Hola!

We have been in Mexico for a few days with our friends. We have been having a nice time. The wearther is wonderful. The best part is probably that I have been up and moving around. Truthfully, if I didn't have this planned, I might still be laying on the couch. I wasn't so sure I was going to make it on our travel day. That wore me out! I have been feeling pretty good. My feet and ankles are my biggest problem. They have gotten much better over the last couple of days but they are still swollen and it is difficult for me to stand or walk for any distance or any period of time. I can now actually see my ankle bones... yeah! I have been having a difficult time sleeping. The quiet time is when I worry about anything and everything. Clonazepam does not help, at all!! I remember bits and pieces from the last month, so I apologize for forgetting all of the things I have forgotten. The last month is really a blur.
Again, I want to thank all of you that have been supporting me throughout this experience. Kelly and I have felt so fortunate to have such great friends that come to our aid in so many ways during this time. We love you:)
Have a happy Thanksgiving!!

Waiting for that day

It has been 5 days since I got home from the hospital and I am still exhausted. I am no longer peeling but I have a red,bumpy rash all over that is making me crazy. I have lost 40 of the 50 pounds that I gained. Still have lots of swelling in my ankles and feet. I am so tired. Today I slept unil 3pm.

We are leaving for Mexico on Friday. I am trying to get excited, but I'm so tired.

We are so thankful for our friends and family. We haven't had to worry about a thing during this time. We continue to be amazed by by all of you. We cannot thank you enough!

Normalizing

Heather is feeling better and better. She got another good night's sleep last night and woke up with a bit more energy than yesterday. She was able to expend that energy quickly though. A shower and a trip to the lab for more inaccupuncture. They dug around in her arm a bit and said that she should go home and try to hydrate so they could find a vein.

When she got home from the blood draw attempt, she was pretty well wiped out. She spent the afternoon on the couch drinking water and thinking big vein thoughts. Right now, her dad has taken her back to the lab to give them another shot (pun not intended).

Other than the blood draw attempts, her recovery continues nicely. As I said, it doesn't take much to tucker her out. Her skin is looking better, the skin box is nearly full... Her coordination is improving and her appetite is coming back, which is good because as many of you know we are getting delicious meals dropped off every night and I am going to need her to step up and start doing her part, otherwise I'm going to have to dig out my big boy pants to accommodate my expanding waistline :)

Hopefully by the time you are reading this, Heather is back home, relaxing after a successful blood draw. If not, we will let the vultures go at her again tomorrow...

Home Sweet Home!!!

Well, the cardiologist did not walk through the door, but the next best thing happened shortly after the last post. The nurse practitioner came in and said that he was able to talk to the cardiologist, who sent his apologies for keeping us waiting, and they had decided that we could go!!!! Not quite how we planned on spending 5 hours, but it wouldn't have been much different at home, except we would have been at home.

So, we left the hospital at about 3:30. Just in time for a ridiculous amount of non-work day traffic. It took us about two an a half hours to get from the UW to our house. But we made it.

Heather was desperate to take a bath and try to get all of her flaky skin off. Straight upstairs, to the bath and then to bed. The day had taken it's toll on her. She napped for a bit then came downstairs and was able to eat a little tortilla soup.

Not long after that, she was wiped out again. It was pretty tough for her to get into our high bed after her bath, so we decided that the best place for her to sleep was the couch downstairs. She was fast asleep by abut 9:00 last night and did not move until about 9:00 this morning!!! Much needed uninterrupted sleep.

When she woke up, she looked and felt great!! It still doesn't take much to wear her out. She went upstairs after some coffee and took a shower, then straight to bed. Post nap, she was able to come downstairs eat some food and go through some mail.

She is definitely on the road to recovery. Her skin is looking better and she is moving around much better. She still has a long way to go, but is pointed in the right direction...

Done... ish

Well, we are finally going home, we think. Heather got some sleep last night, and woke up feeling better this AM. She was able to get up, take a shower and even blow-dry her hair. 

Not long after she was done showering, the "team" came by and said they were impressed by how much better she looked today. Time to go home!!! 

