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!!!

details

Thanks for all the comments and well wishes! It would be beeline to California if it weren't for all the practical things to attend to. Like work and school. Boooo!! I guess I can wait till Thursday.

I will tell more of what we found out at the Dr., but today was just too much fun not to share (even if I have to do it with my crappy phone camera photos).

Most important, the happy news from the Dr. I usually don't have a smile like this on my face at the office. I got to check the boys out early and tell them the good news before they had to go to the dentist. It was a great moment.

I think this is the first time we all had cavities.

James won a story telling contest at his school last month, so today we drove to Lindon to compete at the district level. He told the story of the bear we saw at Twin Lakes. He puts in a lot of his own jokes and it's pretty fun. I'm sure he will make call-backs.

I came home and found this book my cousin had mailed to me, chronicling our trip to Paris. It alone was enough to make my day. Remembering that I have done one cool thing in my life, even if it was a few years ago. Thanks Jill!

Josh helped James with his homework. James does about 2 hours, but sometimes more, of homework a night. I don't remember anything like that in the 5th grade. Not a big fan lately.

I got to play tiger mother for a good hour tonight.

One consequence of this was Sam storming out of the room after me telling him to play a b major 5 finger pattern and he asking again and again "Why should I?" and I having no good answer except that is what it says to do on his paper (I don't even know what a b major would look like). After a while Josh heard him yell from his bedroom "I'M LEAVING!!" so he went to see what that was all about. And there was Sam. Pushing on the screen at his window. His bow and arrows and tennis shoes on the bed next to him. He explained he was leaving because nobody loves him. Said he was planning on living off the kill of rabbits. Josh pointed out he may want to bring matches to cook the little critters. Sam then produced his fire-lighter. James suggested the BB gun might be a better option. Sam disagreed, as it would scare off the other animals in the area.

In the end, I simply reminded him (after stifling some pretty hefty laughs, for this is my first experience with a runaway child) how he had a hard time sleeping at Grandma's house and that it might be even harder on the stiff ground.

Yes, he ended up back on the piano bench. But boy were his shoulders stooped.

Have I mentioned that his real reason for starting piano was just to get good enough to read music so that he can drop out and play the ukulele? True story. I wonder if that is going to happen sooner than later, if only for his mother's sanity. Besides, a small wooden instrument would go well with a bindle over the shoulder and bow and arrow on the back.

Scripture reading. The kids fight for more verses if we are reading from the iPad. Something about screens and boys...

Josh literally ran out on his cougars (BYU) tonight, he was so frustrated with them. He came home to watch them make the biggest comeback in NCAA history. I asked if it was the happiest he has been all day (because honestly, I haven't seen him smile like that for months). He said "For sure." I don't get it.

Truth is, we all are possibly the happiest we have been in months. Our chance at a chance for many more days like this has gotten bigger. How great is that?

!!!!

Guess what? It's working!!! Not only is there nothing in the brain (my biggest fear) but the tumors have either not grown (liver) or have disappeared (breast). There is the possibility of a few new small subcutaneous tumors we didn't pick up on earlier, but for the most part this is great news. The Dr. said about 30% of patients get to do the second cycle of IL-2, and I get to be one of those!

They are calling it stable disease. He wouldn't predict with me if I have a good chance of being a complete responder (having the IL-2 get rid of all the cancer for a 'durable response') but I'm already beating the odds.

What are we going to do to celebrate? The ocean is calling, and I have been putting it on hold for way too long. A quick trip to the coast before I go back to the hospital (Monday) sounds like just the thing.

I've got to run the kids to the dentist, I might be able to give more details later.

coping

Sometimes I wonder how we made it through the week, what with all our anxiety. Tomorrow we will see what changes have been made to my cancer (this afternoon I have the scans done, tomorrow we get results). Of all the scans we have had in the past, this by far the most intimidating.

I have been so very unproductive this week. Luckily, we have had some things to keep us going.

*James turned 11, so we had a party to plan and carry out. Presents to shop for. We had piano and homework. Karate and scouts. Beautiful spring-like weather called for an afternoon at the park with cousins.

I had a most lovely overnight this weekend with some of my dearest friends from nursing school. It was a fabulous distraction. We laughed about the grossest things, and cried about the sweetest. My bff is the perfect hostess. She brought up chocolate ganache and strawberries. Need I say more?

Josh and I were able to go to a memorial service for our friend from high school, Bradford Garrison (Bradford Bruce Garrison Obituary on Deseret Newsm.legacy.comOnline obituary for Bradford Garrison. Read Bradford Garrison’s life story, offer tributes/condolences, send flowers or create a Bradford Garrison online memorial.). The program deserves a post of its own. It was so beautiful! I will always remember the stirrings of hope and love and sorrow I felt for such a great guy and his family. Rest in peace, Bradford, you are loved! My funeral is going to be SO boring compared to yours!:)

*We have housekeepers. They come once a week and do the deep cleaning. I just tried to imagine what things might look like around here without them. Not pretty. I should have more time for other things because of their help, but I'm telling you accomplishments around here have been few and far between. I know I should work to get rid of the worry, but that doesn't seem possible this week! Next week, yes.

*We pray. We are prayed for. My faith in God is strong. But honestly, when I think this is in God's hands, it sometimes scares me. I like to have control. To give this up to Someone else is not always comforting. I am forced to work on my faith every day. Deep breaths and lots of little prayers. "“I believe; help thou mine unbelief.”

*We hang out with the kids. They have their moments, but for the most part are happiness and fun. I actually do really well when the kids are around, spirits high.

*We have hope. What are small chances to big, huge, high hopes? I do not yet feel like this is taking me down. When I feel healthy like I do now, I am ready to fight again. Yes, by the end of the week on IL-2 I was screaming mercy and had a little breakdown when they told me they were going to do another dose. But now that my mind is clear and I feel fine, I want that poison again and again!

But until I can get back in the hospital, it's a head game.

I trash talk my cancer all the time. Cancer. There are stage 4 cancers with no cure. You are not one of them. I'm watching you. I know where you are. You have mutations. I have weapons. I used to know what you looked like, I kept you away for years. Now I just need a little help remembering. That is just what we are doing. You going down. Quick. I used to have plan A, B, and C. I decided I don't need them all. Plan A will be good enough. Say your goodbyes.

*****

We are a tough bunch, but sometimes we have breakdowns. And sometimes we are stressed. And sometimes it's hard to get out of bed in the morning and get the kids ready. Sometimes we cry. Sometimes we feel a sense of hopelessness about the situation. Maybe lots of times I feel that way.

But sometimes, every now and then, especially on a sunny day like today, I burn with hope and dream about the future. Sometimes a miracle does not sound so far-fetched. In fact, sometimes it feels inevitable.

But why only sometimes? This is confusing. As is my writing today. As are my thoughts. Tomorrow we will have some answers and move forward.

Until then...

marching along

I feel great. Now only tired, but who isn't? I get the kids ready for school and crawl back into bed for a little morning nap (I kind of think I have wanted to do this ever since we started school six years ago:)). I even sometimes take a short nap before they return. And then by 9 pm I am tired again and ready to lay down. I have been very grateful lately for school, that I can take it easy while they are away, and give them my best when they are here.

Oh, and we had a lovely, over-due snow storm that has cheered us all. We love our Utah snow! The boys come home, get geared up, head outside, come back in a couple hours later, just long enough to melt the snow on their clothes and make them terribly uncomfortable, and then put them all back on for more fun till sunset.

Almost impossible not to get caught up in this kind of enthusiasm.