• Rthompson's Avatar

    Rthompson posted an update

    FINALLY!!! After 5 years of repeated follow up exams every month, then every 2 months and then every three months, I am so excited to report that I have been upgraded to a cycle of every 6 month follow up exams. While this may not seem like a big deal...think of it this way, women...far too many of us dread getting that annual pelvic/PAP exam ONCE a year...try 12, 6 or even 4...How happy would you be to endure that for 5 years and then be knocked down to 2 with hopes of one day making it, once again, to one? Ecstatic...right? lol :)

    3 Comments
    • lawcreate's Avatar
      lawcreate

      AWESOME!!!!!!!!!!!!!! You have been through SO much (I have been rereading your journey). I hope it just keeps getting better and better as time goes by. You GO girl!

      over 4 years ago
    • GregP_WN's Avatar
      GregP_WN

      It's a great big (little) milestone! Each little milestone eventually adds up to the ultimate of being declared NED, congrats on reaching this one.

      over 4 years ago
    • BoiseB's Avatar
      BoiseB

      Praise the Lord and pass the Ben & Jerry's

      over 4 years ago
  • Rthompson's Avatar

    Rthompson posted an update

    WOO-HOO! Guess who has just shared their story with Roche Pharmaceuticals and the CDC to help get the message out there about HPV and the need to further promote the HPV testing method and vaccine? Yep...this woman...that is who! I am so excited to be playing this type of role in helping educate women around the country about this disease and our means of prevention.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Great! Was that one of the surveys that we sometimes recommend?

      over 4 years ago
  • Rthompson's Avatar

    Rthompson posted an update

    As a cancer survivor, I am always asked..."What is the most important thing you have learned from cancer?" Cancer has taught me a lot of things, but the one thing that seems most important is this... With all of the bad things; the pain, the suffering, the loss of "normalcy", the life altering changes, the fear are really not that important. What is important is the simple fact that all of these things happen because they need to. They need to happen because it is where you need to be and when you need to be there. If you open yourself up to the possibilities, cancer can allow such positives to enter your life, both about yourself and others. It will bring people into your life, friends that you would never have known existed were it not for this disease. It will allow you to see such strength and courage in yourself that you would never have believed existed before. It will also show you that, even in the worst of situations, you can laugh and you can love, probably more so than you ever did in your life. This is what cancer has taught me!

  • Rthompson's Avatar

    Rthompson posted an update

    Today Oct 4....Is National Ostomy Awareness Day. If you "Wear 'em...Declare 'em" Do not hide...wear them with pride.

    1 Comment
  • Rthompson's Avatar

    Rthompson posted an update

    In honor of Gynecological Cancer Awareness month, I have designed this t-shirt for all of my Teal Sisters out there....well more specifically for t he men in their lives. (I am currently in process of designing one for us, which I will share) The profits I receive from each sale will go directly to my local chapter for NCCC which enables me to educate women about cervical cancer. I hope you find it to your liking and most importantly, that those special men out there will show their support for you and wear one with pride. After all, you all deserve nothing less. :) https://www.bonfirefunds.com/below-the-belt

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      I applaud your efforts! How is it going, have you moved a bunch of them yet?

      almost 6 years ago
  • Rthompson's Avatar

    Rthompson posted an update

    Update...after seeing dr for suspected uti, I was informed that instead of infection what I had was protein in urine. :( Referred to the 7th specialist to join my team of doctors. Saw nephrologist on Wednesday. She was concerned about why I had not been to see one sooner considering my left kidney is now atrophied. I can only imagine it is pretty bad as she asked if the dr, during my surgery, had removed kidney tissue when they removed the other pelvic organs. Guess CT shows it looks pretty bad. Anyway, I had ultrasound performed yesterday and am awaiting results of it today. I think she received them last night as the office called last night at 7:30 but I was not ready to deal with it. Not sure if I ever will be, but...

    2 Comments
    • carm's Avatar
      carm

      I think sometimes patience is a virtue and sometimes...it can be your worst enemy. I can understand why you would not wish to hear those results however, if you ignore it then you remain frozen in this moment and it doesn't sound like it is a place to reside in. Moving forward will always move you further from your fears and closer to your goal. Do what you need to calm that inner voice but then all here are the warriors of the highest valor and I can tell that you are right there with the best of them. I wish you the best of luck, Carm RN.

      about 6 years ago
    • kalindria's Avatar
      kalindria

      Just a hug. We do what we can and speak up when we think we're supposed to and still stuff happens. I will keep you in my thoughts and pray it's good news.

      about 6 years ago
  • Rthompson's Avatar

    Rthompson posted an update

    I had a wonderful Easter with my family yesterday. Although I am facing yet another medical "issue" as protein is now showing up in my urine requiring me to seek advice from a nephrologist day after tomorrow, I was able to set that aside and spend yet another holiday with those that matter most. Sometimes, it is very difficult for us to be able to focus on the positive when we are forever bombarded with the negative, or when the two keep alternating back and forth over and over and over again. I mean, just last month, I was posting that I had been spared the permanent insertion of nephro tubes and stents by positive results of renal function scan. Then the next month, I go in for what was a suspected UTI and come away discovering that while there was no infection this time ( a rarity in and of itself) it could be a little worse. How does one adapt to changes when changes are forever occurring? Simple, we don't. Well, at least I don't. I do not adapt I just accept them for what they are, hurdles in my race to the finish line. I jump them as they come up, one at a time ( or more if need be) and I continue my race. What else is there to do? I can dwell on them and stop living or I can accept them as part of my ordeal, deal with them the best I can and make the most of the time I was given. After all, I was not supposed to have it, so I have to make the best of it. Right? :)

    2 Comments
    • Lirasgirl33's Avatar
      Lirasgirl33

      Sending you tons of love and hugs my friend. Your words echo my own.

      about 6 years ago
    • GregP_WN's Avatar
      GregP_WN

      Make the best of what life gives you but try to make life give you better things! Good luck to you!

      about 6 years ago
  • Rthompson's Avatar

    Rthompson posted an update

    Just thought I would share some information I discovered today.
    So, today was my scheduled appt for my annual mammogram; however I am going to postpone for a month.

    Last year upon having my first scan, it was discovered that I have very dense breast tissue. The report I received following it indicated that with this tissue type, the results of standard mammos are not always reliable and can easily miss out on detecting the early stages of the disease. ( not like that is a new experience for me with other cancer)

    Today, after asking questions relating to my personal history with cancer and tissue issue as well as the fact that I have an extensive family history of not only cervical but also breast cancer, the nurse technician who was about to perform my scan informed me of the existence of a new scanning method which will be arriving at their hospital within the month and the reason for my postponement.

    Apparently, there is a new 3D imaging machine which when used in place of standard mammogram scanner, increases the chance of detecting abnormal cells in women with dense tissue by 40%. So, the option as it was given to me was to go ahead with scan as scheduled and wait until next year to do the 3D imaging...or wait a month to get one using this new method.

    Umm...does anyone really think that question required any mulling over? Of course not! I will be calling tomorrow to reschedule for next month.

    I do not know how new this technology is everywhere. I had read about it briefly in local paper and apparently my hospital is only the second in the surrounding areas to receive it so I am assuming it is very new. But, I wanted to pass along this information to any of you who may be in need of scheduling their annual exam and have ever been told you had questionable tissue or unclear scans or for those who simply want what appears to be the new and better scanning method.

    From what the tech informed me, this was not approved by insurances until very recently but now most are covering it 100% as the newly accepted preferred method of scanning. If insurance does not cover it, she said the cost is still minimal at $50 or less. Much cheaper than what most of us have to pay for an MRI or CT scan at hospital.

    Just thought I would share this new information with you all.
    Yes...MEN as well! You too need to be checked for Breast Cancer. While the ribbon may be "Pink" it is in now way a "girlie" disease. :)

    2 Comments
    • carm's Avatar
      carm

      RThompson,
      Good choice and best of luck to you, Carm RN.

      over 6 years ago
    • GregP_WN's Avatar
      GregP_WN

      Sounds like a smart choice, thanks for the information. I'm sure others might be asking some of these questions on their own.

      over 6 years ago
  • Rthompson's Avatar

    Rthompson posted an update

    I am very pleased to announce that i have now been registered to take part in my first Health and Wellness fair as a local chapter leader for a national cervical cancer group. I have also been asked to give a 20-30 minute presentation discussing HPV and its effects on women and its link to cancers. I am very excited to have the opportunity to share not only my own experiences but also spread awareness and education about two very important topics.

    3 Comments
    • Lirasgirl33's Avatar
      Lirasgirl33

      That is so great! It is so awesome that you have such an interest in educating and making people aware of this horrible disease. When will you be presenting?

      over 6 years ago
    • Rthompson's Avatar
      Rthompson

      Thank you. I have been doing this on line in support groups and forcing it upon my friends for so long (in a good way. bugging them to get those exams out of love :) ) that I figured it was time to take it to the next level. Just hoping my body keeps up with the mind and spirit. Sometimes they just do not seem to want to travel down the same path together.

      The Health and Wellness Fair is set to take place on 4/12. I just ordered my first batch of brochures and information pamphlets and Chapter Banner yesterday; so I guess it is official.

      Thanks for your support. :)

      over 6 years ago
    • GregP_WN's Avatar
      GregP_WN

      Good for you. I know I get a good feeling from talking to others about what I have been through and encouraging those that are still in the trenches with the fight. I speak for ACS at different events. Wishing you good luck in your presentation.

      over 6 years ago
  • Rthompson's Avatar

    Rthompson posted an update

    On a sadder note...I had my renal function scan today. It was not too promising. AT onset, the saline IV caused a good deal of kidney pressure, even with foley cath inserted into the stoma opening. This was not the worst, that came when they injected the lasix. My left kidney was having none of that. The pain was so sudden and overwhelming I forced them to stop so I could stand and relive pouch to ease pain and pressure. Sadly it did not work, so I completed final 10 min in tears. When I was finally able to get home I was dizzy and my heart was racing, bp reader indicated I was at 140 bpm. Knowing the treatment had caused frequent urination and diarhea I knew this was symptom of dehydration so I began increasing water intake. Within an hour, I began experiencing the severe muscle cramps once again despite having downed 45 oz in an hour. I called urologist to ask for muscle relaxer. At first his nurse stated his response was for me to try tylenol or other otc drug. Fortunately I had a cramp while on the phone with her and when she heard my agonizing screams dr was on phone asap. He told me to stop taking in water as this was overworking kidney and to sip slowly on gatorade. ( last week he had told me NOT to drink anything with potassium as this would cause kidneys to overwork but ok) He also said he could not prescribe medication as my kidneys could not filter them. So I could only take OTC meds. He said he would get scan results first thing tomorrow morning and that he did not think I could wait to get the stents and tubes inserted. So, it appears regardless of what this scan shows I am now confronted with the perm stents and tubes. I had held out hope when IR dr said that my creatnine levels were within normal limits, but for some reason, my kidneys are just not acting accordingly. Oh well, whatever we have to do is what we do. Right? Such is the life we lead.

    1 Comment
    • carm's Avatar
      carm

      I hope you feel better soon and you might want to ask your doctor for a transdermal pain patch to help with the pain. It wont have to pass thru your kidneys and it will help with the pain. Best of luck to you, Carm.

      over 6 years ago
  • Rthompson's Avatar

    Rthompson posted an update

    I was very excited to have been chosen to take part in the Cervical Cancer survey which was introduced to me through this group. I spent an hour and a half sharing my story with my interviewer and can only hope that in some way my experience can provide information for treatment options for future stage IV patients in the future. Thank you for all you do here in providing us help, but also for providing the means for us to help others.

    1 Comment
    • carm's Avatar
      carm

      Rthompson,
      We should be thanking you. Your participation in the survey will help many and you are so like everyone here on the site who give so much of yourself to help others, thank you.

      over 6 years ago
  • Rthompson's Avatar

    Rthompson posted an update

    Update on kidney issue...saw urologist today. Not too good. We had always known that the left kidney was pretty bad off, now it looks like the right one is as well. He scheduled me to go in today to have a stint/nephro tube inserted. This is now going to be a permanent set up. :( I will then have a renal scan to see if it is worth placing one in the left kidney as well. This is an attempt to save as much of both of them as possible. Right now he is not certain that the left is worth saving, but he says he will use any precautionary measure he can. He said it was more urgent to relieve swelling off of right asap. I guess it is a good thing that I have been involved with interventional radiology so frequently in the past. as they got me in for 12:30 today. So I am off to get my new "accessory." With tubes and bags in both front and back...just call me the "Borg."

