Taking care of small children while undergoing Chemotherapy and Radiation

I feel obligated to write this post as I spent hours and hours reading other posts and trying to make decisions. How do you plan for something when you don't know how you're going to feel??? Physically, mentally, you just don't know but I'm starting to get a decent idea. Here's some thoughts about each part of the process and how we decided to do what we did.

(and just to state our case. Our situation is NYC, 2 bedroom apartment, one car, Dave is a resident, not a lot of money, no family close by, kids 1.5 and 3.5)

(and my personal cancer case - I was Stage 2ish? Tumor + a little bit in the lymph nodes)

Double Mastectomy. 

+ This was my first step - some people do chemo first but this was first for me. 

+ My parents flew out to stay with us for at least 2 weeks and potentially longer. It was really nice that they planned to come out for an indefinite amount of time. 

+ My dad even bought a mattress from Costco and had it delivered rather than dealing with a crappy air mattress. We store it in our closet and pull it out every time someone comes to visit. 

+ For the surgery, my dad stayed with the kids and my mom and Dave came to the hospital which was great. 

+ After surgery, that night, I was very out of it on pain pills. I ended up going home the next day to get out of the hospital and avoid getting an infection. Maybe it would have been better for me to stay one more night? As soon as you get home, it's difficult to rest. But. It was also good for me to have a reason to get up and moving around. 

+ I tried very hard not to lift my kids for 2 weeks. Not even into the bathtub or on my lap. Around 2 weeks, I figured out ways to use my legs to swing them in or lift more with my lower body but I was very very careful. I didn't do a full lift until 5 weeks or so. 

+ For 2 weeks, my parents did everything. Cooking, cleaning, taking care of the kids, everything. I was often awake when the kids were awake but I was mostly hanging out. Not doing much. I could walk Alta to school but I couldn't take Rinnie anywhere by myself unless she was strapped into a stroller. Chasing and trying to grab her would have been a bad idea. You feel really really stiff. 

+ My parents left 2 weeks after my surgery and Dave had the weekend off and the following week. So we went it alone for a week which worked out just fine (minus the fact that I was still sore and Dave was exhausted) but it feels good to try things alone again. 

+ Dave's mom came after that for weeks 4 and 5. And she and I ran the show together. Although, I had tons of doctors appts and started chemo during this time so it was kind of crazy!
+ I wished I had started doing arm stretches early on to prevent stiffness. Nobody talked to me about this and my shoulders/arms were so stiff for days.
+ Also, people joke that you should sleep in a recliner and I wish I had. Sleeping was very uncomfortable for a few weeks. I got a wedge pillow which helped a little bit but I was still uncomfortable.
+ Baggy-ish, button up shirts are a must. You have all these drains and you can't get anything over your head.
+ Just throwing this out in case it helps - like 10 days after surgery, I had severe chills and felt fatigued and went to the ER who said it was nothing. The next day I woke up with hives all over my body and we think it was a Bactrim reaction. I took benadryl and switched antibiotics. 

Freezing embryos.

+ We met with an oncologist about 2.5 weeks after the surgery and determined we should freeze embryos just in case chemotherapy damaged my ovaries. The timing was a little insane because he wanted me to start chemo right away so we had to retrieve eggs on my next cycle which...was happening right then. 

+ We met with the infertility doc and got all the paperwork done and medication figured out in the same day. The Livestrong foundation provides the medication for free if you meet certain income requirements (which we did) so that was great. 

+ This process was very tiring and hard on my one arm of veins! (If you have your lymph nodes taken out on one side, you're not supposed to have blood drawn or any IV stuff on that side) You go in every few days and then EVERY day right before they retrieve the eggs. It was nice to have Dave's mom there for all the times I had to run up there and for the afternoon when they did the egg retrieval. I felt totally fine after that process, by the way.

+ My doctor says that his BRCA patients often have less eggs and that was definitely the case with me. We ended up freezing two embryos. We won't be having more kids for at least 3 years so we're tabling this issue.

PET Scan and Chemo #1.

