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Christi's Cancer Blog

Why, this watch is exactly two days slow.

It is odd to think that almost two months have gone by since my last post.  It wasn’t until one of the followers of this blog asked for an update that I realized that it had been so long.  Whether or not it was chemo brain or if it is that I have lost time with recovery from treatments, I cannot say for sure but the one thing that I do know is that life has gone on and I have fallen into a rather boring routine.

I wish that I could say that I have been out doing something incredible but the truth is that I have spent a lot of time resting when I don’t feel well and for the few days that pop up in which I do feel good, I try to savor the time with my children and do something a little extra special (like bring them to eat ice cream for dinner).   I guess in its own way that is truly incredible though.

Since my last post, I have taken a leave of absence from my graduate school.  With the fatigue that I have been experiencing and the week that I lose to every chemo round, I found it impossible to keep up with the work.  Chemo brain is absolutely brutal on my memory and when I am attempting to memorize something for regurgitation on an exam, it is impossible.  I had a friend who pointed out that cancer feeds off stress and reminded me that the work would be there when I was ready to return.  After a breakdown and a good cry, I made the decision that I would rather spend my good days with my kids then catching up on school work. 

For the first few days after a chemo round I have found that I am so wiped out that I tend to sleep or stay in a medicine induced fog and binge watch shows…or at least attempt to.  I played one episode of House of Cards four times since I kept falling asleep or forgetting what took place (not to the shows fault).   

Round 2 in January and round 3 in February knocked me on my butt for a solid week each and even when I thought I was over the worst of the symptoms (extreme nausea and extreme fatigue) I found that I was anemic and my fatigue came back with a vengeance. After the last round, the doctor said I am experiencing what she calls the round 3 hump.  My body is getting tired and it is running out of steam so everything is a little off.  She assured me that there are several things that they can try to get me over the hump and she is talking about giving me a couple of different injections after Round 4 that will help solve the issue of the anemia.  While I am hopeful that I will gain a little more energy I am scared of the list of side effects that they are telling me about. I jokingly asked the doctor of the phone “It can’t get any worse right?” and the doctor laughed and didn’t exactly make it seem like it would be a walk in the park.

I try my best to stay optimistic but the truth is that I am scared.  I feel so incredibly crappy with low energy.  This is not me.  I am so used to being busy and being out and about.  Now I find it a necessity to avoid things that I loved to do because there is a potential that someone could be sick or be getting sick and if I get sick right now it throws the chemo cycles off.   In addition, since I have a few lymph nodes that have not disappeared and some of my symptoms like extreme night sweats are still hanging on, I have to go for a repeat PET scan this month.  Normally, the doctor explained that she would wait till the end of chemo to do a scan but she wants to have a look now.  I have anxiety about the PET scan.  I want everything to look great and not knowing if it is great right now is driving me nuts. I want to be optimistic but like I said, the truth is that I am mostly scared and that is making my usual sense of optimism waiver. I have been following along on a few blogs and not every story is happy and it bothers me more than I let on.  I don’t know how I would handle a setback right now so the only thing that I can do is pray and wish with all of my might for perfect results.   

I have always been used to doing a million different things and I find that I have no patience for just sitting around but then again I don’t have a ton of energy to do anything else.  I have fallen into the habit of reading classic books again.   Currently I am re-reading Alice in Wonderland.  It is kind of funny how I can draw several parallels between my life and that sense of disorientation that Alice experiences as she struggles through Wonderland as she attempts to figure out just who she is.  There have been so many lessons that I have learned throughout this new journey and it seems like every time I think I know who I am and where I am going, it changes just a little bit. 

I need spring to be here. I want to be able to enjoy the sunshine and fresh air.  I know that spring will bring a happy distraction from the “what ifs” that have been running through my head.  I am so ready for this to all be over and I know that this journey has already changed me several times since I started.  I am already a different person then I was when this journey started and I look at things differently.  I also know that I am going to look at things three months from now differently then the way that I am looking at them now.  

Frances, Frances like this post.
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3 people sent you a hug.
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Hi Christi: "The Poison that Heals" aptly describes chemo, that's for sure. Be assured that Rituxin are miniature "Kamikaze pilots into cancer cells"- so that's the good news, the bad news is that the "cancer fighting cocktail" that gets pumped into us also beats-up some of our good cells in addition to bombarding the bad ones. My experience was a bit different than yours- the actual 3rd infusion was actually tolerated the best, as was the 4th; however, I did share something with you- the 3rd was mentally the most difficult. After the 3rd round the PA nurse had me fill-out a survey on which I wrote that I was mentally challenged by not knowing if the damn IV bags were doing anything- and they understood that. Have no concern about your PET scan test- as I always say: "You can't study for it, and worrying about it can't change it". Once you get into the 'tube' the scan time is much shorter than MRI's if I recall correctly. I had a special diet the day before: cheeseburgers with no buns, tea with no sugar- hey, works for me. Anyhow, for my PET scan at least, I was smart enough to take a music/MP3 player and earphones, as I had to sit in a dimly lit room for one hour prior to the test after they injected me with some protrons or Cheerios, or whatever. Couldn't have any visitors either, so the music helps. Anyhow, the PET scan was a Godsend as it showed that the chemo was doing something to shrink things and I was getting better, not worse. I'm no doctor, but may I suggest you talk to yours and see if you can get a Neulasta or similar white count injection the day after chemo? It helped me not worry so much about human contact, and maybe the nasty steroid Prednisone- it speeds-up healing, and gives you a burst of energy so you can go for a walk around the block with the kids. Hang-in there; Spring IS coming- that alone will make you feel 10x better, as will seeing some progress in your PET scan. MGBY, John
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May I suggest to your reading list one of my favorite books? It is called Wherever You Go, There You Are. It's author is Dr Jon Kabat Zinn. It's short segments so it works for my chemo brain and reminds us to live in the moment and to be mindful. I think you will love it. You can get it through Amazon.
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Trepidation before a scan is a normal response. For me it triggers the fight or flight syndrome. I have found that sharing my concerns help. It helps me vent my anxiety, then do something to alleviate the stress. Try to do things that will make you happy. Have a girls day, spend time with your children. My husbands 2 year check up is Monday, so I have scheduled a Ma & Pa day. Grand children always make me feel better. Hugs
Hi Christi,
Hang in there, I know you want to slap someone saying that, cuz it is hard as heck to go through the chemo. After I had my 3rd one I said to my husband, that's it, I am done, I can not endure another one.
But, thank god, he gave me strength to keep going. I was miserable, tired all the time, Chemo Brain, omg, always. I would forget words, I couldn't remember what I said earlier and sometimes my sentences made no sense. I slept a lot, just remember your body is trying to heal, so take it easy and rest when you can. You can do this, be gentle to yourself, take it easy when you can and don't feel guilty about it. Spend your time with your kids and just BE.

I am in my 6th year of remission and I send all the strongest vibes and best wishes your way. You will be a different women once you finished your treatment. You will be stronger and more grateful for the every day things, I know, I am!!! Also, 3 years after my last Chemo I ran my first Marathon!! I thought I never could! But, I did!!

I hate what we have to go through to get better, but it is the only choice!!
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Resolution 2017: Kick Cancer to the Curb

Happy New Year! I know that 2017 will be a tough year but I think I am ready to conquer it.  While most people have resolutions like lose weight, save more money, travel more etc…I only have one resolution.  I need to and will kick Cancer’s ass this year.   It certainly will be challenging but I know that it is one resolution that I must keep and that I will achieve.

Besides the nagging cough that I have had for the past month, I am for the most part back to my energy levels that I had around September before my exhaustion really started to kick in…I think it is kinda funny since the next round of chemo is this coming week and I will be knocked on my butt again.   There are some days when my energy level is great and then other days when I really feel like there is something dragging me down, but I feel like I have been able to get back to a semi-normal life over the last week and half.

We had great results very quickly from the first infusion.  While none of my neck lymph nodes have popped back up, I am concerned because I can feel nodes in my underarm that grew just a little more.  Then again maybe I am just noticing them a little more since I have lost a little bit of weight since the last chemo.  I am hoping that after this coming week that any noticeable lymph nodes shrink some more and I have to say that I won’t be too mad if the scale also reflects shrinkage. 

I am interested to see what my blood counts are since I know that I have had a bit of a hard time healing.  About a week ago I bumped my forehead on a car door (not even that hard) and ended up with a pretty good bruise that spread downwards giving me a black eye.  I know that my reds are a little lower than they should be.  The other thing that I have noticed is my paleness.  I am Irish & Scottish so I am used to pale skin but there are times when I literally look like a ghost I am so pale!  At least it is January and it is not too noticeable.

I have mixed feelings about the upcoming chemo session.  I want to get it done and over with but I am also a little down because it falls on my actual birthday.  Who wants to be sick or sitting getting chemo on their birthday?  Don’t get me wrong…I am grateful for the chance to get chemo at such a great hospital and that it will allow me to celebrate many more birthdays, but it is not my idea of a rip roaring time.  I am hoping that I am going to feel well enough to have a little piece of birthday cake at some restaurant in Boston and pretend that I am travelling to a chic urban city for my birthday rather than for chemo…

I paired down my chemo bag and my Netflix cue is loaded up on my IPad.  The next thing is just to “nuke” the cancer cells again and start moving forward on what is probably the biggest resolution of my life. 

 

 

 

  

 

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3 people threw a punch at your cancer.
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I hope you are pleasantly surprised when receiving Chemo. Hopefully the oncology nurses will help you celebrate your birthday in a really awesome way! It will be a Birthday like no other. Celebrate being a live, and on your success.
I was just talking about my paleness this morning to a friend! You may find however that the prednisone gives you rosey-red cheeks for a few days (and puffy eyes - very glamorous!). Hope all goes well on treatment two! Take advantage of your energy when you have it and spend it all doing fun stuff with your kids....let someone else do the house stuff. And rest when your body tells you. It won't be laziness - it will be your body telling you it needs to recover.
Hi, sorry I didn't get a chance to wish you a Happy Birthday last week, so I'm doing it now. Yes, I was a pale ghost for 18 weeks, but hey, it was worth it 4 years later. I'm glad that you are taking a whole bag full of goodies to chemo, that's always my suggestion to R-CHOP or Rituxin infusions as they take a looonnnggg time. You have a great New Year's resolution: kicking cancer's ass. I pray that your treatments shrink away the bad cells. Don't worry yourself about the nodes; that's for your doctor to do- all you have to do is sit there and let the Rituxin dive-bombers do their work for you. Hope you enjoy the good days, and forget about the not-so-hot days.
MGBY,
John
Christi- any update for your BFAC friends here on how you're doing?
MGBY, John
I was just thinking how I needed to make a post. I am currently sitting in the lab waiting room since it is looking like I am really anemic and might be heading towards a blood transfusion. I just went thru round three about a week and half ago and it knocked me on my butt for a few days but I initially bounced back okay...then the fatigue hit again. Hoping that this is just a fluke and things are good and I can avoid the transfusion! Keeping the Positive attitude!
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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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