feeling good

I kind of have a bunch of things to say, and can't sort through them. But before I give up altogether, I wanted to report this has been so far, by far, the easiest recovery yet. Such a nice surprise. Other than a little fever tonight and that darn water hanging around, I feel pretty normal.

I have been giggling at the kids all day. My favorite was Luke bragging about one of the goals he made at a pick-up game of soccer over at the park today. "I got up close to the goal, told the goalie I was tired and had to go home, and waved goodbye, and started to walk away. Then as soon as he wasn't looking, I kicked it in." He was so stinking proud of that trick.

thanks josh, i'll take it from here

Just to be clear, there was no criticism from me over Josh's updates. I love how he deletes the drama. But it is fun to have him write more than few sentences.

His account is accurate, nausea seems to be the theme for this admission. I haven't kept one meal down. But still managed to gain 20 lbs. This is weird stuff. We stopped at 8 bags this time. We are weaning me off blood pressure mediations and making sure I've got all the right amounts of electrolytes so we can go home tonight. Friday! So excited.

Good things that have happened this week for us, well the good thing that happened this week is that the neck tumor is for sure smaller. And since we do all this for tumor shrinkage, we are totally happy about that.

Me being happy about that with my beat up face.

IL2 - Round 3 - Update 4

I have been receiving a little criticism about my posts, about how they are boring, lacking "explosiveness" etc.  I am going to do my best to remedy that with this post.  Although I am not making any promises about future posts.

Alisa has been sleeping well.  She usually wakes up once (around 4:00 AM) to go to the bathroom.  The first night she couldn't wake me up to help here so she had to ask the nurse, but I have been able to help her the other nights (it does take some yelling and throwing things across the room).

In the morning we get a visit from the nurse practitioner and the doctor.  They give use an update on Alisa's blood work and when they think she will be getting doses.

We try to eat breakfast before the first dose.  We have learned that eggs are off limits.  They might taste good going in, but when they come out later, they look exactly the same and smell horrible.  The last time she had eggs she didn't throw up for almost 4 hours and the eggs still came back up the same, yellow and chunky.  She has been eating fruit for most meals.  The fruit is amazingly good and fresh here, not sure how they do that. 

Alisa has been throwing up regularly this week.  They have given her quite an assortment of drugs, zofran, ativan, morphine :), some mental health drug that is supposed to help with nausea, none of them are helping much.  She feels sick most of the time, and throws up about every time she gets out of bed.

Because of this we have learned that fruit digests quickly and is not so bad coming up, kind of a nice purplish color.  The dietitian recommend she try a milk shake, this comes up exactly the same way it went down.  Peanut M&M's for a late night snack, colorful. 

All of this just today.

We try to get up and go for a walk at least once a day.  Alisa can walk about 100 yards, and then she is ready to sit back down (and throw up).  I have to mention that last time we were here we used a good sized quilt to wrap around her shoulders when she walked.  By the end of the week she mentioned that we needed to get a nice little shawl for the next time around.   When I went back to work the next week, we received a wonderful gift from a co-worker, a prayer shawl that she had been making with her friends.  We have been using it every day.

Alisa has received 8 doses so far and we are hoping to get out of here tomorrow, although I think that is wishful thinking, and probably not reality.  She will very likely get 1 more dose in the morning.

Josh

p.s. Please try to ignore grammatical errors and any punctuation errors, definitely not my strong point.

IL2 - Round 3 - Update 3

Sorry about the delayed update.  There is nothing new to report.  Alisa felt nauseous all day yesterday and received her 6th dose last night.

We are doing well, thanks for all the thoughts and prayers.

Josh

p.s.  I will try and prepare a better post for tonight.

IL2 - Round 3 - Update 2

Today has been pretty good, considering the circumstances.  Alisa is reacting very differently to these doses than she did in the past.  She has not had the rigors at all, she got those after every dose the last time.  The nurses have told us that it is normal for patients to react differently each time, I don't understand that, but if they say so.

Alisa has mostly felt nauseous, tired,  and generally sick, but has had very few other symptoms.

We had a visit from Alisa's Aunt Kathy today, it was a nice visit, and she happened to find us when Alisa was awake, good thing, I am rather boring.

She has received 4 doses so far and will likely get her next one in the morning.

Josh

IL2 - Round 3 - Update 1

Alisa is receiving her second dose right now. She is feeling sick (good? bad?). She has thrown up twice but other than that is just feeling "sick"

They are giving her more Ativan(sp) this time so she is sleeping a lot more, and will probably not remember much (if anything) about this week. She is definitely more comfortable with this medication (she sleeps a lot more).

Overall we are doing well, and are happy to have 1 day down (4 more to go)!

Josh

so...

What do the scan results mean? I kind of wanted to hear that "This is the best response I've ever seen", or "This is just how a complete responder's scan would look after the first cycle." But it wasn't worded that way. It was said that these scans look great, and without the IL-2 they would be looking much worse. I think basically, we have a shot here as a complete responder (5%, gets rid of all cancer for years and years), or partial responder(15-20% gets rid of all but 30%? of your cancer), but for now it is just stable disease. This is super exciting to me.

I now have to admit, as you may have guessed, that I have known about the breast tumors for a while. The last day of my second week in the hospital I felt for them and they had disappeared. I could not believe it. This is one reason we pushed it at the end with the 9th dose on Friday, even though I was so done.

I kept wondering if there was just too much fluid in my body, that maybe the tumors were hiding. But every day I felt, and never could find even a trace. There was one you could see with the naked eye (naked being key here) sticking out for the last month. Then suddenly nothing to see or feel. I didn't want to tell anyone because at the same time these went away, my knee was killing, and another bump popped up on my neck that felt just like the others. It was a small bb at first, then a pea, and now it is a small marble. So I didn't know what was going on. I knew new growth was bad, but disappearing tumors was great. I didn't want to confuse people (mostly my kids), as we didn't know what else was happening. So we waited to talk to the Dr. Unfortunately, the scans we did started from the bottom of my neck and went down, and the brain MRI didn't go low enough to get this lesion either. I don't know, I guess it could be something else, but it feels exactly like the breast tumors (they did stick a needle in two of the breast tumors to collect cells to make sure they were melanoma. They were easy to find back then, and they were indeed melanoma). The Dr. is not so worried about the subcutaneous tumors right now (the one on my neck, and possibly a couple more that showed up on the scan), it is the liver and bones he is watching. The bone that we radiated looks like dead tumor. The large liver tumor has not grown.

These are all good signs. But yes, you can have good response without it getting all the cancer. You can do well on IL-2, but still have to do other treatments after. I guess that is still the most likely scenario. This is why Josh is saying "This isn't good news, it's just not bad news." I am disagreeing. He is usually the one looking on the bright side. Now he says the only news that would be considered good is that I'm cured and never have to go back and never have to worry about it. I am okay with that, because someday they might. Today I'm thinking someday they will. Although, they say upfront there is no 'cure' at stage IV, only 'durable response'. They shoot for 10 years. I guess that feels like forever for me. Are you kidding? Five years feels like eternity, and at ten my youngest would be sixteen. And by then there is bound to be a cure. Really, they are getting close. Go cancer research!!!