• nicki0920's Avatar

    nicki0920 posted an update

    I'm happy to report that my mother is doing well after heart bypass surgery. She was moved to a rehab facility on Thursday. The place is gorgeous and the staff treat her so well. She even likes the food. I'm relieved that she is in such a good place as I go into my 3rd chemo next week. Knowing that she is safe and well cared for while I'm not at my best takes a load off of my mind.

    I had a scan last week. I wish that I could say my results were as good as mom. My spleen is not shrinking. The doctor doesn't feel it will shrink any further. He's recommending we continue with the next two Treanda/Rituxan treatments but doesn't believe it will do much other than POSSIBLY reduce the time between now and when we have to treat again. I will inquire about treatment with a radioactive monoclonal immunotherapy on Monday. I didn't have my wits about me when he gave me the news this week. I hate to stop when my spleen is not back to "normal" size only to be fighting this battle again in a year or two.

    4 Comments
    • nicki0920's Avatar
      nicki0920

      I hope he is receptive to the idea. It feels like the rituxan and treanda have done little good. I hate to stop not knowing what we might have done now.

      almost 8 years ago
    • GregP_WN's Avatar
      GregP_WN

      Good news on your Mom and I wish you the best in your Apt. today. Maybe they can find you a treatment that will do wonders for you.

      almost 8 years ago
    • DJS's Avatar
      DJS

      So glad to hear about your mom! I've been watching to see how everything is going. You two have really been put through the mill with this.

      Not so thrilled to hear about your own treatment. At least you know you did the best you could to find the right treatment and the best doctor available to you in your area.

      I'm with acshipway -- I am really interested to know what your doc says about the monoclonal immunotherapy. Is it in widespread use yet? Are insurance companies paying for it? I'm asking because one form (radiolabeled antibodies) has been found to be particularly successful fighting the type of cancer I have, but I didn't know about it until I was more than halfway through chemo. I've got a case of the "What If's."

      almost 8 years ago
  • nicki0920's Avatar

    nicki0920 posted an update

    I love the people I work with so much! There are around 80 people in the office now. While the company has grown rapidly and some of the changes in recent months may not have all been pleasant, I see that we are still a big family. There are a lot of new faces in the office but everyone abides by one of the company's core values - no jerks allowed. One of the things that the founder of the company was always proud to tell everyone he met is that we are all family at this company. He passed away two years ago from soft tissue sarcoma. He was truly a great man and I miss him terribly. It broke my heart to see him waste away but I was thankful for every minute that I spent with him before he passed.

    Everyone at work knows that I am leaving on Sunday for a second opinion at Mayo Clinic. I've made no effort to hide my diagnosis from anyone and word has spread throughout the office. I don't discuss how I feel or what I'm going through unless someone asks. I don't want to be the poor little cancer girl but if someone has questions, I'm willing to share whatever knowledge I may have to offer (limited as that might be).

    Two of the ladies got together and decided to pass around a card for me. They gave me the card today. So many people from the office signed the card with such touching messages of encouragement. Many also slipped a little cash inside as well. The girls took some of the money and bought me couple of night gowns, a robe and a pair of slippers for my trip. The rest was left as cash in the card. These wonderful people gave me over $300 to help with expenses while I'm away.

    I truly appreciate the money. It is sorely needed at this time. The card means more to me than any amount of money though. The card and the heartfelt notes are something that I will keep with me at all times. So many people signed it that they ran out of room on the inside of the card and had to move to the back. Anytime I feel blue or overwhelmed, I'll pull out the card to remind me that I'm not alone and these people love and respect me.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      What a sweet thing for the office to do for you. I hope your trip has gone well. We look forward to hearing from you.

      about 8 years ago
  • nicki0920's Avatar

    nicki0920 posted an update

    Third infusion of Rituxan is finished. Only 3 to go. I broke the first rule of Rituxan. No, it isn't "don't talk about Rituxan". It is don't start treatment when stressed out of your mind from work. I hurt so bad tonight. Every muscle in my body aches. I'm weak as a kitten too. This is by far the worst I've felt so far.

