Down for the count--New Drug New World

I am so sorry it has taken me so long to write.  In my defense, I have cancer. :)  My brother tells me I need to be using that excuse more often because soon I won't be able to and its pretty much infallible.

I have wanted to write numerous times and had many things to say, but this new chemo, Taxol, is kicking my tail.  Taxol is the chemo I could not take while pregnant, and I know why--it is very very rough on you. It is a word I will not forget for a very long time.  There is no nausea or gastrointestinal impact at all, rather there is severe debilitating bone, muscle, and joint pain.  I have tried to figure out how to describe it.  The best thing I can come up with is take the pain you have the day after you've "done too much."  I don't mean that good feeling from a good work out, but the leg/knee pain from helping a friend move apartments and it lets you know your age.  Add that to the worst flu you can imagine and the aches that come with it.  Then, if any of you remember the leg aches you got as a kid throw that in.  Put all three of those together, times it by 3 and you'll be close.  Oh, and add someone stabbing you with a screw driver over and over.  I know that sounds really melodramatic, but it is truly 100% how I have felt these last 3 chemos. Yep, three. I have done 3 and ONLY HAVE ONE LEFT!!  We'll talk more about that later, back to the pain.  I was given the strongest pain meds you can get and they truly did not take away the pain, just took the edge off. I still wake up from the stabbing pain in the night.  I have chemo on Tuesday morning, then the pain starts during the night on Wednesday.  Thursday through Sunday I am in overwhelming pain, just trying to function.  One of the more annoying parts of  the "bone pain" is in the sternum it feels like the worst heart burn you've ever had. You can swallow a bottle of tums, and it will power on.

On top of that, it causes peripheral neuropathy.  My hands and feet are numb and tingly.  It makes typing very difficult and I am wobbly on my feet.  It is very annoying and I hope it goes away.  In some people it can stick around; I am praying mine goes away.  Lastly, you get hot flashes.  That is actually from the medicine they use to mix the Taxol in, so I shouldn't blame the Taxol really--but it still happens. I can now say I understand menopause a bit better.

As I mentioned, I have already had 3 rounds of this chemo and only have one left. In one week, I will have my last dose of chemo, number 10.  It is surreal.  I feel like as fast as it came into my life, pushing me into chaos, it is leaving.  In a very strange sense, I will almost miss it. Almost. I am sure that sounds crazy, but it has become my routine.  Since November, over 5 months ago, my life has revolved around my chemo appointments and side effects.  The nurses in the infusion center have become good friends.  They have been integral in my sanity through all this.  And then boom--you are done.  Its not that my cancer journey is even finished.  I still have a mastectomy, radiation, and reconstruction to deal with.   But, as I talked about before, closing these chapters is hard.

I attend a support group (I highly recommend this for anyone going through this) for women with breast cancer with young children. Very specialized groups they have.  It is extremely helpful.  The other women have talked about how when they were finally finished and went to their last checkup with the oncologist/surgeon/radiologist they weren't sure what to do with themselves. You mean no more weekly appointments? No more poking and prodding? Who will I talk to if I don't go see the nurses every week?  They say for a bit, their life feels empty--like they are missing something or forgetting something.  I am sure I am going to experience that.

There is much more to say--but it will have to wait until tomorrow. I have an unhappy baby crying for me. 

It's not a secret

One thing that has caught me off guard with this journey is how many people either ask my permission to "share my story" or apologize because they told someone about my cancer.  Please do not apologize if you have done this. I understand you were doing what you felt was right or appropriate.  Perhaps for another person, that would that would be the case--but for me, I am proud.  I know that sounds crazy.  I am proud to have cancer. It is not that I am happy I have cancer, it's that I am proud of the journey I am taking.  I am proud that I will kick cancers butt. I will go on and do many other things. And, yes there are days where I want to (or do) lay in bed all day crying.  But, there are days where despite feeling physically like crap, I feel more empowered then I have ever felt.  As I said in another post, I view this as the first time in my life that I will do something that is difficult. For the first time, I will look back and know I accomplished something, I survived something, I conquered cancer.  Nothing can take that away from me.  So, please scream it from the roof tops--tell everyone you know. I have cancer and I will beat it--

He makes his debut . . .

