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My journey....starting with a swollen right groin lymph node.

AaronW's picture
AaronW
Posts: 21
Joined: Aug 2010

I ghosted these boards for a bit and see there are alot of caring and experienced survivors here. Even though I feel like I'm getting ahead of myself I decided to post now.

About a month ago I noticed a "bump" in the area of my right groin. I wear alot of equipment at work so thought it was possibly a hernia. It seemed to subside some when I was off of work for a few days.

After about a week and a half, I became more concerned. I just turned 40 in June and am very healthy. Fortunately, I've been fairly religious about my yearly physical which work pays for and set this year's appointment up early. So,on August 5th I had my physical. My doctor said it could be a hernia but more than likely was a swollen lymph node.

A few days later, I went in for an ultra-sound. When the lady performing it said, "I'll be right back..." I had a feeling something was wrong. Sure enough, another technician came in with her. Shortly thereafter, I had a CT scan. I never had one before and consider that quite unpleasant - more so because I was not mentally prepared for that.

At any rate, my doctor called me at home later and was pretty straightforward with me. Basically, he explained that I had a cluster of nodes in the region of my right groin that were swollen and "some more" in areas nearby. He explained that I need to have a biopsy done.

On August 18th I had the outpatient surgery. They ended up making about a 3 to 4 inch incision and removed "some" lymph nodes. The general surgeon won't give me any indication one way or another, however, more and more I'm prepared for the worst.

For those experienced in this, you would know that I just gave a quick version of an already long story. The initial shock of "Lymphoma" and everything surrounding it has subsided and now I'm ready to tackle whatever comes my way. I'm hoping I hear something today, though they said it will probably be Monday. I feel like each day that goes by is wasting time for treatment.

I am encouraged by what I read on these forums and regardless of my soon to be learned diagnoses...I wish you all the best. Stay strong and help each other because that is good mental medicine.

Aaron

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Aaron,
Hang in there man. This disease hits at least 66,000 people a year. That is diagnosed people not undiagnosed people. Right now we don't know if thats what you have or not. I am no dr., but.......? I was diagnosed in April of this year with nhl. I was on the watch and wait thing like so many others on here. In June I had a bone biopsy and it was in the bone. It does not make any difference from what they tell me. It is treated the same. It is very treatable. There are so many different types of Lymphoma so if thats what you have it will have to be classified. It is all treatable though. I do know what you are going thru. Sort of like a duck on the pond,cool and calm above water ,but paddling like hell underneath. We all been thru it on here. It is normal,believe me. Just a little advice; stay off those web sites with all the statistics. They will drive you crazy. They are good for statistics, even though some are way outdated,but we are all different in the way we respond to any treatment. You can see that by the post on this site. I guess I am putting the cart before the horse as well, but I just want to prepare you IF and I mean IF thats what your diagnosis should turn out to be. JOHN

AaronW's picture
AaronW
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Joined: Aug 2010

Hey John, you hit the nail on the head with the duck analogy! I couldn't have said it better myself. Thanks for the reply and I really appreciate your input and advice - which is well taken.

I'd be golfing this weekend but the incision site is probably going to prevent menfrom doing that. My computer golf will have to work for now to keep my mind occupied the next few days! :)

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I know because thats the way I felt as so many others do. That man macho stuff kinda of melts away doesn't it? hahahaha. At least it did with me. Anyway like I was saying we got to wait and see how all turns out. In the meantime you will worry no matter what anybody says. If you didn't, then you wouldn't be human. What part of the country do you live in. I am in North Carolina and it is hot,hot ,hot. We got people from all over the country and some from across the ocean on here and they are all great people and they will stick with you and guide you. They really helped me a lot. John

AaronW's picture
AaronW
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Joined: Aug 2010

People have definitely seen another side of me they haven't seen before - at least from an emotional standpoint. I'm in the Monterey, California area.

