A big set back

A big setback

Sorry for the delay but I have encountered a few major setbacks unfortunately .

I did my chemo round 9 and it whipped me up pretty good . I literally felt I had been run over my a truck . I could barely make it from my bed to bathroom and back . I didn’t even really talk on the phone just no energy and short of breath . I felt like I was super lazy .

I went to my CT and MRI scan appointments at the Cross on September  8 . I had my CT and while I was waiting for the MRI the oncologist called me and said the radiologist had read my CT and both lungs were full of clots . They came and retrieved me from waiting room and took me to active treatment my o2 levels we’re only 80% in room air , no wonder I felt winded ! They gave me O2 ,blood thinners and sent me by ambulance to the UAH 

I received very good ,fast treatment in the ER and was soon transferred to the ICU . The next morning I went and had many of the clots removed with a new procedure never done at the UAH. I had quite the audience and they all were ooing and awing every time they sucked out a clot . I was there a few hours .I felt I had been trapped in a long episode of Dr pimple popper ! They even took pictures of the bucket of clots gross! 

I stayed in ICU for a week as they slowly weaned my oxygen from 90 % to 40 then I was transferred out to Gen Medicine . If my oxygen needs had gone any higher they would have intubated not what I would have wanted . The care and staff in the ICU were really great .

I was only on the general floor one night ,had a fall and a blood transfusion so was transferred to observation unit for a week . The blood thinners for the clot made my tumor bleeding more pronounced so it was a tricky balance . They inserted a inferior vena cava filter to catch and clots and took me off the blood thinners to try to stop the bleeding . 

Last Thursday they did ultra sound and Doppler of both legs to be sure there were no clots and none were there,Then on Friday afternoon my right leg blew up to at least twice it’s normal size and was a deep purple and hurt like ….,so back to ultra sound and discovered a huge clot from my ankle to above my hip . Back on the blood thinners so more bleeding  more transfusions 6 so far so thanks you blood donors ! 

My oncology surgeon says I am too risky to have my tumor removed due to damage to my heart from the lung clots and due to the several clots still in my lungs . He wants them to buy me time . So for now I am being supported by blood while they search out other options. I am off oxygen and not short of breath so that area is improving .

I am trying to keep my spirits high but finding it a challenge . I always thought if I was going to die from cancer I would get notice you know ‘it has spread you have. 6 months get your affairs in order ‘ but now I am just afraid at night that I won’t wake up . 

I am still trying to find reasons to be grateful and I am grateful that my CT showed no spread so the cancer is contained .

I am grateful for the DR and care staff 

I m grateful that My sister and Mom are coming for a visit from NS on Friday so it will be nice to see them . 

I am so grateful for my family and special friends who have been in to see me . I am especially grateful for my family for being  my advocate when I was to weak to be my own ! 

A lesson I learned and urge you to,share with anyone that you know that has cancer . That having cancer alone puts you at high risk for clots . It happens to so many people there is actually an out pt clinic at the UAH for clots with cancer patients . This information was never relayed to me by anyone either in person or in brochures . If I had know I would have gone to ER with my shortness of breath instead of assuming I was just super fatigued from chemo ! 

I’ll post again on the state of our health care at another time. 

Thanks again for all your kind wishes ,you have no idea how much I appreciate it !

Take care 

Susan

46 Responses

  2. Awe Susan. You have been through so much but I know you will continue to fight through this and beat it. I miss you so much and you are always on my mind and in my prayers.

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  3. Susan. You have been in my thoughts and prayers since you started this cancer journey. I was speaking with your mom a few days ago and she updated me on your problem with the clots. Thank God they were found. Nice to hear Robin and your mom are coming up for a visit, something for you to look forward to. I understand the grand kids had a great summer in Nova Scotia, they are growing so fast. Emily enjoyed herself as well I understand. Take care. From the Rock, Gerri Cook

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  4. Susan I’m so sorry it has been a rough ride for you. Like being on a roller coaster and not knowing what is around the next bend. I’m a phone call away and if you need anything you only need to call and it will be there for you. Sarah

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  6. Dear Susan. My heart is heavy reading your latest update. I have been looking for updates for awhile and hoping ‘no news was good news ‘. I am so sorry for all the problems you are having. Thankfully you find the strength to keep fighting. Please remember all your family and friends are praying for you. Love, Sheila

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  9. Hi Susan.
    I had been wondering where updates were, but now that I have read this one, I sure understand! Hearing you speak of the fear and loneliness in the night is so heartbreaking…you are strong with a capital S but sometimes it must be hard to dig a little deeper for fortitude.
    Know that we love you and pray for you. Enjoy your Mom and sis.

