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My New Journey

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  • My New Journey

    On June 4, 2014, I got a phone call that changed my life forever. It gave me the answers that I had been seeking for over a year. A time that I shuttled from one specialist to another trying to find out what was causing my exhaustion, my abdominal pain, random fevers, swollen lymph nodes in my abdomen and night sweats. The obvious choice was lymphoma but every doctor immediately dismissed that once they looked at my blood work, which was picture perfect. I am fairly certain that, at one point or another, I had almost every non-invasive diagnostic test available. Finally after nothing significant had come up and my symptoms were getting worse, I was referred to a surgeon to have the lymph nodes in the my abdomen biopsied. His guess was a fungal infection in the lymph nodes. He was wrong, too.

    The call came late in the afternoon, the day after the biopsy. It was unexpected because the surgeon had said that they would not have the results back for several days. My oncologist/hematologist, who had promised me that it was not lymphoma, started off by saying she was sorry but she had been wrong. It was Follicular Non Hodgkin's lymphoma, a very slow growing and treatable but incurable form of cancer. I was amazed at how calm I was while talking to her. We made an appointment for the next day, I hung up and broke down. After a nice cry, I started researching it. If you are going to have cancer of the lymph nodes, there are worse ones to have.

    At 47, I was starting down a scary and unfamiliar path. One full of twists, turns and hidden pits. Looking back, one of my thoughts is how fortunate I was. I wasn't working at the time. I had stopped working when my mom became sick and needed help and never went back. I had and have great health insurance. I live in an area that has the worlds greatest cancer facilities. And my husband was there to help. I also had my two dogs, Arty and Daisy, to share all my fears and tears with.

    This journal is not going to be just be about cancer but it is now significant part of my life now. I find talking about it makes it less scary and laughing at it makes it my bitch. I am making some big changes in my life shortly. In some ways my diagnosis was a blessing and there are things related to it that I am grateful for. I now try to treasure each moment, even the sucky ones. The sucky ones just make me stronger and more determined to regain my health.

    Today, my chemo is completed and my last PET scan showed no signs of active cancer. I am on a maintenance dose of a drug called Rituxan, which will greatly increase my odds of having a remission of five years or longer. The side effects suck but I am only getting it every eight weeks now. I was getting it and a chemo drug called Treanda, every four weeks during active treatment. I have met people with FNHL that have had remissions that have lasted 10-30 years. At this time, for my stage of the disease, there is no cure. I am stage 3. FNHL staging is a little different than other cancers. Stage 3 just means that it is both below and above the diaphragm, for me that means my abdomen, underarms and neck, but not in my bone marrow.

    The one thing I am not happy about: following my last infusion, I had to stop my tidying!! I had been purging my house of all things that do not bring me joy. I am just now starting to get back into it. I never realized how much stuff I had and how little of it brought me true happiness. That ugly painting my SIL brought back from one her trips? Gone! All my suits that no longer fit? Gone! That one was tough because none of my suits fit any more and how can one be an attorney without her suits?!?

    I look forward to sharing the rest of my exciting new journey as it unfolds.

    Thank you Badgergirl for encouraging me to start this journal!
    Last edited by vh67; 02-27-2015, 05:03 PM.

  • #2
    Whoop whoop. and she's back, coming on strong!
    I like badgers, books and booze, more or less in that order.

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    • #3
      So glad to see your new journal! Thanks for sharing your story, I'm sure others will benefit from your experience and hopefully it will be helpful to you.
      My journal - The Walrus: http://www.marksdailyapple.com/forum/thread108103.html

      Be silly, be honest, be kind. ~ Ralph Waldo Emerson

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      • #4
        Thank you ladies!

        I started working out at a gym a few weeks ago. I just bought some new workout clothes that actually fit and wore them for the first time today. This old man that I have exchanged pleasantries with in the past and thought was sweet, stared at my ass the whole time. Subtlety is not a skill he possesses. But I guess the good news is lifting heavy (for me) things is working!

        I had to add that I made DD's chili and it is ding dong! (I hope I used that properly). Super yummy! But I just used Serrano chilies.
        Last edited by vh67; 02-27-2015, 06:30 PM.

