New, recently diagnosed and a million questions

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bluewillow
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New, recently diagnosed and a million questions

Postby bluewillow » Thu Aug 04, 2011 1:33 pm

Hi, my name is Susan and this is my first post. I have recently been diagnosed with cancer and have heard it called several different things, none of which I can remember right now. Everything ia happening way too fast and I am completely overwhelmed. Cancer was never much of a concern to me. I come from a huge family on my dad's side.....I am one of 50 first cousins, all still living and in good general health with the exception of one killed in a car accident and one that died in infancy. The only ones in my family that have ever had any kind of cancer, that I am aware of, have been men...my dad was treated for prostate cancer that was caught very early, so no long term issues. One of my 7 uncles had a brain tumor that was attributed to alcohol related issues. The other is a male cousin who was diagnosed with colon cancer. On my mother's side, there is no cancer at all that I am aware of. I don't smoke, rarely drink, have been conscientious about what I eat, work out regularly and have stayed fit and active and in good general health, so I was completely blindsided by a cancer diagnosis.

I had a colonoscopy in mid June and was told at that time that the surgeon suspected cancer, but wanted to wait on the results of the biopsy. He removed a couple of smaller polyps at that time, but the main growth was substantial. Following that, I went out to Colorado to visit with family. During the time I was gone, the doctor's office contacted me and said that some of my labs were abnormal and wanted to schedule me for a CT scan, which I had as soon as I returned. I didn't actually see the doctor to go over results until early last week. He told me at that time that it appeared to also be in my liver. He made a referral to an oncologist and I was scheduled for a PET scan. When I met with the oncologist, she told me that there appeared to be 3 nodules in my lungs which were "concerning" for cancer, but too small to biopsy. I am scheduled for a liver biopsy on Monday and am due to start chemo a week from Tuesday. My head is spinning and I am just not doing well with this at all. I've never been so scared in my life and I just can't even process it. I can hardly bear to be around anybody and very few people are aware of my diagnosis...my sister, my daughter and 2 of my closest friends. I don't want to leave the house most of the time. I'm not a real social person anyway, but right now all I want to do is crawl in a hole. I can't stand to look at myself in the mirror if I gain a few pounds; I can't even wrap my head around having to go through life with no hair....it's always been one of my best features...or having permanent artificial devices attached to my body....that just freaks me out.

I guess I am unloading this here because there is so much I just don't want to burden my family with. This is going to be hard enough on them as it is. And I am definitely not in a place where I want to talk to strangers face to face. If I don't think I'll be able to stand to look at myself, how can I ever feel comfortable under the circumstances with anyone else? It feels like everything in life that was important to me or that I hoped for has just been shattered. I hope I will eventually get to a place where I can better process some of these issues, but right now I just can't. I will eventually want more information I'm sure, but right now I can only take small doses. I would appreciate knowing how others have coped with similar situations though and am open to suggestions.

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Ashlee H.
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Re: New, recently diagnosed and a million questions

Postby Ashlee H. » Thu Aug 04, 2011 1:53 pm

Susan, we've recently had a few more newbies join and I hope you have read the replies to their posts - all great information so I won't repeat it all here. You are in shock. We have been where you are now and came through it. You will learn patience because this process moves slowly. You will try to hang onto your normal life, but will eventually find a new normal. There are so many like you that have lead healthy lives and don't have family history with colon cancer. Life is unfair, and we just drew the short straw regarding this. Upon learning I was Stage IV I thought I was doomed. I just passed my two year anniversary from DX, and as of last week, cancer isn't showing up on any of my tests. Doesn't mean I'm cured at this point, but I can get on with my life. Most of us don't lose our hair with the chemo for colon cancer. Your hair may thin, so you might want to get a shorter cut and use a heavy duty conditioner (chemo will dry your hair out). You will learn that you put more importance on your appearance than those around you. There are always wigs and scarves. I think a lot of us females have purchased a wig "just in case", and find we never wear it. Keep us informed or your journey.
-Ashlee
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

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florencedollar
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Re: New, recently diagnosed and a million questions

Postby florencedollar » Thu Aug 04, 2011 2:31 pm

Susan, your story could almost be my sisters story as well. We have over 50 cousins on one side, 15 aunts and uncles, and only one aunt was diagnosed with breast cancer, many years ago. She is a survivor. My sister was 46 upon diagnosis, nearly a year ago with stage IV with mets to her liver.

