[Amanda Panda]

Sarah sweetheart,

I've not been around for a while, so I am really shocked and saddened to read this post and find out you have cancer.

My prayers are with you and Lorraine - you can and will beat this! I pray that God will renew your strength as you prepare for treatment and he will bless and comfort you both!

Love Amanda x

[Sandi]

Everyone here has expressed the overall felling of the board so well. Not much more to say that hasn't been said already.

Thinking about you daily!!!

[lessofsarahtolove]

Originally Posted by Tammy32

Nudge, Nudge.... Have a good day today Sarah.

Alright, alright....you talked me into it! You'll be sorry, though!

I'm sick now, so I will try to be concise with the huge pile of stuff I have to report, because really should be resting. (My immune system is understandably lousy now, apparently, so I think like 15 minutes after being told that by my doctor yesterday, I picked up a head cold when going to pick up my x-ray and CT scan slides from the hospital where I had them taken. Sheesh!)

So my doc is switched to a woman out of Greater Baltimore Medical Center (voted I think #3 of the best hospitals in America in 2001 by Consumer Reports -- I still wish it were Johns Hopkins, but she came highly recommended.) I'm going to meet her next Wednesday, and on that day she'll either tell me my course of treatment (probably at least 6 months of chemo, followed by radiation) or schedule a biopsy or two to further establish staging (how far along it is.)

Tomorrow I get two tests: (1) a PET scan -- they inject radioactive fluid in you and then film you for up to 2 hours, and it will show all the places in my body the cancerous lymph nodes are present. [Edited to change word from pleasant - which it's NOT - to present - which makes a lot more sense!] (Kind of cool, eh? And not cheap, at $5,000 -- thank God my insurance covers it.) And (2) another CT scan, to see my abdomen and pelvis -- helps with staging also.

Then on Thursday I get the stitches in my neck out -- the scar will be on the left side of my neck, right where the neck meets the shoulder, and is about an inch and a half long. Whatever.

I've already found the place where I'll get a wig; apparently they're very nice there and it's really professional and private and they'll even trim it on you, etc. For real hair, they can go up to like 800-900, but since Lymphoma patients have to have chemo for so much longer than other cancer fighters, the real hair is recommended because it lasts longer than the synthetic hair -- not to mention it's supposed to look better too. I'm going to get one that has the clear scalp base thing, so my own scalp shows through -- it's supposed to look more natural. My insurance will cover $350 of the cost. I'm going to cut my hair really short right before I start, so I don't have to go through the trauma of seeing big clumps of hair on my pillow. Then at the first sign of it coming out, I'm going to just shave the whole thing -- I couldn't bear to have little tufts, you know? I intend to have the wig ready for when that happens, so I'm all set up.

I'm in contact with the Lymphoma Research Foundation's buddy program, and once I have my course of treatment mapped out (the chemo-cocktail, number of 28-day courses, etc.) I will call up the nice woman there and tell her what it is, so she can match me up with someone who's been through it or something similar, and then we'll correspond or phone one another. They match the buddy to your needs, and I said I wanted a woman who's been through what I'm about to, so she can help me along the way. I'm sure at the end of it, I'll want to return the favor to the woman behind me.

My boss is in denial about my leaving work. She just doesn't believe it can be 6 months of chemo, but that's very common with Hodgkins. It's not like breast cancer....it's much, much longer. I'm getting ready for a fight to last 6 months to a year. And most of the people I've read about online who had Lymphoma and spoke of their chemo experiences said that they couldn't work while doing it, unlike some of their breast cancer-surviving friends. I guess it's just a lot heavier. It's definitely longer, and they say that the longer you do it, the more debilitatingly tired you get. Makes sense.

I'm going to get a "port" in my arm before my first chemo session. It's a long arm catheter that allows them to inject the chemo medicines and remove blood without continually sticking you. It leaves a nice scar, so I'm going to have it inserted on my arm, rather than my chest. It can stay in there for a long time, and apparently saves you a lot of pain.

Lorraine is dealing with it differently than I. She acknowledges that she comes from a dysfunctional family that never talks about anything -- "If we don't talk about it, it's not really happening." So her comfort zone is, let's just have a nice time till the doctor tells us what's going to happen, and then we'll deal with it then. I, conversely, feel like I need to know what to expect, so I can prepare myself. Knowledge is power, and I need to try as best I can to build up my stores of preparedness. I know reading about it is not the same as living it, but I don't want to be freaking out when I get little bubbles on my hands and sores in my mouth and have to ask Lorraine to give me shots in my hip -- when all of those things I'm now know are part of this process. She understands my way of dealing with it, and I understand hers, and we're both compromising a little while each getting what we need. So, for instance, I'm not doing any research when we can spend time together, and I'm not bombarding her with the information I'm getting (like she doesn't know yet about that port, which will totally skeeve her.) And she's casually asking to see the books I now have on chemo, nutrition while on chemo, and lymphoma -- and she's quietly checking them out a little bit. She went with me to the doc's yesterday and was a champ. I had a small scuffle with one of the nurses because she didn't want Lorraine to come in because she's not "family," but I insisted, and I wouldn't go in without her, and then my doc heard about it and told her Lorraine should be treated like my spouse and we were all good again. It made me sick, and served as a reminder that I'm going to have to lay the groundwork for respect of our relationship with all the other medical personnel I have before me.

