• livezey's Avatar

    livezey wrote on Rthompson's wall

    Thank you for the thoughts and prayers, greatly appreciated. You also are in my thoughts and prayers and hope everything continues to go well for you. I am going to Georgia for the holidays since I will not be rescanned till January, first time able to go anywhere since I was diagnosised. I'm excited about that, getting to visit my daughter and her family. I think the fatigue that I was having is lessening which I'm happy about. Still awaiting for the VA to call with an appointment for the nephrostomy tube to be replaced with a stent. Yesterday went and watched some college football games. What are some hobbies that you like to do? The weather during the day has been beautiful here is Vegas. Take care and again thank you for your thoughts and prayers.

    1 Comment
    • Rthompson's Avatar
      Rthompson

      Traveling? That is wonderful! Congratulations on the improvement. I am certain it is only the beginning. There is nothing more special than being able to be with family...especially during the holidays. That is sure to keep your mind off of things. Which is exactly the way you need it. Enjoy them! Enjoy the holidays!

      As for hobbies...I do a variety of things. My mother taught me to cross stitch when I was about 8 or 9 and it kind of stuck with me. It also started my love of crafting. I make jewelry,bracelets mainly, now mostly to promote cancer awareness. I also enjoy crafting and painting items or just simple sketching. I used to be an avid runner, but sadly I am no longer physically able to do this. Mainly due to poor kidneys, but also due to results from surgeries, colostomy, no bladder and reconstruction. Continuously looking for something to fill that void. I had been active in one sport or another from very early childhood and not being able to do anything is torture. :) My husband thinks I am nuts in that way. But, I tell him it is one thing to be able to do something yet not want to and not be able to do it at all. I think it is his way of trying to ease my agony. As of now, my exercise consists of housework and walking my huskies. :) They get me through a lot!

      As always... I will keep you in my thoughts and prayers. And, again I am very happy for your upcoming adventure.

      over 3 years ago
  • livezey's Avatar

    livezey wrote on Rthompson's wall

    Hi, I'm tired right now so I will be posting soon again. I will be seeing my oncologist on Thursday so I will be hearing what the next step is. She will be removing the sleeve in the cervix. I also have a nephrostomy tube to my left kidney (due to an obstruction from a lymph node) that hopefully will be coming out in November. Will be talking to you again soon, hope all is well. Take care. Kim

    1 Comment
    • Rthompson's Avatar
      Rthompson

      Wishing you all the best. I empathize with you and te nephro tube. I had them in both kidneys off and on troughout my treatment. In one for 6minths, then the other for 3, then a continuing back and forth as my ureters healed from blockage and radiation damage. Urologist was holding out hope that by doing this it would take pressure off of my kidneys and help them heal. Sadly, it did not. My left kidney now has less than 10% function and has started shriveling up and my right suffers from hydronephrosis, which is why the left one is not to be removed. I sincerely hope that yours will be able to be removed soon with no furter complications. They are most definitely tye most uncomfortable things I have dealt with throughout my treatment. Best of luck Thursday! I will be keeping positive thoughts for you!

      over 3 years ago
  • livezey's Avatar

    livezey wrote on SunnyD's wall

    Thanks for your information. Since I already had the radiation and I am stage 4 if I ever have surgery from what I understand they take everything, including your bladder, rectum vaginal walls and all female reproductive organs. I'm glad you are doing well. Take care and again thanks for your information. Kim

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    livezey started following

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  • livezey's Avatar

    livezey wrote on Rthompson's wall

    Thanks for the information. Greatly appreciated. Our you cancer free now? What an amazing journey. How long ago did you have that surgery? So do you have a colostomy and a ileostomy as all those organs were taken. When did you receive your diagnosis? I got mine February 2013. I do not know anyone with this stage cervical cancer so please forgive me for all the questions. You have come through a long and courageous journey. Thanks for all your information again. Kim