    2 Comments
    • GregP_WN's Avatar
      GregP_WN

      Sorry you're having this trouble now, with everything else you've had. I hope it went well for you, how are you today?

      over 6 years ago
    • Rthompson's Avatar
      Rthompson

      Greg, thank you for your reply and concern. Today I am a little better than yesterday. I have accepted that what will be will be and as I know that as I adapted to my previous new "norm" I will adapt to this new version as well. I was overwhelmed yesterday when urologist laid that upon me. I had known from my follow up to scan and talking with oncologist that the tube would be necessary. Having had them numerous times in the past I was not overly upset by it. I have always known that one of my goals (among many) was to keep my kidney(s) functioning as well as possible for as long as possible I just had thought it would be a little bit longer than 2 years. Just as I had thought receiving the tube would be as it had been in the past, a few weeks or at its worst...6 months. When urologist told me it would be what I would be dealing with from now on, I kind of lost it. It is hard to think that I have not had to face cancer in over three years, but I remain on this steady path of decline. Like I told him, cancer I can face...this I can not. There is no treatment I can take, there is no drug to make it better, I feel powerless to be able to do anything and I HATE feeling out of control of things. But, a day later and having had time to come to terms I do know things could be much worse. If this is what I need to live with to "live" then so be it. I've been through worse..I think. Get back to me in about 6 months. :) Now, I just have to await the renal function scan for doctors to determine the full impact of everything. That is to be done next Thursday. So for now it is once again....wait and see.

      over 6 years ago
  • Rthompson's Avatar

    Rthompson posted an update

    Welcome 2014! I am looking forward to you being a far better one than your predecessor! (Should not be too hard) haha.

    Sadly, you are not starting off as great as I would like. But, hey... I guess that means there is nowhere to go but up. ( If only that were true. But, unfortunately for me, I know all too well that is definitely not the case)

    2 Comments
    • carm's Avatar
      carm

      I hope this year brings you much joy.

      over 6 years ago
    • GregP_WN's Avatar
      GregP_WN

      Wishing you the best year ever! Don't count it out yet, it just started.

      over 6 years ago
  • Rthompson's Avatar

    Rthompson posted an update

    When is self medicating the right thing to do? How about when dr will not return calls and you are faced with giving it a trynor risk spending your holiday in room 263, your home away from home?

    In Aug, I spent 10 days here on TPN when my gastric system shut down from an overly high TSH level. Apparently my endocrine dr had over prescribed my Methimazole for a case of hypothyroidism (or hyper, I can not keep them straight anymore, as they have gone back and forth repeatedly since February) This apparently caused my thyroid levels to get too high resulting in complete gastric shutdown. Since being discharged, he has altered my Levothyroxine gradually to get to correct dosage as levels cont to show no improvement.
    Well, symptoms began popping up several days ago...nausea, no appetite, vomitig when eating and then two days ago,severe stomach cramping. I pulled out trusty stethoscope and sure enough, all was quet on the gastric front. I called dr andleft message detailing problem. (more than once) I knew if I went to er, I would be admitted and that would mean only one thing, a lengthy hospital stay, meaning...xmas in rm 263. Ummm, no thank you!
    So, when he failed to return call, I solicited from friends on medication what standard dose was for levo. Apparently, standard was 125mcg, mine was only 75. So, yesterday I took a pill and a half.
    Almost immediately I noticed improvement. My bowels improved 150%. I regained lost energy. No nausea. No vomiting. And my gastric system...well, no longer silent. ;)
    Today has been even better!
    I know self medicating was not the best decision, but in this case...it appears to have been the right one. As does the decision to find a new endocrinologist. :)

    2 Comments
  • Rthompson's Avatar

    Rthompson posted an update

    News article I received commenting on the relationship between certain cancers and high sugar/fat diets. Wanted to share.

    http://www.cancercompass.com/cancer-news/article/45840.htm?c=NL20131113

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      Thanks for posting, we always like to see informative articles. This is a highly controversial subject.

      over 6 years ago