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The First Week Post Chemo

Chemo started last week.  I feel like this is the first day that I can honestly make the determination that I made it through and that it is behind me.  Life has resumed.  I might not be going 90 miles an hour but the cruise control is set and I am finally moving again.

Boston was interesting.  I usually LOVE Boston.  I usually cherish an opportunity to drive into Boston, but there was nothing about the trip that I was looking forward to and starting chemo with only a little over a week until Christmas was not going to brighten my mood.

Things didn’t get better with our hotel arrival.  We stayed at a nice well known hotel chain but the hotel was in a horrific part of town and was basically crawling with drug addicts on the outside.  When I had called the reward member hotline to arrange the room, I said yes to the cheaper hotel that was only half a mile away from the one closer to the hospital.  I figured there would be hardly any noticeable difference since we had always had good experiences with the brand.   However, I forgot that things can change a lot over half a mile in a city.  When we pulled up it was like I was arriving into a Walking Dead scene or some other apocalyptic end of humankind movie scene.  The security guard was armed and looked traumatized as he opened the hotel lobby door.  It turns out that the hotel had an issue with someone who had to be revived twice due to a drug overdose on the sidewalk.  Needless to say, I will not be willing to stay there again and now understand the difference in pricing between the two hotels in the same chain.  The hotel that is closer to the hospital will definitely be the better investment even though it is almost double.  Especially, since it will also mean no shuttle ride to the hospital (another experience I am not partaking in).

Instead of driving in at a ridiculously early hour, we chose to drive in a day early because they were predicting a chance of a little winter weather.  I knew that with the help of a sleeping medication they prescribed I would get a somewhat good night’s sleep and figured the few extra hours of sleep might make the coming few days easier.    

Chemo Day 1 began with me being in one of the foulest moods I have been in for some time.  I was pissed off for needing to get up at a ridiculous hour.  I am not a morning person.  The optimism that I can usually muster to face a day of some non-preferred activity was nowhere to be found and I could feel my very supportive husband bracing for impact.  To call my attitude poor was a gross understatement.    We had decided to leave our car behind and take the free shuttle to the hospital.  I will never take a hotel shuttle to the hospital again, EVER.  I found that without my coffee I could not control my aggravation and gave an extremely rude person a little bit of a tongue lashing when he proceeded to block out the other three rows of the shuttle with his luggage to the point the little old lady (not myself) who was obviously going through chemo herself had to struggle to climb over the luggage to wedge herself in the back of the van.  Giving a tongue lashing is NOT in character for me, but I still stand by that I went easy on him and if I had it to do over again would probably be less reserved then I was.  

The port placement was annoying. It was not at the cancer center but was at the hospital next door.   What was supposed to be half an hour ended up being half a day.   They made us get there for 6 am but then informed us that everyone was in meetings and they would not be able to start until closer until 9 am.  Cue my frustration even more.  I swear I heard thunder crackle when they told me I would spend a good chunk of my morning waiting with no coffee or breakfast.   

When they finally got around to the port placement they brought me in and then proceded to assault my already healing wound by binding the area so tight I could hardly breath.  They were then shocked when I told them that there prep plan included using a prepping agent that I was highly allergic too.   They had their “safety pause” double checked my allergies and made the appropriate switch and from that moment there was nothing else pleasant about the procedure.  In fact, at one point my blood pressure dropped too much and I vomited and passed out.

 The report from the port placement came in yesterday morning and I had to laugh at the reflection that I tolerated the procedure well and that it was “discovered” pre-procedure that I had an allergy and had to have an alternative prepping agent. It has been in my chart for years and each person who checked my allergy band could see it!   I came to in recovery and just was on a mission to get away from the charge nurse who I dubbed as Nurse Ratched due to her attitude and less then loving bedside manner.  I had an appointment at the cancer center to have labs later that afternoon but when Nurse Ratched saw that she decided she was going to just do the labs herself despite my refusal.  I tried my best and refused but the Nurse Ratched ignored and drew the labs anyway.  I am pretty sure that there will be a more expensive charge to my insurance with it being done inpatient rather than outpatient next door.  

Knowing I was heavily medicated and wanting to get away from Nurse Ratched, I decided it would be easier to become hyper focused on making sure that my eyes displayed my true thoughts while my mouth stayed clamped shut so I could leave and continue on with my day next door.  

The cafeteria at the cancer center has great soup.  My mood turned around with some soup and juice.  I found myself more optimistic once I made it over to my chemo appointments.   The first day of chemo went by quick after that.  We met with the oncologist who I think is fantastic and then we went for the first infusion.  They only did the Bendamustine that day and I was shocked at how quick the whole thing took.   Even though the port hurt to put in…It was really so easy to do the infusion and I only had 20 actual minutes of an infusion and was able to go on my way.  We talked with my nurse about the next day process and then left the hospital. 

When we made it to the lobby we called the hotel to find out where we could pick up the shuttle back to the hotel but were told that the shuttle would not be offering pick up.  They were only running from the hotel not doing pick-ups.  What is the point of that???  Not what we were originally told.  At that point I had already figured out that Wahlburgers was half a mile down the road and I was on a mission.  My husband at the point had two choices, he could go off looking for a shuttle to the hotel or follow me to get a burger because I had started walking.  A trip to Wahlburgers had actually been on my summer to do list but had never happened since I had run out of energy.  Honestly, I felt like after the first day of chemo I deserved a cheeseburger.  I was shocked that I wanted to eat but felt hungry and just wanted a little comfort food after the morning. The burger was heaven and I ate most of my husband’s Mac & Cheese. 

In hindsight, we should have taken a Taxi but I just needed the walk and to be moving and leave the negativity that I had experienced earlier behind.  We ended up taking a taxi cab back to the hotel after dinner and it is pretty much a blur after that.  I think I fell asleep pretty quick. 

Day 2 of chemo, I woke up optimistic.  I was able to have coffee and eat a small breakfast.  I made phone calls like I do every morning and bolstered myself for a day of what I thought would be easy chemo like Day 1.  We drove ourselves to the hospital and parked in Valet.  I found myself a little tired but settled in to my area for chemo. They came in and did the second Bendamustine treatment and then started pre-meds for Rituxin.  Initially Rituxin started out slow and I did great when I was at 50, then 100, but when they went up to 150 I started to have breathing problems and developed a wheeze as though I was having an asthma attack.  They came in and evaluated and called respiratory.  It was determined that I was having an allergic reaction and my tongue had swelled.  They quickly got things under control gave some more allergy meds and started up again.  I stayed at 150 for awhile.  Then they creeped it up to 200 and kept me there for a bit.  I was a little tired but was doing okay.  I felt happy since it was the half way point and felt that I was through the woods for reactions….not the case though.  I happily posted a selfie of my 200 with a thumbs up to Facebook. 

Then the storm developed at 250.  I found myself getting agitated.  My stomach started to turn.  My throat hurt.  My mood darkened.  I developed a cough and then my tongue started to swell again.  At first I tried my best to ignore it.  I didn’t want to say anything because I just wanted to complete treatment and go home.  I became focused on going home.  Finally after realizing that I couldn’t swallow even my sip of water, I paged the nurses.  The nurses were phenomenal.  They came and realized what was happening without me even needing to say.  They stopped the Rituxin and administered meds to counter the reaction.  Respiratory was paged again.  The oncologist came in and I CRIED.

The 250 was my max threshold.  I was exhausted at that point.  I had done more than half my course of Rituxin and had two anaphylactic reactions.  They decided that I had enough and the oncologist said that I did great for the first time but that they would wait until next month to give anymore.  I cried because I felt like I had quit and I pride myself on my ability to muster through and not quit.  My body had failed me again.  I was worried that if I wasn’t getting the full dose that the cancer would get worse.  I wanted to give it everything that I had and even though I didn’t know where I was going to find more…I would give it more.  The Doctor explained that there were many people who did not make it through what I did the first time.  She explained that more than half the dose was great and that she was comfortable with having me come back in a month.   I opted for the wheelchair to Valet and got in the car and we started home.  I made a few phone calls to my morale support team, upset after only making it through half the Rituxin but just wanted to go and sleep.

Day 3 wasn’t too bad.  I spent most of the day in bed but felt okay.  Everyone had said that day 4 & 5 would be the worst.  Saturday was my day of hell.   I felt nauseous all day and had a fair bit of pain from the port and just did as was recommended and spent the weekend staying on top of all the meds.  

A friend today asked me if it was exactly as they said it was going to be.  My reply was yes, it knocked me on my ass.  Now it has been one week and I feel like I am back to where I was pre-chemo.  I have energy again although it is not where my pre-cancer energy level was.  I was able to sneak out to the grocery store with toddler and complete Christmas grocery shopping.  I wore my gloves the entire time and sanitized my hands as soon as getting back to the car.  Staying quiet is tough for me.  I like to be busy and follow a schedule of events all day.  Sitting around watching Netflix has been tough and I was just so happy to walk around the grocery store even though I had to refuse the toddler every cookie in the cookie isle. 

The past week has brought a wide-range of emotions.  I have been happy and over joyed hat I had a crazy quick reaction to the chemo and my once visible lymph nodes have retreated back to invisible after only one day post chemo.  Despite that happiness, I have been pissed off and wiped out as I struggled with the medications and side effects.  I have never been more tired than I was this past weekend, even after giving birth.   I have worried that the amount of pain pills I was taking was going to cause some type of addiction (luckily that one was all in my head and I have been off of them for 72 hours without an issue). 

The most surprising emotion that I felt was grief.  I have mourned the missed special moments that always take place during this time of year.  I lost what I have always referred to as my magical week with my kids.  Certainly there are elements of the magic.  Now that I am feeling more of myself there are things that we will do but I have felt guilt that we did not do as many of those special little holiday magical things that I cherish. 

I have been trying to accept that Cancer will change my life.  There are going to be things that I can do now and things that I can’t.  I am used to doing 90 million different things and this year I have had to scale back to almost nothing this month. 

I am that person who attempts and loves all those little Pinterest holiday kid crafts and experiences.  In years past, our Elf on the Shelf is a star to our friends on Facebook and has done something entirely creative and new every night.  This year there was no way that was happening.  Our Elf moved but things were not as messy or creative as they were previously.  They were subtle but still magical (or at least I hope) for the kids. 

We are making chocolate chip cookies together tonight, but the kids don’t know the dough is store bought and not the special Gigi recipe. Somehow I don’t think my grandmother will mind that I am not using her recipe tonight.  In fact, I kind feel like if she was still here with us, she would have brought over the store bought dough.   It has been harder for me to accept that this is okay.  I am pretty sure the kids are not bothered as deeply as I am.

I have always known to revel in the magical moments and cherish and savor them.  I have seen a lot in my life that has always made me have a special appreciation for the truly special moments.  I wanted to make my post about the past week, but most importantly I wanted to be able to say it is over and that I can go back to being somewhat normal for another few weeks.  At least until January 12th when chemo begins again…on my birthday.

I realized that my Christmas wish is different this year then it has been before.  I have always wished for Christmas memories and magic for my children, but this year I just hope that there is “enough” magic so that someday when they think back to Christmas time and might remember year 3 & 6 that they don’t remember Mommy being sick.  I hope instead the remember cookies, Christmas lights, toys, and happy memories. Cancer can suck.  It can really suck at Christmas time when you have little children and always set high expectations for yourself.  I just pray most of all that this Cancer experience hasn’t had some type of irreversible traumatic effect on them. 

