Happy Thanksgiving!

Earlier this week, I received a Thanksgiving card from Evelyn, one of my mother's closest friends.  (She is also known for the "Supergirl socks.")   Throughout high school and beyond, for as long as my Mom still lived in NY, we spent Thanksgiving (and a few Christmases) at Evelyn's house. I always marveled at all that went into putting Thanksgiving dinner on the table and thought I'd never be able to do it myself someday.  (I must say, I do now put on quite the Thanksgiving feast myself, for both meat and non-meat eaters!  I often include brussel sprouts, one of Evelyn's specialties, which I REFUSED to eat at the time.)  We always had such a nice time with Evelyn and her family, especially her Mom, Helen.  Helen was a grandmother figure to me as neither of mine were alive at this point.  She always had such wise advice to give and PROMISED me, when I was in the throes of my 20s thinking I'd NEVER meet Mr. Right, that he was out there.  (She was right!)    I've come to learn over the years and many moves we have had, how important these friends who are like family are in our lives.  

Anyway, back to Evelyn's card.  She wrote in it, "Even in the face of all the bad stuff you are enduring right now, there is sure so much in your wonderful life to be grateful, thankful for."    How true is that???   Much needed perspective to help ground me when I am feeling especially sorry for myself over the coming months. 

Hope everyone has a wonderful Thanksgiving!!!

(On a medical note, I had my 8 day check-in with the nurse yesterday to check my blood counts.   They are all low but not crazy low.  We talked about some of my issues from the first round and talked about some meds that hopefully can help with future rounds.  Still feeling closer to normal each day.  My taste is definitely off, which stinks because not much tastes very good right now and I need to eat to rebuild my strength for the next round.   I'm working on finding what tastes ok and fills me up!)

Returning to the land of the living...

Last night, I finally turned the corner post-chemo #1.   I am starting to feel like a human again and able to eat and drink.  When I stepped on the scale yesterday morning, I weighed about 5 lbs less than I did on Tuesday morning.  Hopefully, I will gain at least some of that weight back between now and the next chemo as I will waste away if I lose 5 lbs each time. 

(Craig just looked at me and smiled.  I asked him why he was smiling.  His response was "You look normal."  I guess I looked pretty bad these last few days.)   

Each time, the terrible feeling might start a little sooner and last a little longer but at least I now know it will end because, let me tell you, on Thursday, I partially had myself convinced that I was going to feel that awful for the next 4 months and that was not good.  Basically, we know I need some sort of help on Thursday post-chemo.  Someone making sure I remember to take my meds and eat/drink something.  Luckily, we have most of the cycles covered between Craig and my parents.   I also need to talk to Dr. Sinclair about how to better manage the Neulasta side effects (bone pain in my skull, sternum and side) as well as the chemo day headache from the anti-nausea meds.   They don't want me taking much Advil/Aleve since they are blood thinners, but Tylenol just doesn't cut it. 

I'm so glad to mostly be on the "other side" of chemo #1.  I have said this before but I am still especially thankful for the meals, playdates, text messages, blog comments, etc.   They really do lift me up when I am feeling down!    I am lucky to have so many kind and helpful people in my life, both in Hopkinton and further away!

After chemo #1

I'm not going to lie...  Yesterday sucked.  I can't even really describe how awful I felt.  Like the worst hangover and morning sickness and the flu all together.  I'm still feeling blah, I think due in part to not eating or drinking enough.

I am so happy Craig was able to work from home Wednesday and Thursday.  Although I am the one suffering physically, he is bearing the brunt of childcare and house stuff, all while working a more than full time job.  I am taking this whole "in sickness and in health" thing to the extreme and I am so thankful for everything he is doing for me and the kids.

The kids seem to be doing well with everything.  They are extra attentive to me.  Raymond especially is being extra helpful.  Tonight, they are getting a break from "cancer mom" with an overnight at Craig's sister's house. I am happy they are off having fun.

Tomorrow morning, Craig and I are headed into Boston to get my wig cut and styled.

