Waiting

I am still feeling pretty crummy. I am getting over my cold but still really have no energy to speak of.

It has been so nice to be home, sleep in my own bed, love on my sweet dog, see my friends and feel 'somewhat' normal.

The weather is so beautiful. Fall is really here. I would love to be out on a trail, running through the leaves, crunching under my feet, taking in all of what is 'fall'.


I spent some time reading over some older posts and comments on those posts. I feel so fortunate so have so many great friends and people pulling for me. It really makes me feel so good ,sometimes brings tears to my eyes (in a good way). Reading all of the inspiring and encouraging posts are helping me to gather the strength to go back into the hospital. It was easier to go the first time when I didn't know what I was getting into.

So for now, bring on the Trick-or-Treaters!!!

Resting

Trying to rest as much as possible these days. I have a cold, so that's awesome! Had blood tests today, everything is functioning well:) We have been so fortunate to be showered with delicious food from our friends. I don't know how we will eat it all, but we'll try our darndest:(

Still haven't lost any of the water weight very frustrating:( Started on Lasix today. I will probably be up all night. Oh well...

Until next time

Heather

There really is no place like home!

Finally got checked out the hospital yesterday. I don't really remember much of the day. Once we got hom, we got pizza delivered from wonderful friends! I fell asleep on the couch around 6. Kelly moved me upstairs ,and I woke up at noon. Still feel very tired, itchy confused and uncoordinated. Really, even more than I normally do:) I feel like I am molting. My skin is peeling everywhere!

It feels so good to be home! I have missed my baby Lola;)

I am trying to rest as much as possible, knowing that this starts the all over in less than a week. This was honestly the hardest thing I have ever done and I cannot say that I am excited to do it again. But I am going to do it!

Thank you for all of your continued support and motivation:)

Heather XOXO

Day 8 - Going home (Really)

Finally, we are going to be able to get out of here. Heather slept well last night. Once she got the right combination of Benadryl and Ativan on board. 

Today has been fairly busy. Heather had the energy to get up and take a shower. Doctors required another walk down the hall before they gave us the green light to go home. Another site cover change on her PICC line, which was fairly painful for her because she has had a pretty bad skin reaction to the tape that was used in previous covers.  They put a different type of cover on this time that usually works for people with sensitive skin. Calling her skin sensitive is quite the understatement right now.  

Now, the bags are packed, discharge orders are in hand, and looking over at the bag of IV potassium that is being infused, I would say that we are just a few minutes from being able to get on the road. 

Thanks everyone for all of the support. I think that tomorrow, Heather may be able to get back on the computer and continue the blog herself, not to mention answer a bunch of emails and facebook messages that she has been unable to get to due to the exhaustion, trouble getting her eyes to focus, and inability to make her fingers hit the proper keys to form actual words :)

Day 7 - Are we there yet??

Well we are moving forward, but at a tortoise's pace (good news - the tortoise won) :)

Heather is still feeling very weak. I know that she would love to be typing this, or at least dictating, but fortunately she is actually sleeping, despite the near continuous roto-hammering going on on the room remodel a mere two feet from her head. She has woke up several times throughout the day convinced that the ceiling is collapsing on her. 

Last night we were able to get some sleep.  Luckily for us it is not a round-the-clock construction zone here in the ICU. 

The doctors came in earlier today and told Heather that they wanted to make sure that all of her bodily functions were working properly before they send her home. She was told that one way to get things headed in the right direction is to get up and get moving. 

Well, give Heather a task and she is going to get it done (I bet she was always the first person to turn in book reports).  As soon as our "team" left the room, Heather turned to me and said, "let's go for a walk." I got her up and we cruised down the hall at well over 0.3 mph :-) she did really good. We made it down the hall and back, but I think that was all of the extra energy she had. Back to bed.

She has been snoozing off and on, trying to build that energy back up for another walk. Appetite is poor and anytime she gets anything in her stomach, she gets pretty nauseated. Thanks again for smart people and drugs - Zofran - a great anti-nausea drug. 

All that being said, it looks like our hopes of going home today and seeing our house and dog and bed and quiet and etc. is not going to happen today. I talked to the nurse not long ago, and like most nurses, she could read between the lines of a doctor's statements. The nurse told me that she could pretty much tell by the doctor's tone of voice, that the earliest we were going to get out of here is tomorrow morning. 

Heather and I, as many of you know, really enjoy week long vacations. However, usually there is sun, sand, golf, swimming pools, and many wonderful people bringing us drinks with little umbrellas in them. None of that seems to be the case here, with the exception of the wonderful people taking care of us (no boat drinks though). 

 We are anxious to go home, especially since we are going to be back down here on November 2nd. I know I said it yesterday.

Here goes again... I think we will be going home tomorrow. 

Day Six - Exhausted!!!

I'm guessing that is what Heather would type if she had any energy at all. Things went well last night. She got her 14th dose at 1:30 in the morning!! 14 for 14!!  She is still too weak, tired and confused to realize yet that she met her goal. All typical side effects of the IL-2 plus the addition of the drug cocktails she has been receiving. Not only that, but I'm pretty sure she made several imaginary friends through the night. Vivid dreams are another side effect. She told me today that several times through the night she wondered why there were so many people in the room... She gave a weak chuckle when I told her the only people that were here were the nurse and myself. 

The plan now is to stay in the ICU for the next several hours while they try to get her off of the pressor drug that has been supporting her blood pressure for the last few days. They can't just stop the drug or her BP could drop dangerously low, so they lower the dose every 30 minutes or so as long as her BP stays good. Once her BP is stabilized, it sounds like they will move us to a regular room for the night. 

Once she is off the pressor, they will then get her on a drug called Lasix which will help her kidneys get rid of all the extra water weight she has gained. I'll let her tell everyone just how much she gained in a later post if she so chooses :-) the good news is, it is all excess fluid and she should be back to her fighting weight by the end of the week. 

Hopefully later today, Heather will be up for a little blogging herself, but I knew everyone would like to hear that she successfully completed the first round and is on the mend to get ready for round two!!

Bye for now - Kelly

Day five - too weak to type (or talk)

Well, the fourth night into the fifth day has been rough. Heather is actually sleeping right now, so I thought I would update her blog for her. Things were seeming pretty easy for her after the first few doses, she was convinced she was going to sail through with minimal side effects. 

Well, it was the preverbal calm before the storm. The reactions seem to get worse with every dose. Sometimes she just itches, as you have read, but lately, she gets to the point where she feels the urge and incredible need to jump completely out of her skin.  Thank goodness smart people invented not only drugs that make people feel horrible, but also drugs that can combat the evil feelings. She has been getting various combinations of Demerol, Ativan, benedryl, clonazepam, and others. I'm not sure exactly what she last got, but it seems to be working great because she is still snoozing away!!  

She has remained on schedule with the IL-2.  She had her 12th dose at 10:00 this AM with only two to go!  She is set on getting all 14 doses despite the fact that all the doctors and all the nurses have told her that very few people actually get all 14. Doses get skipped for various reasons. BP too low, HR too high, fluid in the lungs and many times simply because the patient is just too miserable and needs a break. Not our Heather. I think she would drag herself to the pharmacy and mix the drug herself if they told her she was going to have to miss a dose :) and right now she barely has the energy to lift her head off the pillow when she is awake. 

The good news is once she stops the drug, there are no lasting side effects. She should be feeling back to normal by the end of the week. Then.... she gets to come back down on the second of November and do it all over again. Whooohooo what a treat :( 

But then she is done for a while. We wait about 5 weeks after the second round is done and then go in for another PET scan and find out if it worked or not. 

Thank you so much for all of the love and support. I have always known we have been surrounded by good people, but something like this happens and our amazing friends and family amaze me more and more every day.

Kelly

Running up that hill

First of all, I want to thank all of you that have been following me during this experience. Also to thank those of you that have posted such uplifting and positive comments. It really does boost my attitude and help me to continue:)

Last night went well, no real adverse reaction to the dose. The night , however, was a real blur.  My focus has become a little  less than it normally is.

I was able to be taken off the vasopressor long enough to be able to shower again today. It is nice to be able to fell clean, but it sure wears me out.

I just finished my 9th dose.  It is now 11:00 am. 

I get weighted every morning. Awesome right? So far I have gained 26 pounds. Pretty impressive huh? Fortunately, it's all third spacing that should be gone within days of my release. I still don't like it much.

Still itchy and red, my skin is starting to peel in places, and I have been feeling more tired each day. No real appetite.

My room is nice. All of the doctors and nurses have been very pleasant as well.

All of this would be so much harder with out Kelly here. I have always known what a special man he is, but this is another challenge that again cements that in my mind:) 

This afternoon was a little more challenging. I got really chilled,  itchy and restless. So comes the demerol, Benadryl and Ativan.  I thought that would treat my issues and also help me to sleep. No great results with any of the above  mentioned issues.  I am also back on vasopressors.

Now I have a little fluid in my lungs, so I am on oxygen. Joy!

I am still scheduled for my next dose at 6pm, it now 5:30. 

It is getting more and more challenging to continue and maintain a positive attitude. I have a few minor meltdowns today:(

5 more doses to go.  I feel like I am hitting the wall during a marathon.  Trying me best to run though it.

Until next time,
Heather

Day 3 - Getting into a routine

5th dose at 2 am went very well.  Kelly and I both slept well last night. Had another dose at 10 am (#6) again at 6 pm(#7), no real bad reactions.  We have been premedicating before doses with clonazepam and Benadryl.  Seems to be working. 7th dose down, we are half way through!! As long as my blood pressure stays high enough.  If it continues to drop, I'll have to be put on a pressor medication, and possibly skip a dose or two if the pressor doesn't work. The nurse is hanging a bag of lactated ringers right now to try to increase my volume. I have a virtual christmas tree hanging next to me with six different bags of various meds and fluids on it and IV lines coming towards me like a pile of spaghetti.

I got to take shower again today, it feels really nice not to be hooked up to anything:)

Still itchy, red and puffy. I get weighed every morning, let me say it is impressive!

I spoke to soon am currently crawling out my skin. Hopefully Ativan will come to my rescue!

Until next time!

Day 2: Itchy, scratchey, chills and aches

I got  a few hours sleep last night.  How much do you really need when you are in bed all day?

I was able to shower today;) 

Third dose was today at 10 am.  The major  side effects I am having are high heart rate,  and low blood  pressure. No vasopressors needed yet. My skin is also really red and itchy.  The doctors and nurses all agree, side effects will become more sever as the doses continue. 

Fourth does at 6 pm. after about 45 minutes of feeling pretty good, I tanked
Chills, restless body, achey muscles, absolute discomfort. I thought I was gonna cry, or jump out the window.

Fortunately, they  have drugs for this. I waited too long to ask. Next time, I'm not waiting. I see now why many people can't complete all 14 doses.

Wish me luck on dose #5:)

Day One

Luckily there was a bed available for me today. A little later than planned, but that's okay.

We got admitted, Got my bracelets,got my room, and met the nurses. Next is PICC line placement. That is really quite a procedure. First the nurse used ultrasound to find a suitable vein in my upper arm. Then she measures from her intended insertion point to where she believes my superior vena cava is. That's right at the top of my heart, yikes. After insertion, with something called the introducer (and scalpel kelly told me later), she threads the catheter towards my heart. To check for correct placement, she flushed the line with saline. I felt the flush in my jugular. Not correct. Second time is a charm. Now a chest X-ray, to make certain it's in the right place. It is!!

Had my first dose of IL 2 at 6. I felt a little crummy. Dizzy, nauseous, chills. That passed in about an hour. Next dose at 2 am:)

What do you pack for the ICU?

So tomorrow is a big day. I had a good day today. I worked, got out for a great run, and was yet again amazed by my friends!:)

We head to Seattle tomorrow. First to SCCA to have blood drawn for a research study I will be involved in, and then to UW medical center for check in.

I suppose eveyone would have a hard time with a diagnosis such as mine. I feel pretty good, actually, better than I have in a couple months. How can I be so sick? It's all starting to feel more real. I had a difficult time sleeping last night, thinking about everything possible and some impossible things. I am both glad and scared to be starting treatment. I have no idea how it will affect me in the short term, or how it will affect my cancer.

I am trying to muster every bit of strength that I can, however, I still have moments when I am absolutely terrified.

The Beginning

As some of you already know, I have recently been diagnosed with Metastatic Melanoma.

We found out because of an abdominal bleed that landed me in the emergency room. After my surgeon, Dr Mora, removed my left ovary, about 2500 cc's of blood and repaired the ruptured cyst in my right ovary we felt pretty lucky.  However,  the pathology report on my ovary that had been removed stopped us in our tracks.  Melanoma!  We couldn't believe it.  So it starts.  Doctor's appointment's, MRI, PET scan, meeting with an oncologist in Bellingham, then being referred to Seattle Cancer Care Alliance (SCCA).  All of this while trying not to google metastatic melanoma and totally freak out.

After our meeting at SCCA with Dr Margolin, we have decided on a course of treatment called high dose IL 2.  It will be administered at the University of Washington Medical Center. I will start this treatment on Wednesday October 19th. It will consist of 5-6 days in the ICU receiving infusions of IL 2, followed by 9 days of recovery then another 5-6 days in the ICU.  More treatments will follow. What treatment it will be depends on if, and how well, the IL 2 works.

If you care to follow, I will be updating regularly.

I want to thank everyone for all of the love and support that we have received in this difficult time.  I cannot fully express how truly fortunate Kelly and I feel to be surrounded by such great friends and family.  I have been surprised and amazed over and over by you all.:)

Heather