For several months I have had abdominal pain that my doctor thought might be related to scare tissue from surgery I had last year for uterine cancer. The pain worsened this last month and last week she orderd a CAT scan. She called me late Friday with the results which are not good. They suspect lymphoma (unrelated to my uterine cancer) and I have an appoinment with an oncologist on Monday. I also have a spot on my lungs which the radiologist wants to follow in 3 months with another CAT scan.
I never thought I would have to go through this again so soon. I know it will be healing but it is incredibly hard for me to even write about it. I feel devastated. I have told a few friends so far which has made me know that I am rich in love and support. I fear telling my family (mother mostly) as I fear she will burden me with her reaction and not be able to support me in whatever the upcoming process may be.
I really believe in the power of prayer and fear that I will not have the strength to face this with grace. I have been asking people to pray for me and/or keep me in their good thoughts. I really believe this helps!!!! If you are so inclined, please, I would be honored.
I am really grateful for the folks in the weekly journal (you know who you are:)) who have supported me so far in this journey. I will post here when I get more information from the oncologist. Fortunately, food has not been much of a problem. I feel very devoted to being present and "staying in my body" for as much of this as I possibly can. Thanks for "listening"
Denise aka activeadventurer
10-08-2005, 10:18 PM
I am so very sorry that you are having to go through this nightmare. I also understand your stuff about not wanting to tell your mom. Awhile back I was in a situation not unlike yours. I did not tell my mother because frankly I could not deal with all of her emotions that would come from the situation. It was sort of like I felt that I have enough pain of my own and I just couldn't deal with someone else's distress. I felt I needed all my emotional reserves for myself and although people think they are helping sometimes their help makes it worse. I told one girlfriend and that was it. I did the treatment and kept the whole thing a secret except for her. After the fact I mentioned it to others and they though my decision was weird but it was just what I had to do at the time. You will be very much in my prayers and please keep us updated as to your progress as much as you feel you can.
10-09-2005, 12:09 AM
I'm so sorry you're having to go through this! Especially after already beating cancer once. Please come back on and tell us what they tell you on Monday. Sending you a lot of :goodvibes :goodvibes
10-09-2005, 02:56 AM
10-09-2005, 06:32 AM
Denise, you are in my thoughts and prayers. I understand the mom thing.
10-09-2005, 09:20 AM
I'm so sorry to hear your bad news. It is Canadian Thanksgiving today and you will certainly be in my prayers You have survived Ca once and you can do it again.
10-09-2005, 09:24 AM
I didn't read carefully enough. Sorry. My sister had non-hodgkins lymphoma when she was 32. She had severe bloating, pain and vomitting. Took them over a year to figure it out. Having said that, it was 18 years ago and she has remained Ca free. :cb: This can be beaten!
10-09-2005, 09:41 AM
10-09-2005, 02:25 PM
Oh Denise honey, I'm so sorry. But you are strong woman, you've beaten this evil little disease before, you WILL beat it again! You are definitely in my thoughts and please keep us updated as you get news. :grouphug:
10-09-2005, 03:10 PM
Oh, Denise, I'm just so, so sorry to hear this news....wow, you poor sweetheart. :grouphug: I will definitely be praying for you. If you would like to talk in private, I'd be happy to just listen or to share my experience with Lymphoma -- although I'm hoping to heaven that you're just experiencing a false alarm. I will say that if it is bad news, there's been some amazing progress in treatment in recent years. If you'd like to reach out to an amazing group of people, this message board (http://forums.webmagic.com/ubbthreads/ubbthreads.php?Cat=&C=1) has been just such a godsend for me throughout my experience, and the folks there are well-accustomed to the yet-to-be-diagnosed stopping by with questions. There's both a Hodgkins side and a non-Hodgkins side.
I'm just so sorry you have to go through this terror. I'm here for you whatever you need. :grouphug:
10-09-2005, 04:34 PM
Denise, I'm really sorry. :grouphug: I'll be thinking of you tomorrow and sending lots of :goodvibes: your way.
10-09-2005, 05:26 PM
Denise, I'm praying for you!!!!
10-09-2005, 08:03 PM
I am so sorry, Denise... I hope this is just a false alarm. We'll be thinking of you tomorrow. Lean on us, and lean on your friends and family. They will help you through.
