Challenges Ahead...

emamei
emamei Member Posts: 146
I haven’t felt much like writing the last little while. I’ve been exhausted, in discomfort, and not sleeping well at all. I’ve had so much on my mind and have felt extremely emotional. I had my 18th radiation treatment on Friday. I also met with my psychiatrist at the cancer agency afterward. Her name is Donna and she’s amazing. I explained to Donna that I’ve been having some pretty disturbing nightmares over the last month or so. I’ve been dreaming about cancer recurrence, having to undergo chemo all over again, being told I’m terminal, etc. The nightmares are quite vivid and quite realistic. Donna explained that many cancer patients experience such nightmares, especially as they reach the end of active treatment. I went on to explain that I’m extremely anxious as I have a mammogram coming up soon and I’m terrified something will be found. Donna agreed with me that this whole year of my cancer journey has been extremely traumatizing. Everything I’ve experienced and gone through has been beyond intense. I feel lost these days. Donna and I discussed how life and living must be re-learned after cancer. Every aspect of life and living must now be lived mindfully; taking set time each day to rest, changing diet and physical activity, how I handle stress and stressful situations, taking time to practice relaxation and meditation, and taking control of my own health care again. My primary focus in the months ahead is to regain my health and strength, physically, mentally and emotionally.

It’s not an easy transition for cancer patients to go from being so closely monitored, scheduled, treated, checked upon, on a weekly basis to all of sudden the ride stops and the monitoring still happens, however, it will go from daily and weekly, to once every three to six months.

I told Donna I’m terrified of recurrence. For me, the next two to three years will be a very crucial time as far as recurrence is concerned. For women like me who are Triple Negative, the highest rate of recurrence happens in the first two to three years post-treatment. I explained I feel like I will be living each day like I have to look over shoulder. As I’ve written many times before, there are no guarantees in this journey. I’m not being negative or pessimistic; I’m being realistic and very aware of what I have gone through and what lies ahead of me.

I now live with constant reminders of the trauma that I have endured in this journey, severe scars both physical and emotional, nerve damage, mobility issues, ongoing physical pain, chemo brain, headaches and Lymphadema.

The Lymphadema is a permanent souvenir from this journey and one I’d rather not have. It has become worsened with the radiation treatments and the summer heat. I’ve begun the manual lymphatic drainage massage and it is extremely helpful and effective, but will take time to get the Lymphadema to a manageable level. The treatments will be costing us a small fortune every month; between $1,200 and $1,500 each month. This is all so incredibly stressful for us financially, emotionally and for me psychologically.

By the middle of August I will hopefully have the information regarding the new extended health company that Scott’s employer is switching to and hopefully can get them to pay for the rental or purchase of the Lympha-Press machine so I can use it at home in combination with the massage treatments.

I've also missed my three girls terribly this week. We picked them up from Uma and Grandpa's this morning and they've been telling us all about their week at the horse ranch. I'm also feeling quite emotional as my eldest will only be home with us for 10 days and then she's off to Europe with her Uma and Grandpa for three and half weeks. I will miss her so incredibly much that the thought of her being away so long makes my heart ache. She is so looking forward to going and is thrilled that she will have her Uma and Grandpa to herself for the duration.

It's hard to come to terms with the reality that she is a decade old already. Our middle daughter will be turning 9 on August 16 and our littlest one is seven and half. I love them so very much and they make me proud each day. They are all beautiful, smart, loving, giving, compassionate, intelligent, intuitive and caring girls. In less than six weeks they will all be returning to school into grades 5, 4, and 2 respectively.

Each time I look at them or think of them, I say to myself - I must live for them, they need me.

Thanks for letting me vent...

Comments

  • joannstar
    joannstar Member Posts: 403 Member
    I so understand what
    you are feeling. I am coming up to my 1 year anniversary from my 2nd lumpectomy (Triple Negative, Stage 1, IDC). I had a mammo, ultrasound and bloodwork last week. I've been called back for another mammo and ultrasound (the other breast this time) and more bloodwork (liver enzymes "slightly" elevated). My tumor markers were down and I didn't even have a chance to celebrate. I've felt frustrated--I want this over. Treatment(6 rounds of chemo and 33 rads) ended on 4/1/11. I hate the idea of holding my breath until I pass the 3 year mark--2 more years...
    People tell me to be positive--it is not that I am negative, I'm just scared.
    I wish you luck in your journey.
    JoAnn
  • butterflylvr
    butterflylvr Member Posts: 944
    Maria,
    You write so beautifully. You're last sentence sums it all up, that is why you must continue to live each and every day to it's fullest until a ripe old age of spoiling those grand babies.

