Just a quick write up before I get my pre-meds.  Fluids started at 6:30 am with a lot more to come. Benadryl and Ativan will be given at 10:15 to help with nausea and anxiety. 11am is the transplant time. I have lemons to inhale due to the smell of the preservative put in the stem cells and can cause nausea. All nausea meds are on deck. I will need oxygen too.

They keep asking me how I’m feeling, and I really don’t know. I didn’t sleep well and I’m clenching and grinding my teeth. So, anxious?

I expect to be emotional, at which point my lashes will fall off. But I figure it’s ok, because I’m going into this today on my terms, as close to the me that I can still recognize.

This has been such a long road so far, and this is just the beginning of this last step. Yet, it only feels like the beginning.

Love you all. Thanks for checking in.💜

So here we go.  I was admitted to MSK NY yesterday and settled in my room at 3pm. Well, not “settled”, more like restless. Not really being able to process what was happening, or what I was doing there, or how I even GOT here! HOW DID THIS HAPPEN (again) AND HOW IS THIS ME, IN THIS BODY, HAVING TO GET A STEM CELL TRANSPLANT?!?!  It’s just not fucking fair. Cancer is not fair. I was a good kid growing up, I’m a good wife, I’m a good mom, I’m a good friend…this is pretty much the inner dialogue I had with myself the week leading up to getting here. Along with more tears then I ever thought I had in me.

So, anyway, I’m here, in my room. Alone. I was “ok”, until my first chemo bag was hung. I freaked. I cried and inner monologued, and then was given the gift of Adivan.  Sweet, sweet Adivan.

I slept pretty good. Vitals are done very 4 hours and then at 5:50 am I was having blood taken for labs and morning meds and anti nausea drips hooked up. I got to Facetime the boys before they went to school. Then I suited up (mask and gloves) and walked down to the pantry to get a cup of coffee.

I’m trying to establish a routine here, but use inspiration from my home routine. And so far today has lined up nicely. I ordered breakfast, drank my coffee while putting on some makeup, and ate. Same as always.

I was going to shower, but my first chemo drug for the day was being hung and it causes low blood pressure, so my shower had to wait. Physical Therapist came to walk with me for 5 laps around the floor, and by then my next chemo bag was ready to be hung, and then came my shower. (Someone has to be in the room while I shower. Not in the bathroom with me, but in the room cleaning and changing linens and present, incase I fall or something.)

I got dressed, did some needlepoint, and walked the rest of my laps. I’m feeling pretty good, so I added in some lunges too. 10 of them everytime I reached the same stretch of hall, for my remaining 7 laps. 14 laps is a mile and they want you to do it everyday. Today was a good measure for me.

Occupational Therapist visited and we did some congnitive stuff. She tried to make me start at 90 and keep subtracting 7. I couldn’t do it. I have to write that shit out. “83? (Looooong pause) 66? Regroup in my head?!?!?! Are you shitting me?!?!?!?!” Otherwise I did great.

Lunch is ordered. And now you all are filled in.

I get the same 2 chemo meds again tonight. Twice a day thru Monday. Tuesday is a nasty one that causes bad mouth sores. But clinical studies have shown that if you eat a shit ton of ice chips while getting this drug, it helps prevent them. Something about keeping the mouth cold.

Then Wednesday, February 6th, my stem cells will be given back to me. Happy ReBirth Day to me!!! What happens after that, we shall see.

Kids seem to be ok. Jeff has a horrible cold. I’m in the safest place I could be.

Thank you to all of our Meal Train cooks the past 2 weeks. You guys spoil us.

Thank you toTerry for the early mornings and staying with the boys on late nights. Thank you, Cathy, for helping with the boys after school also. They adore both of you ladies and look forward to seeing you every time. 💜

Thank you, everyone, for thinking of me and Jeff and sending positive thoughts our way. Your love and support means so much to our family. 💜💜💜💜💜

Love you all. Thanks for checking in.

On Friday, I completed my radiation.

It wasn’t horrible, except for getting the flu during my first week. The worst part is every symptom I had could be explained away as being a side effect of radiation. All of the sudden I felt tired and winded, sore throat, cough;because radiation to the chest can cause these things. But by Friday night I was running a fever. A fever is a big no-no when you’re undergoing treatment.