Following some chemo, and a colon resection/liver resection, she is continuing with a more tolerable chemo treatment, and today she shows no evidence of cancer.

It was a whirlwind for us. We were so thankful to find this forum. We were told that this is a marathon, not a sprint. breathe....

I am so sorry that you need to be here... the club that nobody wants to join.

Feel free to unload anytime. People here really do care and try to answer your questions.

Sis
Sis to 'lil sis (pict in avatar)
DX'd stage IV CC w/liver mets -age 45- 8/26/2010
Port Folfox started-9/8/2010
Colonic stent-9/30/2010
10/13-Team agrees-postpone chemo after 2 rounds
10/26 colon/liver resection
12/14/2010-Folfiri/Avastin
NED NED NED!!!!!

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pmterra
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Re: New, recently diagnosed and a million questions

Postby pmterra » Thu Aug 04, 2011 3:06 pm

Hi Susan,
I am sorry about your recent diagnosis but I am so happy that you found this site so quickly. It really is a Godsend! So many people who know exactly how you feel, so many knowledgeable and caring people who will help you because once you go thru this awful diagnosis you want to help others who are now feeling all the despair that you remember feeling. I know you don't want people to know right now and you want to crawl into bed with the covers over your head. Let yourself feel that for a little while.

However, from a caregiver's side, you will need as many family members and friends that you have to help you (when the time is right for you). And it sounds like you have a big family! Some of them won't know what to say or do but they will be there to listen and pray for you. My husband and I felt all those thoughts and prayers from friends and family like a giant hug and it really helped us face what we had to. There is no perfect or right way to deal with any of this. Let yourself feel the things you feel and then move on. Try hard not to dwell on the negative. Everyone is different in the way they respond to treatment. When you are ready, get as much information as you can (without going on the internet) and make wise decisions that are right for you. Surround yourself with positive and peaceful thoughts. None of it's easy but you will get through and come out stronger from the experience as hard as that is to believe right now. Peaceful & loving thoughts are being sent your way.
caregiver to survivor husband
Stage 3C - Colon
surgery June, 2008
6 mo. chemo/FOLFOX & Avastin
June 2015 - 7 year survivor :)

NWgirl
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Re: New, recently diagnosed and a million questions

Postby NWgirl » Thu Aug 04, 2011 3:09 pm

Sadly most of the folks you'll meet here have lived relatively healthy lives, eat well, exercise regularly and are otherwise in good health except for, well - cancer. :?

I think your feelings are completely normal right now. When I first learned that my cancer was not "caught just in time" but was extensive in my lymph nodes, I went into a pretty nasty depression. I allowed myself to have those feelings but also said I wouldn't stay in that state of mind forever, and I haven't. Depression and anxiety go along with cancer, so in time it helps to look for ways to deal with those side effects. Drugs are one option, but also things like exercise, talking to friends, talking to a professional counselor, talking to clergy, staying active in whatever activities bring you joy, etc. I didn't share my diagnosis immediately with everyone I knew, but word does tend to get out whether you want it to or not, so eventually, people usually figure it out anyway. My friends and family are a huge part of my being able to deal with cancer. Without their unconditional love and support I don't know what I would do. They could care less whether I have hair, "chemo eyes" as I call them, a poop bag, whatever. They accept me for who I am and if that means "me" with cancer and all its side effects, so be it.

Be patient with yourself. Your life has just been completely turned upside down. Like you, I could only process small amounts of information at a time. There are still some things that I completely avoid - like statistics.

You have found a wonderful support group here of people who are experiencing or have experienced exactly what you're going through now. We "get it" as only another cancer patient can. Welcome to the group and feel free to ask whatever questions you want - whenever you're ready.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

HildaC
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Re: New, recently diagnosed and a million questions

Postby HildaC » Thu Aug 04, 2011 3:31 pm

Susan, having read your post I remembered the day I was diagnosed at the end of October last year. I went in for a colonoscopy after my GI doctor reassured me that it was 'absolutely nothing, just hemorroids'; when I came out of anethesia he told me I had rectal cancer (I remember this exact words: "Don't worry, you'll have surgery, they'll give you a bag and you'll be just fine". I said: "What are you talking about? What bag?")