Chemo treatment #1 done!

My first treatment is done and overall, it went better than I had imagined, as has often been the case in my cancer journey.

Our first stop was the lab.  There was some confusion as to what my orders were. I offered to just turn around and go home and we all laughed (and I did not go home).  Mary-Beth, my chemo nurse had decided to do the lab blood draw through the port rather than my arm and that is something she needs to do, not the lab.  So we set off for the Infusion Suite to face the first thing I was really worried about for today - the first needle stick into the port.  This is not your average needle.  It is the circumference of a thumb tack and the port wound is still healing.  Mary-Beth assured me I'd be fine but offered to get an ice pack which I put on for 10 minutes.  Then she told me to take a deep breath in and then out,   She stuck me on the out. I barely felt a thing. HUGE sigh of relief. She got me taped up (since the same needle would be used for chemo) and sent me off to meet Dr. Sinclair.

I LOVED HER!   Great bedside manner.  Smart.  Dr. Weiner is her mentor so she is very well connected to him.  She goes to Boston a few days a month to see all those docs in person.  She answered every question and kept stopping to make sure I understood everything about what was going to happen. She had read up on my case and spoken with Boston.  She even was there when they presented my case to the tumor board. I told her so many people had been saying nice things about her and she said the same about me.  She is totally on board with me being vegan.  This is definitely the right doctor for me!

We headed back to the infusion suite and they got everything started.  Before chemo, I got fluids, Ativan (Xanax-like calming medicine), 2 anti-nausea meds and steroids (to help in case of allergic reaction.  The Ativan hit me pretty quickly.  I might go without it next time so I can actually read a book or something.  I was a little too loopy to concentrate.   ;).   Then we moved onto the chemo drugs.  First up was adriamycin, AKA the red devil because it is a bright red.  It also turns your pee orange/red, which happened immediately for me.  That took about 15 minutes to push via 4 big syringes. Then is was on to cytoxan which was in a regular IV bag.  That took about an hour.  The whole infusion flew by, I think becasuse it was constantly moving on from one thing to another.  They brought lunch around but unfortunately not one this was vegan, for the lunch main course.   So I ate some fruit and a granola bar.  Next time, I'll bring a salad or PB&J sandwich.  Luckily we left around 1pm so I just ate a sandwich at home.  It was kind of odd.  It just ended and we left!

We got my next 3 treatments scheduled since there are 4 treatments in total of the adriamycin and cytoxan.  Last 4 are taxol which will get scheduled once we know I can handle the first four.  Dr. Sinclair expects this will be the case.   I go back next Tuesday for labs to check my white blood cells and just generally check in on how I am doing.  Dr Sinclair will be in Boston but I will see Mary-Beth and she can talk to one of the other oncologists if we need someone.

Basically, they told me to call anytime day or night with any and all symptoms.  All the doctors and nurses are there to make sure I have the best possible experience.   I feel very well taken care of!


Here are my Supergirl socks which gave me strength today.  Thanks Evelyn!

Chemo day has arrived

Shockingly, I slept pretty well last night.  I did take a Xanax before bed to help with the sleep.  I fell asleep pretty quickly and slept without interruption until about 4:15am. I dozed until I got up at 6:20am.  That is a pretty good night's sleep for me these days.

I am ready for today and terrified but as my Dad said last night, the sooner we start, the sooner it is over.  Luckily, my port surgery soreness is WAY better today.   It was pretty bad last night and I was worried that somehow the tube coming out of the port and going into my vein had become unattached.   (Yes, I am a crazy worrier.)  I think the issue yesterday was that I barely moved my left side so it just got progressively tighter and tighter.  While sleeping, I relaxed a bit which allowed the muscles to loosen.  I need to be better about moving normally. 

On a WHY NOW??? note, our upstairs furnace is not currently working, which we discovered at 8:30pm tonight.  It was a bit chilly especially in the kids rooms last night but they are pretty hearty (and we loaded them with blankets) so they did ok.  Somehow, I need to figure out how to get the HVAC people into the house today.  (I am again thankful for the kindness of neighbors who can let them in.)    It is going to be in the 20s tonight, so we really need heat upstairs!   Never a dull moment.