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Aaron,
Sorry to hear about the news, glad to hear they have already done a full node biopsy. Not to make light of the situation, but 'Welcome to the Club'. That's how we all greeted each other at my treatment center.
Back to the biopsy. Once they get through Pathology, that's when they will be able to give you a difinetive answer. Until then we play the wait and worry game. Once they are finished with the biopsy and ct/pet they can stage it. My hopes are that it has been discovered early and only at 1 or 2.
The Oncology teams will probably want to attack it as fast as they can. The faster the battle starts the faster to recovery. You will get a lot of info thrown at you and with the emotional/ life change it can get rough. Honestly though, the spirit and will power are tougher and YOU CAN MAKE IT THROUGH THIS. There is a lot of experience and info with everyone here, keep us informed of wehat is going on.
Dave

AaronW's picture
AaronW
Posts: 21
Joined: Aug 2010

Thank you Dave, I have the same hopes on the staging. I appreciate your reply.

COBRA666's picture
COBRA666
Posts: 2418
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Don't let it really worry you about your emotions. We are all human beings and stuff like this can really get to you. Its all new to us when we face stuff that is unknown. Its different if you happen to be walking down a dark road at night because when you get to the end and see some light you feel pretty good. Lymphoma, if thats what we are dealing with is different in that it is inside of us. You can't walk away from it. You can walk all week and it will still be there. Its hard at first to take in that it is treatable. Again I am putting the cart before the horse. I am just trying to compare to what it feels like and how the mind races. I can tell you that you will really be on pins and needles the closer you get to seeing the dr. for a diagnosis. You already know that though. That is how I felt anyway. I really feel for the ones that have cancers that are not treatable. I never really paid much attention to it because it was something that that always happened to the other guy. Then boom, I was the other guy. It really gets your attention. Believe it or not there is a cancer for every part of the body from head to toe. There is a dicussion board that I use to get on this site and I could not believe the different types there are. They are listed in alphabetical order and there has to be thousands of people on there. They are just the ones that know these sites even exist. You are not alone in this battle so stick with us if you are diagnosed with lymphoma. We will all be here for you.I am sure you will be getting some more responses shortly. John

allmost60's picture
allmost60
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Hi Aaron,
I sooo enjoy when folks post pictures of themselves. This picture of you makes me think FBI..CIA..or Police Detective.... too funny, huh? Cool pic.
Sue

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Sounds like you have already been through some really difficult parts of this journey. Now the waiting for diagnosis,staging and treatment. No matter what the stage or type they are all treatable. Sometimes the more aggressive types are easier to treat. I wish you the very best and keep us posted. Mary

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merrywinner
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Joined: Aug 2009

You probably already know but the stage is not as important with Lymphoma as with other cancers. Your grade is.....but still all treatable.

AaronW's picture
AaronW
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Joined: Aug 2010

No I didn't know that Mary...thank you for pointing that out. John wrote something earlier about websites and what-not, a few days ago I stopped reading about this type of cancer because I became too focused on the unknown still. I decided the morning of my biopsy to stop the research for now because I have a general idea on the basics and will go from there when I have more information.

Funny, it took me awhile to post and I'm glad I did. Just writing about it makes me feel better and not as alone, though I wish there wasn't a need for these type of blogs in the first place but that, unfortunately, is not the case.

I didn't expect so many responses. Thank you all so much. And John, again you make so much sense when you talk about much worse types of cancer so hopefully this is the only type I have (in comparison to the many others - sounds ironic to say that though).

I just found out the surgeons office did not get my lab results today (Now 5pm west coast time) so I plan on doing something fun with my family this weekend. :) Waiting to wait...LOL

merrywinner's picture
merrywinner
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Good idea to stop the research until you know exactly what you are dealing with. Information overload can be exhausting. Enjoy your weekend with your family. If and when you need us we are here. Rest the mind. Mary

COBRA666's picture
COBRA666
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Aaron,
See what I mean about the people on this site are here for you. These are some great people that are like asecond family. We all been or are going thru this. Its scary thats for sure but keep in mind it is treatable if thats what it turns out to be. Now go have fun with the family. Try to relax your mind, as difficult as that may be. Just like all the rest of the people on here I'll keep you in my thoughts because I do know what you are going thru. Let us know how it all goes. John

AaronW's picture
AaronW
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Joined: Aug 2010

Well, the general surgeon's office called me early this morning and asked me to come in. I knew that wasn't good because they wouldn't tell me anything over the phone. About a half and hour later I was given the news, NHL possibly early stages. I have two clusters of swollen nodes - one in right groin area and the other somewhere nearby in the abdomen.

He referred me to a Stanford Oncology group but I couldn't get an appt. until Friday morning. I'm not sure, but I imagine I'll need to get a blood panel, bone marrow check and a full-body scan. Any input is appreciated because the surgeon was not sure exactly what will be done though he just mentioned these things, that's why I have to go to the Oncologists.

I expected this so I had a few weeks to be strong but it's still tough. I thought NHL was the "better" one but after doing some reading when I got home it seems that the survival cure rate is a little less overall than regular Hodgkins. Any input would be appreciated...thank you.

Aaron

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COBRA666
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Aaron,
I researched the heck out of the difference myself when I was first diagnosed with NHL and it confused the heck out of me at first and to an extent it still does. I think I know the difference but not 100% sure. One vs the other has good sides and bad sides with each. I am going to let the more experienced ones on here answer these questions. All I can say is do not read to much into those web sites. They can confuse you and scare you needlessly at the same time.I am not saying what we have is not serious because it diffinitely is. Those web sites are good for stats and such. Some are outdated as well. I know of a few people on here that can answer the questions for both of us.They know what they are talking about. They will get back to us I am sure, they always have. Just keep watching and I will too. John

AaronW's picture
AaronW
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Okay I'm not the only one then...LOL...

Since I basically have what you have, how are you doing with what you are going through if you don't mind me asking?

COBRA666's picture
COBRA666
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Joined: May 2010

Don't mind at all. I am actually doing pretty good. Better than I thought anyway. I did have a lot of tiredness after my first round of treatment. That was probably due to something called tumor lysis. Seems that happens to a lot of people first time around due to the extreme killing of the bad cells. The tumor spend a long time growing and you never notice it. When the chemo hits it then it starts killing so fast it causes discomfort in the kidneys trying to get rid of the dead cells so quickly. That could cause kidney shut down in some cases so you have to be aware of what is going on. The discomfort in the abdomen was due to to the rapid shrinkage of the tumors leaving empty space and the organs moving to fill those areas. What may have taken years to build is shrinking in just days. The chemo will destroy good cells as well and this is what causes the weakness and tiredness. You wind up with dropping blood counts. The good thing is in most cases the good cells regenerate very fast. The lymphoma cells are slow growing and take a long time to grow back. We all react differently to the chemo, but in my case I have been fortunate in that I have rebounded pretty quickly. From what you say the Dr. says it sounds like stage 2 for you, but you really won't know till they do a biopsy to test the type of cell and a scan to find where they are located. If it gets to your bone it will be a stage 4. It doesn't matter where it goes in your body it will still be lymphoma. If it is in your bones you do not have bone cancer. It is lymphoma that has reached the bone. There's a big difference. I understand there are a great many types of lymphoma so we have to start from there. anything else let me know. John

yesyes2
Posts: 462
Joined: Jul 2009

Can't say I really understand the difference but I know that HL for the most part is considered curable. Some forms of aggressive nhl like DLBC is also considered curable. However the indilent types of NHL are not curable at this time, but are highly treatable. I'm sure you guys all know this already. I know the standard treatment for HL is much more harsh than the standard treatment for most NHL. Hope this helped a little.
Leslie

yesyes2
Posts: 462
Joined: Jul 2009

Hi Aaron,
My name is Leslie and I wanted to say hi and welcome you to our little group here. I am really sorry that you had to become a member, but everyone here is wonderful and really wil;ing to help. I have had NHL twice, first time in Jan 2008, with a recurrance in June of 2009 while still on maintenance treatment. I finished 6 cycles of RCHOP in Feb and am currently in remission, YEAH!!! My type of lymphoma was both B and T cell, agressive and very rare.

Anyway, I live in Santa Cruz so we're neighbors. If you are in Monterey there is a group of Oncologist who are very good and very knowledgeable in your area. And CHOMP is also a good hospital. Like you I went to Stanford for a second opinion both the first and second times. The specialist I saw is no long there but with Genentec, makers of Rituxian. I also go down to UCSF and love my specialist there. And my hemi/onc here in SC has been my doctor for 18 years. Getting into Stanford in just a few days is great. Be prepared for your head to be swimming with the amt of info they will throw at you. Bring a friend as your second pair of ears and a tape recorder if you have one. If you havn't had a full body CT they will want that plus a PET/CT, different animal, complete blood work and a BMB. Be sure to insist on being given sedations for this test as I've heard Stanford doesn't do this. Oh, also all the pathology slides so they can make their diagnosis.

Good luck, I'll be thinking of you. I have survived breast cancer twice and lymphoma twice, not easy but I'm still here kicking and fighting. I'm sorry but in my world there is no good cancer and most people who say that have never had cancer. Sorry if I offend anyone but that is how I feel. And sorry for this super long post.

Blessings,
Leslie

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allmost60
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Hi Aaron,
Well...at least now you know! I am soooo sorry! You've still got alot of testing ahead of you, but things should start to roll right along. Beth is absolutely right....the waiting for each test result is totally the pitt's and nerve wracking as all get out! When it's time to do the bone marrow biopsy ask if they can sedate you. I "NO LIKEY" the BMB! My next one will not be allowed un-less I'm sedated, and my onc has now assured me she will give me something. I can't help you on info about HL vs NHL. Once I was told I had Follicular NHL-Grade2-stage3,(typeA) that was enough info for me. Before I learned my EXACT diagnosis I made myself crazy researching. I was rum dummy from nights on end going from one web site to another. No, No No...not good! Now I just come here to the group and ask all of my questions..vent.. ramble or share. There is ALWAYS someone here that is ready to help. This will be my antsy week as Thursday gets closer."YIKES"!!..ha! I will keep you in my prayers and think only good thoughts for you. Soooo many folks here with such good information to pass along to you....just ask! Sue

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AaronW
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Well, finally got to the Oncologist. I was very happy with him and the group. He was very friendly, explained things very well and spent quite a bit of time with me during the consult.

Basically, I’ve been classified so far as having Non-Hodgkins, Follicular, indolent, Lymphoma. I am borderline stage 1 and 2 he says.

He said the next step is to determine what stage the cancer is in relation to my body as a whole. (one through four). I have to have a full-body scan done, a bone marrow test and a series of blood tests completed. I’ll have this done by the end of next week and then on September 13 I’ll meet with the oncologist again to discuss a plan of treatment based upon test results and what stage I’m at.

This must all sound very familiar to most of you...

Any insight on the full body scan? I'm not real clear on what that entails yet but hope it's a little better than the CT scan I endured a few weeks ago. Also, how painfull is the bone marrow extraction from the hip? He said they will give me a local anesthetic.

Aaron

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COBRA666
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Joined: May 2010

Aaron,
I will do the best I can to explain. The ct scan picks up abnormal areas of the body such as enlarged lymph nodes. Sometimes they do it with contrast and it makes the areas really stand out. The full body scan is the pet scan where they give you contrast and inject a small amt of radioactive material into your vein. The stuff you drink is full of sugar. the sugar attaches to the radioactive material and it circulates thru out the body and where there is any cancer activity the scan will show an uptake in activity in the cancer cells. The metabolism of cancer cells is much higher than in normal cells. The scan would not be able to pick the activity up if not for the higher than normal activity. This is how they will stage you. Depending on where the high activity is in you body. An example was I had a lot of activity in my abdomen but very little in a small area in the shoulder and groin. The shoulder and groin was not even picked up on the ct scan. Those areas were so so small the onc. Doc said it was doubtful it was in the bone. I had a bmb to be sure and guess what,it was in the bone. Very little but it was still in there and that put me at a stage 4. Doc said it did not matter, it was all treated the same. Anyway it did not hurt because I had the anesthetic. I did feel the pressure which was uncomfortable. I would not have had it if not for the anesthetic, because I hear they are very painful. I am sure you will get some responses to that effect very shortly. We are still here for you. Most of us have been thru it or are about to go thru it. John

AaronW's picture
AaronW
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Thanks John...anesthetic it is. :)

Budski1279's picture
Budski1279
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Joined: Feb 2007