Monday, March 31 at 1:26 pm my son made his debut.  It was a new experience for me, as I had delivered my first son vaginally--I can tell you a c-section is not even close to similar.  It's very strange in fact--clinical not magical.  But, he came out and he was cute from the get go. He was a bit puffy, as my blood pressure had been low so they pumped me with 3 liters of fluid before the c-section, which of course puffs the baby up as well.  Because of this, his birth weight is a bit inflated, at 6 pounds 10 ounces.  He quickly lost 6 ounces, as most of it was water.  But, either way he was a healthy weight.

What was hard, what I wasn't expecting, what hit me like a freight train was shortly after birth, my son had to be admitted to the NICU and intubated.  I will never in my whole life forget the moment the NICU doctor came into my recovery room to tell me.  Sometimes, and especially in moments like these, I wish I hadn't studied health and nutrition. I wish I didn't know how bad that is--that I was ignorant of the ramifications of needing to be intubated at birth. It would be so much easier.  But, I do know--I know of the negative side effects of intubating. I know it is not a decision that is taken lightly, and for him to be intubated, is a big big deal.  She said she imagined he would be in the NICU for 2 to 3 weeks. My heart was in a million pieces.

I was stuck in the bed for the next 10 hours. I couldn't move. I couldn't go see him. I hadn't even held him.  All I could think was, "What have I done to that poor innocent child?"  All of this seemed like it was my fault--he would not have been born at 36 weeks if I hadn't gotten cancer. They tried to get me to sleep, but I knew I was cleared at 3:00 am to go see him and there was no way I was falling asleep.  I laid there imagining the worst. Nothing was as bad as what I had in my head.  My mother and husband went down to the NICU to see him.  I asked my mother to take a picture. I needed to see for myself what he looked like.  I needed to know.  It was upsetting to my husband, he wanted  no pictures of our son this way. I understood that feeling, but I had no choice. I needed to see.  As you would predict, it didn't look as bad as I had imagined, but it was still my son in an incubator unable to breath on his own.  It was a pain I can not describe.

Around 8 pm my room phone rang.  It was the NICU doctor who had come to visit me.  The sound of her voice made my stomach sink, what had happened?  However, she was calling to tell me that my stubborn, strong, and feisty son had fought his way back (including scratching numerous nurses and doctors) and after just 4.5 hours on the vent he was off!!  I could not believe it.  I had yet to see him, and he'd already improved to the point that he was off!!  He was now on what is called a CPAP--continuous positive air pressure. This is FAR less invasive and not as big of a deal.  I knew what this was--and was much calmer knowing that was the situation.  He was still not happy and NOT a fan of the CPAP, he pulled at it regularly, but he was doing better then anyone expected.  

Finally 3 am came.  I had called my best friend in California and made her talk with me late into the night.  The nurses came and gave me the evaluation to assure I could stand, move around, etc.  They got me a wheel chair and I was wheeled to the NICU.  It was very strange to enter the NICU for the first time in the middle of the night. All the rooms are darkened, with the incubators glowing soft lights.  Some incubators have the blue glow of bilirubin lights.  Its very ominous.

We came to my sons room.  It was amazing to be there to see him.  I wanted desperately to hold him, but that was not going to be possible for a while.    The nurse on duty kindly came in and lowered the incubator to my level in the wheel chair.  She spent the next 15 minutes talking me through everything. Every cord, every test, every detail of my sons first 12 hours of life.  She told me how he had already defied the doctors by fighting his way off the vent much faster then anyone expected. He was strong in spirit and physically. He had hit the nurses and doctors with his little limbs as they tried to put the different machines on him.  As a newborn, he was able to have his IVs through his umbilical cord. This is a huge bonus, as they can not feel it and it is perfect access.  It was hard to see his little wrinkly body, but I was able to reach my hands into the incubator and stroke his little head--he has so much hair.  I could touch his little fingers and toes.  I have no idea how long I sat with him before I was in too much pain and had to return to my bed.  But, as I left the nurse let me know when I was in his presence it was the calmest he had been.

The next few days all blur together. Me trying to recover from major surgery, all the while trying to visit him in the NICU when I could.  I was so exhausted and sleeping so much, but whenever I wanted to they would happily take me down to the NICU, day or night.  The nurses and doctors were amazing. About 24 hours after he started the CPAP, they called to tell me he was off!  He had again defied the doctors and fought his way back. He was breathing room air and fine.  He had however developed jaundice, a very common affliction in newborns and easily treated with special lights.  However, because of the jaundice, they couldn't remove the lines form his umbilical cord, so I couldn't yet hold him.  He was still struggling to keep his temperature up, so was still in the incubator.  But, he was progressing at lighting speed. Each time we talked to the doctor, their prediction for how long he would need to be there was shortened. 3 weeks, 2 weeks, 10 days, 7 days, etc.  Yesterday we learned, he will be coming home on Monday morning, having spent 1 week in the NICU.

He is now in an open crib, meaning he is managing his own body temperature, and he is off the bilirubin lights. Our last issue is eating.  He finds eating to be very exhausting and falls asleep during feeds.  It is a struggle to wake him up and get him to finish the bottle.  He also can't quite drink the goal the doctors set for him of 55 ml every 3 hours.  We had to max out at 45 ml.  He also is very inefficient at eating, a common issue. Basically, he swallows a lot of air.  You have to burp him every 10 ml to make sure he won't spit it all back up.  He is sleeping at an incline to be careful of reflux, another common issue.

We had to watch this video about taking your premature infant home. Most of it was not relevant to us, as they were talking about babies born at 23-33 weeks.  However, it was nice to hear that the thought of bringing home your baby from the NICU can be one of excitement, relief, and fear.  That is exactly how I feel.  I am happy he is deemed healthy enough to come home, but terrified to take care of him. He seems so much more fragile then my first son.  He is so small.  I am worried about so many little things.  I am sure the coming weeks these fears will lessen, just like every other new thing I have faced in my journey these past few months.  However, adding to the stress is the fact that my next hurdle in this journey, my last 4 rounds of chemo, start 7 days after he gets home.  That chemo alone is worrisome. It is a new medicine with new side effects.  So, for a second time, I will be waiting for the "bomb" to go off as the chemo settles into my system.  So we will have a new baby, a newly jealous 2 year old, and a very tired mom--it's going to be a serious trek through a minefield of emotions. 

Breastfeeding

For those who don't know me personally, you may not be aware of my chosen career.  I am a Registered Dietitian who has spent most of my career doing work in international nutrition.  Part of your training as a dietitian is about breastfeeding. I learned anatomy/physiology as well as techniques for nursing, ways to promote breastfeeding, and why it is important for both the mom and baby.  My first job out of under-grad was working for the Federal supplemental program for Women, Infants, and Children--often called WIC.  I am a HUGE WIC fan and view it as one of the Federal governments major successes.  Part of that job was supporting and promoting breastfeeding.

As I moved my career abroad, breastfeeding took a larger role.  There are numerous resources that can tell you why breastfeeding is important.  That is not the purpose of this post, except to say I truly believe that breastmilk is the best option for a baby.  Early initiation (within one hour of birth) and exclusive breastfeeding for 6 months can not only saves lives, but save the economies of countries millions of dollars.

When I was pregnant with my first child, I was VERY stressed about being able to breastfeed.  I warned my two good friends, both with 4 children successfully breastfed even through all the problems, that they were to be on call 24/7.  They were my personal lactation consultants.  On top of the normal new mom fears, I have a family history to worry about.  Neither of my sisters produced breastmilk, most of my female cousins on my mom's side had issues, and my mother, her mother, her mother, etc  A long line of women who faced issues by either not producing ANY milk or could never sustain breastmilk or produce enough to exclusively feed.  Before any (what I call) breastfeeding Nazi's jump on my back claiming that they just were latching improperly or whatever, despite being vehement in my belief that breast is best, I also recognize that millions of women face challenges of not producing enough milk.  Sometimes it is due to latching issues, not offering the breast often enough, but there are also NUMEROUS health problems the mother can have and a few the child can have that inhibit milk.  Personally, in my maternal family genealogy--we have hypothyroidism.  I was diagnosed in grad school.  I take synthetic thyroid hormones everyday.  Other issues include medications that are needed for varying chronic health issues, insufficient glandular development in the breast, previous breast health concerns, hormonal imbalances, diabetes and pre-diabetes, etc.

With all this on my mind, I began my breastfeeding journey.  I was able to produce FAR MORE MILK then my sisters or mother, but not anywhere near normal.  The only major issue I faced was a yeast infection on my breasts that lasted almost 6 weeks before we were able to kick it in the butt.  I tried the teas and supplements for increasing milk with no success.  I had to start supplementing with formula by the end of the first month.  Despite all those issues, and the fact that I had to return to work at 2 months (another MAJOR contributor to low-milk supply as pumping NEVER produces as much milk as nursing), breastfeeding my son was more amazing then anyone could have ever described to me.

It's something you CAN NOT describe.  I wish I could put it in words. I wish I was an amazing wordsmith and could tell you what it is like.  All I can say is my favorite memories from my son's first year were when I was nursing him.  There is something both empowering and enduring about providing your child with all the nutrients they need.  It is SO convenient and easy to nurse your child (not at first, but once you both get the hang of it).  I loved that just whipping out my breast solved all my sons problems in one second.  I was the answer to his woes, no matter the problem.  I nursed him in public and private. I was never once subjected to harassment for nursing him out and about, but I had all my responses ready if someone were to say something.  I even got to travel with my son to Ethiopia for work and nurse him there, at 3 different airports, and of course on planes. I loved it.

I also ended up doing something I swore I would NEVER do; I co-slept with my son. Once I had mastered the art of lying down and nursing, putting my son back in his crib became too much effort.  My husband and I, though nervous at first, soon fell in love with co-sleeping.  To this day, we both love sleeping with my son. He is now in his own bed, a painful process, but nights he has night terrors or when he is sick he often joins us and we love it (even though he takes up FAR more bed now and likes to have his feet on his dad and a hand or two on me all night).

Pumping was a sort of joke.  My work provided a wonderful pumping room, where you sat with other women. Though some women didn't like this, for me it was great. I learned a lot from these women and got to have a break 2 to 3 times a day.  The joke was the quantity of milk I could pump.  Any of the ladies I pumped with can testify, it was meager.  15 minutes of pumping would yield 2 ounces at best on each side. Thought it was disheartening to watch other women pump 8 to 10 ounces in 5 minutes, I kept at it.  I even laughed about it. It was quite funny. Me sitting there, drop drop drop, and another woman sitting there gushing until her bottle was full and fumbling to attach a new one and not spill it all over.  But, those ounces were very precious to me--liquid gold.  So I kept at it.

I ended up stopping nursing long before I wanted to, when my son was 10 months.  I got a HORRIBLE sinus infection and my son had a cold.  He didn't want to nurse, and as he had been getting a bottle at day-care including formula to fill in for my pathetic amounts of breastmilk I produced, he preferred to drink from that with his stuffy nose.  By the time both of us were better, my milk was gone.  It was really really hard. But, I knew I had done my best.

All of this is building up to pregnancy number two.  When we found out I was pregnant truly my first thought was, "I get to breastfeed again!!"  I was so excited to have a second go. I would be more confident this round and not call my dear dear friends in panic at each and every moment those first few weeks.  It was going to be amazing. I was going to breastfeed for as long as this baby let me. I thought about it almost daily.
Then--our world came crashing down.  At 17 weeks everything changed when I was told I had breast cancer.  My oncologist was clear from the get go, I would not be able to nurse the baby.  They know for sure that chemotherapy crosses into the breastmilk and they don't know how long it takes to get out of your system.  Some oncologists say you can breastfeed for a short bit before you start chemo again, but she doesn't feel safe about it. I get it--the last thing I want to give a precious and vulnerable newborn is chemotherapy.  But, of everything going on in my life--the thought that I can not nurse my son is by far the hardest thing I have had to face.  As my son is not here yet, I don't think I have yet truly faced it.  I don't cry as much when I think about it now, but I know when he is born, it will be very very hard.  I keep asking myself, how do you hold a baby and not breastfeed them?  How, sitting there with milk in my breasts, can I do it?  I know it is going to be incredibly difficult.