Again, thank you and thank you and thank you for all of your kindness -- I hope this post wasn't too depressing. Lorraine got the doc to give me some Zoloft to lift my spirits, but I don't think I need them. She's concerned that I cry in the middle of the night......and I think that's perfectly natural and kind of comes with the territory. It's part of the grieving process, right? I don't feel debilitated by it because I'm still laughing and smiling, and facing the disease with optimism and MAJOR hunger for knowledge. I imagine I'll become depressed as I progress with the chemo and feel isolated, etc. But for now, I'm ok. In fact, I think I'm going to slip HER those little pills, because I hear they help you to quit smoking and getting pissed off by little stuff! Now I WILL tell you that if I end up in the weight GAIN group of chemoheads, I will NOT be a happy camper. But I'm just going to cross that bridge if and when I come to it.

Thanks again, and I hope all of you are doing well! So much for being brief, eh?

[djs06]

sarah, I could have SWORN I posted a reply to this about 1/2 hour ago- silly me, I guess I forgot to save it!

Anyway, I've been brief with my responses as of late, but that's because I haven't really had much to say, but I've really been thinking of you so often. Honestly, if anyone can beat this it's you. You've been such an inspiration to all of us, and I've read each of your posts with absolute admiration, and always look forward to your wisdom. This is even further proof of your strength. I remember a post where you talked about what prompted your weight loss, and I think about it really frequently- you've made such positive changes in your life, and I couldn't be prouder. You've said yourself that you're much better equipt to deal with illness than you were 80 pounds ago. you've come a long way, and I hope you never lose sight of that!!

The next 6 months and beyond aren't going to be a picnic, but you're going to get through it. That buddy setup sounds like a great idea- I know that it'll be easier for you to talk to someone who is/was going through something similar. You are by NO means alone in this- us folks at 3fc are only the start of what I suspect is a long list of your admirers. As for the Zoloft, it should help with anxiety too, which you certainly have plenty of. If you feel like it'll help you, or Lorraine, then by all means, go for it. If crying in the middle of the night is effecting you more than you think it should, then try it out. You're the best judge of what's best for you. I'm so sorry you're in this position- you and Lorraine are in my thoughts and prayers. On a similar note, I'm within 20 miles (i think?) of you (though I'm back in CT for the month), so if you need help with anything please don't hesistate to ask, I'd love to help you out and/or keep you company if you or Lorraine need someone to talk to.

Also, I love your Eleanor Roosevelt quote- so appropriate for your situation. You are strong, Sarah; I suspect even stronger than you realize.

[jiffypop]

ppssssssttt.... sarah - there's all kinds of support out there. information on getting through chemo.. if you need a hand digging stuff up just holler... but it also sounds as if you're doing just fine in that department.

and there's also a company that makes decent hats especially designed for chemo patients. some people like the wig. others find the hats more comfortable. others switch off....

and who IS this doc? i have WAYS of finding out info...

i'm so impressed with you... and lorraine.

[Sheila53]

Thanks for the update, Sarah. Education is power, and your research is making you even more powerful thank you already are.

Ooohhh, love those buzz cuts on women. They're also fun to run your hands over--lucky Lorraine! My mother had a wig made especially for her when she found out she had lung cancer. Surprisingly enough, she didn't lose much hair and never had to wear it. Her fingernails also grew a lot longer while she was undergoing chemo. If in your research you ever come across the reason why that occurred, let me know. I thought it was kind of strange.

Good idea about making sure ahead of time that Lorraine is treated like any other spouse. It's certainly too bad that you have to make a special effort at this time and that it isn't just a given.

Don't let yourself become isolated if you can help it, Sarah. Rely on your friends as much as you can. Friends often want to help, but don't know what to do or say, but if you can show them a way that they can help, they're more than glad to do it. And don't forget to come here and share your struggles with your internet friends. We're here to support you!

[Stepping Out]

You have such a positive attitude about your situation . Your battle is just as much emotional as physical, and you seem like you're already dealing with it well.

I've had a PICC line, and believe me, it's no biggie A WHOLE lot better than being stuck all the time . I had mine for a 5 week course of antibiotics for osteomyelitis (bone infection). I don't think Lorraine will be freaked out by it-it's really not that bad. The process only takes about 15 minutes; and there's no scar-just a tiny mark.

