Expecto Patronum.

Some days it's just harder than others to keep the dark thoughts away. 98% of the time, I can control the thoughts, and honestly, with the kids and up until two weeks ago, treatments, I just didn't have time to entertain these thoughts for a prolonged period of time.  I've had my bad days, as I've said before, but they are few and far between. Today was one of them. Maybe it was the headache I woke up with that helped it along but today was just a sad day. On top of that, because I am a masochist, I decided that it would be a good idea to catch up on Matt Logelin's blog...really? Because all I did was sit there and sob and see that I could be the one in his wife's place - the one written about, the one remembered, the one who's child needs to ask about her, ask for hints of memories, of voice, of smell, of love, instead of just running up and hugging her. And I know that this could be any of us at any time, I do. It's just a constant struggle of the mind.

I imagine with radiation starting up soon time will fly again and there will be less time for the dark thoughts to enter... but I have heard numerous times that it's the aftermath, the time after treatment, even when you get the all clear...that time is the really hard part. I believe it.

I think I'm going to go work on conjuring my patronus now.

Just here...

I believe the last time I went two weeks without any doctors appointments, for me or the kids, was, oohh, about seven months ago. Very odd, to not have a nurse sucking blood from me, to not have any follow-ups, no chemo, no surgery, no nothing. Believe me, I know this won't last. I almost sort of don't know what to do with myself. So, here are some recent pictures to enjoy. Have a wonderful Friday and weekend!



California sunset



 



My ham of a son who I.had.better.be.taking.a.picture.of.too.or.else

Four months old and getting bigger every day...but still teeny



 

Happy Valentine's Day and a thank you

A Happy Valentine's Day to you all...as much of a commercialized holiday as it is, I hope you all take the time to hug those you love a little bit closer today.

 

 

I brought these cupcakes to chemo yesterday as a thank you to the nurses. I have had nothing but good experiences with all of my nurses, chemo nurses, clinic nurses, surgical nurses and L&D nurses. I would give them all a cupcake if I could, so if any of you Kaiser nurses are reading this, thank you so much - for pulling for me, for the baby, for being so nice and doing a great job. It has been very much appreciated so far.

Watchers.

I believe that I have family watching over me. I always have. I've been the kid that wanted to be able to talk to and see ghosts for as long as I remember but alas - never happened. But I truly believe that all of the family that went before me, even those I never met, watch over me, and they are in charge of different things. One time in boot camp (don't get all Alyson Hannigan on me...I said boot camp, not band camp), I wore the wrong boots. In boot camp, that is not a fashion faux pas, that is a major infraction and I was terrified when I realized my mistake. I sent a request up to my cousin Johnny, who was a Marine killed in Vietnam when he was 18, 6 years before I was born, to please let the drill instructors not notice my boots and to let me be able to change them unnoticed. The DI's looked around to make sure we were all in our IBC boots, which I was not, I was in my jungle boots, and.... they didn't notice me. I was able to safely change my boots without having to go to the quarterdeck and I fully believe to this day that was Johnny's doing. I have many many watchers (I'm not quite sure most of the people in my family can be referred to as angels :) )

I started chemo on July 23rd, my uncle's birthday. I finished chemo today, February 13th, two days before my grandfather's birthday. These were the two men I was probably closest to for most of my formative years. My grandfather was my everything for a very long time. I idolized him until I grew a little bit and realized he was just a person with person faults and foibles, and lord knows I did not like some of his viewpoints and let him know it. We were the only two Aquarians in a family of Leos, so we had to stick together from early on. I can only imagine had he been able to meet my kids. He would have loved Jack but he would have been enamored of Amelia. My pop-pop died an exceedingly painfully slow death of stroke induced dementia - it was a long long ten years that I would never wish on anyone.

My uncle on the other hand, we could fight like cats and dogs. He was 18 when I was born and mentally probably a generous 16 so we sort of grew up together as a weird brother/sister kind of relationship. Oh, that man irritated me something fierce quite often but we shared many adventures and he loved me more than most, of that I am sure. He died of complications of type 1 diabetes that he had for over 40 years.

I know they have been watching over me and I pray that maybe since they helped the first chemo work so very well, they helped this one work as well too, and will help the coming radiation zap anything it is supposed to. I pray that even though I know they would be so happy to have me, they know that I am so very needed down here for these two small children. I pray that my Aunt Elaine, who I loved so much and who was so fearless in her younger days knows how much I have to do and want to do and and sends all of her goodness down into this medicine to make it work, and sends me the strength that she had in her painful older days. I pray my cousin DeeDee, who I know so desperately wanted to see her own 5 kids grow up, knows very well that 38 years, while generous compared to some, is not nearly enough time, as it wasn't for her, and sends her faith and good thoughts to work down here. I know that they, and all the others up there, know that I have many many more promises to keep, and so many many more miles to go before I sleep.