So we wound up at MSK Urgent Care in the city at 8:00 on a Friday night. It wasn’t the best experience, as nothing feels very “urgent” once you get there. Jeff lost his cool a few times in the waiting room. In his defense, it was midnight before I was taken to a room. It was a rough night, and after extensive bloodwork, urinalysis, 2 nasal swabs and a chest x-ray we left there at 6 am.  They gave me Tamiflu which seemed to work.

The second week of radiation went fine, and my last appointment was bittersweet. Another step completed, but still another ahead of me. The anticipation and the unknowns are starting to consume my thoughts, so I’m working hard to keep myself grounded and only focus on one day at a time.

So, my stem cells were harvested. We got 5.3 million healthy baby stem cells. Right now they are in a freezer at the hospital waiting for me.  I will have a dose of chemo next week and again on the 29th. On the 30th I will be admitted at MSK NY and have 3 days of high volume chemo to kill any left over cancer cells and also wipe out my immune system completely.  My stem cells will be unfrozen and and given back to me through my central line, CeCe. (In my research, people who go through this consider this day their Re-Birth Day.) The stem cells will go to my bone marrow where they will begin to divide and create healthy new blood cells and a brand spankin new immune system.  It all sounds really cool and it is amazing, but there are a lot of side effects and risks involved.

I will be in isolation for at least 3 weeks, depending on when my levels are recovered enough for me to go home. I will be watched very closely for 100 days after my release by my stem team and I will have to be very, very careful. My doctor explained it as, “It’s like putting a newborn baby in day care.” I will have the immune system of a baby.  I won’t even have my immunizations anymore. I will get all of those after a year. Crazy, right?

I will be able to have visitors. They’ll have to wear a mask and gloves before entering the room. If they show any signs of a cold, they will have to stay away.

I will have to be careful with food. A low-microbial diet will have to be followed and I have a lot to learn.

I will do my best to blog when I feel up to it. Please understand that I will be resting a lot, and Jeff will have his hands full with the boys. We will keep in touch as best as we can, when we can.

As far as the Meal Train goes, the month of February will be for Jeff and the boys only. So, you may want to rethink if you signed up to bring chicken soup, since I’ll be out of the equation. I may add a few dates for them.

A ton of THANK YOUS to everyone that has dropped off food the last few weeks. It is so appreciated and such a comfort knowing it is one less thing we need to think about.

THANK YOU to my before/after school helpers: Terry, Cathy, Sophia, Cristina, Gabby.

And a special THANK YOU to Gina and Jay for helping us out when I had to go to Urgent Care. Jay stayed over night with the boys and we knew they were happy and well taken care of. Thanks for always having our back. 💜

I love you all. Thanks for checking in. 💜💜💜

My 3 cycles of chemo are complete.

As I had said in my last post, I had a very busy week leading up to that final weekend. I met with the doctor carrying out my radiation plan in Basking Ridge. I will go twice a day for 10 days beginning on January 7th. I also had my prep appointment that included a CT scan, body mold and tiny tattoos on my chest and torso. The mold and tats are to aid in lining me up on the table exactly the same way everytime to be radiated in exactly the right spot.

The next day we were in the city to meet with my stem cell transplant doctor. She was kind, understanding of my fears, and very thorough in her explaination of what I’ll be put through. I was then sent down the hall to have a bone marrow biopsy. As you probably already know, it was horrible and I didn’t handle it very well. (And that was with Xanax.) They said it would be taken from the hip, but it was my lower back. Although the surface area was numbed, once the needle hit my bone I could feel everything. The tech pounded on the needle/syringe to get it through the bone. I could feel the pulling of marrow from my bone.  This was done twice while I layed there.  I broke down in the hallway on my way to my PET scan.

Thursday, back in Basking Ridge to start my Chemo Weekend Extravaganza!  It continued early Friday morning in the city at 8am for my Central Venous Catheter to be put in my chest. I was given a lovely cocktail that made me sleep through the whole thing. This catheter, or CeCe as I have named her, will be used to collect and return my stem cells. CeCe is pretty awesome. Nothing like Porty (my port) from the first time around in treatment. CeCe was also used that night and all through the weekend for chemo and bloodwork. I’m still a bit sore where it’s rubbing on my collarbone, but it’s getting better.