Keep the prayers and good thoughts coming today that I am not allergic to the medication and that nothing hurts too much.  I am such a wimp with needles (but then they never hurt as much as I had imagined.)   Thanks for all the texts, emails, blog comments, care packages, etc. They really mean so much to me and always make me smile! :)

I know today is a big deal as Raymond actually gave me a kiss this morning.   He is great with hugs but stopped giving kisses about a year ago.   I am lucky to have such great kids (and husband and family and friends)!

I heard Neulasta was expensive but HOLY CRAP!

I just got a call from the specialty pharmacy that will be filling my Neulasta prescription. This is a shot I will have the day after chemo to help boost my white blood cells.   This is administered via injection and luckily I have a neighbor who is a nurse who can give me the shot rather than me driving to the hospital to get it.   The pharmacy called today as I need to pay my portion of the cost and they needed a credit card number.  At this point, with all the bills we have already incurred, I am "only" paying coinsurance which is 10% of each bill (up to our maximum out of pocket cost for the year).   The coinsurance for ONE shot is $900 which means ONE shot is NINE THOUSAND DOLLARS.   Thank God for the insurance we have and the health savings account we have built up in my healthy years.

UPDATE:  The $9,000 was actually for two doses so each dose is "only" $4,500!

Blog post from another blogger about what friends with cancer want you to know

This post resonated with me. Please take a read through it.

http://roadkillgoldfish.com/friends-cancer-want-know/

I would add the following:

1. I am embarking on a long treatment road that won't be over until at least next May. Keep checking in with me throughout and after because this cancer stuff never really ends once you have been diagnosed one time, let alone two times at a young age.
2. Make me laugh. Send me funny pictures, stories, memes, emails, cute stories about your kids etc. 
3. Don't be offended if I don't respond to every email but do know I read every one and more importantly, appreciate every one. 
4. Don't assume you know what I might need or want.  Ask me first. I have a hard time saying no even if someone is offering something that won't be totally helpful. 
5. If you are dropping something off at the house, please text first to see if I am up for visitors or just drop whatever it is off without ringing the doorbell.

Being punched in the chest by five 300lb linebackers

Yesterday, I had a "power port" put in to make chemo easier.  At this point, a lot of people have told me how this will make my life so much easier so I am mostly happy with the decision to get one (not that I really had a choice).    Mom and I headed to the hospital (for what was my 8th surgery in the last 9 years after no surgeries for my first 32 years) a little before 7am.  Once again, my neighbor/friend Jen took the kids in, fed them breakfast and got them on the bus.  Not sure what I would do without all these amazing women who have become such great friends in the year we have lived in Hopkinton!

Day Surgery was hopping when we arrived but luckily things ran pretty close to schedule (only about 30 minutes late).  My pre-op nurse, Alicia was super nice.  She got me all settled.   Before surgery I met with the anesthesia doctor who told me, in the unlikely event that I woke up during the surgery, that I should not move.  That was a bit unsettling but I told her I would do my best not to move.  The surgeon's physician's assistant, Chris, also came to see me.  He did a quick ultrasound of the surgical area to make sure everything looked good.  He told me since I am so thin he could perfectly see my veins and the valves (or something like that) inside of them and that they looked "perfect."  (After so many years of being overweight, I still smile when a doctor tells me I am thin.)   Both Chris and Alicia asked me who my oncologist was and when I told them it was Dr. Sinclair, they both had GREAT things to say about her.  I am still a little concerned about the fact that I won't meet her until Tuesday morning so all these glowing reviews from others are putting my mind at ease. 

They wheeled me into the operating room.   I remember Chris standing next to me and then I was out until I woke up back in the Day Surgery unit.  Before I became completely coherent, Mom and I were chatting but I don't remember what we talked about.  Gotta love anesthesia.    They did a quick chest x-ray to make sure the port was placed properly and then sent me on my way.  

Chris had told me people likened the post-surgery feeling to being punched in the chest.  I guess I would agree with that only it felt like five 300lb linebackers had punched me! I was pretty uncomfortable yesterday anytime I moved so I lay in bed for the rest of the day taking percocet every 4 hours.  That made me so tired and loopy!   I slept okay.  It was so great to finally have Craig home.  He had been away for work for most of the last week and a half and I really missed him.

Today, I made myself get out of bed and that has helped a lot.  I even went for a walk with Craig and Tuukka.  Although it is COLD outside, the fresh air and movement has done me a lot of good.  Mom, Emily and I were supposed to go get my wig styled this morning, but I decided to reschedule since I am not up for driving yet.

All in all,  am glad the port surgery is done.   Next up, chemo on Tuesday!  Hopefully I am mostly healed from the surgery.  People sometimes get the port installed and go right to chemo.  I cannot even imagine doing that!  I am glad I have 3 days to heal.

Port installed

Procedure this morning went well.  I am a little sore and somewhat loopy from the Percocet so I'll write more later.   Just wanted to let everyone know I am home and resting.  I plan to watch some taped shows and sleep this afternoon!

The week so far...

I have spent some quality time at Milford Hospital/Dana Farber this week.   

First up was a pre-surgical appointment for the port placement.  I was a little annoyed about having to actually go to the hospital for this since my pre-surgical appointment for my October surgery (at a different hospital) was done over the phone.  Turns out the only reason they needed to see me was that they did not have my height and weight on file... something they could have gotten over the phone.   I was a little annoyed but the nurse was apologetic.  I did find out that I should be at the hospital for about 3 hours on Friday.  I am having sedation, not general anesthesia, so that speeds up my exit.  I don't even have to go to recovery.   I found the anesthesia harder to recover from after the October surgery so I am happy to not go through that again.

Next, I was off to the "Look Good Feel Better" program which is put on by the American Cancer Society.   You get a whole bunch of free high-end makeup (much of which I will not use since it is full of potentially cancer-causing chemicals).   I did learn a few make-up application tips as well as what to do if/when you lose your eyebrows.  My friend Jen came and all the the other participants were very nice to it was a fun event.   There also was supposed to be a section about wigs and wig care but the woman that was supposed to do it was not able to come.  Luckily the place where I am getting the wig will go through all the care instructions with me.

My final appointment on Wednesday was my "chemo teach" with Mary-Beth who will hopefully be my chemo nurse for every treatment. I LOVED HER!  She is probably in her mid to late 30s and has 3 kids - 9, 5 and 3.   She took me through each of the chemo drugs and their side effects, as well as all the other meds I can/will take to combat the side effects.  The Infusion Suite is really nice.  Each patient has their own private bay with a comfy chair and a tv.   They come around with food, if you are there for lunch and have other snacks and drinks available.   Mary-Beth had a lot of good things to say about Dr. Sinclair, when I told her I was a little nervous about not meeting the doctor until the morning of my first treatment.  I have to have a shot the day after chemo to help with the white blood cell loss and I found out my neighbor (who is a nurse) can administer it, so I don't have to go back to Dana-Farber.   I can keep teaching CCD but need to make sure the kids use hand sanitizer.  Overall, it was a good appointment, but I was EXHAUSTED last night.

Today, I met with the dietician.  There are 2 on staff and I chose the one who is vegetarian.  She told me that my albumin level (measure of protein in the blood) was at the high end of normal so I am clearly getting enough protein in my diet.  She said some doctors might be worried about the whole vegan thing but as long as I keep up with my current diet, I should be fine. 

Now, my goal is to get a good night sleep tonight since we need to be at the hospital at 7:30am.   I feel like tomorrow really begins the chemo part of this diagnosis!

Thoracic Surgeon

On Friday, I met with the thoracic surgeon who will be installing my port-a-cath.  I am still not 100% excited about this but a bunch of people I have talked to who have had cancer highly recommend getting one so I am slowly getting sold.

The appointment started out with me getting measured (my height).  The nurse first took it in centimeters and then converted it into inches.  She told me I was "just shy of 5'4".   I was NOT happy as I was always between 5'4.5" and 5'4.75" so I basically have lost almost an inch.  (And I am a bit sensitive about my height, or lack thereof.)    The nurse did not seem to care much.  It was not a good start.

Next, I met with the surgeon.  He has a rather odd manner about him and kept minimizing (with little sympathy) some of my concerns with getting a port.   I commented about not being happy about having yet scar.  In a somewhat flippant manner commented about how "small" it is.   Fine, it will be small but will be completely visible anytime I wear a bathing suit, summer dress, etc.   All my other cancer related scars are hidden in clothes.  As we wrapped up the appointment, he told me the port would be installed next Friday, just 4 days before chemo starts.  I really wanted it to go in early this week so I had a week to heal.  He told me (again a bit flippantly) that it wasn't a big deal since he technically could install it the day chemo started.  This is definitely true but I have heard that it can hurt A LOT when you do it this way.  He did not seem to care.  I almost said, rather obnoxiously, "have YOU had a port installed and then had chemo the same day???"

I just got a bit overwhelmed by it all and how a bunch of things are just not going as "planned."     I know I need to give up the illusion of control but it was just a day where I needed to have a little breakdown.  I came home, cried to Mom for a few minutes and moved on.   I was still in a funk for the rest of the day until Elizabeth and family stopped by as they were in our area for their son's (who is my godson) soccer game.   (My funk was also due in part to Craig being out of town for the better part of the rest of our time before chemo.)

9 more days until the chemo "party" starts.    This is a busy week of cancer stuff:

• Wednesday - Look Good, Feel Better program run by American Cancer Society and my chemo "teach" with the chemo nurse
• Thursday - meeting with cancer center dietician
• Friday - port install (be at hospital at 7:30am for 8:30am procedure.  Thanks again to Jen for feeding kids breakfast and getting them on the bus).

Wig shopping

My friend, Elizabeth and I went wig shopping today.    The kids and I were talking about what color wig I should get.  Emily was all for yellow/Goldilocks style.  Raymond wanted brown.  I was definitely in Raymond's camp.  

I was pretty nauseous before leaving but did not get very emotional while trying on wigs.   (Now, when Mom arrived... that is another story.)   I liked the first wig I tried on since it is very close to my actual hair.   It will be styled and cut while I am wearing it at my next appointment.

For fun, I decided to try on an "Elsa" wig (from the movie Frozen).   Emily thinks I look "lovely" in those one but it is not my style.  If I wanted to look like a local in Finland, this would be perfect!

MOM!

My Mom arrives tomorrow afternoon for a visit and I cannot wait!   Craig will be out of town for most of the next 10 days (2 separate trips) so it will be great to have Mom here to help with the kids.  I have a nasty cold right now that pretty much HAS to be gone by the weekend to keep chemo on schedule so a little Mom TLC will do me wonders right now.  I went to bed at 6:30pm last night, convinced I was getting the flu but I feel WAY better this morning.  Not back to normal but I don't have a fever or body aches anymore.   I guess the lack of sleep and eating and overall stress caught up with me!

I met with the social worker at the hospital on Monday and I really liked her.   It was nice to talk to someone who is not directly involved in my life about what I am feeling right now.   I will continue to meet with her over the course of the next few months.

Tomorrow, I go wig shopping (assuming I am healthy enough) and then on Friday I meet with the thoracic surgeon to talk about the port.  Fun times in cancer world!

Nesting

I feel like I am nesting right now like a woman who is 9 months pregnant...  I have organized the pantry.  Bought enough food for us to withstand about 3 months post-apocalypse.  Put out all the hats, gloves and scarves for winter, while putting away all our summer stuff.   For anyone that knows me well, I thrive when things are organized.  ;)    All this planning is keeping my mind off other stuff so that is definitely a good thing.  17 more days until we get going with the healing energy of chemo.  (I am doing my best to put a positive spin on it.)