Kind of... That was at about 9:00 this AM. It's 2:00 now and the bags are packed, heather is dressed, and we are still sitting in the room. The old hurry up and wait. Her heart rate has continued ticking along at about 120 beats per minute. Not terribly fast, but faster than it should be. So the cardiologist that was contacted thought he should come by for a consult. 

Not a bad idea, we thought when we assumed that he would be by in the next hour or so. It's now been 5 hours. 

Heather wouldn't be doing much different at home than she is doing here - laying down, recovering - but now that she has the energy to make the trip and has been told she could go, she would much rather be doing a whole lot of nothing there. 

Keeping our fingers crossed that the cardiologist is about to walk through the door...

Not yet, but soon.

Heather's recovery remains slow, but steady. If she was the tortoise that won last time, this time she is the tortoise that showed that tortoise how to do things. 

It was a little bit of a rough night.  Since she completed the early removal of her PICC line the other night, blood draws have become a bit more problematic and tortuous. She usually has pretty good veins, but now they are buried under a bunch of extra-cellular fluid and everyone is having difficulty finding them. Not for lack of trying. She is beginning to feel like they are attempting to cure her with the worst acupuncture ever. 

Today the morning visit by the "team" included the advice that she stay here one more night. I had a pretty good idea that this was going to be the case.  Heather took the news well.  We are both anxious to get home, but she is just not ready. Still moving pretty slow, but was able to sit in the shower and rinse off. The shower again pretty much wiped her out. 

The nurse practitioner just popped his head in and felt that Heather is looking much better than when he saw her earlier today. He felt optimistic that she will be able to get out of here tomorrow morning. Time will tell.  

Heather's spirits are on the up-swing. She has cracked a couple of smiles this afternoon along with a couple of jokes. Her skin is peeling so much and she has accumulated such an impressive collection of skin for the skin box that Goldmember himself would be jealous!!

Here's to going home tomorrow.... (we hope!!)

Still here...

Heather's recovery this time is much slower than last time. Side effects were a little worse this time as well.  She really wants to go home, but is not ready. She can't get out of or back into bed without quite a bit of help, and a trip to the bathroom (about 10 feet round trip) completely saps her energy. 

She has been moved to what is called "floor care." This does not require continual monitoring of her vitals, which is really nice because her skin really took a beating this time, especially both biceps where the BP cuff has been.  We actually moved rooms today, so at least we have a different view.  It's also a quieter room, we are away from the noise of all the other patient's monitors. 

We hopefully will be going home tomorrow. Right now I'm not sure that will happen. She just completed a bathroom trip and is exhausted and unconscious.  Rest Heather.....

There's no place like home....

Nearly There

Well, as I thought, she did not get her 3:00 dose yesterday, and because of the rapid and then irregular heart rate, they decided that they were not going to give her the 11:00 dose either. 

So.... She is done!!!  10/14 doses completed this time down. For a total of 24/28 doses between the two trips to the UW. She is worn out!  

She slept pretty good last night, up until about 2:30 in the morning, when I heard her monitor dinging because she had pulled an electrode or two off.  I got up to fix it, and while I was placing new electrodes, I noticed a purple string laying on her bed by her pillow. "What could this be?" I wondered. Turns out she didn't just pull electrodes off, she managed to pull her PICC line out!!  

Fortunately she was off the blood pressure medication by then. I grabbed the nurse who came in and inspected the end of the PICC line and thought a piece had possibly broken off in Heather's vein. Minor panic ensued until the PICC nurse came in and verified that the PICC was intact. Crisis averted. Then we had to try to convince a confused, drugged patient that there was nothing to worry about. Fifteen minutes and some anti-anxiety medication and she was able to relax and fall back to sleep.  When she woke up this morning, she told me about a dream she had in which she pulled out her PICC line.... Not a dream Heather :)

Today, she has been sleeping most of the time. After she had the heart rate issues yesterday, the doctors ordered an echocardiogram (essentially an ultrasound of the heart) to be sure that the heart rate issues were caused by the IL-2 and not some other underlying issue. We haven't heard the results of the echo yet, but should a little later today. 

So now, more rest and observation. She is still managing to sleep, so we have good hopes of going home tomorrow. 

Can't wait....

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....