I don’t remember much after Saturday and it’s creepy. It’s the equivalent to being really drunk and in the moment you’re like, “I’m good! I’m going to remember all of this in the morning! This is awesome!” And then you wake up and have to ask people what happened and how did you got where you are and who was there and if they noticed how drunk you actually were. All week, that’s what I’ve been doing.

I slept. A lot. I did wake up Christmas morning and we opened gifts as a family and I went back to bed. I was in bed most of the week.

Now, up ahead…Wednesday morning we will have another early start in the city for a bunch of appointments and my first day of stem cell harvesting. Thursday, if necessary, will be a second day of harvesting. Then my stem cells go in the freezer to await being transplanted back into me. Next time I write, I’ll get more into the stem cell stuff. It’s kinda crazy, amazing and scary.

Thank you to all of our helpers and babysitters in the past few weeks. You help keep things consistent for the kids and for that we could never thank you enough.

Thank you Meal Train helpers. Everything has been awesome and so helpful.

I hope everyone had a joyous Christmas and I hope the New Year brings you all peace, health, and love.

Mama’s gettin’ a new immune system this New Year! I just need positive thoughts that it all goes smoothly.

I love you all so much. Thanks for checking in. 💜

2 down, 1 to go, at least as far as chemo goes.

#2 hit me hard and fast. I don’t remember much. Friday I was hooked up late in the day. Saturday morning I had some visitors from the psych team. They were super nice and really helpful. Jeff brought the kids to visit, which I remember. Then the queasiness set in at dinner time. I remember forcing myself to eat and feeling really tired.

Sunday is a blur. My sister came with Jeff to pick me up and I cried when she walked in. I was so happy to see her and proud of her for coming because I KNOW it’s not easy watching all of this happen to me. It was brave of her and I love her so much.

I was pretty nauseous during the drive home. Unfortunately that nausea continued for the next 4 days. I slept. A lot.

I’m having a really hard time. I’m not going to lie or sugar coat it. I’m not handling any of this well at all. I have moments of distraction, moments of smiling or laughing at something sweet or goofy Jeff or the boys do.  But when that moment passes I’m immediately consumed by my reality, my saddness, my disbelief, my anger, my fear. It’s a physical aching in the pit of my stomach.

I’m keeping tabs on myself. I’ve asked for help and I’m getting it. It’s just going to take time.

The next week is going to be very busy. I will be at appointments everyday, Tuesday through the weekend.  I’m now prepping for radiation to start and my stem cell retrieval after the New Year. Literally, January 2nd and 3rd are my retrieval appointments. My schedule is full on my patient portal and my head is spinning. One day at a time, right?

Before I end, I want to take a moment to talk about Jeff and his role as my Caregiver. Some may think, “Duh, you’re married, of course he’d be your Caregiver.”

Being your spouse’s Caregiver is a full time job. So, on top of keeping track of and getting me to every appointment, he’s making sure the kids have someone at the house when they get off the bus, watching his work schedule and fielding work calls, taking care of the kids, grocery shopping, laundry, banking…the list goes on. But through it all, he is still a husband standing by watching his wife fall apart because she has cancer. There are moments I look at him when his guard is down and I see it. I don’t want to assume what it is I see, but there’s this look in his eyes that reflects hurt and pain. Once in a while his voice will crack and his lip will quiver when he tries to relay info to one of my doctors or he tries to tell me how kind a friend or family  member was.  It’s there.

He’s so effing stubborn though. Regardless of how he’s feeling, he does the silliest shit to make me laugh daily…he will go to any length to bring me joy and remind me that we are in this together. I am so grateful he is my husband and I have him by my side through all of this. He makes me want to keep going. He makes me want to fight though each step of treatment so we can enjoy life again and grow old together. I want to be here for him.

The kids too, but mostly Jeff. 😉

Thank you everyone who has helped out the past couple of weeks. I love you all. Thanks for checking in. xxoo

You’d think having been through this before, and so recently, it’d all be easier, right? At least, that’s what I try telling myself.  Truth is, it’s harder this time. My eyes are wide open, the scars are still there, and they are all being torn open.

Today my hair is gone. Again. A years worth of growth is gone.