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        • #5
          Looking forward to reading more

          thanks for sharing with us.
          Music of the day/week/month/whatever:

          K.A.A.N. - L.T.N. https://www.youtube.com/watch?v=kWocmse1Ef4

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          • #6
            It's great to have you back VH!

            I just made DD's chili tonight and it was a big hit around here too!
            Life is death. We all take turns. It's sacred to eat during our turn and be eaten when our turn is over. RichMahogany.

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            • #7
              It is good to see everyone stopping by!

              I am so excited today! I am going to meet a wonderful friend for lunch. We haven't seen each other in three years, since I moved 90 miles away but we text almost every day. We kept meaning to meet up but life happens and we never did. We are meeting half way and I can't wait! Her only fault is that she is vegan :-) but she has the kindest soul. We are meeting at a Thai/Vietnamese restaurant so we will both be happy. We met by chance , on the street, when I moved into her neighborhood 15 years ago and we hit it off immediately. She was one of those people I just clicked with and we have always been there for each other. Her youngest just turned 18 and she is entering a new chapter in her life as well. I don't feel my age until I see how much my friend's kids have grown.

              I love working out! I now have visible muscles in my forearms. I am sitting here flexing them! I managed to do the elliptical cross trainer almost all the way through chemo but I have noticed such a positive difference since adding weights. I am not sure yet if it is a good thing but it has also stimulated my appetite. I haven't lost any weight since I started with the weights but have lost a couple of inches, which is more important.

              I had gotten used to eating without keeping too much track because during chemo I was limited to what didn't make me gag or burn my mouth. I had developed a lot of food aversions so there were days I had just fruit and fish. That was the first time in my life a doctor told me to stop losing weight. I guess it is time to start tracking again since I still have some weight I need to lose. I can't wait until more fruits are in season. I am so spoiled in this part of Northern Cal because the time I can't find locally grown fruits is pretty short and local vegetables are always available.

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              • #8
                Had an amazing lunch with my friend yesterday! The most exciting news is she recently started eating chicken and fish again!! She has gone full paleo, no grains and no dairy. We had talked about it a lot in the past and she had been feeling really poorly recently so she decided to make the jump. She said she is amazed at how much better she feels and how all of the health problems she developed while being vegan went away rather quickly. She will probably never eat furry animals but that is ok. More for me!

                Today the weather is beautiful, warm and sunny but all I can think of is how much I want it to rain! I am going to have to start watering soon if we don't get some. I wouldn't worry so much about it if we weren't getting the house ready to sell in May but dead shrubs are not pretty!

                I have mentioned it in other postings but my husband and I have seperated and are starting the process of dividing our stuff. We are both pretty practical and have decided to stay in this house together until we get it on the market. Housing prices are so high here it made sense and this house is big enough that we each have our own space. Plus he is still hoping I will change my mind. I don't think that is likely and have told him that. My plan is to move back east, somewhere with a much more reasonable cost of living once things are sorted out here. I should be able to buy a nice house with my share of the profits from this house just about anywhere else outside of California.

                Ending our 20 year marriage was a hard decision and I won't bore anyone with the details because there are two sides to every story and the truth lies some where in between. I will give one piece of advice though: If you are not going to be completely honest with your spouse about something, shred the written evidence of this dishonesty at work, don't bring it home and place in the shred basket for your spouse to shred for you. That is lazy and stupid!

                Today is going to another exciting day of sorting, yard work and the gym. And cooking.

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                • #9
                  I am thinking you are smart and proactive.
                  I like badgers, books and booze, more or less in that order.

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                  • #10
                    Great news on the friend! I have a friend like that, although I hope your friend is not quite as crazy mine. I always call her (privately) a junkitarian, because that is all she eats. I'm glad your friend is feeling better and on the path to good health.

                    If you're going to divorce, the civilized way is the way, as you have figured out. Sometimes it seems like people actually want to get found out, that seems to be the only explanation! Wishing for a speedy resolution.
                    My journal - The Walrus: http://www.marksdailyapple.com/forum/thread108103.html

                    Be silly, be honest, be kind. ~ Ralph Waldo Emerson

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                    • #11
                      My friend had short periods were she was really healthy about what she ate but longer periods where a bag of corn chips and salsa would be a meal. As her kids got older and ate at home less, she became more of a Junkatarian. I am really excited for her because she is entering a new stage in her life too now that her youngest just turned 18.

