Strange Deja Vu - fall of 2009 repeat?
Kathryn_in_MN
Member Posts: 1,252 Member
This is all so crazy. It is like last fall all over again, minus colon resection, but adding in thyroid troubles in its place.
I really thought I'd have more time to get caught up and get my life and business back in order to where I like it to be before I'd ever face chemo and the battle again. I've been so fatigued, thinking I was taking a ridiculous amount of time to bounce back after chemo. I accomplished about 1/4 of my to-do list for the summer. And I cancelled my month August in Mexico with my youngest son and his best friend, because we just can't afford the tickets. Once I get there, living is cheaper than here. I was being responsible. Now that I'm definitely a Stage IV - no more "we aren't sure," I wish I hadn't been so damn responsible, and would have just gone with my son.
So August 31, 2009 - colonoscopy that found the obstructing tumor. Pre-op on September 1, and resection on September 2. I'd just returned from a month in Mexico, and had no time to get caught up or organized for what was to come. The rest of the month a whirlwind of medical procedures and appointments. PET, dental, mammogram, annual with PAP (which came back ASCUS and I still haven't followed up), port placement, port infection, hospitalization and removal, then another pre-op needed, and second port placement. Add-in all the follow-up appointments for surgeries and infection, chemo education class, chiropractor, oncology appointments, nutritionist and more. Almost every day at least one medical appointment. Then chemo started October 22, and my bi-weekly appointments turned out to be 2 or more every week, plus hospitalizations, ER trips and lots of fun. Got through it all, with port taken out in June - with infection and another hospital stay. And I thought that should be the end of it all!
Surprise! August 31, 2010 - PET to confirm that my rising CEA had a reason - 3 enlarged metabolically active lymph nodes in the upper abdomen. Deja Vu in a big way! So here we go again - panic mode to get everything done that I thought I would spread out over the next two months. Needle biopsy September 3, and oncologist appointment with confirmation of Stage IV on September 7. Yesterday I was able to squeeze into the dentist. Today I have my pre-op, and the PA agreed to do my Pap. (I've needed to follow-up but chemo whacks out the test - my OB/GYN has done every pap since I was 19, but he works far away, and it would be one more appointment to fit in.) Tomorrow I'll have my third port inserted. (NO infections for this one please!) Monday I am getting my first haircut since last October 5th! I want to see what I look like with short hair, since I've always had long hair. When I lost 9/10 of it on FOLFOX, I pulled the remaining long hair back and put it up - an illusion of still having long hair. It will be interesting to see a short style for a few weeks till I most likely lose it all on FOLFIRI. After the haircut, I'm seeing a therapist. This is something I did not do last time around. I'm going to see her myself - and then later I'm dragging my family in! After that one, I see the endocrinologist. My primary pulled some strings to get me in - the earliest opening they had was October 13th, but I really need this thyroid under control now (TSH very low, T3 and T4 acceptable - thyroid lit up on PET, and I have all the symptoms of hyperthyroidism.) Tuesday, Wednesday and Thursday I'll be working my a$$ off to get business and household stuff in order.
Friday round #1 of FOLFIRI w/Avastin - chemo #13. I counted down on my calendar for my FOLFOX, rather than up. Now that I might be on chemo the rest of my life, I'm just counting up. But when I hit #24, I will hopefully get a break for a while, and we'll just monitor really closely. Maybe I'll even stay NED after that. Maybe FOLFIRI and/or Avastin is what I need to take out those last stubborn cells that hid out from the FOLFOX and grew after I stopped chemo.
Maybe it is a good thing that life has been a total whirlwind both times. I'm too busy making appointments, attending them, and trying to get work and home in order to dwell on much. The one thing that is easier this time is I have so much more knowledge. And thanks to so many of you here, I already know about the new drugs I'll be on, and treatments and options and situations that apply to stage IV. I don't feel so lost and ignorant, and don't have to spend so much time researching and learning. I know the basic ropes. And I've learned a lot about what to expect in the future.
I can't imagine starting out on battle #2 without the knowledge and support from all of you! Thank you all!
I really thought I'd have more time to get caught up and get my life and business back in order to where I like it to be before I'd ever face chemo and the battle again. I've been so fatigued, thinking I was taking a ridiculous amount of time to bounce back after chemo. I accomplished about 1/4 of my to-do list for the summer. And I cancelled my month August in Mexico with my youngest son and his best friend, because we just can't afford the tickets. Once I get there, living is cheaper than here. I was being responsible. Now that I'm definitely a Stage IV - no more "we aren't sure," I wish I hadn't been so damn responsible, and would have just gone with my son.
So August 31, 2009 - colonoscopy that found the obstructing tumor. Pre-op on September 1, and resection on September 2. I'd just returned from a month in Mexico, and had no time to get caught up or organized for what was to come. The rest of the month a whirlwind of medical procedures and appointments. PET, dental, mammogram, annual with PAP (which came back ASCUS and I still haven't followed up), port placement, port infection, hospitalization and removal, then another pre-op needed, and second port placement. Add-in all the follow-up appointments for surgeries and infection, chemo education class, chiropractor, oncology appointments, nutritionist and more. Almost every day at least one medical appointment. Then chemo started October 22, and my bi-weekly appointments turned out to be 2 or more every week, plus hospitalizations, ER trips and lots of fun. Got through it all, with port taken out in June - with infection and another hospital stay. And I thought that should be the end of it all!
Surprise! August 31, 2010 - PET to confirm that my rising CEA had a reason - 3 enlarged metabolically active lymph nodes in the upper abdomen. Deja Vu in a big way! So here we go again - panic mode to get everything done that I thought I would spread out over the next two months. Needle biopsy September 3, and oncologist appointment with confirmation of Stage IV on September 7. Yesterday I was able to squeeze into the dentist. Today I have my pre-op, and the PA agreed to do my Pap. (I've needed to follow-up but chemo whacks out the test - my OB/GYN has done every pap since I was 19, but he works far away, and it would be one more appointment to fit in.) Tomorrow I'll have my third port inserted. (NO infections for this one please!) Monday I am getting my first haircut since last October 5th! I want to see what I look like with short hair, since I've always had long hair. When I lost 9/10 of it on FOLFOX, I pulled the remaining long hair back and put it up - an illusion of still having long hair. It will be interesting to see a short style for a few weeks till I most likely lose it all on FOLFIRI. After the haircut, I'm seeing a therapist. This is something I did not do last time around. I'm going to see her myself - and then later I'm dragging my family in! After that one, I see the endocrinologist. My primary pulled some strings to get me in - the earliest opening they had was October 13th, but I really need this thyroid under control now (TSH very low, T3 and T4 acceptable - thyroid lit up on PET, and I have all the symptoms of hyperthyroidism.) Tuesday, Wednesday and Thursday I'll be working my a$$ off to get business and household stuff in order.
Friday round #1 of FOLFIRI w/Avastin - chemo #13. I counted down on my calendar for my FOLFOX, rather than up. Now that I might be on chemo the rest of my life, I'm just counting up. But when I hit #24, I will hopefully get a break for a while, and we'll just monitor really closely. Maybe I'll even stay NED after that. Maybe FOLFIRI and/or Avastin is what I need to take out those last stubborn cells that hid out from the FOLFOX and grew after I stopped chemo.
Maybe it is a good thing that life has been a total whirlwind both times. I'm too busy making appointments, attending them, and trying to get work and home in order to dwell on much. The one thing that is easier this time is I have so much more knowledge. And thanks to so many of you here, I already know about the new drugs I'll be on, and treatments and options and situations that apply to stage IV. I don't feel so lost and ignorant, and don't have to spend so much time researching and learning. I know the basic ropes. And I've learned a lot about what to expect in the future.
I can't imagine starting out on battle #2 without the knowledge and support from all of you! Thank you all!
0
Comments
-
Kathryn
First things first - that photo is gorgeous - I am guessing it is your family minus 1 daughter. This family looks like it could face any adversity + knock it to smithereens.
I have a feeling you are going to do really well in "round 2". You have been through a lot, + knowledge is power. You will be at a distinct advantage this time around.
My hair mostly fell out with folfiri, + my daughter cut what was left really short. My hair is growing back + my kids say they like it short (previously they had only seen it long, or longish).
With regards to Mexico, you made the best decision you could with the information you had at the time. Knowing what I know now, I would go back + change a few things, too if I could. But I made the best decisions I could at the time. You did too.
Since I have been on this board I have really admired your strength, pursuit of information + tenacity. They will take you far in this next round. Good luck!0 -
So sorry to hear that!!AnneCan said:Kathryn
First things first - that photo is gorgeous - I am guessing it is your family minus 1 daughter. This family looks like it could face any adversity + knock it to smithereens.
I have a feeling you are going to do really well in "round 2". You have been through a lot, + knowledge is power. You will be at a distinct advantage this time around.
My hair mostly fell out with folfiri, + my daughter cut what was left really short. My hair is growing back + my kids say they like it short (previously they had only seen it long, or longish).
With regards to Mexico, you made the best decision you could with the information you had at the time. Knowing what I know now, I would go back + change a few things, too if I could. But I made the best decisions I could at the time. You did too.
Since I have been on this board I have really admired your strength, pursuit of information + tenacity. They will take you far in this next round. Good luck!
Don't I know about that whirlwind!! With three surgeries almost back to back....but you can do it! One foot in front of the other!! You are not alone through this journey/#2. We are here for you. Hugs and more hugs!!0 -
Short hairAnneCan said:Kathryn
First things first - that photo is gorgeous - I am guessing it is your family minus 1 daughter. This family looks like it could face any adversity + knock it to smithereens.
I have a feeling you are going to do really well in "round 2". You have been through a lot, + knowledge is power. You will be at a distinct advantage this time around.
My hair mostly fell out with folfiri, + my daughter cut what was left really short. My hair is growing back + my kids say they like it short (previously they had only seen it long, or longish).
With regards to Mexico, you made the best decision you could with the information you had at the time. Knowing what I know now, I would go back + change a few things, too if I could. But I made the best decisions I could at the time. You did too.
Since I have been on this board I have really admired your strength, pursuit of information + tenacity. They will take you far in this next round. Good luck!
I think you will look gorgeous with a super short cut! I used to wear long hair too but after the first short cut I'd never go back. Wash & go!Or in my case, wash, gel, & go.
I just want you to know I think you are a strong lady...but my heart still hurts for you and what I know has to be such a disappointment.I sit back & think..how will I react if or when this happens to me and I am not so sure I am strong enough.I'm just so glad I have you guys.
Now about the thyroid...it *can* get messy so be prepared, but hope for the best.It cannot be fixed in a day and it can make you feel like crap too! I just hate that you are going through thyroid disease along with taking chemo. I am happy to hear that your T3 & T4 are in normal range and I'm hoping that you just have an inflamed thyroid. That can cause suppressed TSH too.
Anyway...best wishes from me to you.
-Pat0 -
You have my good vibes!
....and memories with feeling exactly that way, with my second fight...sigh....
But, you are a VERY strong woman, and can and will beat this beast again!!!!!! How DARE it try to sneak back in!!!!!!!
As far as a break, how about a day doing your favorite thing? Just a day, no cancer? I know, I know...so much to do...but maybe ask yourself what can wait, or what can be done by someone else to help.
We are here for you, my dear!
Hugs, Kathi0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 396 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.3K Kidney Cancer
- 670 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 537 Sarcoma
- 730 Skin Cancer
- 652 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards