Hey Everyone-
Sorry I have been out of the loop for a while, I hope everyone is well. I just had my DR appt today to go over the repeat CT scan I had about a week ago. The first was 3 months ago. The 2 enlarged lymph nodes they found 3 months ago are still there and the one in my chest grew slightly. My WBC was a bit low also, so my hematologist wants me to see a surgeon on Thursday to discuss the possibility of a biopsy of the node in my chest. I am really worried - but I am sure all will be well.
She also suggested doing a bone marrow biopsy as well - in case they were not able to get to the one in my chest. Has anyone had this done? Is is painful?
Well I was hoping it was going to be better news, but at least I am closer to getting a more definitive answer.
I hope everyone is doing ok.
Write back if you can.
Jen

I had one done the first time I saw my oncologist. I had a good shot of novacaine and never felt pain. I felt tapping on the bone but not pain. It took a total of about 10 minutes. It wasn't bad. After the novacaine wore off, it felt like a bruise for a couple weeks, but I felt no pain at all during it.

Debbiefix-
Thanks for the reply - I am glad it was not too bad!! I was getting nervous about it . . .
Hopefully they are able to get to the one in my chest first - and then we'll go from there. I don't know how I am going to get through the next couple of weeks . . .
I keep looking over at the pictures of my kids and that is helping a bit!
Take care.
Jen

Waiting for all the testing was worse than the actual diagnosis I got. You're going through a rough time. We know it's not easy to wait and wait and wait.

Debbie-
Thanks, this waiting is terrible. How did you get through it? I have to get the bone marrow biopsy done because they are unable to get to the one node in my chest. The surgeon said that it would be a very involved procedure . . . He wants to wait 3 months do a repeat scan and see what happens. This really is awful. I just want it over. We are renovating our house right now, so maybe I will just dive into that to distract my self.
Thanks,
Jen

Hi Jen

I screamed like a baby then had to apologise and admit it wasn't too bad!! I'd heard all the horror stories and was expecting the worst so I started being a drama queen before they got the needle anywhere near me!

At least I gave the doctors a bloomin good laugh!! Wonder why they called me trouble??!!

Ails xx

Thanks!! That put a smile on my face!!! So it was not that bad? I have been through 2 births (cesarean) and I did not get nearly as nervous about that as this!! My palms are sweaty just thinking about this!!

Hey Jen

If you can go through childbirth you can go through this!!!

I can honestly say my pride hurt more than my bum!!! (well, hip)

Ails xx

Ails-
Thanks, you really made me feel better about this. My palms are not nearly as sweaty!! Quick question, I know my hematologist just wants to be cautious about all of this, but would they do a bone marrow biopsy if they really thought it was nothing and just wanted to be sure? Do you think she is just not telling me everything?
I think I may be reading too much into this, but thought I would ask . . .

I don't really know how I got through it. Probably just the way you are. I first had problems at the beginning of May last year. I didn't have my biopsy til June 14th and got the results at the hospital that day. It's the only way. I told the surgeon I could no longer wait.

I can't really say not to worry, because I know how worried I was. I was completely obsessed. I hated waking up in the morning. It was the first thing I thought of and at night it was the last thing I thought of before I went to sleep. I thought of it constantly all day for over a month. It wears on you. I couldn't eat, couldn't sleep, etc. But let me tell you. After I actually had my diagnosis of Non Hodgkins Lymphoma, very low grade and knew the treatments I'd be having, things calmed down. I had Rituxin which is immunotherapy. I wasn't sick, didn't lose my hair. Life was normal again. I'll have 4 treatments of Rituxin every 6 months for 2 years. So this is normal now and I'm in remission. In fact I had a CT scan today to make sure things are still clear. I'll have a PET scan on Wednesday and then I'll see the oncologist on Friday. I do think everything is ok though, so I'm not too freaked out this time.

The bone marrow biopsy was done in the hip. As I said, it wasn't bad. If I had to have one tomorrow, it would be ok.

Thanks Debbie-
What helps me is knowing that I am not the only one going through this. Hopefully all of this waiting and anxiety will yield an answer (I am prepared for either way). I feel as you do, it starts to take over your life. The what ifs are horrible. I have told my self that if I do have to wait 3 more months for a CT scan (which is what I was told today) that I would really try hard to put it out of my mind. We will see how it goes. In the meantime, they will do the bone marrow biopsy. It won't rule out anything with the node in my chest per say, but at least it could provide some sort of answer if there is anything. I just want to take one day at a time and really focus on my family and the positive. Hopefully I will be able to do that as much as possible.
Jen

Debbie - good luck for your check ups - I'm sure you'll be fine - you said yourself you're not too worried and that's a really good sign.

Jen - I think they just wanted all my tests out of the way so that I wasn't having the stress of hanging around after each test.

If you try to second guess why the doctors are doing what they're doing and read to much into things you'll just give yourself a headache. Most of the time they're just being overly cautious - I'd rather have that kind of doctor any day of the week than one who fobs you off.

I know it's easier said than done but try not to worry until you have to (and that day may never come) - even if there comes a time to worry, if you're anything like me, all you'll feel is relief - you know what's wrong and you know what you need to do to get better. Add that to the fact that treatments these days are so good and the cure rates fabulous!!

Hope this helps - if I can be of any help ask away.... if you don't get an answer straight away it'll just be the time difference (I'm in the UK)

Take Care

Ails xx

Ails-
Thanks, you are right. I will try and stay positive.
Debbie - ofcourse, where is my head - good luck with all of your tests!!! I am sure you will be ok.
You both give such great advice and help tremendously. Is there anything I can do to help you both?
Let me know.
Jen

Jen, yes there's something you can do for me. Just trust me when I tell you that this waiting is the worst part. Even if it turns out to be "something" and treatment is needed....this waiting and worrying is much much worse. I can hook you up with extra support if you need it too

Hey Jen

Thanks for asking but I couldn't be better - Just had my first year check up and my consultant greeted me with "Hi trouble" (that name kinda stuck) gave me the once over and kicked me out telling me he didn't want to see me for sixth months as there was nothing wrong with me (he's any amazing guy!!).

You can help me by taking care of yourself and letting me know how it goes.

Right....I'm off to bed as have to be up at silly o'clock for work in the morning

Good Night

Ails xx

Ails and Debbie-
Thanks again!!
Ails have a good night and I will be sure to keep you posted.
Debbie - thanks for the support!! If you get a moment let me know what that info is. I feel much better now, but we will see later!!
Jen

Hey Jen

How are you?

How'd thursday go?

Ails xx

Hi Ails-
Things are going ok - Thursday 11/6 I had an appointment with the surgeon and he really was very reluctant to do the biospy of the node in my chest. He reassured me that he felt everything would be fine and felt that I should wait 3 months and do a repeat CT Scan. I felt better, but not entirely sure that he knew my full history. I spoke with my hematologist the following monday and spoke with her about what he had said. She said that she thought it may be too difficult to get to, but was glad that I spoke with him. She also suggested to wait 3 months again to see if it changed, and in the meantime to go for a bone marrow biopsy. That is scheduled for Dec 5th!! I feel fine, but over the last couple of days have felt a little tightness in my chest and it feels slightly tender - I also just feel off, not necessarily sick, just not entirely right. . . Do you think I should call my doctor?

Anyway, how are you doing?
Jen

Hi Jen

I'm good

If you don't feel right then call your doctor!! Best to err on the side of caution. Your tight chest could be because you're anxious - which is only natural but I'm no expert, hun!!

Take care of yourself and do what's right for you. I'm sure your doctor would rather kick you out of the surgery with nothing wrong with you than think you'd sat worrying / suffering too scared of "wasting" his/her time (not that you would!!) I know my docs would be mortified if they thought they were not approachable

Take care and let me know how it goes!!

Ails xx

Thanks!
I am certainly anxious - which would explain alot. I am just slightly suspicious. It is a feeling I have felt before and it is coincidentally in the same location as the lymphnode in question. I think I am just going to give it a couple of days. Try and destress and see how I feel. Hopefully it will go away. . .
I am glad you are doing well, and I will definitely keep you posted on what is going on. Boy, waiting really is the pits!!
Jen

Hi Jen

If it's any consolation waiting REALLY is the worst bit - get through this and you're laughing

The minute I was diagnosed (and you may get the all clear) a great weight was lifted off my shoulders and my recovery began in that second.

I know I sound really blase, but even when I was going through all the chemo etc - I realised that this was just a blip and I was a lot luckier than someone with something like diabetes or arthritis which can be managed but not cured. This was something I could get rid of.

You sound like an upbeat positive person - never lose that as it keeps you sane and ensures you'll cope with every challenge life thows at you!! Suspicious mind??...........also good, no-one's ever gonna get one up on you!!!!;)

Take Care, keep smiling and keep me up to date!!!


Ails xx

PS

Have a great Thanksgiving!!!!

ails xx

Ails-
Thanks for your positivity!!
I am trying to stay upbeat and positive, it just gets a little maddening at times. . .thanks for listening and keeping me grounded!
Jen

Hi Jen

no probs - any time!!!

Take care and keep me updated

Ails xx

Hey everyone!
I hope you all are doing ok. I just wanted to give you an update. I had the bone marrow biopsy done 2 weeks ago and thank goodness it really was not bad. My husband came along for moral support - I think I made his hand purple from squeezing it so hard! Anyway, I go tomorrow to get the results. . . hopefully I will get closer to getting some answers. How is everyone's holiday shopping going - I am pretty much done with some minor things to get.
I hope all is well and let me know how everyone is doing.
Jen