Hi Aaron,
I found mine the same way in the right groin. I was dx with stage 4 grade three Agressive Folicular NHL. The bone marrow test is not pleasent. My dr said it was like being kicked my a mule. I agree. He said it was 80% likely to be in my bone marrow. It was not. I was given six sessions of R-chop and after the mid point was scanned and all the cancer was gone. I just saw my dr for a follow up last week and I am still cancer free for the past three and one half years. Everyone is different and you seem to be in good phyiscal shape.
Hang in there. You will get through this. God Bless, Bud

allmost60's picture
allmost60
Posts: 3179
Joined: Jul 2010

Hi Aaron,
I was not given a sedative for the BMB, just the lydacane(sp?) to numb the area where they go in. Please... ask ahead of time to be sedated or given some really strong pain medicine, because without it, the procedure is very very un-comfortable to say the least. No, I'll be very truthful...for me it was the worst thing I've had done since being diagnosed. The last thing I'd ever want to do is scare someone, but it's always better to tell the truth, in my opinion. I never had a full body scan done...just the CT scan which wasn't painful at all for me. Sounds like you are well on your way to getting treatment. Keep us posted and I'll be thinking of you with good positive thoughts.
Sue

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Aaron,
If you talking about the pet/ct scan, I had that done last week at Stanford. They don't allow you to eat or drink anything except water for 8 hours, then they give you an injection of the radioactive glucose. You wait in a quiet area for about 45 min the go into the scan area. They have you lie down and wrap you like a mummy so your arms cannot move. Takes about 30 min. I also had an additional ct after the pet/ct so it was a bit longer for me. If you can have it in the morning try to do so. That way you don't have to go all day without eating. Are you planning on having it done at Stanford. Best wishes as you start your journey..
Lisha

tcvine's picture
tcvine
Posts: 174
Joined: Aug 2010

Hey Aaron,

I'm an old guy who's tried lots of things, including some pretty heavy piercing (like 00 ga surface piercing). I don't have any of that any more, but I can tell you I would rather do that again than have another bmb without full anesthesia. I had one done while I was still on the table after the lump in my throat was taken out. That was no problem. Then, down at Anderson, I had another one with something they called "sleepy" anesthetic. It turned out to be oral versed plus local anesthetic.

Next time I'll insist on full anesthetic. I told them I am a wuss. Good news was that they were both negative.

Good luck with yours, and don't worry. This is my second week on chemo and I have had almost no problem. Just wear out much sooner than I used to.

God Bless,
Tom

AaronW's picture
AaronW
Posts: 21
Joined: Aug 2010

John, Bud, Sue, Lisha Tom,

Thank you. I'm not much of a needle guy anyway so thanks for helping me make up my mind with this one ahead of time! lol

I feel like all this attention is focused on me right now and I feel bad about that when I read other posts of people who are in a much worse situation than I. I'm sure I'll be able to help out those in need in the future just like you all are helping me. Thank you very much. I'll keep you posted on the progress. Tomorrow is just blood work so that is the easy of the three...next week are the PET/BMB.

Stay safe and have a great weekend....Aaron

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Aaron,
When I got my bmb I was sitting in the exam room and next to me was the bmb tray. It was covered up and sealed to keep it sanitary. I never saw the needle till after the proceedure was over. Glad I didn't!! That was the thickest needle I ever saw. It was about an 1/8" across. It is a hollow stainless shaft that they screw into the bone. It has threads on the tip. When they take it out after they get the samples, they did not unscrew it. They rocked it back and forth. That was a lot of pressure. I actually thought it may break. I am not trying to cause you any anxiety, but ask them to unscrew the thing when taking it out. I did not know to ask them that. I just don't want you to have any surprises. I wish I would have known before I went in. I did have the anesthesia and my Onc. explained everything to me while it was going on, but removing that thing was not a good experience. There are no nerve endings in the bone so I guess they figure it is OK. John

AaronW's picture
AaronW
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Joined: Aug 2010

hey I'm all about not pulling punches....and I really appreciate it. Maybe I can blame that on my line of work.

Thanks for the heads up! :)

AaronW's picture
AaronW
Posts: 21
Joined: Aug 2010

John, Bud, Sue, Lisha, Tom,

Thank you. I'm not much of a needle guy anyway so thanks for helping me make up my mind with this one ahead of time! lol

I feel like all this attention is focused on me right now and I feel bad about that when I read other posts of people who are in a much worse situation than I. I'm sure I'll be able to help out those in need in the future just like you all are helping me. Thank you very much. I'll keep you posted on the progress. Tomorrow is just blood work so that is the easy of the three...next week are the PET/BMB.

Stay safe and have a great weekend....Aaron

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Things are underway for you it sounds like. You mention you are a stage 1 and 2 and I could be wrong but are you sure that is not your grade? The 1 and 2's are the indolent or slow growing types and they can tell that from biopsies. The upcoming scan will show the areas involved such as above the diaphragm, above and below, left side, right or both, other organ involvement etc. This will determine your stage. Plus the bone marrow biopsy. I was diagnosed 2 years ago with follicular NHL grade 1 stage 4A. The letter refers to without symptoms(A) or with(B). I was very upset at being a stage 4 with the lymphoma very widespread but after talking with my hematologist was able to understand that with lymphoma it does not matter where it got to it is all still lymphoma and when they treat it, it all gets treated. In addition I had 50% bone marrow involvement. I now am in complete remission including the bone marrow. As to that bone marrow biopsy I just don't understand why so many are put through that with just a local anaesthetic. It's a rough procedure and they have the means to make it a whole lot better. My MD always puts his patients under light sedation one of the reasons being that they have to go in twice at the back of the pelvis both sides. I have had this procedure twice and both times I was put to sleep with what is called MAC sedation standing for Monitered Anaesthetic Control. It is great and holds much less risk and recovery time then general anaesthetic. I went to sleep and woke up when it was all over. I don't remember anything nor did I feel anything yet I was recovered and ready to go in less then an hour. In fact if you wear the right clothes(sweats) or something that is easy to get partially down you don't even need to get undressed. I felt fine with no nausea or anything and walked out with a dressing across my lower back. They medicated me for pain through the IV before they woke me up so the sore back came on gradually over the next several hours but was not too bad, just needed Tylenol for it. Tell them you want the MAC or light sedation and that you don't want to be aware of any of it. Hopefully they will be in agreement. Sorry this has gotten so long but for me at least I wanted all the info I could get and understand from anyone who had experienced it. Good luck!! Mary

AaronW's picture
AaronW
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Joined: Aug 2010

Mary,
You are absolutely right - it is grade not stage. I'll get all this lingo down eventually I'm sure. :)
As far as the MAC I'll definitely ask for that. I, just like all of you here, have been tortured enough already so I'd rather be out as much as possible. The original biopsy left a 4" scar on my right groin and I can finally sit and move around better now fromthat procedure from just under two weeks ago.
At least for me, I enjoy and am encouraged by your post and so many others...regardless how long they are. I want to know the good and bad from those with experience. Just as someone helped you out, and still does here, I appreciate the assistance and "family" atmosphere here.
We all are on a similar journey but will experience many different things along the way. I'm sure my turn will come to help ease someone's mind or give a little advice.
Thanks again and have a great weekend.
Aaron

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

Aaron,
You are so right about your turn coming to assist someone and believe me you will appreciate doing it. It makes you feel great to know you are helping someone knowing not too long ago you were in their shoes . You will be looking for someone that is new to the site asking questions just so you can help them. We have new members all the time. Its not the kind of club we are looking to join, but it is a great place to be knowing we have people that share our illness and are there to help us. Just imagine the ones that are not aware of this site. Can you just imagine how alone they must feel. I went a month not knowing about this site and it was horrible. You feel so alone and apart from everybody else. It is an unpredictable ride for sure. Things will start to fall in place as you go. You will have ups and downs but you will be fine in the end. John

allmost60's picture
allmost60
Posts: 3179
Joined: Jul 2010

Hi John,
You were the very first person to respond to my post on July 8th. From that day on I found a new family and peace, dealing with this cancer. I too often wonder how many others are still looking for a group like this and having to deal all alone. Breaks my heart at the very thought!!
Sue

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Aaron,
That's the attitude! Doc's did'nt get back to you. Make the most out of the weekend! Time with family and friends is the way to spend time. Have a GREAT weekend.
Dave

allmost60's picture
allmost60
Posts: 3179
Joined: Jul 2010

Hi Aaron,
Tomorrow 5 of my closest friends are giving me a house cleaning party. All I have to do is fix lunch for them all. Next Thursday I will start my first round of treatments so all of my friends wanted to spiffy the house up for me. They knew I was worried about feeling tired after treatment so this is their way of helping me not to worry. I'm sending my hubby off and plan to enjoy every minute with the gals. The waiting and worry is going to happen, but we can minimize it by doing other things to distract our thinking. Please keep us posted and try not to worry too much. Easier said than done...all of us here know how that goes! I'll be thinking good positive thoughts for you.
Sue...
(Washington State)

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

What good friends you have and how good that must make you feel. It should be a lot of fun and you end up with a clean house to boot. I wish you all the best on Thursday. It will probably be much better then you think. It is not easy but with a good attitude it can be done. You have gathered a lot of knowledge for yourself and that will serve you well. God bless. Mary

AaronW's picture
AaronW
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Joined: Aug 2010

Thank you everyone for the support and kind words....