10-09-2005, 11:34 PM
I have been crying on and off this weekend and am in sort of a low grade depression. I started reading a book I already had of a dr's memoirs of treating lymphoma patients. (Anatomy of Hope) and it took me all weekend to get there, but I finally made it to the gym Sunday night.
I am going to ask a friend fo mine who is a retired RN to go with me to my appoinment tomorrow. A mutual friend of ours suggested this tonight and it sounds good. I am afraid to go alone in that I may be so dazed that I miss important information or won't ask any or the right ?s
Your thoughts and prayers mean a lot. DCM
10-10-2005, 02:37 AM
Oh Denise, what a blow to have something else to worry about...I'm so sorry. I'm glad you have someone to go to the appointment with you, both for emotional support and to be a second pair of ears. I'll be thinking of you tomorrow, sending good :goodvibes and hoping the visit will set your mind at ease. :grouphug:
10-10-2005, 05:31 AM
Denise ~ I'm definitely thinking of you!!! ((((HUGS)))))
MAJOR :goodvibes: coming your way!
10-10-2005, 08:58 AM
Great idea about taking your friend the RN....she'll also know what to ask if you don't.
My prayers are with you Denise....
10-10-2005, 09:15 AM
Denise, I'm really sorry to hear that you're going through such a rough situation. You're in my thoughts and prayers!
10-10-2005, 09:59 AM
Good luck with your appointment today. Hugs, prayers and Good vibes going out to you today.
10-10-2005, 10:41 AM
Denise I'm so sorry to hear this. You'll be in my thoughts and prayers.
10-10-2005, 11:53 AM
Hope everything goes well today, pet.
10-10-2005, 05:53 PM
Denise - still praying for you and thinking of you. Hope your appointment went well today.
10-10-2005, 07:52 PM
What a great idea to have your nurse friend come with you. Hope it went well today and you got some answers. You've been in my prayers - just have not been posting much lately. ((hugs))
10-10-2005, 09:18 PM
Mine too, Denise...let us know how it went, OK?
10-10-2005, 09:29 PM
Any news Denise?
10-11-2005, 08:14 AM
I don't have much time. I have to run off to another test this morning. I woke up this morning gripped with fear but had a pretty good partial evening last night. I went to the gym and beat up on the cardio machines. It really helped.
The lymph node they are most worried about is inflamed to the size of a golf ball (not a good sign) I have a PET scan this morning to see if there are other areas of " high metabolic activity" I am not sure if that signifies inflamation or cancer.
There was so much info yesterday that it is a little confusing. My basic blood tests were ok. Liver function results come back today, PET scan today to see where and if they can do a needle biopsy and if there are any other "hot spots".
My oncologist seemed like someone I would be very comfortable talking too. (I hang out with a very casual crowd. I haven't seen someone in a really good suit in years!!!;) ) He said it could be a mass, a solid tumor or lymphoma. Only more tests will tell. I am nervous about getting "lit up" this morning (as he described it) but it seemed like this would lead to really good information.
Keep me in your thoughts and prayers and please feel free to share any experiences of your own. DF and my immediate social circle have been TERRIFIC. I am just trying to stay on an even keal, which seems like quite a challenge right now. The posts mean a lot to me. I carry a list in my purse of every one who is thinking/praying of/for me and pull it out and look at it regularily. It helps. Hugs and love. Denise
10-11-2005, 08:16 AM
Praying for you still Denise!!
10-11-2005, 09:10 AM
I think you're doing remarkably well holding it all together during such a stressful time. I hope my name's near the top of that list! :) Hang in there, Denise and remember we're here for you whenever you need us! :grouphug:
10-11-2005, 09:11 AM
Oh Denise. I wish I knew exactly what to say right now to provide comfort. What a trying experience -- especially the waiting and the NOT knowing. Sending healing and hopeful vibes today!
10-11-2005, 09:28 AM
Denise, my thoughts and prayers are with you!
