Tonight I started reading to Luke and Sam The House on Pooh Corner. A.A. Milne is one of our favorites (If you haven't read these to your kids, it's time!). But this time around the Introduction (or Contradiction) made me cry. We learn Christopher Robin grows up. And out of the Hundred Achre Wood (sort of).
I just can't take it sometimes!
Five to six, eight to nine, ten to eleven. Such a change. Each year producing almost a new creature. Years are leaps at these ages. Not the small steps I take now.
Does anyone care that I was smack dab in the middle of Peter Pan when I got my scan results last month? I haven't had the courage to pick it up, because I know what happens and I know what was happening while he was writing it. He was watching boys grow up.
There is this part in the movie Finding Neverland (it is about James Barrie and how Peter Pan came about, not sure how accurate it is but...) where the oldest boy George is talking seriously to James about his mother's serious illness. James says, "Magnificent. The boy is gone. In the last 30 seconds...you became a grown-up." I see that same look as George in my James' eyes when we talk about Heavy Things. I was first diagnosed with cancer when he was 6. He would plug his ears whenever it was brought up in conversation. But now he takes it...almost like a man.
Sometimes I think I can stop this great change, but there is nothing strong enough to hold it back. I'm just glad I get to see it all unfold. The coming of age right before my eyes. It is fantastic.
I'm thinking if Barrie and Milne can capture boyhood so beautifully, maybe it never really leaves them. They might always be, at heart, that treasure-seeking, blood-thirsty, stick-throwing, rock-collecting boy.
I like to think so.
James still puts his fantasy books down every now and then at bedtime, and pops his head in to listen to our childish stories. Tonight was one of those nights. I wonder if he remembers laughing at just the same parts his brothers are now giggling at.
I feel so happy when I think that we have spent many of our afternoons playing Poohsticks in the river and skipping rocks. Because this is only an option for so long. Eventually those little boys step out of the Wood.
Happy to be ending this week. Honestly, I've been ornery. Wednesday morning (the morning I was just starting to feel normal again). I had to drive back to the hospital for an outpatient infusion. One I don't remember anyone telling me about, so when Josh reminded me the day before I was just angry. It is the drug Zometa, which is used to help repair bones in the case of metastasis and maybe something that IL-2 does to me? Like I said, I don't remember talking about this. And I am so alarmed when I am reminded there is cancer in my bones anyway, it never sits well with me. At any rate, that night I came down with an awful fever and chills that we just couldn't do anything about, and then pain in my bones to rival any pain I had ever experienced. My shoulders were popping loud with every movement, and did I mention hurting? I didn't sleep at all that night. We called the Dr. in the morning as my fever of over 101 was still hanging around, and oh, my shoulders! They had us come back to the hospital to make sure I didn't have an infection anywhere. Which I didn't, I was just having the bad side effects to the Zometa. They said it would most likely be bad just on the first infusion. I guess I have to do this once a month. But to be sick an entire week out of my 4 week recovery period has been unacceptable. Saturday was the first day I woke up without flu like symptoms. I am finally over the fever, but very weak.
My family has also been sick, I have had a kid home with a fever all week. Josh even has one today. It's not like my illness is stopping anything else from happening. We got a flat tire, I have to go to the dentist, we still have homework to worry about, chores to do, hair to wash, and what do we have to look forward to?
I try not to feel sorry for myself too often, but today Josh asked what we would be doing right now without cancer. And then he reminded me we would be getting ready for our race and planning our trip to Spain. Well that did it! I would be studying up on Europe! It was the only thing on my calendar for 2012. We bought the tickets partly just to have something on that calendar. That something to look forward to. They were for the end of May, and it just isn't going to work out with my treatments. I hadn't given myself time to grieve over the loss of that trip. I know that I will get over there again, and it will all work out, but tonight I'm letting myself feel bad about it.
Last night as I tucked Luke in he said (in his most sincere voice, with his most sincere eyes) "Mom, I'm sorry you have cancer and all that stuff." So am I baby boy, so am I.
ps
I am just finishing up a little valentine for Josh that I am putting on the blog late. I wrote it last Saturday. Make sure you scroll down and check it out. Josh rocks.
How was your week at the hospital? Honestly, it was pretty horrible. I remember a lot more. I was a lot sicker. I might be a little tramatized. I could go into details, but yuck.