This chemo is a doozy.

Thanksgiving morning, 2 weeks after starting my first cycle, while touching up my waves, chucks of hair started falling out with the slightest brush, comb, and tug.  Then, I washed my hair that night and as I rinsed out the suds, my hands were covered in hair. The next morning it was worse, Saturday I styled it gingerly, and then Sunday I threw on a headband just to get through the day.  But it HAD to be washed, it was due. I waited until before I went to bed to shower. It was like something out of a sci-fi movie. Handfuls of hair just being washed off my head. Then I made the mistake of putting a brush through it. That’s when I saw the bald spots.

I put on a beanie and went to bed. I didn’t sleep, but I went to bed.

I woke up and put a cute hat on top of the beanie. Anything to not see it or have loose hair all over me. I knew today was the day to say goodbye to my hair.

My dear friend and Master Stylist, Melanie, came over and gave me a nice even buzz. It’s the only way to take control over this very shitty situation. Just be done with it.

Feeling that cold air hit my bare head was not a welcomed feeling. It took me right back to last time.  Looking in the mirror is instantly unfamiliar. Who is that sick bald girl staring back at me? How did this happen to her? How did she get to this place?

Max, my middle guy, cried as soon as he saw me. I hugged him and comforted him and reminded him that it’s ok. This is ok. I lost my hair last time and it grew back and it’ll grow back again. He asked me if I could wear a wig and said “Absolutely. Because my head is effing cold!”

Comforting him, in turn, helped me I think. Maybe we were comforting each other.

All I know is this isn’t going to get any easier.

I’m finally coming out of the fog.

And judging from the past week, this is not going to be an easy ride.

As chemo goes, my first infusion went fine. I had a slight, but expected, reaction to the Rituximab on Thursday.  Friday we drove into NY to MSK.  We started in an infusion room where my IV went in and I started with two anti-nausea drugs and a 1 hour drip of Etoposide. Then I just waited around until there was a room ready for me.  By 6:30 I was in a room trying to settle in for the weekend.

Saturday we started at 12:15 with those anti-nausea meds, Etoposide again for an hour, another anti-nausea med, Carboplatin for 30 minutes, and then the big guns. A 24 hour drip of the last drug in this regimen, Ifosfamide/Mensa combo.

I realize these medication names mean nothing to the curious reader, but this is how I will learn what is being put into my body. I took notes as I was hooked up to each one, as a new bag of fluids was hung up to drip into my IV line. And watching the clock becomes an obsessive practice.  I know with each empty bag, each beep of my monitor, I’m closer to the Cycle being done and going home. But when that big ass, very freaking full 24 hour drip was hung, that was difficult. All of the sudden time stood still.

Anyway, Jeff brought the boys to visit. We watched Harry Potter, they left to do some sightseeing, they came back and we ordered some food and ate together. I was happy they visited, cried when they left. They were awesome and sweet and agreed that it was way less scary than they thought.

Sunday the fatigue started, and coffee was not appealing to me.  This was the first sign of what was to come. I finished that 24 drip at 2:45 Sunday afternoon. But I still had more anti-nausea meds, and one last hour of the Etoposide. I was officially done at 3:55pm. Discharged and home by 7:30. Home sweet home.

Monday morning I had some symptoms that took me in to be checked at MSK-Basking Ridge. Everything turned out fine, nothing to worry about. While I was there I was supposed to have a shot of Nuelasta, to boost my white blood cell count. The thing is, it can’t be given before 24 hours after treatment and it was way too soon. It was suggested that they put on “the patch” version of Nuelasta. Maybe you’ve seen the commercial for it on TV?  Upon this suggestion, I said, “The patch? Word!!!” The nurse began to explain how this “patch” works.

You see, it’s more of a “device” than a “patch”. They stick it on, it sort of counts down, and then it inserts (jabs?)a small catheter into your arm. It blinks green until 27 hours later, when it beeps, blinks faster and then releases the medication into your arm. At that time, someone must observe it for 40 minutes to look for any leaking or if the green light turns red.  The clever commercial shares none of this information.

At this point, I was completely turned off. I did not want this thing on me for that amount of time and the worry that was going to go along with the “what ifs” of something going wrong. Really, I had enough on my mind already. But I was going to a brave girl. And then the nurse DROPPED THE DEVICE AS SHE WAS ACTIVATING IT. She dropped it!!! That was it. That was my sign. I told her to stop, no, I couldn’t do it.

There were many apologies, but I explained that I just wanted a traditional shot and didn’t mind going back to get it. So, an appointment was made and home I went to sleep the day away.

Tuesday I woke up feeling just as exhausted as the day before, but back to MSK for the quick and easy Nuelasta shot.

What happens from here, I still don’t have the energy to fully explain, but Tuesday wound up being a really rough day for us. I’m ok, but it was a scary day.

So, as of today, Saturday the 17th, I am still very easily winded and lethargic, but it’s a little better than yesterday. Just typing this, with my eyes darting across the keypad and screen, I’m exhausted.

Thank you everyone that helped out with food the past week, gift cards sent and surprise meals. Thank you for checking in on me and Jeff. I’m still learning this new schedule after my weekends in treatment, so please don’t take offense if I don’t respond to text messages or calls. I just have to sleep on those days. I will reach out once I have the strength to.

I love you all. xxoo

Thanks for joining me and standing by me.

I’m just testing this out. It may go well and be oh, so helpful, or it will crash and burn.  So let’s find out…

My brain is going a mile a minute try to process and plan for what’s to come. But how do you process cancer? How do you process when cancer comes back? How do you process putting yourself back through chemo when you still vividly remember from the first time? How do you process and prepare being way from your family for in-patient treatment? How do you prepare for being alone in a hospital room hooked up to an IV with your husband not by your side (because, of course I want him with the kids!}. How do you prepare to pass the time being alone?

And this is only Phase 1 of my treatment plan.

Wait, wait, wait, back up. What are you being treated for, Missy?

Well, it’s not a recurrence of Hodgkin’s Lymphoma. That was my first go-around. Stage 4, beat it. October 19, 2017 officially in remission.

Just shy of my one year anniversary in remission, my scans lit up. Two biopsies later, it’s Lymphoma, but not Hodgkin’s…not Non-Hodgkin’s…not really sure if it has a sub-group… so it’s being called B-cell Lymphoma Mediastinal (Google it, if you really need more info). It’s all in the same family.

It needs to be treated aggressively, which brings me back to my treatment plan.

I start Thursday 11/8, at my local Memorial Sloan-Kettering (MSK), with my first chemo infusion. This will have me sitting for 5-6 hours getting the first drug in my regimen.

Then, Friday morning, Jeff will drive me into The City to the main MSK hospital, for in-patient chemo. I will receive the other 3 drugs over the course of 3 days. I will come home either Monday or Tuesday, depending on how it goes. This process is called a “cycle”. I will do 3 of these cycles, evey 3 weeks. So according to my calendar, my treatment dates will be:

November 8-12/13

November 29-December3/4

and finally, December 20-24/25

Yup.

And this is just Phase 1 of my treatment plan, as I mentioned above. (For my chemo savvy friends, I will be getting the RICE regimen, or cocktail, if you wish.)

Phase 2 is radiation, TBD, according to how I have responded to the chemo.

And then, Phase 3,  the stem cell transplant. Which will require me to admitted back into MSK-NY for three or more weeks, in isolation.

So, how do I process and prepare for all of this? How do I wrap my brain around it? How do I explain it to my boys? How do I ease any fears they have when I am so effing scared myself?

To start, I go into Mama Bear mode.  I HAVE to have my boys protected and squared away.

I’ve gotten in touch with all of their guidance counselors and teachers to prepare them for changes they may see in them. I rally my babysitters to be on stand-by for us before school and after school, because I have no appointment times yet, or an idea of a schedule for myself.  I just know this is starting on Thursday, and we will only be moving forward from there.

Moving forward…

Today I have to tell them. Today I have to begin to prepare them. I will remind them that we got through my first treatment, and we will get through this one too. I will explain that this is different and scary, but we will smash it together, as a family, with our support system right there backing us up.

I will hug them. While I can. Before my immune system is obliterated. Before I am in isolation and away from them.

Moving forward…

Oh, and I have to tell them they’re getting flu shots tomorrow too. I will be Mom of the Year.

Moving forward…