Mile 20.

Isn't that the time in a marathon where you've been feeling really good but then the fact that you are actually running in a marathon hits your mind and body and legs turn to cement and the mind needs some serious focusing? (Christie, am I correct?)

I ask because while I have learned that you really should never say never... I will nnneeeeevvveeerrr run a marathon, therefore, I am not 100% sure of my reference. But anyway, if I am correct, that is where I am. I seem to be at my mile 20. Wednesday is my last chemo. Preferably forever (I have really come to detest the word hopefully. It seems like such an impotent word to me. Hopefully. It just seems like takes all of the power and control away, and while I realize those are illusory anyway, still, I don't like the word anymore). Anyway, I digress. Last chemo on Wednesday. I've made it through the soon to be 16 rounds of chemo, the delivery, the surgery, the 24 weeks of labs I've had drawn, the 12 weeks of picc line, the MRI's, the CT scan, the innumerable doctor's appointments. Now, not for a month or so, but still, now.....radiation. And I was told today it may not even be 6 weeks, I may be looking at 8 weeks, just because of my age, the severity at which I presented, being triple negative, etc. etc. That's going to be my miles 20-26, where I need to dig deep with just the goal of reaching the finish line. After that, especially for the first three years, that's going to be my .2 miles. The part that seems the easiest, but in reality is the longest .2 miles you will ever do, the .2 miles that stretches on to the horizon - the finish line fuzzily visible, but nowhere near tangible.

Sick and tired.

Can I just say, I am so sick and tired of reading about younger women with cancer! Me included! Let me rephrase...I'm not tired of reading about these people, I'm tired of there being a constant and seemingly growing pool out there. Why is this happening? I just read a story about a 35 year old woman, diagnosed at 31 and now with a recurrence of Stage 4 metastasis. I have met a few pregnant with cancer moms on the internet...one is the same age as I am...one is 25! This is completely ridiculous and unacceptable. I know people have been getting cancer forever. I know it's not an "old person's disease". I know these things. But I also know that it seems like the growth in the cancer rate for people in their 20's and 30's has jumped considerably over the past decade or so and it just about makes me sick (yes, I get the irony in that statement). It troubles me on so many levels.

One- what is causing this, what can we do, etc etc. The fact that my cancer is not BRCA positive, and that even though I have a family history, my cancer is a different type, much more aggresive, at a younger age, leads me to believe it's a least partially environmentally caused. I'm trying to do everything I can to chemically cleanse my house and myself, but I'm only human. I will do the best I can.

Two - Will there ever really be a cure? I hope to God so. But honestly, growing up around people who had chronic illnesses, I've been of the thought for a long time that for the drug companies, it's much more profitable to never find a cure for certain things, cancer included. I hope and pray I'm wrong, I'm not convinced I am, even being on this side of the fence where a cure would mean everything.

I guess now, I fight the best I can, I do the best I can, and I do everything I can to ensure that in the future, the number of news stories dwindles considerbly, and that my daughter is never, ever the subject of such a story.

Just some thanks.

What a beautiful day today, the sky was just a perfect shade of azure and you couldn't help but be awed by it. Spring seems to be coming. If you've read anything about me so far, you know I pretty much detest the heat, and love love love fall and winter. The coming of spring never really excites me but I must say these days the turning of a new season is cause for joy and appreciation. Catch me again to see if my attitude is still the same when the temperature hits 90 but for now....

We will see if the night ends well in a few minutes when this game is over...aaagggghhh! The whole season has been nail-biting like this.

One and a half weeks left of this picc line I am surely grateful for. I absolutely cannot wait to have this out of my arm. I am also so so very grateful for my wonderful mamas group who provides milk. I was running very low about two weeks ago and I absolutely hate to ask for more when they are already providing so much. Luckily maybe Erin sensed that and that night asked if I needed more now and more in general. So grateful for a fuller freezer. Little girl is too.

Healthy?

