed and ready for round 2. I am feeling alright. My skin is terribly itchy, fingers and toes are peeling. I have almost lost all of the water weight that I gained. Just in time right?

In a strange way, I am excited to go. I kind of know what to expect, although, my body could respond differently this time.

In a week I will be finished with my IL 2 treatment. My PICC line will be removed, and I can really start recovering. Sounds pretty awesome!

Tomorrow I start with blood work at SCCA, then I meet with my oncologist, then I am scheduled to be admitted to the UW at 1:00. I'm going for all 14 again!

Before my first infusion, they will have to check my PICC line, as we think it may have moved. If it has, I am not excited about 'fixing' it. Maybe they'll give me some versed just for that?

I am excited about sleeping in my bed tonight!!

Until next time....