10-11-2005, 11:27 AM
Denise, the "lighting up" they refer to is caused by active "hot spots" of metabolic activity which are illuminated in the PET scan. What happens is that you get a shot of radioactive fluid and glucose, lie very still for about 30-40 minutes, and then the fluid gets taken up, along with the glucose, by the active cells in your body -- like, hopefully, your brain ( :) ) and perhaps your bladder (that one scared the crap out of me when I saw it lit up on the scan copy I got -- I was like, "What the **** is THAT???" :lol: ) and any cancerous cells, as they are very active also. The PET is very accurate for Lymphoma, but not always for other forms of cancer, as for some other forms of cancer it can show a false positive and scare the bejeezus out of you. In the case of Lymphoma, though, it's considered quite good -- if not perfect, as sometimes an inflammation or infection can cause it to light up, as those cells are active also. You will go through a doughnut-like tube and it will do a 360 scan from your head through your groin. In my case it was critical for staging my cancer, and it was in this way that we identified that the cancer was in my groin.
A needle "aspiration" biopsy is ok for non-Hodgkins, I think, but in my case I had Hodgkins, and the needle biopsy gives insufficient information. I bypassed the needle biopsy and right for an "excisional" biopsy, in which they remove an entire (in my case, two) node for testing. Sometimes they start with a needle biopsy, as it is not nearly so intrusive (I have a 2-inch scar on the side of my neck, whereas you will just have a dot wherever they do it.) Then if they get a positive, they'll go back for an excisional biopsy to get a whole node for more complete testing. Where is your enlarged node? They can do a removal from most areas of your body, including the lungs and groin - not just the neck.
I know you're scared -- it's all absolutely terrifying. I want to repeat that I'm here for you no matter what you need. That book you mentioned is excellent, by the way. If you do get a diagnosis of Lymphoma -- and I'm praying you don't -- I will have more recommendations for you, depending on what type they identify you have. Just take it a little at a time. The worst part, as you know from having dealt with this before, is the diagnosis and subsequent staging and identification of treatment. The actual treatment is a relief, by the time you get to that point. You're just ready to kick its ***, you know?? I REPEAT: there has been enormous progress in the efficacy of treatment. If I'd gotten my diagnosis even 15 years ago, I'd probably be dead by now instead of completely cancer-free, as my form was very aggressive.
Denise, I want you to PM me or talk to me here -- and if you want my number I'd be happy to share that as well. Just keep telling yourself that you're in the worst part right now.....it's the worst when you're dealing with uncertainty and fear and dread. Once you know what you're dealing with, the doc will know exactly what your options are and you'll begin to feel a little more in control. At least you'll know the plan of action -- key word ACTION. I'm so glad they're moving quickly.
Sending you love and big hugs. You're in loving hands, thoughts, and prayers. :grouphug:
10-11-2005, 12:08 PM
Just letting you know I'm thinking of you today.
10-11-2005, 12:54 PM
Denise, it occurred to me that I'd referred to the PET being important in my staging process, as it told us that the cancer had moved to my groin, and you might not know exactly what I mean by that. Hodgkins differs from non-Hodgkins in the method by which the cancer progresses in your body. In the case of Hodgkins, it almost always migrates south in your body, going from your neck to your groin -- so it's presence in my groin put me at Stage III, and then liver activity put me at a possible Stage IV, but ultimately they went with III. (Presence in the organs in the case of Hodgkins means you're Stage IV.) Conversely, the path of non-Hodgkins is less predictable - it could start in the groin and be an early stage.
Oh, and the PET will register any tumor larger than 2 cm. You can also ask to receive your own results; I always did. That way I got both my scans and the written report from the radiologist for my own records, and got my results much sooner that way than if I'd waited for my doc to share them with me. (They're the same results that went to her.) Just tell them at the scanning facility, and they'll prepare copies for you as well. You can usually get your results the following day, unless it's a Friday.
I'm anxious to hear your results. Whatever it is, Denise, you'll deal with it and move forward with support. You're not alone. :grouphug:
10-11-2005, 01:35 PM
My thoughts are with you Denise. Thanks for the testing 101 Sarah. I'm a nurse, but far removed from oncology. I'll check often for updates. I sure thought of you alot yesterday. :crossed:
10-11-2005, 01:41 PM
I agree Denise; you seem to be handling this remarkably well. Please take Sarah up on her offer; she is an amazing woman with so much insight and compassion, and someone who can understand precisely what you are going through right now. As always, you are in my thoughts, good luck today and please let us know as soon as you hear anything.