I went to physical therapy today just to see what I could do to get this last bit of motion back in my arm and to get any pointers they had for keeping loose during radiation. I also wanted her to see this Madonna tendon I now have - you know those gross tendons that stick out on Madonna's unnaturally ropey underarms? Well, I have that under my arm now and it is about freaking me out. Anyway, the physical therapist made a comment that took me aback but was actually something I've been thinking about lately. We were talking about something, I think future exercise, and she said well yes, you're young, you're healthy. And I almost burst out laughing because you usually don't refer to cancer patients as healthy I'm guessing. But last week when my husband and entourage (kids, strollers, dogs) were walking home from our afternoon walk, and I was doing my fast walk, I said "Hmmm, if you didn't know me, you wouldn't think I have had two major surgeries, am in the middle of chemo and have cancer, huh??" Because honestly, I feel like the healthiest sick person I know. I walk most days of the week, the only tired time I have is chemo night from the benedryl (well, other than being tired from two kids, but that is what it is), I've not had nausea, vomiting, pain, anything really other than lost hair, some thinning of my nails, and, well, actually that's about it. My blood pressure, when I'm not on this chemo, is pretty low. My weight could use a lot of work, but I'm not even starting to attempt anything until I'm off of these steroids. I eat relatively healthy and am getting better and better. I rarely rarely drink and since I've been pregnant and on chemo in the past year, I haven't even had one drink in at least that long. I don't smoke unless I'm in Europe, which has not been since 2008 (that needs to be remedied). Other than this cancer thing, I am actually pretty healthy. It's just a juxtaposition I still can't quite wrap my head around.

The Infusion Center

When I go to chemo, it's not like in the movies. We don't all sit together, yukking it up and sharing pot brownies. (Ummm, yeah, the movie 50/50 - good movie but no, you don't sit in a school circle and seriously, where are my pot brownies people? I have never seen anyone leave a batch by the coffee machine and I must say, I'm a little perturbed by that. I brought in cupcakes two weeks ago but there was nary a bud in the batch.) You each have your little partitioned "room", people sort of look at each other as they pass by but that's about it. I do know all of the nurses by now and joke around with some of them, last week I was almost crying because this older gentleman was singing. I asked my nurse, Is someone singing? She goes, I'm so sorry, he has to sing or talk, he says it helps him infuse better. We were laughing so hard we were crying - I don't know, things are weirdly funny in chemo.

I guess that's why what I saw last week troubled me so much. When I go to chemo, granted, it's still mostly older people. Everyone is obviously there to get some sort of infusion - chemo, blood, platelets, whatever - so everyone has something pretty seriously "wrong" with them. But honestly, I've not really seen any very "sick" people. Older, slower people yes. But very sick people, no. But last week a gentleman walked in with his wife, girlfriend, not sure - a female companion. I'm guessing they were maybe a few years older then me but this is Orange County, so honestly the woman could have been anywhere from mid-30s to mid-50s. And I could tell that he was very sick, and it almost broke me. Looking at me, or most people, you can tell we have cancer by the hair, but that's about it, you can't really tell what kind with most people. This gentleman looked distinctly like he has some sort of brain cancer - it hits your eyes and face in a way others don't - and I could hear him talk - very muffled, slow, and difficult to understand. And it made me so sad, because I could see that the lady with him loved him, and that this was not a good road he is on, and honestly, it brought death into a room that spends its days fighting it. And I caught my nurse's eye as she went in to prep him for his infusion, and I could see it in her eyes too. And I pray for him. And I hug my kids close and I thank God for allowing me to put up a successful fight so far.

One more year.

Well, I've made it to 38.

Let me rephrase... most of me has made it to 38. :) And let me tell you, 37 was a hard fought year. I will never again bemoan a birthday (I may still bemoan a few gray hairs here and there but I'm only human.) I will very happily and gratefully take all of the birthdays that I can get. It's so hard to wrap your head around the fact that none of us are promised any more birthdays at all. It's something that I understand much more sharply now, and that seems to be the only way to learn it, because even after you lose people close to you, even young people, it still doesn't hit you, because you know, those things only happen to other people. It's human nature, this self-protection.

So - I will cherish this birthday and any and all others that I am so blessed with, and I will truly know what a gift they are - they are all the gift I need.

Hot in here...

Not only do I not get to partake of the wonderful caloric benefits of nursing this time around, the steroids I get make me gain weight. It's so much fun to go to chemo every week, get on the scale, and see a pound higher. So I get to be disfugured, post-partum, fat, and on top of it, really frickin hot! I don't know if this is a common side effect or not, and this is not hot flashes, this is "I feel like it's 95 degrees all the time, regardless of whether it's 78 out like it has been the past two days, or whether it's in the 30's at night". Fun! I am literally kicking off sheets and sweating when it's about 55 in our bedroom at night. I am convinced the baby is burning up because I can't quite get the fact that it's only me that feels this and that everyone else is feeling rather wintery (well, minus the past two days). Thank goodness my hair is growing out and if I'm feeling rather kicky I can go without a hat because when I go for my daily walk I come back and am sweating through my inch of hair.

Okay, that's enough complaining...what I'm thankful for: that those same steroids that are making me even fatter seem to also be keeping at bay the lovely cooties my son has been bringing home lately; that I truly hopefully only have three more weeks of dealing with this picc line because we are just not getting along anymore; that we do have a relatively easy baby with all of this other stuff going on, and that her sweet face and smiles give me something to look forward to.