+Luckily Dave's mom was still here for all this! When you do the PET scan, which wasn't a big deal, they inject you with radioactive fluid. So you can't be around kids or pregnant women for 24 hours!  (actually, the second time I did this, they said you should be fine if your kids are a little older after a few hours. I'm not sure who is right) I was annoyed with this but used it any opportunity to stay in a hotel the night before my first chemo. I was taking steroids which gave me this weird, hyper energy and I went shopping and out to dinner with Dave and even swimming! I was surprised to get the PET scan results that afternoon. It was very quick! (which was an all clear, hallelujah)
+ Dave went with me for the first round and ended up falling asleep in the chair next to me. My drugs were Taxotere and Carboplatin. They give you a bunch of other stuff first like benadryl, anti-nauseau, steroids, etc then the chemo drugs. The Taxotere rocked me hard for about a minute or two. Like I thought I was going to die I felt so nauseous and like I was dying. Unfortunately, I got up to go to the bathroom right before this happened and I thought I was going to die in the bathroom. Luckily, it went away and my nurse finally figured out that if she upped my Benadryl, that would stop that reaction from happening. (And I would also sleep like a rock for hours. )
+ It was nice to have Dave there to go grab us food or grab me anything. But, that was kind of a luxury as he really has to be at work so this was the only time I went with someone.
+ Because Dave is a Dr. , they taped my IV so that I could do the extra bag of fluids at home. So, the next day he could do the bag of fluids + the Neulasta shot. (great news for me, I never had side effects from the Neulasta. A lot of people get bone pain from it. I didn't)
+ The next day, I took more steroids and we bought a christmas tree and my energy was pretty good! Then I crashed. It's a weird thing to take over your body. Your face and head feel kind of numb, tired. I also had my stomach acting up after this one. Like tons of bloating. And the day after Dave's mom left, I got a mouth sore on my tongue that hurt so bad, I could hardly talk. I had chemo on a Thursday and by Tuesday/Wednesday of the next week, I was back to taking care of the kids full-time.
+ Ideally, someone basically takes over your household for the entire chemo day + night and the days following that.

Chemo #2

+ Our niece and nephew (who are in their 20s) came to help! I still had my hair at this point but...lost it right before the second treatment. It lasted like 2 weeks. We did the same deal with them. They stayed with us and took over on the chemo day. This round was kind of funny because I was at home and the kids were pulling on my IV and I ended up just getting up and going. We went to brooklyn one day and the next day, we went to the top of One WTC. By Sunday, I was pretty dead again. But by, Monday good! They still helped out but I was doing pretty well by Monday/Tuesday.

Chemo #3

+ My friend Megan came! This round was good too. She took over while I did the chemo and helped all weekend. She made us lots of good food! Smoothies and delicious comfort food. I miss that. I've decided that going through chemo is like being pregnant. You think of something that sounds good and you find a way to eat, immediately. And then you don't want it again.

Chemo #4

+ This one was hard. I caught a cold right before my treatment day. Like 5 days before. I was almost over it but after I had the infusion, it came back hard. The worst part was the fluid build up in both my ears. It was hard to talk to people and I was just kind of miserable. Dave's sister came for this one which was so great. She took over the chemo day + the next day I booked a hotel room at the Hampton Inn by our house. After taking Alta to school, I took a cab to the hotel and laid in bed almost the entire day. I don't even know how I did that but I did. The only time I left was to grab some takeout pasta. Dave came later that night and we both just slept and slept and slept. I was very tired and sick saturday/sunday/monday. By Monday, I decided to call my chemo nurse and my dr got me some antibiotics which started kicking in the next day. I can see why people get stressed out about not getting sick while doing chemo. For me, it wasn't life threatening but it was miserable. It was like my body couldn't fight anything or get over it on it's own. The hotel room was a great trick here. The girls were happy with Heidi and I was able to just do nothing - (although after awhile, doing nothing is super boring) I started to have problems with my fingers and toes after this one. Like buttoning my kids jackets was really hard. Like I was an old person. And if someone stepped on my toe, ouch! Your nails can get very sore. I tried running once and my toes hurt so bad afterwards.