                      When the husband and I first started talking about this we both agreed no separate attorneys. We both rather the other get the money that we would pay an attorney. We are going to use a mediation divorce service to work out my spousal support because we have already butted heads on that. They will also file the paperwork. Everything else is pretty cut and dried. California is a community property state, which makes things easy. We both came into this marriage poor so little to none separate property to worry about. I can't work at this point and it is unlikely I will ever practice law again unless this brain fog caused by my chemo improves significantly. Plus, I am not sure I want the stress of being a litigator again.

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                      • #12
                        Let's hope the brain fog lifts! Have you thought of another career? I can see why you wouldn't want the stress of being a litigator.
                        My journal - The Walrus: http://www.marksdailyapple.com/forum/thread108103.html

                        Be silly, be honest, be kind. ~ Ralph Waldo Emerson

                        Comment


                        • #13
                          Glad you and UF enjoyed the chilli V, shame about the divorce, but glad to see your positive outlook and optimism, and the ding dong was spot on....

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                          • #14
                            DD, that chili was definitely a do again! I will probably try to man up and use at least one scotch bonnet chili next time. And I am happy that I used ding dong right!

                            The brain fog or Chemo Brain as it is lamely known as is getting better. I can do simple math in my head again. I still have problems with more complicated math, names and immediate short term memory. I can't tell you how many times I have gone to write something down to remember it later, only to have forgotten what I was going to write down. It would be funny if it wasn't so frustrating. I have a little idea of what people in the early stages of alzheimers feel like. I do memory games all the time to try and improve it. The doctor said it will go away on its own but I hate knowing that I know what I want to say and not being able to get the words out. Husband gets impatient with me sometimes because there are pauses when I talk, which makes it worse. My friend this weekend said she did not even notice it so it may not be as bad as I fear. Or she was being kind. But I think she would have been honest if she noticed it. It has taught me to be more patient when talking to others and for that I should be grateful. But is still annoys me!

                            I am not sure what I want to do. I have a lot of professional certificates and designations on top of my degrees. One of the companies I worked for believed in continuing education and paid for me to learn all sorts of things, even if they were not related to job I was doing at the time. I was working as a financial planner when I quit to care for my mom and was preparing to become a Certified Financial Planner. Two of my other professional designations counted toward the course work, I just needed to take the test and complete a few more hours of practical experience. I love the financial planning part since I am really good at numbers and investing but hated the marketing and sales. I have a friend that I have been talking to about doing some of his backroom work while he focused on the marketing and sales but we will see. He may need someone willing to work far more hours than I may be able to. It might be fun if it works out.

                            I was also taking classes to become a silversmith before I got too sick to be able to sit through an all day class. I would love to become a certified bench jeweler. I really am not sure what I want to do. I have lots and lots of choices and there is no rush. My oncologist does not want me to go back to work until my maintenance treatments are done in about 22 months because I am immuno-compromised. I am that crazy OCD person you see out in the real world that is always using hand sanitizer, avoiding germy children and wiping down everything before I touch it. I get blood work pretty regularly. When my white blood cell count goes too low, I avoid most public places and I am not suppose to use public transit or fly. I feel like I need a bubble sometimes.

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                            • #15
                              You reminded me. Another infamous moment with my mother...

                              I was getting very badly bullied at school (I was about 11 at the time). She told me to visualise I was in a pink bubble of love that would protect me.

                              Er... no, Mum, that didn't work. (Mind you, her overhearing said bullying - they were discussing knocking me over to see if my shunt would break - chasing the perpetrators down the street and giving them a total bollocking did improve matters slightly.)

                              Years and years later, I made the mistake of telling husband this tale. He *still* teases me about the pink bubble of love.
                              Last edited by badgergirl; 03-02-2015, 01:55 PM.
                              I like badgers, books and booze, more or less in that order.

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