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Had a bit of a scare last week

Discussion in 'Cancer Survivors and Loved Ones' started by Jaguar G, Nov 7, 2010.

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  1. Jaguar G

    Jaguar G Super Member ECF Veteran

    First of all, I'd like to thank trukinlady, and everyone else who helps, for this social group. As a cancer survivor it is nice to see a place where folks can share concerning this disease.

    I am a survivor of stage 4 Follicular (indolent) non-Hodgkin's Lymphoma. I was diagnosed Feb 14, 2006 at the age of 40, and have been in remission since August the same year. Chemotherapy worked very well for me, and I endured it easily, even though that is usually not the case. Don't get me wrong, it sucked, but sitting in those chairs you see people who are having a whole lot harder time than I did. I also did 2 years of Rituxan therapy, which was no problem at all. Since then I have PET scans every six months.

    I am also diabetic, and my GP is a very aggressive diabetes doctor. I see him every three months and have blood work done before I go to him. I had a PET scan last week on Tuesday, so I scheduled my fasting blood tests the same day, two birds/one fasting mentality. I also had blood work done for my oncologist the day before, no fasting necessary. On Thursday my GP office calls and tells me I need to do another blood test, my first one shows my white blood cell count low. Well, this totally freaks me out, the only reason to have low WBC counts, in my uneducated opinion, is because my lymphoma, which was in my bone marrow, has returned. I take off early from work to get another blood test and stress the rest of the day - night - next morning.

    So Friday morning I couldn't take it any longer and call my oncologist's office. I talk to one of the infusion nurses and ask her what my WBC count was from their test. 5.4, perfectly normal. Okay thanks, and how did the PET scan look? Humm, let me see, (she's killing me here), ah, every thing looks good, no changes from the previous one.

    Well, what a relief. I texted my wife and let her know and she tells me she's been having indigestion all day. So I guess it wasn't only me stressing over this. Anyway, I don't see my Oncologist until the 18th, but I know what he will say now. As for my GP, I see him on the 16th and can't wait to tell him I quit smoking and started vaping, maybe he'll get off my butt. I will also tell him, as a cancer survivor, I don't like them telling me my CBC is messed up, call my Oncologist and discuss with him first.

    Anyway, thanks again for this group, and for listening to my whining. Y'all are great.

  2. trukinlady

    trukinlady Resting In Peace ECF Veteran

    Feb 24, 2010
    Missouri, USA
    Jaguar G

    Welcome to the group! Thank you for sharing your experience. I'm glad it turned out OK for you! There's nothing like the dread you feel when something isn't quite right. But the relief is incredible when it turns out all right after all!

    I don't consider it whining, Jaguar. It makes a world of difference when you can talk to someone who has been through the same thing. And you have every right to express what you think and feel.

    It sounds like your Dr has read you the riot act, too, for smoking. My previous PCP did as well. I tried every method on the market to quit smoking, and vaping is the only thing that has worked for me. I found a different Dr, closer to where I live, several years ago, and I recently told him about vaping. He was really interested, and asked me to show him my e-cig. He actually took a few puffs on it, right there in the exam room! He told me he only smokes occasionally and socially. I had no idea!
    But he was happy I was vaping. My cardiologist was pleased as well when I told him.

    Keep us posted on what your doc says about the e-cigs!

    Take care, and I hope you post again soon! :)

    P.S. I love your avatar!! I'm crazy about big cats!
  3. Jaguar G

    Jaguar G Super Member ECF Veteran

    re: the avatar. My wife isn't a cat person but I am, I tried to compromise with a Jaguar but something about a cat that can eat you just didn't sit well, so we got a Pug.

    Yeah, that dread of thinking the worst, after the whole "been there, done that, got a t-shirt" was the worst. I am glad my Oncologist office, and the nursing staff in particular, are so helpful. Had she said, "well, you need to wait and see the doctor" I would have freaked out and gone in that day demanding answers. As it is, they are always happy to give good news.

    I have ready your stories trukinlady, and let me just say after all you have been through and you are still "truckin", you truly are an inspiration. Keep it up, and God bless.

    Jag :thumbs:
  4. Jaguar G

    Jaguar G Super Member ECF Veteran

    I saw my doctors, my general physician last Tuesday and my oncologist today. I told my GP that I was vaping and he said, “good for you, but you do realize nicotine isn’t good for people with diabetes, it causes your vessels to constrict and can cause circulation problems.” I told him it was either through the PV, or cigarettes, but I was an addict and wasn’t planning to stop. He said, “Well, if you got to, I would prefer the e-cig over the regulars.” So at least he shows he can think outside the FDA box.

    So today I saw my cancer doc after having a PET scan last week. I forgot to mention the PV because my scan showed an “anomaly” on my kidney. He says it is probably nothing, maybe the way my kidney was “folded” at the time of the scan, and the contrast isn’t that good with the PET, but there is a chance my lymphoma is raising it’s ugly head. So next Tuesday I get to have a high contrast CAT scan. I bet my fingers are going to cramp up between now and when I get the results from keeping them crossed.

    Let you know what happens. :unsure:

  5. trukinlady

    trukinlady Resting In Peace ECF Veteran

    Feb 24, 2010
    Missouri, USA
    I will definitely keep you in my prayers!!

    (I responded to your last post on 11-07, but apparently I forgot to actually post it! :oops: So sorry! My ADD is kicking in! So, I'll start over. I'm glad I saved the post in MS Word!)

    Hey, Jag!

    It's probably safer to have a Pug! At least you don't have to worry if you are next on the menu! Lol! I'm a dog lover, too. Well, I guess I'll just admit it: I love all animals! :) If I were rich, I'd have my own animal sanctuary, with a special place for the big cats! I especially love tigers.

    I'm glad your Doctor and his staff treat you well. IMHO, that makes a world of difference. My Gyn Oncologist ran a blood test every 3 months for 5 years, then every 6 months for the next 2 years. I'm always a little apprehensive each time I have to wait for the results. Now I only am tested once a year, since I've been cancer free since 2002--Thank God!!
    My Gyn Oncologist always took great care of me, and kept a close watch since my ovarian cancer was Stage IIIC. I was blessed to have a great oncologist both times. They both were caring and compassionate, and took the time to explain details to me in English, and not "Doctor speak" lol! I did do research online as well, and they would answer any questions I had.

    Jag, thank you so much for your kind words! But I can't take the credit for getting through what I have. God's Grace brought me through it. He carried me through it all, every day, every hour. I'm still here--my faith stronger than before--by His Grace.

    There were many times I had serious doubts whether I could make it through another day. I thought if just one more bad thing happens, I’d explode. I've only scratched the surface in my posts. If I posted everything that has happened, I think I would be kicked off the forum for taking up too much space! :) I've made my posts in hopes that it would encourage, and maybe help, others who are, or have been through it, too. Not to hold myself up as a shining example--because I am not. But to say there IS life after cancer!

    And, also to honor the memory of the special people who have passed on. During my own treatments, I had two members of my family, and a very close friend, pass away from cancer. I don't know why I was spared, but I don't want their passing to be forgotten.

    Jag, thank you so much for sharing your experiences! I hope you will post again soon. You have the distinctive honor of being the first man to post here! I hope there will be many more, because this forum is not just for women only. :)

    Take care, and please keep us posted!

    Today 11-21

    Hi Jag

    I'm sorry to hear your news on the PET scan! I know waiting and wondering are the worst, and I'll keep praying for you!

    None of us want to think the cancer can come back. That's another scary part. But I decided I wasn't going to live my life in fear. I can't change the circumstances, but I can change how I deal with them. I try to stay positive, and make each day count. Which, under any circumstances, can be a good thing. But for us survivors, it takes on a special meaning.

    Keep us posted, Jag. We're here anytime for you! And thinking positive thoughts!

    P.S. I'm glad your Dr is supportive of e-cigs! I think they are slowly getting the attention of the medical community, and I hope more physicians will publicly support their patients who use them.
  6. Jaguar G

    Jaguar G Super Member ECF Veteran

    Oncologist told me the CT scan was inconclusive so Tuesday I go for a renal biopsy. I'll let you know how that turns out.
  7. Jaguar G

    Jaguar G Super Member ECF Veteran

    All right, the rest of the story so far...

    Got the renal biopsy done last week which was not too bad for having a long needle stuck in me. Today I went for the results and it is renal cell carcinoma. I am getting an appointment set up to have my right kidney surgically removed.

    Since I was presented with three possible outcomes before the test, this one isn't the best or worse. Best case, it was only a cyst and no further action required. Worst case was a recurrence of lymphoma in the kidney which would require chemo and radiation and still only has a 25% one year survival rate. So I am quite happy to loose a kidney in this case. All things considered this isn't all that bad, heck, I've got two, don't really need them both. Besides, if things get bad I have two kids and two siblings, and that is eight kidneys to choose from. :p

    Surgery probably won't happen until after the new year, so I wish all of you a Merry Christmas, God bless, and keep on vaping.
  8. trukinlady

    trukinlady Resting In Peace ECF Veteran

    Feb 24, 2010
    Missouri, USA
    Hey Jag!

    I'm sorry it wasn't the greatest news, but glad it wasn't the worst!! Thank God!! I'll keep you in my prayers! May you and yours have a Blessed and Merry Christmas!
  9. Jaguar G

    Jaguar G Super Member ECF Veteran

    Thank you for your support and prayers. I go the 12th to the urology surgeon to plan for this, I am currently hopeful he can do a "nephron sparing surgery" where they only remove the tumor and leave the rest of the kidney. It seems to be located in a place to make that difficult, but I am willing to let him try if he thinks it could work. If he tries and gets in and sees it can't be done, then he can have the whole thing. The other option is to plan to take the whole kidney, and do a laparoscopic nephrectomy, that way my recovery time will be lessened.

    Either way, I am ready to get this done and over with. I am not letting this effect my usually jerky yet fun loving disposition. I am getting my kids (20 & 17) a Britta Water Pitcher for Christmas and telling them, "take care of those kidneys, I may need one someday." :p

    Merry Christmas and God bless.

  10. trukinlady

    trukinlady Resting In Peace ECF Veteran

    Feb 24, 2010
    Missouri, USA

    What a great attitude you have! I admire you for keeping a positive outlook, and keeping your sense of humor!
    For me personally, humor helped me stay positive throughout my experiences. For instance, one of the wigs I wore during chemo was a short hairstyle. My husband and I joked that it looked just like Paul McCartney's hair in the 60's! (It really did look like it!:)) When my hair started growing back, I really looked like a Chia Pet! lol!
    I'll keep you in my prayers, Jag. God Bless you, and Merry Christmas!!
  11. Jaguar G

    Jaguar G Super Member ECF Veteran

    The ongoing chronicles of Jaguar G.

    Met my surgeon today, very nice, confident, and interesting man. I haven't gotten the exact date set yet but I am shooting for January 31. He is the man for this operation, and will attempt to do it using robotic laparoscopy. He says it is in a very tricky location between the blood supply and urethra, making it a challenging task but he believes he is up for it. There is a possibility that it will turn into a nephrectomy where the whole kidney is removed, but that is a call for the operation room. Since he is attempting this laparoscopically, recovery time should be only a few weeks.

    Now that I have met him I am even more confident that this, while not a walk in the park, is going to be relatively easy. My wife had surgery for a birth defect on her urethra in 1995 and it was very painful for her, but technology has come a LONG way since then and I wasn't a fan of her surgeon at that time anyway. I am totally confident in this guy, must be a "man crush" LOL.

    Further updates when I know.
  12. Jaguar G

    Jaguar G Super Member ECF Veteran

    Further update, Jan 24.
  13. trukinlady

    trukinlady Resting In Peace ECF Veteran

    Feb 24, 2010
    Missouri, USA
    Hi Jag!

    I'm glad you found a surgeon you have confidence in. That means a lot! I'll keep you in my prayers, and look forward to more updates! Take care and God Bless!
  14. Tuck

    Tuck Resting In Peace ECF Veteran

    Aug 7, 2010
    Twister Alley
    Once we have it. We go threw the what ifs and will it come back? I understand the thoughts you have.
    I had a large lump develop under my armpit. Since all breast tissue had been removed. I was in a panic. It was a saroma and I had to have a drain for a few weeks. We will always have the what if`s.
  15. trukinlady

    trukinlady Resting In Peace ECF Veteran

    Feb 24, 2010
    Missouri, USA

    That is so true! My gyn oncologist is a great Doctor! I asked him to tell me up front the chances of the ovarian cancer coming back. Mine was Stage IIIC. He said it was treatable, and he tested me every 3 months for more than 5 years, just to make sure everything was OK. I am now 9 1/2 years cancer free from the ovarian, and 11 years from the breast cancer. Thank God!!

    Cancer is a scary disease, but after worrying for so long whether it would come back, I decided I was not going to live the rest of my life in fear. I make the most of each day, and I treasure it. If it comes back, so be it. At least I've had the last 11 years!
  16. Jaguar G

    Jaguar G Super Member ECF Veteran

    Made it though surgery alive, sore and working my way back to normal.

    Thanks for your support,
  17. trukinlady

    trukinlady Resting In Peace ECF Veteran

    Feb 24, 2010
    Missouri, USA
    Hello Jeff!

    That's great news!! HALLELUJAH!! How did the surgery turn out? I'll keep you in my prayers!
  18. Jaguar G

    Jaguar G Super Member ECF Veteran

    I am seeing progress every day with recovery, and being able to see it makes believing I'll be "normal" again possible.

    They took my whole right kidney. The mass, even though small, was actually growing onto and around the renal artery so there was no way to remove it and keep any of the kidney. My wife says I am going through separation anxiety with my kidney, maybe I am, but heck, I had that thing my whole life and didn't want to give it up.

    I have five laparoscopic scars ranging from 1/4" to 2 1/2" long, looks like a wild animal attack. I have been telling people my Pug dog turned on me :laugh: (see pic in signature) but no one buys it. I was able to walk about 30 feet the day after, today I can walk 1/4 mile, trying to push myself but not over do it at the same time.

    My left kidney seems to be picking up the slack and I haven't noticed any problems. Still trying to get my GI track on track, but again I am making progress so it will get better. Pain management is difficult; too much and I feel like a zombie, too little and I am in pain but I am figuring out the right way mostly by listening to my body. I have abdominal pain from the nephrectomy, shoulder pain from the gas they use to inflate the abdomen, pain from the holes, and pain from the GI track taking a beating. Addressing all the pain properly is a balancing act.

    For the most part I feel good, see progress and hope to be back to work in a couple weeks. I would like to say thank you and God Bless you to everyone who sent a prayer my way. I feel I am out of the woods, on the path, and will be fine in no time.

    Thanks again and God bless,
  19. trukinlady

    trukinlady Resting In Peace ECF Veteran

    Feb 24, 2010
    Missouri, USA
    Great news, Jeff!! Thank God!!!! It's great to hear you're doing so well!

    Lol on your Pug "attack"! Could it be no body believes you because he/she is a bit short? :)

    I can relate to the balancing act. I'm prone to push myself too much, then I get frustrated when my body can't keep up with my mind! Pain is no fun, either. The good thing is it will get better with time.

    You're very welcome on the prayers! I'm very glad you are getting better! God is great!!

    Take care, God Bless, and I hope to hear from you soon. :)
  20. trukinlady

    trukinlady Resting In Peace ECF Veteran

    Feb 24, 2010
    Missouri, USA

    How are things going? I hope you're doing well!! Let us know how you are!
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