    Hugs,
    Lorrie
  • emamei
    emamei Member Posts: 146
    joannstar said:

    I so understand what
    you are feeling. I am coming up to my 1 year anniversary from my 2nd lumpectomy (Triple Negative, Stage 1, IDC). I had a mammo, ultrasound and bloodwork last week. I've been called back for another mammo and ultrasound (the other breast this time) and more bloodwork (liver enzymes "slightly" elevated). My tumor markers were down and I didn't even have a chance to celebrate. I've felt frustrated--I want this over. Treatment(6 rounds of chemo and 33 rads) ended on 4/1/11. I hate the idea of holding my breath until I pass the 3 year mark--2 more years...
    People tell me to be positive--it is not that I am negative, I'm just scared.
    I wish you luck in your journey.
    JoAnn

    Thanks so much JoAnn
    It helps so much knowing I'm not the only feeling the things I'm feeling.
  • emamei
    emamei Member Posts: 146
    joannstar said:

    I so understand what
    you are feeling. I am coming up to my 1 year anniversary from my 2nd lumpectomy (Triple Negative, Stage 1, IDC). I had a mammo, ultrasound and bloodwork last week. I've been called back for another mammo and ultrasound (the other breast this time) and more bloodwork (liver enzymes "slightly" elevated). My tumor markers were down and I didn't even have a chance to celebrate. I've felt frustrated--I want this over. Treatment(6 rounds of chemo and 33 rads) ended on 4/1/11. I hate the idea of holding my breath until I pass the 3 year mark--2 more years...
    People tell me to be positive--it is not that I am negative, I'm just scared.
    I wish you luck in your journey.
    JoAnn

    Thanks so much JoAnn
    It helps so much knowing I'm not the only feeling the things I'm feeling.
  • emamei
    emamei Member Posts: 146

    Maria,
    You write so beautifully. You're last sentence sums it all up, that is why you must continue to live each and every day to it's fullest until a ripe old age of spoiling those grand babies.

    Hugs,
    Lorrie

    Thanks so much Lorrie
    My girls are my life!
  • New Flower
    New Flower Member Posts: 4,294
    emamei said:

    Thanks so much Lorrie
    My girls are my life!

    Hi Maria
    it sounds like Donna is a good doctor, and a very understanding friend. I am glad you find her, she will be helpful for sure. Please stay positive, we understand your challenges as many of us have had similar complications. They are not fun, manageable for sure.
    Please keep writing and posting
    Hugs
    New Flower
  • dbhadra
    dbhadra Member Posts: 344 Member

    Hi Maria
    it sounds like Donna is a good doctor, and a very understanding friend. I am glad you find her, she will be helpful for sure. Please stay positive, we understand your challenges as many of us have had similar complications. They are not fun, manageable for sure.
    Please keep writing and posting
    Hugs
    New Flower

    So can relate to what you are going through
    I have been a mental and emotional wreck since my surgery and pathology report and be ing told that I need more chemo along with my radiation. While I was in active treatment, I was doing fine, but a tarted losing it big time during the lulls betw een chemo and surgery, and now between surgery and radiation.

    It sounds like you've found a great therapist. I'm meeting with an oncology therapist next week, also taking Xanax prescribed by my oncologist and Paxil prescribed by my family doctor. I am just trying to get through one day at a time and hope with time my anxiety and depression will lessen.

    It's only been three weeks since my surgery so I am trying to be very gentle with myself but part of me is so impatient to just feel better already! I also hate the idea of holding my breath for the next two to three years wondering about reoccurrence . I have inflammatory breast cancer which also if it reoccurs tends to reoccurs within two to three years. But I need to find ways to cope with those fears as it has gotten to the point where I have been getting overwhelmed and feeling unable to cope with day to day activities. Hence the medication and therapy as well as yoga, meditation and walking! Whatever it take!

    Wishing you peace,
    Laura
  • laurissa
    laurissa Member Posts: 773
    Hi
    We all know exactly what you're feeling. Recurrance is always lurking around the corner. I'm also afraid my daughters will lose me, they are 18 and 21. Not little like yours but still too young. My oldest just went to Spain to live with a host family for a month and I miss her and hope nothing bad happens while she's gone. I don't want to mess up this trip for her. I was first dx in Sept 09 and afraid its returned. I'll find out today. Stay strong. Are you on anti depressants? Mine didn't really help. I just take an anxiety pill Xanax, it takes the edge off for awhile.
  • skipper54
    skipper54 Member Posts: 936 Member
    laurissa said:

    Hi
    We all know exactly what you're feeling. Recurrance is always lurking around the corner. I'm also afraid my daughters will lose me, they are 18 and 21. Not little like yours but still too young. My oldest just went to Spain to live with a host family for a month and I miss her and hope nothing bad happens while she's gone. I don't want to mess up this trip for her. I was first dx in Sept 09 and afraid its returned. I'll find out today. Stay strong. Are you on anti depressants? Mine didn't really help. I just take an anxiety pill Xanax, it takes the edge off for awhile.

    Donna sounds wonderful!
    Glad you found her!!! We all live with that scarey possibility of reoccurance and it's no fun. I'll keep you in my prayers, for peace, and for health. Vent here anytime you need to.
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member

    Hi Maria
    it sounds like Donna is a good doctor, and a very understanding friend. I am glad you find her, she will be helpful for sure. Please stay positive, we understand your challenges as many of us have had similar complications. They are not fun, manageable for sure.
    Please keep writing and posting
    Hugs
    New Flower

    New Flower is right, try to
    New Flower is right, try to stay positive and take it one day at a time. Sending prayers and hugs to you!


    Jan