Chemo #5

+ For this one, my parents came to pick up the girls and take them to my brother's house in Baltimore. This worked out really great! I mean it was very sad to have them go but once again, I pretty much just laid on the couch friday/saturday/sunday (except for a few outings to the mall, church, the city) One thing that has surprised me about chemo brain is that it's actually easier to be around kids than adults because kids have very simple conversation topics. It's easier to sit on the floor and build a tower then to make plans or discuss ideas with an adult. I keep noticing that chemo takes away my ability to multi-task. Either I can sit and play with kids or I can make dinner. I can't do both for a few days. Dave always takes over here, chasing Rinne, getting coats on the girls, driving people around, etc. Driving is kind of out for me for at least 5 days. It's weird, you just don't feel completely with it.

Chemo #6

Dave's mom came back for my last round! This was the only time I switched my chemo day (all the other times were Thursdays. This was a Monday) I switched it because I didn't want to be a zombie on Easter Sunday. I was a zombie on Valentine's Day and all the other Sundays after chemo so I wanted to switch it up. The chemo went well and I took the subway down to stay in a hotel in the city this time. Once again, I laid in bed for an entire day and night and next day (besides going out to get food a couple of times) I just felt terrible. And you think, yay! I'm done! But really, you're just right back in it. No hair, feeling crappy, just trying to get through. By Friday, I was still not feeling well and realized that cold virus or whatever was back in my body again. I took another z-pack and finally felt better again the following week. My eyebrows were mostly gone and obviously, no hair still.

As far as what to do with your kids and going through chemo, here are my thoughts:

+ There is no perfect solution and what you need might change.
+ Make a list of all the options. Family willing to help, hiring a nanny, friends in the neighborhood, babysitters, etc.
+ Make a pro con list for each.
+ Make a choice for your first round. I was lucky enough to have family and friends that were willing to be super flexible with coming to help when I needed it. If this isn't your situation, you might want to hire someone and give them each chemo date.
+ Personally, what I preferred was about a weeks time. Our helper would come a day or two before chemo and stay for a week. They come, the girls get adjusted to having them, you explain your life, you leave for chemo and they take over for a few days, then hopefully you are back to normal by the time 7 days is up.
+ It was nice to go back to normal for 2 weeks (if you can!) Makes you feel like maybe you will have a normal life again.
+ Make a list of 5 babysitters you can call or text. Friends and neighbors are great but it's nice to have some paying options.
+ Also, note when people offer to come watch your kids. There were so many times when I wasn't sure who to ask and somebody's name came to my mind. (obviously not just random people.)
+ I noticed by the 4th or 5th day every time, my kids were done with the helpers. They wanted mommy and things got difficult.
+ Alta really started to understand the process. On my chemo days, I told her I'd be gone for the day but back after Rinnie's nap. I would tell her my brain wasn't totally working or I was too tired but that I'd be better again soon.


Other things:

+ Our family helped to pay for a housekeeper to come as often as we needed. The right amount was about every 2 weeks. The first time she came was right after I had chemo and I had the hardest time pulling myself together to write a list and figure out what I wanted her to do. I wish I had done that before the treatment when my mind was clear! Also, I learned that a good housekeeper works around your mess. They put away toys and find places for junk. You have to learn to let them do their thing :)

+ Uber. We've taken Uber a lot.

Radiation

Because I had breast cancer, my radiation area is good. The radiation doesn't effect any important parts of my body, thank goodness! Alta is in preschool but I had to figure out what to do with Rinne. Luckily, my place offered to watch Rinnie for every treatment! It turned out that Rinne got sick of going with me every time and it was great to have someone watch her twice a week.

For those in NY, my doctors have been:

Radiologist - Dr. Laura Bernstein
Surgeon- Dr. Nella Shapiro
Plastic Surgeon - Dr. Teresa Benacquista
Oncologist and treatment center - Dr Hoffman at Eastchester Center for Cancer Care (Dr. Rosenbaum for radiation)

Next up for me, breast reconstruction  (I will update after this as I am now figuring out how we will get through this surgery!) and a clinical trial to prevent recurrence. Currently, I have a Lupron shot every month (which Dave does) and I take Exemestane daily.