I hope the results of your tests are encouraging-and I'll be thinking of and praying for you and Lorraine.

[howie6267]

Good to hear from you Sarah. I don't talk/type big post but you are in my thoughts a lot lately. I think you are taking this on with a great outlook and if you cry at night I think that is perfectly normal I know I would. Keep us posted and try and keep up your spirits.

[Tammy32]

Ok, I was outraged that they would not initially let Lorraine go back with you because she did not fit into their "idea" of what a spouse or family memeber should be. Way to go on standing your ground! It may just be one more battle that you have to fight through all this. Heck though, I don't think they dare mess with you to much, I don't think they have a clue who they are dealing with. I'm sure that before you are done with this process you will have extended a long arm in helping those who would not be so accepting before be more accepting and understanding.

It is really hard to put your life in the hands of a doctor that you don't personally know. You are quite informed so if you have done your research I think you will be just fine. From what you said she sounds as if she will do well for you. Remember if your gut says no get the heck out of there! Instinct is a great judge of character for the most part.

Wow, the PET test does not sound to fun. I think the worse though is waiting on those results. I'll be thinking about you more than ever tomorrow. Remember, you are a fighter and no matter what you learn you are going to beat this. There is no other option!!

I hear ya on the hair issues. I have long hair and would not want it to fall out in clumps. I would do the exact same thing you are doing. I'm kind of anal on planning and get grumpy if things don't go to smoothly. Being prepared is always best. At least your insurance is going to cover some of the costs. It's very expensive, but I'm sure it will be so worth it. Whatever you can find to make you more at ease during this is one less thing you have to worry about.

Wow, the Buddy program sounds great. I think you have tons of great support here and elsewhere but having someone who has gone through what you are about to go through is going to be just priceless to you. I have no doubts that once you have this beat that you will return the favor and then some.

It truly sounds like you and Lorraine have found a balance to all this for now. It's really hard when you both have two very different ways of dealing with issues. I'm so glad that you have her!! Thank you so much for keeping us informed even when you are not feeling well at all. Btw, I think the crying is normal. You have had to take in alot of life changing information in the past week or so. I'd probably be more worried if you were not able to show any emotion. I guess it becomes un-healthy when the crying and depression totally consume you. I'm sure it is so, so hard for Lorraine to have to see you going through this and your tears bring her considerable pain. I guess I don't blame her for wanting you to feel better by wanting you to take Zoloft. It serves more than one purpose. Yours and hers emotional health. Take care. You are just the best!!

[heather_dw]

Sarah,

I have been scarce lately, but just wanted to stop in to see hpw you were.
I am sorry to hear it is cancer, but you seem to have a great set of medical personnel at your disposal. I know you can fight this and I will be thinking about you are Lorraine every day!

Not much else to add that already hasn't been said

((((HUGS)))))

[Stepping Out]

Prayers are going out for you today for your PET and CT scans. I'll also be praying for wisdom for your medical team on how to best treat your cancer.

[mezmerize]

Sarah, Thanks for the update. I'm sitting here typing with tears in my eyes. I have so many things I'd like to say. I've always told my children never to hold back their tears. It helps us deal with our problems/hurts. I'm sure somewhere out there medical research has reports how it helps. Your one of the strongest women I know. (the other is my mother) By arming yourself with knowledge your going to be better prepared for what's to come. I know it's not pleasent reading what might/will happen but your showing how strong you are by doing that.
I pray that you and Lorraine get treated with the respect that your treatments go better than they planned. I know the thought of possible weight gain isn't fun but I know you can do it. You have a huge cheering section right here just a click away. I have so many other things to say but am having a hard time putting them into words. Please keep us posted your going to beat this!!

[Jen]

Hey there Sarah. Thanks for letting us know what is going on with you. Please don't feel isolated! We are always here, even if we aren't there in person we are with you in spirit, so many of us think of you a lot and wish you well.

I work right next door to a cancer ward and see tons of ladies with no hair or brush cuts. You know it is really very nice looking and I wish I were brave enough to get a brush cut sometimes. The wonderful thing is that you focus on the person's face rather than the hair which sometimes hides facial features.

Take care! I'll be thinking about you often and praying that things are going well.

[Tammy32]

Heya Sarah, Peek-a-boo, I see you. I know this is a difficult day for you. I'm vibing you lots of positive thoughts. How special that so many people care for you. That says tons about what a wonderful person you are Sarah.

[Goddess Jessica]

Sarah -

I want pictures of those PET scans. How weird will that be!

I have to vote with crying is normal. Actually I would vote for tearing down the walls, drinking a bottle of scotch and crying is normal.

Sending my healing vibes.

Jessica