I clearly remember the feeling that my world was shattering in front of my very eyes, sort of in slow motion (I guess I was still under Prophopol a bit :shock: ). My husband drove me to that colonoscopy appointment, with our toddler in tow - now he tells me he doesn't even remember how we got home. We were both in such shock. Later that night I poured myself some wine and went online. I googled 'rectal cancer', and started reading about staging, metastasis, survival rates.. I was reading and bawling my eyes out. It was so unfair (especially given the fact that, like you, I had been a healthy person my entire life), and scary, and overwhelming.. and just.plain.awful!!

Then I found this forum,posted a message sharing how terrified I was, almost immediately received encouraging replies - and felt somewhat better. This forum is a wonderful source of information and support and I'm very grateful to its participants for helping others out.

It's been nine months since the day of my diagnosis. I've been through radiation and chemo, then more chemo, and I'm headed for surgery next week.If there is one advice I can give you, it would be 'try to take it one day at a time'. Not everyone gets the same side effects (as far as hair loss goes,my hair thinned out but not to the point where I needed a wig!); As for the 'artificial devices attached to your body', I'm still struggling with this one but I've learned to regard 'the bag' as the necessary evil. However, depending on the location of your tumor,there is a high chance you won't even need a bag or it will be temporary.

I totally understand how you feel right now, and my heart goes out to you. Please hang in there.

Hilda

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Bev G
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Re: New, recently diagnosed and a million questions

Postby Bev G » Thu Aug 04, 2011 3:35 pm

HI Susan:

I'm sorry you had to find your way to our board, but am so glad you got here, because we will be happy to help you as much as we can each step of the way. Of course you are overwhelmed right now. You'd be nuts not to be. I spent the first three months after my diagnosis in a fog, kept waiting to wake up because I was positive it was all a very surreal nightmare. Well, obviously I never woke up to find out it was all a big mistake.

Anything you feel right now is surely normal,but please avoid getting ahead of yourself. Don't give up before you get started or it will be very hard to re-capture the energy you're going to need to deal with this. I DO NOT want to discourage you, but this is one thing I wish I'd known. The first year after your diagnosis will likely be like the biggest pile of sh*t you can imagine. You will have to cope with lots of stuff...the rest of your diagnostic tests, plans, likely changes of plans, chemo, possibly (if you're lucky) surgery, lots of fatigue, many tears, etc. ect.

The good news is, in about a year, you will look back on this time, finding that you are, in fact, a much, much stronger woman than you ever knew you were. You will be encouraging and advising new folks here on the board. You will be looking forward at the plan that will hopefully keep your cancer in check for a long, long time. Once you've been off chemo for a few months, you will remember that it sucked, but you won't remember exactly how much and in what way (I promise). You will be told, and told again, that this is a MARATHON, not a sprint. You would be helped by working on ways you can take this one day at a time, and not looking too far in the future. There will be light at the end of the tunnel, which is not a train, but if you focus on every single thing you will have to get through in the next 10-12 months, you will find it overwhelming.

Try to stay away from Googling stats. You won't like what you see. It is terrifying, and your individual course and likely outcome will be YOURS, not everyone else's with stage III and IV disease. if you feel compelled to ask your oncologist what your prognosis is, make sure you really want to know. Until you have gotten some treatment under your belt, he/she will not be able to accurately assess how things are likely to go for you, and you will likely just hear the group statistics, which will not encourage you. As you read through posts on this board, make sure to read everyone's info under their signatures. This will give you a quick and good idea of where we all have been and how we're doing now. In general, I think this will be encouraging to you.

Could you let us know your age, approximately where you live and if you are getting care at a major (NCI) cancer center. We'll be able to help you more having this info.

In the meantime, try to find something to laugh about each day, build up your strength as much as you can (nutritionally and exercise wise) so you will be very strong when you start chemo. Ask us anything you want (we're not docs...at least most of us) but our group experience with cancer has got to be close to 1,000 years (maybe many more) and we'll help you all we can. I'm sure most of us know just how you're feeling right now. I promise you that as you gain information and begin to feel more in control you will feel better. In the meantime, remember to B-R-E-A-T-H-E.

Sending you virtual hugs,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

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juliej
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Re: New, recently diagnosed and a million questions

Postby juliej » Thu Aug 04, 2011 3:37 pm

Bluewillow, I know exactly how you feel. I have 18 aunties and uncles and a huge number of cousins. There is no history of any type of cancer anywhere in my family. I've always been the "health nut" among my friends. I exercised, ate a largely vegetarian diet, and still came down with cancer. It's harder for colon cancer patients because so many people assume it must relate to our lifestyle. Those "how to prevent colon cancer" seminars seem to make matters worse (although they are very helpful for those who DO need to change their eating/exercise habits).

Hearing someone say you have cancer is one of the hardest things in life to go through. Having a total meltdown is completely understandable. But try to take it one step at a time. Ports (the artificial device you mentioned) sound worse than they are. You may not lose your hair, depending on which treatment you're on. You don't have to process it all right now. Just concentrate on starting treatment. We can give you tips, advice, and support here, but you need to find your own inner strength as well. I was blindsided too. This is tough -- no two ways about it. But there are many people on this forum in treatment and participating in/enjoying life.

Let me know how it goes with your liver biopsy. And feel free to ask a million questions -- we're here for you!

Big hugs to you,
Julie
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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betsydoglover
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Re: New, recently diagnosed and a million questions

Postby betsydoglover » Thu Aug 04, 2011 3:43 pm

Hi Susan -

Bev and others have given great advice. Diagnosis is a shock and we all remember the overwhelming things you are feeling.

Please do not worry about your hair! Your first protocol will likely be 5FU/oxaliplatin//Avastin or Xeloda/oxaliplatin/Avastin. Neither of them cause hair loss in most patients - perhaps some minor thinning, but nothing even your hairdresser would notice! There are other crc regimens that can cause hair loss, but they aren't normally the first round treatment. So, please try not to worry about your hair and concentrate on getting well.

Good luck and Welcome!
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

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bluewillow
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Re: New, recently diagnosed and a million questions

Postby bluewillow » Thu Aug 04, 2011 4:03 pm

HildaC wrote: "...when I came out of anethesia he told me I had rectal cancer (I remember this exact words: "Don't worry, you'll have surgery, they'll give you a bag and you'll be just fine". Hilda


This is similar to my experience and I totally freaked. When I finally met with the surgeon later following the CT scan, he said that the "good news" was that I didn't have to have a colostomy, but the bad news was that it was because it had already spread, so there was less urgency for containment. I do have to admit I am extremely grateful to bypass that, but I'm still freaking out on the alternatives.

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bluewillow
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Re: New, recently diagnosed and a million questions

Postby bluewillow » Thu Aug 04, 2011 4:41 pm

Bev G wrote: Once you've been off chemo for a few months....Try to stay away from Googling stats.... Could you let us know your age, approximately where you live and if you are getting care at a major (NCI) cancer center. We'll be able to help you more having this info.

In the meantime, try to find something to laugh about each day, build up your strength as much as you can (nutritionally and exercise wise) so you will be very strong when you start chemo. Bev


I've always kinda approached things with the attitude that I can handle anything for a few weeks, but the oncologist is talking like I will be on chemo indefinitely....with possible short breaks if things are going well. I wasn't ready to hear that. The idea of being injected with a toxic cocktail on a regular basis indefinitely is just too much to think about. I've got no problem staying away from the stats...I've always been more of an exception rather than then rule kinda girl and I know how negative information can impact the psyche and the emotions. Would rather not go there. Right now I have to go to Rogers, AR for treatment. It is about an hour's drive each way. Normally not a problem, but stressed out, feeling like crap and broke (cost of gas), plus not having someone available on a regular basis that can go with me when needed, it could potentially be a significant problem over time. The liver biopsy is scheduled semi locally. That is on Monday. On Tuesday I have to go to the surgery center in Rogers to have a port put in. I really only have two close friends here....and one lives an hour away in the opposite direction. The other would have to take off work to accompany me and I'm not going to ask her to do that. I am scheduled to start chemo a week from Tuesday. My sister is coming down from Kentucky to be with me for a few days for that. Meanwhile, she is researching treatment options in Louisville where I would be closer to family. Of course, that would involve a major move, but I really have nothing holding me here any more. She tells me that there are a lot of great resourcews in the Louisville metro area.

I am good at finding things to laugh about. I've always had a kinda twisted sense of humor, but working in the field that I have, it was necessary to my sanity to try and find the humor in otherwise what were often tragic situations. And I have 2 cats who are extraordinary comedians. They keep me laughing, too. I'm having a bit harder time keeping up the dietary and fitness regiments that have been so much a part of my life. The oncologist told me that if I wasn't as healthy and in as good a shape as I am, treatment might not have even been an option. Somehow I am finding it hard to be encouraged by knowing that the payoff for all my hard work and effort over so many years is being strong enough to withstand chemo.

I really appreciate all the input and encouragement. Thank you so much.

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bluewillow
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Re: New, recently diagnosed and a million questions

Postby bluewillow » Thu Aug 04, 2011 4:56 pm

juliej wrote: Ports (the artificial device you mentioned) sound worse than they are. You may not lose your hair, depending on which treatment you're on. Julie


Yes, I was referring to the port. The thought of having something foreign in/on my body makes me cringe, not to mention the vanity aspect. I enjoy wearing strapless or spaghetti strap tops and feel like it would be like wearing a sign. I'm also concerned because I know I need to continue my regular working out to maintain my strength. The pump thing is upsetting, too. I know how I am and will likely refuse to leave the house with such a contraption in tow. I don't know what treatment I will be on. Seems they should have given me that information. The doctor said there would be 3 types of drugs or combination of chemicals administered. I think my eyes had already glazed over by then. Seems like it might be important to know.

I guess I just don't get why we can put a man on the freaking moon, we can find effective controls for diseases that are attached to a social or political agenda, we can communicate with someone on the other side of the world in a matter of seconds with a device small enough to fit in a pocket, but no one has come up with a means of attacking this evil disease in a manner that is at least dignified and with a minimum of torture.....let along a cure. Yes, I am angry, but not only because of my diagnosis. Cancer has always made me angry, because after so many years and with so much available knowledge, I just can't understand why better solutions are not available.

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bluewillow
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Re: New, recently diagnosed and a million questions

Postby bluewillow » Thu Aug 04, 2011 5:02 pm

betsydoglover wrote: Please do not worry about your hair! Your first protocol will likely be 5FU/oxaliplatin//Avastin or Xeloda/oxaliplatin/Avastin. Neither of them cause hair loss in most patients - perhaps some minor thinning, but nothing even your hairdresser would notice! There are other crc regimens that can cause hair loss, but they aren't normally the first round treatment. So, please try not to worry about your hair and concentrate on getting well.


As I stated in another response, I don't know what is being used. Seems like she would have told me. As silly as it may sound in the overall scheme of things, one of my biggest fears is not being able to stand to look at myself.

beth568
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Location: Boston area, MA

Re: New, recently diagnosed and a million questions

Postby beth568 » Thu Aug 04, 2011 5:28 pm

I don't think I can add much to the wise and comforting words that have already been offered here, but I will chime in as another voice to say that everything you're feeling is completely understandable, and that your sense of panic and worry will diminish a bit with time, as you become used to the reality of your diagnosis. The first couple of weeks after I found out I had cancer are still sort of a blur to me. I hadn't told many people, I had no idea what to expect, and I was sure I was about to die. After I lived with the situation for a little while, got to know my doctors, and took comfort in their experience and the fact that they had a plan for me, it started to get easier.

It's still not easy - not most of the time - but there are so many encouraging stories here that I have a great deal of hope for my future (and for yours). I hope you'll be able to get to that place after you've had some time to process what's happening to you. Hugs.
Beth
dx @age 42, Jan '11 RC, T2or3NxM0 (stage IIIA/IIIB)
6 wks chemorad Feb - Mar '11
LAR 5/23/11, staged T2N1bM0 (2 of 15 nodes positive)
8 rounds FOLFOX, June-Oct. 2011
clear scans Nov '11, May '12, Nov '12, May '13
http://www.mysemicolon.net

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StarGirl
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Re: New, recently diagnosed and a million questions

Postby StarGirl » Thu Aug 04, 2011 5:49 pm

The initial diagnosis is scary. It didn't hit me that I had cancer till I was in the chemo chair. I have had 6 rounds of 5FU and Oxi and Leukovoran (sorry about the spelling...). Meet with surgeon next week and I feel overwhelmed as you do. Feel like my life is being run by the doctors and the tests and the scans. I am trying to find the "humor in the tumor". I bought a wig to cover my "thinning" but have not worn it--I may need it after surgery and continued chemo. Hats are great--I find that each hat brings on a different "persona". If you can join a local support group then that would be great--it really helps to make friends who live close by who can help you with errands, etc. and just fun get togethers when you feel up to it. This board has been a great support--availabe 24/7 and we are all going through this journey together. I pray that God gives you peace and strength to get through this bend in the road.
DX 03/31/2011
Stage IV Rectal Cancer with mets to liver
6 rounds of 5FU, Oxaliplatin
3 rounds of Avastin
PET scan 07/15/2011 shows liver mass inactive


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