How are you doing? Feeling pretty beat up, honestly. I am up and out of bed today walking around a little. Ever day I get so much better, but have spent most of the day in bed again. The biggest thing I'm dealing with right now is getting rid of the fluid (I have 6 pounds to go). It is loving my leg with lymphedema, but I think tomorrow it will be good enough to get around on. The most annoying thing I'm dealing with is night sweats. I have finally figured out how to wipe myself off and change the bedding several times a night without too much disruption to sleep. Still, I would love to go to bed at 11 and wake up at 7 or something. Can't wait.
What is the deal, you got your PICC line out, are you done with treatments? Oh, I wish. Here is the plan: We do a body scan and a brain MRI on March 12th. Really soon. We will be able to see if this is helping at all, not hurting, or if the cancer is spreading. If it is helping or not hurting (no real growth) we are scheduled for another cycle of IL-2 (a cycle is the two week course I just completed). We would start that in I think 4(ish) weeks. We would then do the same thing, scan, wait a month, do it again. They will only do 3 cycles, so I would be done with IL-2 I believe in June.
What about Maryland and your trial? We will see what the scans say. We are not making appointments in Maryland for March, hoping we can still do some more IL-2. But like I said, we will see.
What are you going to do with your month off? Haven't even gotten there yet. Can't even imagine feeling good right now. I am guessing there will be at least one trip involved, many thank you notes sent out, more figuring out the best way to run the family while I'm sick. I'm sure it will be hard to just hope that my immune system will kick in and not be actively involved in fighting. More mental hurdles. We are getting used to those.
What can I do for you guys? We know most people feel pretty helpless, but we feel like we have been strengthened by your prayers. We are so grateful for everything. I sound like a broken record, but we are the most spoiled people in all the world.
Remember all those cute family videos I was going to make this week? Got on my computer almost zero times due to my inability to do anything but act sick. On Valentines Day I managed to put a picture of Josh and me up on Facebook, but my bigger plan was to try out iMovie with a look back at our love story.
I know everyone thinks their love is something special, like no one else's. We are probably all right. I know mine is unique. Even if we can be categorized as your standard high school sweethearts.
I vividly remember the first day I saw Josh. It was the last day of 6th grade. We all walked to a park a few blocks west of the school to play sports and celebrate the end of elementary. After a few games of tennis, I walked up to see what was going on at the baseball field. There was a tall boy, not from our school, in zebra print MC Hammer pants joking and flirting with all my classmates. And playing pitcher! The nerve! I asked my friends about him and they said they all knew him because he used to go to our school. He left to attend a gifted program at another school the year (5th grade) I moved to Sandy. I was very intrigued. Mostly in his confidence. He has always had so much of that.
And so, like I said before, I played my cards carefully. I sat close to him in all my classes (we have been in almost every class together since the 7th grade because we had an honors program in the school that gave us similar schedules). I was quiet and listened to everything he said about himself. If he liked country music, I liked country music. If he liked sports, I liked sports. He at this point didn't know I existed. He was a very popular kid.
One day he took notice of me. It was the end of 8th grade. In English class. I had walked by him kissing girls in the halls for 2 years. But finally I caught him looking at me, and flirting with me.
Of course, we never kissed in the halls. We had a bit of a tumultuous relationship, I was always trying to break up with him, and he was always apologizing for things he didn't do. It's long and complicated, but he never gave up on me. No matter what mean things I said, he came back as confidently as ever and I could never resist.
During one of the try-and-break-up-with-hims, I said, Why don't you find another girl? "I like you." Why? There are other girls like me. There are other girls better than me! They are prettier, and more athletic, and for sure nicer! "Well, I'm very picky." I know, and you can have your pick, anyone would take you, Josh. "Yeah, but I like the way you walk."
He has always maintained his undying love for me. He does everything for me. He says he wants to do everything for me. It's like nothing is too much to ask. The kids, the house, the neeeeeeedy wife. He won't leave the hospital while I'm there. He will hardly leave the house if I'm here. He won't sleep if I'm up sick. He doesn't complain, he has to keep working, he still walks the dog, and wants to play with the kids.
******
When things are scariest, when they are the hardest, when you have to push yourself to do something outside of your limits...it seems like you needs an image. That picture in the back of your mind on why you are working so hard to get something done. The reason for your struggle. Maybe a soldier keeps a sunny day with his little kids in his heart, a runner puts that goal line with his foot crossing over in the front of his mind, a child lost in the woods (this probably doesn't happen anymore, but it sounds scary) sees the his backlit home as the sun sets when he closes his eyes as strange noises are snapping around him.
When I am very sick, sick like I would just rather die of cancer sick (just been there), I have been lucky enough to have that image holding my hand, kissing me on the forehead, and praying at my bedside. The whole time looking at me with love, and of course that confidence..
It has been so much fun to grow up with Josh. I don't know if we were made for each other. I know we started at a very young age to be what the other one wanted, so in a way, yes. I know our hopes and dreams are built around each other.
God bless our love, Babe. For years and years. Of all the millions of reasons I want to live, you are number one.
ps, I could write sheets and sheets about Josh, but this was enough to put me in tears. Even if I listed just the things Josh did today it would amaze. Seriously. I think he is superhuman.
pps, this is Peter Brienholt singing a song by John Lennon, quoting Robert Browning.
Home! You wonderful place! We arrived around 4 in the afternoon and in all your February drab, you took my breath away.
This has been a hard week. I guess Josh explained. I can't tell you how happy I am to walk under the sky again and hear my darling little boys' voices. To crawl in-between my very own sheets and pet my puppy. I even got my PICC line out and took a bath (my very favorite luxury). I am so overwhelmed.
Almost like clock work, 2 hours after Alisa receives the drug she starts to shake (uncontrollable shivers), they give her some medication (demerol) and it goes away within a minute or so. Last night it didn't work and she was shaking for about 30 minutes before she settled down(a couple doses of demerol and one of dilaudid).
We were awake till about 3:00 AM because her blood pressure was pretty high and so she was not at all sleepy.
Remember yesterday I told Alisa maybe we could go home this morning if she got through her 8th does. First thing this morning they came in and told us it would be best if they could get another dose in today. They say the treatments are cumulative, so the more we can get in a short time, the better. We definitely feel like things get cumulatively worse, so maybe they are right. As of right now (6:45 PM) we are still recovering from the 9th dose and will be coming home tomorrow morning.
Alisa had her 7th dose this morning at 10:00. It was probably the hardest one. Her blood pressure dropped to 85/27. I figured this was pretty bad when the nurse tilted her bed and said. "you only do this as a last resort when you have to wait for pharmacy to bring up the medication". I wasn't really too nervous, the nurse didn't seem worried and had done this before. The medication worked but she was pretty sick with a low blood pressure for about an hour. She then had a fever for about an hour.
Because of her being sick, we thought she would be done with the doses (they stopped with less problems last week), well they came in at 9:00 and said Alisa would be getting her 8th dose tonight! Really! We were in shock.
I am trying to convince Alisa that if she does it tonight we might not have to do one tomorrow and she can go home, although I am not sure about that.
Anyway, last night was pretty hard (she was up much of the night sick and itching), and tonight looks like will be much of the same.
Strangely, today has been better than the last two. Alisa has been able to get up and walk around today with getting dizzy. She has not thrown up as much, and right now she is actually feeling pretty normal.
We think she will get her 6th dose sometime tonight.
Today has been quite a bit harder than last time. Alisa was never constantly sick during round 1 until Thursday.
She got her first dose of IL2 at 10:00 and has been sick/sleeping/puking since then. We have tried to get out of bed for a little walk twice, both times she has barely made it to the door before we head back for fear of her blacking out.
This is probably more information than she wanted me to give. All she said was. "This happened yesterday too???"
yep, Tuesday, same as Monday. Although they did give her some medication to keep her blood pressure from dropping every time she stood up. She has made it to the bathroom TWICE without blacking out. Three Cheers!
I have a feeling tomorrow might be much of the same
Josh
PS: She has had 4 doses so far, they are hoping to get at least 7
Today has been quite a bit harder than last time. Alisa was never constantly sick during round 1 until Thursday.
She got her first dose of IL2 at 2:00 and has been sick/sleeping/puking since then. We have tried to get out of bed for a little walk twice, both times she has barely made it to the door before we head back for fear of her blacking out.
This is probably more information than she wanted me to give. All she said was. "Can you update the blog, just tell them this is way harder than last time."
Prepping today for another week at the hospital. James has been nervous for me, always asking how I think round 2 will be. I prayed today that we could have a good week next week and he afterwards was shocked. "Mom. A good week? With IL-2?"
I found some pictures on Josh's phone.
Inserting the PICC line (threading a catheter up to my heart). Hate this part. Trying to control fevers I think on the second day. Ice under the arms, and cold washcloths. Gaining weight rapidly. Do I look like I need a shower? Josh says I went on at least a couple of walks every day. Hopefully next week he can remind me to put my hair in a pony or something before we leave the room. Nearing the end of the week. Thrush because I killed off all my normal bugs to keep the fungus away. I requested an orange pop cycle, the first thing I could eat in a while.
So...Il-2 is a protein that our bodies naturally make. It aids in the immune system. By giving me large doses of synthetic IL-2, we are kind of mimicking a major infection. I guess that is what it feels like a bit, a week of mastitis or something. When we have an infection, our capillaries leak out fluids so that our fighting cells can get to the bug and destroy it. This is why I gain weight, the capillaries let the fluids out. I think this is why we have to monitor my blood pressure and heart rythum so closely, because of the fluid in all the wrong places. This also messes with the electrolytes, and they hung bags of calium, potassium, magnesium, etc. to keep the blood levels stable.
James asks if I am more scared this time than last. Honestly, I'm not really scared of the treatments. I am only scared of them not working.
Here is a little video of my new room. I asked James to play some background music to add drama. He was happy to oblige with a new song he is working on for the next recital. He is a great performer, but what kills me is his theory knowledge. He has been transposing songs for me ever since he learned different key signatures (I don't even know if that is what they are called). His teacher (she is wonderful) is big on theory and James just seems to get it.
The room looks like something out of the Pottery Barn catalog, no? Very beautiful.
I have tried so hard not to let my kids get behind in piano these last few weeks. I feel like I just can't let this one go. When my cancer came back in the leg last year, I thought long and hard about what I want to accomplish with my kids. It was also the time my sister bought me the book Battle Hymn of the Tiger Mother, and after reading it I felt sure that piano was something that would fit many of the things I wanted to give my kids. It gave them a skill, something to be proud of, something we could work on together, something challenging, something that they could always have. But mostly, an outlet.
I find myself, particularly in times of distress, staring at the piano and wishing so badly that I could pound out what I feel. That I could give my feelings a voice without having to speak. I am missing some way to express myself. Josh also feels this way. We have always said that our kids would play, but that book changed my attitude toward the whole thing. I don't expect them to be concert pianists or anything, but I do expect that when it's time for piano practice, that they be serious and don't waste time. I expect them to get it right. I also expect them to fight with me about it. And I expect to win these arguments.
I hired a piano tutor for the boys for now, as I am not very consistent with their practicing. I have spent an hour almost daily helping these kids out, and it makes me sick to think that we could lose all we have worked for. There is Tiger Mother blood in me now, and my children will keep up with piano.
I asked some very talented and tasteful friends to help me pick out some new chairs and paint for my piano room. We needed to make it function also as an office for Josh to work from home when he needs to. True to these friend's nature, they went above and beyond. Today they gave the room a make over that brought me to tears, and had the kids asking if they could sleep in it tonight. I will get pictures up tomorrow. Last time I went through treatments the room was painted and decorated by my aunt and cousin, and was just the nicest gift ever. Something completely finished, not the kind of thing I pull off easily.
There are so many offers to help all around, it is very overwhelming.
I always feel so lucky and blessed. Always. I am so grateful for the people I am surrounded by. You name it, I have it. The best husband in the world (hate to brag, but honestly I am in awe every day at how he his holding it together). A large, very helpful immediate and extended family. Dear friends, the kind I could ask for anything. A neighborhood of wonderful people just waiting to help.
And my kids are dang fun. They got a hand-me-down flip camera phone from an uncle, and today have started to make some karate how-to-videos. "Everything but forms" James explained to me (I don't know what forms are). I mentioned if it was good enough we might want to share a bit of it on the blog. Their eyes got very big. I really hope you get to see how serious karate can be. Yes, think Napoleon Dynamite.
We played with photo booth a little today and couldn't stop giggling.
So, I am feeling like 95% today. Yesterday I was sick and tired (and oh, so pale. I was terrified every time I looked in the mirror). But woke up at 6:30 today ready to go. Tuesday really is the magic day I guess. The water is almost gone now, and I might try jeans tomorrow.
I am certainly coming out of a strange fog. Monday my sister came down to help, and we started to figure out how much I really don't remember about last week. I couldn't remember her at my house with her kids when I got home. I didn't remember which neighbor brought dinner over, or that anyone brought dinner at all. A friend came over and asked how my tounge was, and said that it looked so much better than when her sister saw it. What? Her sister saw it? I haven't seen her sister since. And so, as my sister spent the day with me I discovered I remember almost nothing, just like they said I wouldn't of my week at the hospital.
Josh says I was involved in all conversations, watched movies with him, commented on everything, talked to everyone who came. Made friends with the nurses. Acted very appropriately. Drowsy, yes, but he would never have guessed I would forget it. I seriously can not even remember where the bathroom in that room is. I had him tell me the plots to the movies we watched, and they were totally unfamiliar. I am a little more than creeped out.
The only thing I vaguely remember is a male nurse asking if I wanted a shower or sponge bath, to which I replied I didn't need either one. However, I just unpacked my suitcase this afternoon and pulled out 10 pairs of clean underwear, and 0 pairs of dirty underwear. Gross! Josh has strict instructions to drag me to the shower against my will. He says lots of things are going to change now that he knows how this goes down. For starters, he will be choosing the movies.
I also learned what I missed by being away from home. The boys had a piano recital and a chance to play their songs for the judges. James claims he made no mistakes (the score may prove that). And it was his Beethoven song I have loved so much! I missed Sam and Luke's baskets they made on Saturday at their games that made them so proud. I missed Sam getting up in church and bearing his testimony, and James getting up after him apparently starting off with something like, "I didn't want to get up here today, but...." I just want to be there. Which is pretty much all I'm asking out of life right now. Or somewhere at least. I don't have time to just be forgetting entire weeks.
So I am planning my next stay at the hospital. Josh ordered me a MacBook which arrived today for the purpose of sorting though our never-been-organized family pictures. I figure I am going to spend my time making cute family videos and then surprise myself with them when I come to my senses.
I have been meaning to get an update in here. But things are a little...crazy lately.
You see, when you are at at the hospital, they do a pretty good job of knocking down your symptoms in like 2 minutes using powerful drugs that are given directly in your veins, just as soon as you have a complaint. That is pretty wonderful. And with all the anti-nausea medication, and demerol (for rigors), and scheduled ativan(for fun?)...you plain don't know much about what is going on (this is a good thing, because all you miss is you feeling rotten). And that is why I had Josh do the updating in the hospital.
But why I insisted he dictate a small message from me the night I got home++++ (while still under all influences of drugs) is just...funny. I wondered why Josh was smiling when I got to the 'explosive diarrhea' part. I'm sure you all appreciated that.
We are home. We are okay. Walking out of the hospital was very strange with all that weight sloshing around and my legs rubbing together and wobbling. I was very off balance. Josh has had to recover me from the bathtub from which I may have tumbled into (unhurt thanks to all the padding). I will have to take pictures next time. I have lost 10 lbs just today.
Strange to feel old in a young persons' body. To be fat in a thin one.
We put a little post-it-note on the door bell when I got home that says "Alisa is resting, please try back later." It hasn't moved. I still feel quite ill. At the least, very tired. They assure me that around Tuesday I will be very much back to normal.
So I wait until then. And try to enjoy a few rays of sun February is so uncharacteristically spilling all over my kitchen, and few of the boys jokes constantly running through the hallway. I have even had some very wonderful, long, naps, to which I have been lost in some of the very best dreams I've ever come up with. Hoping these are still the real parts of me, and not the drugs talking.:)
We are home tonight, recovering from a very long week. I have gained 23 pounds of water dispersed throughout the body, there is fluid in my lungs, thrush on my tounge, I have no appetite, explosive diarrhea, my skin is red like a sun burn and itches everywhere.
I know these are good signs, it means my body is attacking my body, this means my body is on high attack. Through the high fevers, rigors (uncontrollable shivering,) and confusing times, I could hear myself say, we can do hard things, we can do hard things, and often times I wanted to say, SHUT UP!
Alisa has been pretty sick all day. Nothing specific just feeling rotten. up to this point she has had 9 doses. If she gets another on Friday we will not be home till Saturday. If they determine she has had enough there is a chance we are home Friday night. we will not know until we see the Doctor Friday morning.
The boys came to visit this morning, it was good to see them. I think they were happy to see their mom.
Here is James' take "it was really nice to get to see mom, but all those cords were creepy. I didn't like those"
Alisa has been feeling...sick...the doctors and nurses are happy with the results so far. It is a strange situation. They want Alisa to get sick, but they treat the symptoms so she doesn't feel as sick. They are telling us everything is going as expected
Alisa will get her 7th dose of IL2 at midnight. I think they are hoping to get at least 10 doses in this week.
She also wants me to mention that she has gained 10 pounds (water) and her skin is bright red (side effect of the drugs)
