Moving right along at last!

Here are some great pictures of Fiona from New Year's Day, when at just under nine months she was already a pro at cruising around furniture and was starting to enjoy walking while holding on to a grown-up's hands.  She has since really moved right along in the walking department and now that she is 11 months old she can take about 5 steps on her own.  It is soooo cute, of course!

It was really funny: a couple of weeks ago a friend took the kids for the afternoon and when she returned with them, her 6-year-old son said, "The day was great.  I'd rate it a 10.  No, I'd rate it like a 3 billion.  It was so fun.  Fiona took three steps."  My friend's eyes got wide and she said, "I told you guys not to tell her mother!"  She explained that Fiona had been very motivated by their dog and had taken three steps and she had called Miles in to see, but he missed it.  She asked Miles if Fiona could walk and when he told her no, she swore her kids to secrecy.   Who can blame her son for blabbing, though?  I mean, when you witness something so astoundingly adorable, you just have to share!

But on with the news anyone who actually reads this blog wants to hear....We are moving forward on the "cancer" front as well.  We finally have a firm schedule and can say with certainty that treatment is starting this coming Tuesday, March 17th.  What a relief--the sooner we begin, the sooner it can all end.

I wasn't quite right about my timeline before--while I will be starting St. Patrick's Day and losing my hair around April Fool's Day, I won't be all finished by July 4th, because there has to be a break for a few weeks between chemotherapy and radiation.  So chemotherapy will be finishing up around the end of the school year and radiation will be ongoing (five days a week) throughout most of July.  I should still be done in time to attend my annual family reunion in Lake Tahoe at the end of July!  (This was of course the burning question for my cousins....)

One of the biggest concerns I've had throughout all of this was whether my fertility would be preserved.  We are pretty intent on not being done having kids.  I expressed this several times and was always given vague answers about how today's treatments for Hodgkin's Disease don't affect fertility as much so hopefully things will turn out.  I was also told, "Just remember, you have three beautiful children."  What, did someone actually think I could forget about my three existing offspring?  Of course I am super grateful for them!  And I understand the "worst case scenario" is that we don't have any more kids, and I recognize that we have a very respectable little family and I feel blessed and happy.  I know that nowadays, especially where we live, it's somewhat uncommon to have more than three kids, but it's just that we feel like we're not done yet.  I would hate to go through all of this and be told our chances of having more are not good but there was something we could have done about it had we only known.  I was looking for some kind of percentage or something that would help me understand the situation better and information about what our options were.

The oncologist and nurse are WONDERFUL by the way, so I am not trying to speak ill of them; I just don't know if we did a great job of communicating to them how very important this is to us because whenever we brought it up they'd say, "Oh yeah, we are going to talk to the fertility specialist about that--we just haven't done it yet."  They mentioned that sometimes women are given a Lupron shot to help protect fertility and that if I did that it would have to be before treatment.  I imagined perhaps an appointment was necessary for said shot, so I really thought they ought to be giving me the information about it pronto.

Finally a friend convinced me that I ought to ask to talk to a fertility specialist myself.  What a great idea--the type of thing I should have thought of but my mind is too jumbled up right now.  Thank heaven for wonderful friends!  I will dedicate a whole post to that some other day because I have so many stories about how incredible all our friends and family are.   So I left a message on Wednesday asking if I could talk with someone, and on Thursday the nurse called to tell me an appointment was set up for us for Friday.  

After the appointment yesterday I felt so much better.  I now have more of the information I was looking for.  I had wondered about the option of removing some eggs and freezing them, and she went over that with us.  Doing so would be very expensive and would push cancer treatment out another month, and in our situation doesn't seem to be a sensible option.  I had imagined that chemotherapy might damage my eggs in such a way that it might be wise to have some pre-treatment ones on hand; as it turns out, you either come out of treatment with pretty normal fertility or you don't.  It isn't a matter of damaged eggs, more just number of eggs available.  It is likely that I'll hit menopause earlier than I would have, but I have a higher than 80% chance of it not being right away.  It is reasonable to assume that at not quite 32 and having conceived easily in the past, I am in a pretty good boat.

That was the kind of number I wanted to hear.  We feel like it's high enough that we are willing to proceed, knowing that there are no guarantees.  She is also going to look into what other doctors have said regarding chemo and the Lupron shot, which would put me in a pseudo-menopause with the idea of preserving the eggs I have throughout treatment.  Apparently some think this has merit while others say it doesn't really do much.  I am leaning toward not doing the shots because I don't want the added side affects of menopause-like symptoms in addition to the exhaustion and possible nausea I will already be feeling.

That was another little bummer--finding out that I could experience some nausea after all.  They give powerful anti-nausea drugs, but the drugs wear off a couple of days after treatment, and some people then feel a little bit ill for a day or two.  We will hope for the best.

The other thing the specialist mentioned which I liked was that I can have a simple blood test that measures fertility levels and then have it again later during or after treatment to see how much it has changed.  At that point I won't be able to change anything, but I will be able to get an idea about whether/how much these levels have dropped.  