    5 Comments
    • Rthompson's Avatar
      Rthompson

      Januaru sounds about right. They usually allow a three month waiting period to allow thr chemo and radiation to continue to work on cells. As for the TPE, yes it is most definitely a last resort. So much criteria has to be met in order for it to even be possible, that not very many get done. The only saving grace I had was that somehow, as advanced as it was, my cancer had not invaded my lymphatic system. I think this is what your dr is referring to about it being in your blood stream. Surgery at this point is very dangerous. As my dr explained it to me, once in there it is like a rail system granting the cancer cells access to every part of the body, therefore greatly increases risk of microscopic cells being dispersed elsewhere during surgery. So, once there, surgery is not offered. Now, i do not know about if cancer is cleared from that one node or not, I would definitely ask. As far as hysterectomy, that is typically not possible following treatment for stage iv. We undergo such hig doses of radiation that the ability to separate the pelvic organs is no longer possible. Which is why te surgical option is the TPE. It was described to me in this way...the tissue is so radiated that the organs fuse together and the actipual tissue is so fragile, much like sunburned skin, that surgery is very complicated. This is why they have to go in and remove everything..,bladder, colon, reproductive organs, etc... Hysterectomy is not usually offerd for anything beyond stage 2 because of this.
      My follow-ups are still on an every 3 month basis. Most women at this point are at a every 6month or once a yr. But, I continue to have such complications from kidney damage and recurring MRSA infections and most recently I suffered complete bowel cessation, that I require more frequent follow ups to ensure things are progressing in the right direction. For the first two yrs following my treatment and surgery, i was in the hospital every 3 months for either infection or a surgery. Made recovery very difficult. In fact, i just spent the month of Aug, this yr, in hospital to receive TPN when my bowels stopped working. So, next week will mark a two month anniversary with no appts or hospitalizations for me. Which is a rare occassion and something I will celebrate! :)
      I will most definitely kep you in my thoughts that the treatment did the job and you are cancer free. That would indeed be wondrous for a stage iv diagnosis. Were you on Cisplatin or did you start on Carbo-taxol? Or something else? I belong to numerous forums and groups and women are always asking which chemos work the best or what they should try if one did not work. It sounds like yours was successful by early indications. I love hearing that! Now, just sit back and enjoy those upcoming holidays!

      over 3 years ago
    • livezey's Avatar
      livezey

      Hi, hope everything is well with you. Got the sleeve taken out this past week. Awaiting for the VA to call with approval to have the nephrostomy tube taken out. (payment). Then I will be rescanned in January. Oncologist told me I am not a candidate for surgery because of the lymph node involvement. So hopefully no cancer in January but is so I go back on chemo. How is everything with you? I'm feeling pretty good, just sleep a lot. Well will talk to you later, Kim

      over 3 years ago
    • Rthompson's Avatar
      Rthompson

      Kim, I know you are glad to have the sleeve out. One part of treatment now behind you. Onto the next...to get that nephro tube out. Hoping it will be soon. Now, the worst part, the waiting game. The good thing is that it is after the upcoming holidays. I was in the same situation and was very thankful to not have to think about it, or be in treatment during that time. I hope you will be able to do the same. I am very sorry about the inability to have surgery. Sadly, this is often the case with lymph node involvement. It tends to run a much higher risk of distant metastasis and is therefore actually safer for you not to have it than to. Sounds wierd, but when a dr explained it to me, it made sense. But, that is ok, as thoughts are now that it us all gone and NO further treatments will be required!!! Right?!? :) The fatigue will get easier as you get further away from treatment. Until then...remember both the chemo and radiation are still continuing to work so, if you need rest...REST! Help your body in any and every way you can! Will be keeping you in my thoughts and prayers!

      Rose

      over 3 years ago
  • livezey's Avatar

    livezey asked a questionCervical Cancer

    surgery?

    4 answers
    • SunnyD's Avatar
      SunnyD

      Hi livezey,
      I finished radiation/chemo/brachytherapy for stage 2b cervical cancer in June 2012. The first few followups I had clear paps, but in January 2013 my pap came back questionable again. I had a PET that was clear, but biopsies still showed abnormal cells. My GYN oncologist said the next step was a hysterectomy, which he did the following week. The pathology did show a small area of residual cancer.The hysterectomy was nine months after I finished radiation. All went well and I am currently cancer free. Hope this answers some of your questions.

      over 3 years ago
    • Rthompson's Avatar
      Rthompson

      For stage iv cervical cancer following chemo and radiation, a hysterectomy is not generally seen as possible. The reasoning for this results from the extensive radiation we must undergo to shrink the tumor. When the pelvic is radiated to the extent ours is the tissue becomes very fragile and quite often the pelvic organs become fused together. It is for this reason, if surgery is required to remove recurring or remaining cancer cells, a surgery called a Total Pelvic Exenteration is required. This surgery involves the removal of not only reproductive organs, but also the bladder, colon, rectum, and most often the vaginal wall. This is due to the fusing and the delicate tissue, which my oncologist described as being like peeled sunburned skin. That is how fragile it is and why these organs can not be separated as prior to radiation. Yes, as you can probably tell, I speak from personal experience from both stage iv cervical cancer as well as the TPE surgery. I am very happy to read that chemo/radiation killed all of your cells. I was not as fortunate.

      over 3 years ago
    • DaveWaz's Avatar
      DaveWaz

      livezey,

      Thank you for sharing your question. I want to point you to a place on our site that specifically shows WhatNexters who have had experience with a hysterectomy. Perhaps it will give you insight.

      http://www.whatnext.com/experiences/procedure/hysterectomy

      Best of luck!
      David

      over 3 years ago