    To add insult to injury, I don't really believe the treatment is working. My spleen is still enlarged and hurts terribly unless I have on a fentanyl patch. I'm regretting not going with a more aggressive treatment. I wish I had insisted on treanda/rituxan instead of jumping on board with rituxan since it was "easier". I feel like I'll go through six weekly treatments and have nothing to show for it except for doctor and infusion bills.

    6 Comments
    • nicki0920's Avatar
      nicki0920

      LOL, Dan. You are probably learning that I have a sense of humor like a guy by now. I got a good laugh at your closing.

      I'm going to talk to my current oncologist. If the discussion doesn't go as I want, I'm definitely going for a third opinion. MD Anderson had crossed my mind already. I'm not really familiar with University of Nebraska. MD Anderson doesn't sound so great this time of year. I sweat into a puddle in Louisville, KY. I'd probably burst into flames in TX in July. I'm assuming U of N is in Omaha?

      Didn't I read on your profile that you live in Paris, TN? If so, I made a lot of trips to your town in the early 90's. I went to school at Murray State, a dry county. Your town was the closest place to get beer. We had to go to Puryear, TN for hard liquor. Small world, huh.

      about 8 years ago
    • dan7264's Avatar
      dan7264

      I live outside of Kansas City, Missouri (we pronounce Missouri in this part of the country during summer as Misery) and we don't have any dry counties in our state and you can buy beer on Sundays.

      University of Nebraska works closely with MD Anderson on clinical trials. They have one of the leading authorities on lymphoma in the country if not the world in doctor Julie Vose. We had the privilege of actually getting to meet with her as our second opinion. Pretty cool. My cancer doctor here knew her and set it up for us. How awesome is that?

      about 8 years ago
    • GregP_WN's Avatar
      GregP_WN

      I always make it a point to tell the doctors everything that I am feeling, or think that is going on, or what I am afraid might NOT be going on. I leave nothing for them to guess about when it comes to what they are doing to me and giving the feedback. So let it out on them if you think it's not working. I hope it is though.

      about 8 years ago
  • nicki0920's Avatar

    nicki0920 posted an update

    I hope this gives someone a laugh even if it is at my expense.

    I ran out of gas on my way home tonight. No biggie. I grabbed the gas can from the trunk and strolled 3 blocks to get some gas.

    I got back to my car and emptied the can into the tank. I was so proud of myself for doing this and not even spilling the gas.

    I got in the car and turned the key. All I got was clicking. The stinking battery went flat because I left the flashers on when I went to get gas so I had to end up calling roadside assistance anyway.

    The best part? My car gave up the ghost in front of the seediest gay bar in town which happens to be less than 200 feet from a "gentlemen's club" and two blocks from the local homeless shelter.

    I had the pleasure of standing on the corner in front of the gay bar and watching a couple of homeless men passionately argue with thin air while others stopped and asked for money and cigarettes, neither of which I had.

    I took away three valuable lessons tonight. Don't procrastinate on getting gas when the tank is low. Don't leave the flashers blinking while you go get fuel if you did procrastinate. Lastly, No matter how tired you are, don't sit on the landscaping blocks in front of the gay bar because they have an incredibly strong odor of urine.

    One last thing I learned was not to text your friend about your experience because she will not offer sympathy. She will laugh so hard that she nearly wets herself.

    4 Comments
    • acshipway's Avatar
      acshipway

      Well, at least you had some unusual people watching to help you pass the time while waiting for roadside assist!

      about 8 years ago
    • nicki0920's Avatar
      nicki0920

      Oh yes it was a wide and varied collection of people to watch. That was prime real estate if you wanted to see some oddities

      about 8 years ago
    • dan7264's Avatar
      dan7264

      I certainly could not top that story even if I made it up. Too funny!

      about 8 years ago
  • nicki0920's Avatar

    nicki0920 posted an update

    Saw my second opinion oncologist today who confirmed splenic marginal zone lymphoma. Good news is that he wants to treat with Rituxan (no chemo) once a week for six weeks and then once every 8 weeks for two years. I'm praying it shrinks my spleen and I can avoid chemo completely with no splenectomy.

    1 Comment
    • GregP_WN's Avatar
      GregP_WN

      I hope that works out well for you.

      about 8 years ago