10-11-2005, 04:54 PM
I was wondering how your Monday went. Thanks for the update. Hang in there Denise, you're in my thoughts and prayers.
10-11-2005, 06:07 PM
Thanks for the update Denise. My thoughts and prayers are with you.
10-11-2005, 07:26 PM
Thanks to all of you for your support. I had my PET scan today. I will know the results tomorrow and be sure to post. Thanks for the reminder Sarah, that I am in the worst part now. I can only hope that this is the worst.
I am really working on the being brave part. DCM
10-11-2005, 08:47 PM
Denise, I PM'd you again. Let's talk tomorrow.
Listen, I want to say something: YOU DO NOT HAVE TO BE BRAVE. You simply do not. Being strong does not equal being brave. You're facing what is flat out the most terrifyingly fearsome thing anyone can face -- and anyone who says they're just brave in the face of this particular brand of **** is simply not being entirely truthful. People told me all the time that I was brave, but I knew better. I just did what I had to do, because I had no other option. And you will, too. You're strong, so you WILL get through this -- you're not going to curl up into a quivering ball of denial and wallow in self-pity. That's not who you are, Denise; it's not how you're wired. Be clear, though, that you will call on your inner stores of strength, and you will in all likelihood surprise yourself with your positive energy and fortitude. That does NOT mean that you have to be this big, bottomless pit of neverending bravery. You're not some fictional, mythical character. You're a human. You just do the best you can, while remaining true to your honest self. Give yourself permission to be afraid, ok? Fear doesn't preclude strength, nor does it preclude ASSKICKING! :s:
Much love....my heart is just breaking for you, my friend; I REPEAT: this REALLY IS the hardest part. (I asked Lorraine, and she said it was the hardest part for her, too.) Once you get to start fighting, you'll be all over this sh*t and you'll feel like you can reclaim just a little bit of control over your life!! :s: :yes:
10-11-2005, 11:09 PM
Oh, Sarah, have we mentioned lately how much we love you??
Denise, you're in our hearts. Whatever the outcome, you'll stand strong and you'll get 'er done. We're praying for you and we're pulling for you!
10-11-2005, 11:50 PM
Sorry I missed this but I will be praying for good results tomorrow. That has to be so scary to go though this. I'm sorry you have had to.
10-12-2005, 12:28 AM
I'm new, and I don't think we've spoken, yet. I've got a few scary tests coming up in the next two weeks, so I'm definitely feeling for you. It's pretty scary not knowing. I've kept you in my thoughts since I first read your post, and I will continue to do so. I'm hoping you get good results!
10-12-2005, 12:55 AM
Thanks, Your thoughts and prayers mean so much to me. I carry my list around of people who are thinking of and praying for me and it gives me real comfort. Coming here and reading all of your posts helps too. I am counting the hours until I get my PET results (wednesday mid to late afternoon CST) I will post and give Sarah a call after I get my results. Blessings and <<<hugs>>> to all of you. Denise
10-12-2005, 01:32 AM
Still praying Denise...
You've got all my love and positive thoughts coming right at you
10-12-2005, 05:12 AM
Denise, you are in my thoughts and prayers. I know this is a tough, tough, frightening time, but it sounds like there are lots of people around you supporting you, and rooting for you, and as you can see you have a lot of us right here, you can turn to whenever you want.
10-12-2005, 10:48 AM
I hope that everything works out for you. I am thinking of you today and am praying for you. Looking forward to many more of your posts.
Take care and God Bless you today and every day.
10-12-2005, 11:14 AM
I am :angel: praying :angel: that you get good results today. We are here for you every step of the way. I think your attitude is amazing.
10-12-2005, 01:04 PM
Oh, now, Pookie - good karma ROCKS!! It is truly a beautiful, beautiful thing - no matter what the decade! (Of course, I was raised in a commune, so I *would* say that! ;) )
Peace.....and power to the people! :smoking:
... o o O O (Man, I just slay myself.)
Denise, girl, I've got my cell phone on my desk and I'm anxiously awaiting your call. :grouphug:
10-12-2005, 03:34 PM
:goodvibes: to you, Denise. You know I'm rooting for you.
10-12-2005, 03:43 PM
Fat fish to flat fish! :lol3: That's so funny!
10-12-2005, 03:44 PM
I just caught that, too -- very funny, DishyFishy!
10-12-2005, 07:24 PM
I would have posted sooner but got caught up talking to DF on the phone.
All that good karma does rock!!!!! I got the best possible news today!!!! The very best possible news. The golf ball size lymph node on my liver showed "low metabolic activity" which is "consistent with a benign process" YahOOOOOOOOO. All those good vibes and what a result!!!!!!! This means it is not lymphoma.
They did find two very small nodules on my lungs which have to be watched. I still see the oncologist and may still have to have a biopsy to see what is happening. But the PET scan could not have been better!!! I feel a little wrung out but grateful and really blesssed.
I am blowing town for a few days starting tomorrow afternoon (a prearranged women's hiking weekend on the shores of Lake Superior, 15 of us from ages 18-70) Don't think I am an ungrateful slob for not posting for a few days. I am celebrating out in nature.
I will let you know what happens when I go back to the oncologist next week but this is a totally great outcome. Couldn't be better. Thanks for your love and support.
10-12-2005, 07:34 PM
I'm so glad you got good news! Have a good time on your hike!
10-12-2005, 07:36 PM
Great news Denise, have a wonderfull weekend.
10-12-2005, 07:53 PM
That is good news. I'm so happy for you.
10-12-2005, 08:05 PM
:cp: That's fantastic news, Denise!! What a relief. Now you can enjoy that healthy hiking trip with a clear mind. :flow2: So pleased for you!! :high:
10-12-2005, 08:25 PM
Denise ~ I'm so glad for you that you got good news. Enjoy your hiking weekend.
10-12-2005, 08:33 PM
That's wonderful news Denise! Go celebrate in nature with our blessings!
10-12-2005, 09:05 PM
That's such wonderful news! Have a great time hiking.
10-12-2005, 09:15 PM
Wonderful news Denise :cheer:
I'm so happy to hear it :)
Have a great time hiking!
10-12-2005, 09:42 PM
Denise girl, it was just sooooooooooo good talking to you earlier -- I am so crazy about you!!!! Seriously, you're just SUCH a pleasure, and I predict we will be lasting friends. (I've already told Lorraine how totally totally, sparkingly, wonderful I find you.) I'm sorry we lost signal when I was driving home, and I'm really sorry I caught you less than a minute after entering your home -- and with your shoes on, no less! (That's what I get for stalking you at 5:40!)
I told you then, and I'll repeat now: I am just THROUGH THE ROOF excited!!!!! I threw out there the possible Sarcoid (Sarcoidosis) cause of the enlarded node(s) - I know that was what we were hoping I had prior to my diagnosis. (Ie., "Man, I don't want anything, but if it isn't cancer, I'd prefer it were Sarcoid!" <---enter unpleasant alternative here.) :lol:
I repeat: You SO ROCK for arranging this getaway!!! I also want to say that it was so wonderful talking to you -- sorry I called you so early. I just like you so much, and I wanted to be there if you needed support upon hearing the worst. Man, what a relief!!!
I really look forward to talking to during a long, laaaazzzzzzzzzzy conversation when you get back from the soul-rebuilding hike that you've so wisely planned for your thirsty body and soul. You. Go. On. With. Your. Wise. Self.
Man, you so rock, Denise. This little icon does not even begin to do our hug justice! :grouphug:
Loving you, loving you, loving you......... Talk to you laytah, babe! :goodvibes
10-13-2005, 08:26 AM
Denise, what wonderful news! Enjoy you weekend with nature!
10-13-2005, 09:01 AM
Oh Denise, you poor thing what a horrible thing to have to go throught. I've been away for a couple of days and when I just started reading this tread I was a little fearful for you. But you've posted such great news that now I feel such great relief and happiness for you. Please keep us posted on your hiking adventure. I'm sure you'll have a great time, especially with such good news to bring with you. Still keeping you close in my thoughts.
10-13-2005, 10:33 AM
Denise I'm so happy for you that is great news. Enjoy your hike this weekend.
10-13-2005, 11:05 AM
What a fantastic result, Denise! I'm so pleased for you. :grouphug:
Have a super time this weekend. There's nothing like a good autumn hike to keep those spirits high.
10-13-2005, 11:27 AM
Awesome! I'm so happy for you!!!! Take care of yourself, girlie! :high:
10-13-2005, 01:30 PM
YAYYYYYY DENISE!!!!! :cb:
10-13-2005, 01:42 PM
What wonderful news!!! That is so awesome. Enjoy your weekend and see you when you get back!
10-13-2005, 01:59 PM
That is such wonderful news to hear. I hope you are clinbing and walking and hiking and lovin' it all right now!
10-13-2005, 02:03 PM
Oh thank goodness, what a relief! I know you're not completely out of the woods yet, but at least now you'll be able to enjoy your weekend getaway in peace. I hope you have a wonderful time, please come back and tell us all about it!
10-13-2005, 03:10 PM
Denise, that's wonderful news! I'm smiling from ear to ear, so happy for you. :D
10-14-2005, 03:31 AM
Oh!!! I am just so HAPPY for you!!! (((HUGS))))
10-14-2005, 10:22 PM
OOOHHH I'm so happy for you. I haven't been online for a few days but this was the first thread I checked. What awesome news and what a great way to celebrate, recover and decompress. :dance: :bubbles:
butter ball no more
10-17-2005, 08:52 PM
:goodvibes I think that is a great idear to take her along ,write down what you need to find out and dont walk out the door till you have all your questions answered,you know that you have my love and support and that you are in my prayers :love: :grouphug:
and some sun shine just for you :flow2: :flow2: :flow1: :flow1: :flow2: :flow2:
10-17-2005, 08:55 PM
You are all so sweet!!! And thanks for the great vibes and dancing bananas. And Sarah thanks so much for your phone call. We shall talk again soon. I have to type fast as the libary is closing in five minutes.My computer blew up Wednesday (still on warranty but 3 weeks until I get it back) Keep those prayers and thought coming. I go for my biopsy tomorrow. DF is taking me. I am scared but SOOOO much better than last week.
My trip was like a Steve Martin or Chevy Chase movie. First twenty four hours.. I went to the emergency room with an allergic reaction, had a flat tire in the middle of nowhere and slept in my car. After that I just came home and recovered from my allergic reaction. The weather was great :)
I will be thinking of you all tomorrow.
10-17-2005, 09:07 PM
Denise, I'll be thinknig of you, too tomorrow :)
Glad you got home from your **** trip in one piece...;)
Guess you'll be spending a good amount of time at the library for the next three weeks, huh?
10-17-2005, 10:28 PM
Congratulations Denise! What a nice way to celebrate.
10-18-2005, 08:30 AM
Denise, sorry about your trip, not something you needed after your week from ****! Here is to better days! :D
10-18-2005, 10:08 AM
The weather was great :)
Denise, you're hilarious! Well, alrighty then! :lol:
I'm sending positive vibes your way - it's still the needle aspiration biopsy, right? I'm glad your friend is taking you....don't forget you don't have to be brave, and you can't help but be strong. :grouphug:
We're all here for you, babe... :goodvibes
10-19-2005, 07:29 PM
Well the needle biopsy was scratched because the radioligist thought it was too deep and near my liver and there were too many potential complications. I go see the oncologist on Thursday and will probably just hang out and do another CAT scan in 1-2 months to see if there are any changes. Still a little wait to know definitively but all in all about as good as it can get considering the initial diagnosis. Your prayers and thought at work!!!
An upside to all of this is that I thought if I only had a few more months to live what would I do. It was short list
Get a DVD player that works all the time and not just once in a while
Spend more time with DF
Volunteer more time at RFS (they have since offered me a temporary part time job)
Thanks again to all of you for your support. It made this little journey a lot more managable :) :) :)
10-20-2005, 10:09 AM
sounds like good news. Thanks for keeping us posted.
10-20-2005, 01:59 PM
Get a DVD player that works all the time and not just once in a while
This is just too funny - you crack me up!
Thanks for the update, glad to hear that things are looking better.
10-21-2005, 10:21 PM
:) Thanks for the update. Absolutely a DVD player is a great idea (along with a good movie) :smug: