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Christi's Cancer Blog

Persevere: To Persist In Anything Undertaken

During my last chemo they repeated the PET scan and we had fabulous results.  There are many lymph nodes that disappeared completely and many of the tumors have decreased by half of the previous size.   I am thrilled to know that the chemo is working and it has helped me tremendously to know that even though I feel like crap, the drugs are doing exactly what they are supposed to be doing.  The last round (4th round) was tough.  I ended up with anemia and my body clearly was fighting hard.  My body is also going crazy at the current moment and although I am only 33 years old, the chemo drugs are causing chemo related menopause…combine that with the steroids and my moods have been absolutely lethal from time to time.  God bless my husband. He has handled most of it with ease and hasn’t had a heart attack yet.  He did warn that when I get around to actual menopause he is probably moving out (bahahaha). 

I am a little less than two weeks away from my next chemo round and I still don’t feel completely ready.  I find I get fatigued easily and my hands and legs have a slight tremor that gets worse as the day progresses and I get more tired.  The tremor ticks me off. I look at my hands and when I see them shaking, I get so angry.  I am guessing that I get so angry because for me the tremor is a sign that I am not at my strongest and I desperately want to always appear strong even when I am feeling weak.  I know that it is okay to be weak at times but it still bothers me. 

I am very hopeful that by late spring/early summer they will be able to say that I am in remission.  Despite knowing that I am heading towards remission (which I am thrilled about) I have to admit that I have a little anxiety about being in remission.  Every aspect of this has been hard.  When I asked how long I could expect remission to last they had said 3-5 years.  The oncologist has said that this is not curable. It will come back and what worries me most is that there is never a good time for cancer to rear its head.  I am young and so close to finishing my graduate degree, I worry that I am going to be in the midst of getting my career underway when this rears its ugly head again and I am forced to once again put things on hold.  I am also worried that it is going to take so long to rebuild my strength and endurance that I am not going to have it in me to get my degree complete in the quick timeline I had planned.  Let’s face it; handling a graduate degree with two very busy children was no walk in the park when I was feeling healthy.  Doing it when I started to feel sick was very hard and doing it while undergoing cancer treatment was impossible.  I am worried about the feasibility of doing it when I am still recovering.  I am also still incredibly bitter and pissed that this was not caught at an earlier stage since I am told that if it had been, it would have been curable.  I am going to try my hardest not to dwell on how long remission will last.  From reading other blogs, I have developed hope that I will eventually get to the point of not thinking about it.  I still worry.  I worry about my kids, I worry about my husband, I worry about my career and I worry about finances.  Despite knowing it will come back giving up is and never will be an option. I will always fight and fight again.

This also hasn’t been easy on the kids.  My littlest is 3 and while we haven’t seen a huge impact on her, I haven’t had as much energy as I did with my first in doing special little things like playgroups and there hasn’t been as much energy for crafts and teaching.  I find the fatigue has impacted what I can do with her and she has had much more TV then I would have allowed with the first.   Cancer has definitely visibly impacted my 6 year old. It can be heart breaking because he is always asking me how I am feeling.  He wants to know if the cancer is going away.  It breaks my heart so much because I can hear it in his voice at times, and while he is not flat out asking, he wants to know if I have energy for some special activity.  I was able to recently go to his school to see a presentation that he was doing and it was incredible but that mother’s guilt creeped in.  It was the first time this year that I have been able to get to see something at his school. My oldest is one of those kids that are too smart at times.  He knows how to google, he knows how to read at a very advanced level and that has led to him finding out some information at school about cancer that has caused anxiety.  A six year old shouldn’t have to worry about a parent, yet we have found ourselves in that situation and trying our best to address his fears with truthful but also comforting information.  There have been wonderful special little moments with both of them over the past six months but I know that there haven’t been as many as there could have been and I fear that when they look back on their childhood that they will remember Mommy having cancer and it being horrible.  I want them to remember magic and happiness not worry. 

I am going into round 5 of 6.  I am sooooo ready to be planning for fun instead of planning for chemo.  It is time to plan something magical.  While I hope for 20+ years in remission, if I only have 3-5 years before I have to fight again, I want to know that I jam packed a little magic into those 3-5 years. 

Ilsa threw a punch at your cancer.
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Praying for you Christi!
Please slap your doctor upside their head for me- I think what they were trying to say, is that if it does not return in 3-5 years, then you are in remission? Am I wrong about that? My Onc said if you can keep NHL away for 3yrs, it most likely won't come back. My Brother-in-law had R-CHOP 15yrs ago, and me 5yrs ago, so don't "make plans" to get a rerun- ok? Glad the chemo is doing its job- and ask your doctor about the trembling - maybe need just a 'chill pill'? That's my advice for today, good bad or otherwise. MGBY and may you continue healing.
Hey John! I wish this was a case of mistaken information but she is awesome. I even asked twice and got the same answer and it corresponded to what I had heard from my first opinion too. It is treatable but not cureable and when I asked if it would come back she had said 3-5 years. With that being said I feel confident that they will continue to make great strides and that I will have options for care for awhile. It is just going to linger there in the back of my mind. I am happy that we are coming to the end of these chemo rounds. I need the break!
Take the 3-5 years, it may or may not come back! With the way our medical community is making new discoveries there may be a new "cure" by then. Try not to worry, easily said, not easily done. Keep fighting the good fight!
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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.
Nathan threw a punch at your cancer.
3 people sent you a prayer.
4 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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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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