    Love
    Pamela

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  10. Oh Susan, I am so sorry you are going through all of this. It is one thing to be battling cancer but having to deal with blood clots is terrible. Thank goodness they had a procedure that could remove some of the clots from your lungs. It is wonderful news that your cancer is contained and you have the ongoing support of family and friends. Thank you for the update. I will keep you in my thoughts and prayers.

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  11. Susan you have been on my mind lately. I’m so sad for you having to deal with all this. I wish you all the best, love and prayers to you and also Ken and the rest of your family. Hugs , Barb

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  12. Thank you for update. You have been on my mind a lot lately and I was looking to see if I had missed an update. You have such a positive attitude even though you’ve been so much. My thoughts are wish you and know that so many of us are thinking of you often. Hugs

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  14. Your strength of character is truly amazing. I was wondering how you were doing, your experience sounds horrible, I hope from here on in, it only gets better. Having your family with you is super important and it is so great that your mom and sister are coming, enjoy your visit. I think of you often, stay strong.

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  15. Always thinking of you, even if it is from far away. Never knew about the blood clots either… but that is because you and I are baby people, Susan! Sending lots of my energy. – JVA

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    1. thanks Johnny
      They say the clots are due to both inflammation and the crazy way the cancer cells mutate and are all tangled up . My hematologist says it will be the next generation of DRS that will know this and warn patients
      Crazy eh ! I love looking at you pictures so please keep them coming
      Susan

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  16. What an ordeal you have been through. I admire your strength of spirit and wish you better times ahead! Thank you so much for sharing your experiences. It sure helps keep everything in perspective. I hope your mom and sister have a great visit with you.
    Sending hugs and good thoughts!

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  17. Oh Susan! You have been on my heart and on my mind. I wondered if I had missed the updates. I am so very sorry to hear of this setback. I am sending love and prayers.

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  18. On my! I dont know what to say at this point. Pretty Gramma you have to keep fighting. This has been such a long
    journey for you but lets be hopeful that you are coming to a turnaround now. I hate to see you having to deal with all of this. Try to be positive and dont give up. You can do this. Thinking of you and sending good vibes. XX F

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    1. Thanks Fern looks like I will be here at UAH for at least a month to heal before surgery . I would love to see you if you ever come out !
      Take care Susan

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  19. Susan, you continue to be in my thoughts as you go through this insidious journey. My heart hurts for you, to read about the set backs and I wish above everything that it was the worse of it, and you’re on the upswing now. You have been so kind to think of me and my family in our recent dark time. Please know we think of you also! Love to you. xoxo

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  20. Dear Susan
    I cannot imagine how difficult the struggle you have endured has been!
    You are so brave and so strong to be able to tackle all the challenges that have been put before you .
    I wish for you healing, health, strength and the conquering of this nasty disease.
    Your heart felt story is such a learning curve for all of us who can’t imagine the challenge you have taken on. So thank you for bravely sharing!
    We wish for you only better days ahead.
    Keep fighting, be strong,!
    We are sending all our love ! XOXO
    Sue and Brian

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  22. Susan, know you have been in my thoughts and prayers . I am so sorry to hear this .
    When you are feeling up to it , I would love to come and visit with you 💞

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  24. Dear Susan, I just came across your blog, your eloquent and honest description of your cancer journey is both inspiring and heart breaking. I cried and I laughed and I remembered your beautiful kind heart and wicked sense of humour. Thank you for your gift of vulnerability, you’ve helped me be a better caregiver.

    Reply

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