She mentioned that often doctors want patients to wait 3-5 years after treatment before becoming pregnant because they want them to be monitored with things like CT scans, which shouldn't be done if a woman is expecting.  We had tentatively talked about the idea of having a break between Fiona and our next child, and now it looks like we may have a forced break.  If we had to wait a full 5 years, we'd be having another baby when Fiona turns 7 and the boys are about 9 and 12.  That is kind of interesting to think about.  The upsides would be that the kids would be old enough to help with a baby a lot and we wouldn't outgrow our house for a while.   The downside would be that I'd be almost 38, so if we wanted one more after that we'd be pushing 40, which I know is not unusual these days but it does sound a little tiring to us.  We started at 26 and our energy level has already dropped a lot in 6 years!  Those kids just sap it out of you....I mean that in the best way possible.  ;)   I will ask the oncologist next week what kind of timeline she will recommend, and we will certainly go by whatever she says. 

Just being in the fertility clinic and looking around at the reading material and the people and hearing about in vitro treatment from the specialist gave us a tiny little window (a miniscule, foggy window, I'm sure) into what that process must me like.  We gained an even greater appreciation for our dear, dear, dear friends and family who have struggled with these issues.  One of the best things that's happened during this whole wretched month--days of waiting and agonizing over child care and treatment options and the unknown--was a phone call from a good friend who wanted to tell me she is expecting twins.  She and her husband have a daughter in kindergarten and have since then had several failed attempts at treatment in addition to getting on an adoption list.  (We were privileged to be part of the process as contacts vouching for their excellent parenting skills.)  I just sat there and cried and thought back to another family we are close to who also called with the same exact news almost five years ago.  Then I thought of some other friends who have adopted their two children and how thrilled I was for them too. Those occasions stand out in my mind as times when I have cried some of the happiest tears in my life.  Children are such amazing blessings, and we are so fortunate to have friends who truly exhibit an understanding of that fact and who treasure their beautiful kids.

It's been surreal getting a schedule set up for the coming weeks and talking with friends who are helping to coordinate our life for a little while.  I worry about the children being farmed out a lot, but I think this will be a good opportunity for them to see that there are so many kind, caring people out there to help them through good times and bad.  People keep telling me that the kids are so young they are not going to remember much of all this, and I hope that is true.

When we got home last night I was pleasantly surprised to find I was hungry.  When I am stressed out, I lose the desire to eat.  For the last month or so, I've been eating only because I know it's a good idea.  I realized if I'm feeling hungry again it means I'm feeling less anxious.  I think once I start chemotherapy, it will be like I am finally on the road to conquering cancer.

It has helped a lot to just sit down with the calendar and write in everything I know is happening and all the things we need.  I realize I've been pretty scatter-brained and overwhelmed the last several weeks--much less "on top of it."  It has made me see that life's hardships can really affect how a person functions, which in turn affects their family.  I try not to be a critical person, but I think this experience will help me be more successful at withholding judgment.  We don't always know what someone is going through, and even if we do have a label for it, we can't internalize it because we haven't been there ourselves.  We honestly can't imagine what someone else's situation is like or how difficult it is for them to shoulder that burden.  We have to be compassionate and willing to help, period.   I am not sure why this particular trial is helping me to get that more than some of the other difficult things I've been through; I think perhaps it is because with three small kids I have a lot more people and logistics to worry about than I did in crises past (thus more opportunities to "drop the ball.")  In any event, I am grateful to be learning the lesson.

This afternoon we attended a variety show put on by the teen-agers of our church, from Los Altos all the way down to Santa Clara.  They were darling and it took me back to when I had the opportunity to participate in that myself.  The same talented woman has been heading this up for years.   She has been one of those "life mentor" people for me.  An administrator at Pinewood School, which was started by her parents, she gave me a job at 14 as an assistant teacher in summer school, and she really convinced me that I would be good at it!  Because of my years of experience there in high school and college, I knew that teaching was the profession for me and was more "at home" in the classroom when I began my internship in college than I would have been.  

Several years earlier, one of the many dramatic productions she led was at a church party when I was a kid and we were to sing Moving Right Along from The Muppet Movie.  As most people know, I've always adored being on stage, so at 8 years old I was devastated to miss out on this performance due to chicken pox.  (I also missed the class puppet show and what would have been my first time ice skating with the Girl Scouts.  Scarred me for life!  Amazing what you can recall even if you do forget some of the major things, like we hope the kids forget Mom's bout with cancer....)  My mom walked in on me one afternoon when I was pretending to perform it and I was so incredibly embarrassed.  I think I put up my hand yelled at her something similar to what Philip says when he's feeling humiliated: "Just--don't--talk to me right now!"    

I still remember the words (and actions) for that song and I've been thinking of them tonight:

Movin' right along in search of good times and good news,

With good friends you can't lose,

This could become a habit........

Movin' right along

Footloose and fancy free

Getting there is half the fun, come share it with me.

Moving right along

We'll learn to share the load.

We don't need a map to get this show on the road.

I feel like we're finally moving right along, even if it is with wobbly baby steps like Fiona's, and it is the help of our friends that will get us through!  And we can sing and dance and laugh and cry along the way.  Then, when we are steady on our feet again, we can be available to help others.  I think this is one of the main things we are supposed to learn in life.  Hooray for all the experts around us!