Sue, have a great weekend and I wish you the best when you start your treatment.

KC13167's picture
KC13167
Posts: 215
Joined: Jun 2010

Sue, You've sure got some great friends! How thoughtful of them. Kellie

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Aaron,

The waiting is by far the worst part of NHL for me. Biopsies, tests, scans, it's all so overwhelming. We have so many questions but our minds can't even seem to sort through them to even begin to ask, then when we do get to talk to the doctor we can't remember them.

Treatments are hard physically, emotionally and spiritually draining. I still have moments of doubt and fear that I am sure will never completely stop. The difference now is I know my body so much better. I know when to tell my doctor that I'm not feeling good. I am beginning to trust my instincts sooner than ever before. In some ways I feel like a hypocondriac but it's better to be safe than sorry. Now when something weird pops up I preface my question with I may be imagining things here, but...

This cancer experience is and has been life changing. Change isn't always a bad thing.
Keep your head up, it'll be ok.

Take care,
Beth

AaronW's picture
AaronW
Posts: 21
Joined: Aug 2010

Beth, Leslie, John,
Thank you for your support and replies. Today is still a tough day for me but I'm managing. Hearing your experiences and insight means alot to me. I'll post again tomorrow...I wish you all well. :)

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Aaron,

My scans are combo pet/ct. I don't have to drink anything though. They inject a small dose of radioactive sugar through an IV. I wait for about 30 to 45 minutes then they wheelchair me to the truck...it sits outside of the hospital (mobile unit serves multiple hospitals). I lay on the table, go to sleep when I can for about 20-25 minutes and go home and nurse my headache. Pet scans ALWAYS give me a horrible headache. I think it's a combination of the sugar and the coffee withdrawl............I don't do well without coffee. LOL

It's painless, just boring. I do have to put my arms up over my head though and with a history of bursitis in my shoulders I am in a lot of pain for awhile just because of the position. (I am a wuss)

I started this journey with stage 1. It's come back a couple times and I am now stage 3 but like John says stage doesn't really matter too much with lymphomas.

Good luck to you, and soon you'll be ready to go. Go have a good weekend and enjoy the break before the whirlwind starts.

Take care,

Beth

AaronW's picture
AaronW
Posts: 21
Joined: Aug 2010

Starbucks addict myself so I'm with you on that :)

Thank you for the insight....have a great weekend.
Aaron

AaronW's picture
AaronW
Posts: 21
Joined: Aug 2010

Posted twice on accident the same thing...oops.

AaronW's picture
AaronW
Posts: 21
Joined: Aug 2010

Well, Tuesday the 7th at 1pm is my PET scan (took forever for insurance's medical board to approve it as "medically neccesary")....duh of course it is! :) Ironically, it is our 9th wedding anniversary.

Thursday the 9th is the BMB. I'll keep you all posted....

Aaron

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Aaron,
Just want you to know that I'll be sending my positive energy to you tomorrow and Thursday.
Happy Anniversary to you and your wife..
Thinking of you..
Lisha

allmost60's picture
allmost60
Posts: 3179
Joined: Jul 2010

Hi Aaron,
Good luck on both of your tests and "Happy Anniversary". Will you be given something during the BMB? Don't forget to get that all worked out before Thursday. Things are moving right along now which will help keep the stress level down a bit. Be sure to share with us your test results as they come in. Thinking good thoughts for you!
Take care...Sue

merrywinner's picture
merrywinner
Posts: 620
Joined: Aug 2009

Glad to hear from you Aaron and all the best to you. Be sure and keep us posted as everyone here truly wants to help and reassure. Just curious did you find out if you can have sedation for your BMB? Take care. Mary

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Aaron,
Glad to hear of the progress being made, hope everything goes well with the PET today.
I'm sure all us here are wishing you and yours a HAPPY ANNIVERSARY. (just would be better without the PET). Hope you can get out and enjoy the rest of the day together.
Dave

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