Mike sent you a hug.
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Your kids will still have amazing memories. My teenagers remember making cookies but they wouldn't remember if the dough was homemade or store bought. Just tell yourself a year from now you can do things and let everything else go for the next few months. After a couple more treatments your body is not going to let you do anything anyway. Sometimes I can't get dressed and I am not a stay-in-pajama-all-day-person. I finished chemo a month ago and I am no where near recovered. I hear you on the days of Netflix....I also discovered all sorts of great shows on YouTube and during one of my long hospital stay I watched all the Harry Potter movies on our portable DVD player. The days will be long but you will get through it. And I say, if you are grumpy don't feel guilty about it. I spent a lot of time alone or talking to a few good friends about it. Just try to find some humour because there are so many funny stupid things that happen.

Oh....has your hair come out? Because if you are looking for headgear I HIGHLY recommend getting a few buffs rather than head scarves. They are so much easier.
Welcome to the club my friend. I'll bet you could see laser beams shooting out of your eyes at that nurse at the hospital! Rituxin is a great drug- it goes specifically to those damn lymph nodes and kicks their butts without doing much damage anywhere else - BUT, they are nasty cells, and they don't like 'da bomb' coming in to your body and smoking them out, but Rituxin works and works good - once your body realizes that it's coming in on a mission. They had to stop me and drown me in Benadryl on round 1 and then take it really slow, so my Rituxin could end-up being a 6-hour day, so that's why I always suggest taking the whole kitchen sink of items to keep you busy. When they put my port in, they actually put the 'connector' in the same day and taped-it-up until my chemo the next day. Yep, it was sore for a couple days, but a few Advil and it was better in a week. Just try to keep the seatbelt strap off of it (depends if you're driver or passenger). You made it kiddo- and you put your anger into going for a walk- great deal. Important thing to remember is that you have dropped the atomic bomb on your cancerous lymph node cells with the Rituxin- those cells are melting away, and in 4 weeks they will get a 2nd atomic round- your body should have a better time this next time, and as long as they ramp it up and stop when you get to your tolerable limit, it will just take longer, that's all- but it's still doing its job either way. Enjoy your children, the lights, the cookies, the decorations, sing songs with them- enjoy the trappings of the season knowing that a year from know your treatment will have bombed the bad cells and you can enjoy Christmas with your family with cancer a distant memory. May God Bless You.
John
Hi Christi,
I am sorry you have to get through all this but you will be OK. The first week after chemo is always the problem one. A good thing from your chemo is that you do not get the famous Prednisone drug that makes your life a living hell. It did for me specially because you stop it cold turkey after 5 days of 100 mg. The withdrawal from Prednisone is worst than the chemo itself and I was very tired day 6-7 after chemo. You are getting only one drug I understand? Bendamustine? I think you will not have hair loss from it. Another good thing. For us with R-CHOP the hair was gone after first chemo. At least mine was. I am not sure now how Bendamustine affects the WBC. You have to be careful of fever and infections. Your immune system is very low after chemo that destroys it. I got to have a drug called Neupogen that stimulate the bone marrow to produce WBC. Getting this drug saved me from any infection and fever. Some side effects but nothing major. I wish you a very happy Christmas and good luck with your treatment. Dana
Christi, Dana described it well- if you aren't having the whole R-CHOP regimen, then life should be easier during treatment- the cold turkey on Prednisone didn't hit me until Chemo #5 then I turned into the Hulk; also hair clumped-out 12 days after R-CHOP, so you might be lucky enough with just your 2 drug cocktail. Also, I had Neulasta injections, but that or Neupogen work wonders on keeping your WBC count decent - minor side effects, but worth it. Merry Christmas to all. John
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Vital Info

Posts

November 22, 2016

Plainfield , CT 06374

January 12, 1984

Cancer Fighter

Cancer Info

Non-Hodgkin Lymphoma

Follicular Lymphoma

November 16

Stage 4

over 6.1

Yes

Tamoxifen

Rituxan

I hate knowing this is going to effect my two children.

Patience

Send a text, call, email. Make a meal or bring take out. Come lend a hand by taking the kids around the block on their bikes.

Lymph node swelling neck, armpits, groin, stomach pain

Lymph node removed from armpit, groin, and lumpectomy 11/16/2016

Bendamustine & Rituxan

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