I feel like this little boy is getting the short of end of the stick in so many things, how can I deny him this as well?  This little guy has had to endure an unhealthy amount of stress hormones, 6 rounds of chemotherapy, and being born early via a c-section.  All of these are proven to have a negative impact on the growth and health of a fetus.  I feel like me not being able to breastfeed him is just adding to this list.  One more strike against him before his life really gets started.  He is innocent in all of this--in fact he is my hero. If I hadn't gotten pregnant, we wouldn't have found the cancer for probably quite some time.  Possibly it would have been found too late, much too late.  So, in reality I owe this little boy my life--but instead of repaying him I am giving him an incredibly difficult start to life.

All of these things have been running around in my brain since they day we learned about the cancer. And, this coming Monday--when this little boy joins our family, all of this will come to a head.  Not only will I have all the crazy emotions you experience post-delivery, but I will have this running around my head. I know, thinking about it, feeling guilty about it solves nothing.  I know millions of babies are raised on formula and perfectly healthy.  I know all of this logically, but emotionally this will be one of the hardest parts of all of this.
However, there is hope.  I am happy to say I have two dear friends who have had babies in the last few months.  Both have agreed to pump breastmilk for me.  It won't be 100% of his diet, but every drop will make a difference. This selfless and generous action in my mind is is impossible to compensate.  How do you repay women for giving your child something as powerful and necessary as the perfect food?  You can't.  

Hurdles

After the initial shock and crazy roller coaster of emotions of being diagnosed and then starting chemo, I have come to view this journey as a series of hurdles.  Each one brings new challenges and fears.  And, as my previous post discussed, I imagine between each hurdle life will come to a point of feeling normal then the next hurdle will toss things up for a bit.  Below are the hurdles as I see them:

1. Testing.  Perhaps the first one should be hearing the diagnosis, but I was sent into testing right away so I see them as the same.  My particular cancer is very aggressive.  Often people have weeks or even months before they start treatment, me not so much.  I had 11 days from diagnosis to first chemo.  I talked to the oncologist on a Friday, then had tests/procedures every day the next week from Monday-Saturday (yes on Saturday), and started chemo the next Monday.  It was a whirlwind time of emotions.  I would break down crying at the most random times--just shocked that this was happening.  How is this happening to me?!?!  But you just keep going

2. First Chemo/Chemo in Pregnancy.  That first chemo was terrifying.  It was because it was 100% unknowns and NO ONE could tell me what was going to happen. They could tell me what drugs are going to be pumped into me, how long it would take, and that I for sure would lose my hair--BUT no one could tell me what other symptoms I would get.  As I wrote in my post, it was like waiting for a bomb to go off.  After that,  chemo became my normal routine.  The nurses and doctors I saw weekly my new family.

3.  Baby.  This is a bit of a unique hurdle in a cancer journey, and is not of course DUE to the cancer, but a hurdle nonetheless.  Not that I consider my son a burden, but the fact that I will be either going through an induction or c-section in this weakened state is going to be new.  My energy level is so low, I can't fathom surviving labor and  I am severely anemic and my immune system is weakened so a c-section doesn't sound good either (not to mention the implications for my health and my baby's health long-term).  Then, a baby I can't breast feed will be coming home.  2 weeks after he arrives, I start chemo again--with a new born. That is why the baby is a "hurdle" in my process.

4.  New Chemo.  Two weeks after I give birth I will begin my last 4 chemo sessions.  They will be different. Not only will it be a new drug (with new side effects), but I won't be pregnant!  I am told quite often how good I look. People are shocked I look so good.  I don't know what that means--either I do look good or they are expecting me to look like walking death and I don't.  I am severely anemic.  This normally would make me appear very very pale; however, when you are pregnant you have 50% extra blood volume.  I am sure this is why I have color in my cheeks.  So, what will I look like as the blood volume decreases to normal?  On top of that, over the last decade or so we have learned more and more about the positive effect being pregnant has on a woman's body.  One of the reasons is the baby's stem cells spin off into the mom's blood.  This has been found to have positive benefits on the woman's health.  Plus, my body is in a sort of "heal mode," as having a baby causes so many changes your body is ready to face them.  After I give birth, I will lose all those benefits--but still be going through chemo.  I am very very curious how it will turn out.

5.  After chemo I will have a mastectomy. Clearly, this is a hurdle.  I as of yet do not know if it will be single or double, nor the type.  I also do not know what kind of reconstruction I'll have. I have no idea how it all works. It is a black hole for me right now--but I will learn when I face this step.  I don't know how I'll react.  From the beginning I have had no problem telling them I am 100% okay with them taking my breast.  I am.  It is trying to kill me, get it out of here.  But--saying it and then having it done are two different things.

6.  Radiation.  The last step in this journey will be 6 to 8 weeks of radiation.  I have talked to others who have gone through this.  It has far fewer symptoms/side effects then chemo, but still makes you tired and causes tightness and soreness at the site.  What shocked me was the fact that I have to go EVERY DAY for a 5 minute appointment.  That's all it takes. 5 minutes. You have to undress, lay on this machine, they essentially seal you in a lead lined room, you get like 30 seconds (not sure on that) of radiation, then you are done. You get dressed and go home.  That is obnoxious.  All that hassle for such a short time. Clearly its important and I'll do it, but for some reason I had assumed it was once a week.

It will be a crazy year and I look forward to looking back on it in the coming years.  I have learned a lot about myself already, and know more is to come.  

The Surprises

A lot going on right now.  Still trying to recover from my cold.  Entering week 3 of my 6th cycle of chemo, so starting to feel a bit more normal--BUT far more pregnant. I am currently 35 weeks pregnant.  The baby will be here in 1 week.  Wow.  Last week I went to Babies-R-Us for the first time during this pregnancy.  This baby boy is coming in one week and I went for the first time.  I was going to buy breast milk storage bags.  Two very very sweet friends of mine who are currently breast feeding will kindly be pumping milk for me to give me to my son.  This is something that is beyond my ability to thank and to repay.  More on that in the post on Breastfeeding, that is not the point of my story--upon walking into Babies-R-Us I almost immediately started crying. When I was pregnant with Biny i spent an insane amount of time there.  No, not necessarily shopping, but researching and checking things out.  I would research on-line and also go to check stuff out.  I was just so excited. I know when you have your second, third, etc--you do less of that.  It's done. You have chosen if you want a bassinet and have it. You have decided what type of carrier, stroller, etc etc.  But, you do at least think about the fact that this child is coming. Walking into that store just reminded me how little I have thought about the fact that a new child, a new being, a new person is joining our family and changing it forever. I'll go from kid to kids and all that that entails.  I haven't thought about this since November.  When we found out I was pregnant, my first thought was excitement over the fact that I got to breast feed again.  Then the next few months of nausea (first trimester stuff) i wasn't too excited, b/c you don't feel pregnant then you just feel like you have the flu for months.  Then, JUST as I cross into the 2nd trimester, the time when you feel the best, we find cancer. 

I LOVED being pregnant with my son. I know, some women hate me for saying that, my sisters included.  They both have serious "morning" sickness (translation: all day and way past the 1st trimester).  But i didn't. I felt awesome. In fact my last month I felt the best.  It was great.  I loved every moment of it.  And, that thought is what made going through my 1st trimester doable (this time much worse then the 1st time with my son). I remembered how awesome it was to be pregnant.  Then --- Cancer.  I feel like I have been robbed of something I may never get to experience again.  I'm angry.  I feel like this little boy is getting the shaft in one more way--the fact that I've hardly given a thought to his coming in months.  I've worried about his growth and impact he'll have from all this, but ironically I haven't thought about the fact I am bringing home a newborn.  A person that long after this cancer is gone we'll be raising.  Cancer is a blip in my life--but he will change my life forever, and I've given him so little thought these past few months.  I feel bad--and going into Babies-R-Us brought it all home.  I wandered through the store crying. I know i looked nuts. I'm in my scarf and face mask crying walking around. I got more than a few stares.  :)  I felt just pregnant for the first time.  I was ONLY thinking about him and his needs for the first time.  I got excited about little toes and fingers and how they grab so hard onto your finger at first--i love that.  I feel horrible that he is coming in less then 2 weeks and this was the FIRST time I've felt this way.

There are a lot of things that are unexpected in this journey of cancer--some because I am pregnant, others I think would be the same even if I wasn't pregnant.  Below is a list of things I didn't really see coming--some just an inconvenience really, others adding significantly to my stress level. 

1.  Losing control of my home.  I have been blessed to have friends and family helping me take care of my home--cleaning, laundry, etc.  However, because of this--i have "lost control" of how my home is put together.  I am not a control freak (I think), but it is frustrating to not know where someone put away something. This can be in the kitchen, laundry, or regular household items that I truly now have no idea where they are.  I have lost items. I am sure they are somewhere, but I don't have the energy to find them.  Don't get me wrong, I am grateful--truly grateful for the help--but having help long term over months and months (with more months coming), it is frustrating to not have control of my home.  

2.  Running errands.  I have never been a big fan of running errands, especially with a child in tow.  But, it is extremely difficult to have someone else run your errands.  It's partly my fault.  People ask to go to the grocery store for me. I truly appreciate this as that task is EXHAUSTING, but it is very hard to send people for stuff when you don't really remember the name.  For whatever reason I don't remember the exact brand/name of things. I just know where they are and what they look like.  I know my system in the grocery store.  And, trying to make a list for someone i realize quickly, I am pickier then I think.  I have had to again relinquish control, and just be happy with what they pick up.  Again, this isn't a major issue--but just one more thing I didn't see coming.  

3.  Loneliness.  I now work from home and don't go out except for doctors appointments and a few visits to the office on my good days.  I do have a lot of doctors appointments,  at least 4 a week, sometimes 6 or 7; but for the most part I am home.  I sit on my couch and do my work when I am feeling well enough.  So--it's lonely.  I can't go out partly b/c I have work to do and partly b/c my immune system is weak and I need to minimize exposure to the crazy amount of viruses and bacteria running around right now.  So--i stay home, alone.  Before I went to an office and saw people. I would go out on Saturdays to the park or a friends home.  But now, I stay home.  It is very lonely.  

4.  You can't feel cancer.  This is especially true in my case as I have no tumor/mass to feel.  But, when you have cancer and when you are on chemo, you just feel like crap.  I feel weak and tired all the time. Some days it is truly a chore to go from the bed to the couch.  Even on my good days, simply going to the pharmacy to pick up a prescription will wear me out enough to need a nap.  I don't feel "sick" like when you have the flu or food poisoning.  No clear signs--no symptoms that scream, "I have cancer."  Because of this, it makes me feel useless and lazy.  IF someone has come to help me, I am laying on the couch, looking normal enough (minus hair), feeling okay (as long as I don't move), so I feel like I should be helping.  I feel like I should be doing more.  Its strange.

5.  Going along with number 4 is the problem of asking for help.  I knew I didn't like asking for help (who does?), but I didn't realize how much of an impact that would have on me.  I desperately need help. Help with my house, with errands, with my son, with paperwork, with it all, but asking for help and then accepting said help is very very hard.  I truly truly need immense amounts of help, and will need more in the coming months not less--but asking for it and letting people help me is so difficult for me. I don't want to put people out.  Everyone has problems, everyone has a busy life, everyone has their own responsibilities, etc so asking people to take time out of their day is very very hard for me.

6. Chemo is "normal."  What I REALLY didn't see coming was how quickly my chemo regimen became normal.  It just became the routine. Its hard to explain, but it was almost no big deal.  The first one was overwhelming and terrifying--but after that, knowing what was happening, and knowing it wouldn't change much (my reaction to the medicine), it just became part of my schedule. I thought about my life in 3 week increments, as I had chemo every 3 weeks.  I have had 6 chemo's since November (4 more to go after the baby comes), and it dawned on me that in January, February, March--I was on autopilot, like it was a normal thing to do.

7.  Paperwork. I knew there would be paper work involved in all this--and I knew I would hate it. I hate paperwork period. It is my least favorite part of being an adult--the quantity of paperwork you must do and organize.  But, the quantity of forms and documents I must keep track of and do actually surpassed my imagination.  There is a mountain of things to organize and keep track of.  Mount Everest sized mountain. Bleh.

8. Employer and Insurance. I knew, as does every American, that dealing with the insurance would SUCK.  It always does.  I am sure that is not going to go away.  What I didn't see coming was the hassle of dealing with my employer.  I work for a small company and I am the first person in their employment that has ever had such an issue.  Despite efforts on my part to work out a plan on how this was all going to go down, mistakes were made on their part over the last few months that have now left me in a serious situation.  Details are not necessary--but truly they are one of my biggest stresses.  Their communication style makes me feel as though they see me as an inconvenience.  As if I chose to have cancer and be pregnant.  It is truly one of the biggest issues I face right now.

Sorry this was a bit long--but I wanted to share my surprises and perhaps someone will see this and be more prepared then I.  

Cancer

I have cancer.  I know--that is the point of this blog, and as I was diagnosed in November, you'd think it would be done sinking in, but sometimes the thought just hits me.  I see an advertisement for the Avon Walk or something, and it hits me--I am one of those people. I am a person they are raising money for.  I am a statistic.  The last few months it has been kind of easy to forget I had cancer. I know that sounds CRAZY.  But, life on chemo has become the norm.  I have gotten used to my 3 week cycle, the side effects, and the side effects of the drugs to counteract the side effects!  Its not like you can "feel" cancer.  Well, certainly not in my case. As I have no lump/tumor, there is nothing there.  Sometimes I have some pain in my breast, but you can get that when you are pregnant--which I am.  So, often I wonder what symptoms are caused by the cancer/chemo and which are by the baby.  As I have said before, life doesn't stop just because you have cancer.  I am just MORE busy now.  I am still working, still a mom, still a wife, etc.  Its easy to get wrapped up in everything else and forget.  Then, you get a reminder (like seeing your bald head), and it hits you. Life is definitely not normal right now. Its anything but.

What's interesting to me--and I am not sure if it is optimism, a sign of me being crazy, or a divine understanding of my future--but I have never once, not for one second, thought this will kill me.  I find that odd.  I hear stories of those who die from breast cancer, and it catches me off guard.  It sort of reminds me that this can be fatal.  For a split second I'll consider that possibility, but then I'm back on the fact that this is just a bump (albeit a HUGE bump) in the road.  You also meet women who had breast cancer 20 or 30 years ago.  And considering how far they have come in treatment since then, it is very reassuring to meet them.

My hospital, Virginia Hospital Center in Arlington, provides all kinds of services. One of those services is support groups for different health issues.  Friday I had the opportunity to go to a support group for women with breast cancer and young children.  It is a unique experience to go through cancer treatment and have little ones to chase at home.  It was really helpful.  There were women who had finished treatment in the last year or so and those like me who were in the middle or just starting.  Granted, I was the only pregnant one.  They all decided my situation made them feel better about their situations.  :)  Glad I could help.

It was nice to talk to those who had finished.  There children are a bit older now, and remember nothing.  One woman had a child who was a bit older when she went through treatment, about 5 to 6.  All he remembers is "that time you had no hair."  Though I logically know Biny won't remember this time, its reassuring to hear it again nonetheless.  That same woman had a re-occurrence in her bones (the most common place breast cancer metastasizes to) and had to have the bone cut out and a steel pole put in her thigh.  Even though her children are now older, about 6 and 9, to them it is just the time she couldn't play soccer with them.  I love kids.

One really unfortunate thing that has happened in the last week is my son and husband shared a cold.  I am truly blessed I have missed out on most of the bugs going around this winter. There have been some HORRIBLE viruses.  And, as you can imagine, when your immune system is depressed, you get the worst version of the cold.  This week, I have only felt  like I have a HORRIBLE cold; again forgetting I have cancer.  Hopefully I am on the upswing from this whole cold and I will be better by my next round of chemo.  On March 11th I have my 6th round of chemo.  There had been a possibility that there would be only 5, but baby and I are doing so well he gets to keep cooking until 36 weeks.  This means I get number 6.  Then, end of March I will be a mom of "kids" not "kid."  Weird.  What a crazy time to have a baby.  Not ideal, but I know this little guy will be a champion. He has already accomplished so much, and he is not even born.  He saved my life--and now battles toxins and keeps on growing.  My personal super hero.