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Son diagnosed with PV. Sarcoma 8 years ago: Devastated mom
Blood Cancers & Disorders | Last Active: Sep 25 8:58am | Replies (15)Comment receiving replies
@loribmt yes. And thank you. This information is helpful for my mental health. I have PTSD from his Ewing’s sarcoma treatment. I quit my job and was with him for the entire year….one week in hospital, one week home, one week in hospital…. Etc. i was traumatized but somehow i stayed strong for him. I think that is why this is hurting so bad. I cry all day, don’t go to work, don’t eat…. Just stay in bed. It has done a number on me. I’m so scared.
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Oh goodness, @deedeekay. I wish I could reach through this computer to wrap you in a reassuring hug this morning. I’m so sorry this new health issue with your son has you reeling! You were so immersed in his cancer journey 8 years ago, it’s understandable to have all those emotions resurface. You’re terrified to re-live all of that and worried your son will be going all those treatments/side effects again.
If he is being diagnosed with PV, as I mentioned earlier, this should be absolutely nothing like his experience with Ewing’s sarcoma.
Treatment for PV is manageable with medications such as hydroxyurea. Yes, it is termed type of ‘chemo-drug’ but bears no resemblance to the intensive chemotherapy your son received for his sarcoma. This is a daily pill that is generally very well tolerated. The goal being to lower the amount of red blood cells in circulation.
There are other drugs such as Jakafi, or Besremi, which actually works to lower the JAK2 mutation involvement. As I mentioned earlier, PV is considered more of a very treatable ‘blood condition’. Your son won’t be in the hospital and no need to stop working. Basically, his life shouldn’t change much except for having to take a pill or possibly receive an injection every two weeks depending on the medication.
To be honest, I’m more concerned about you right now. You’re losing out on so much life…yours and your son’s, by being consumed with worry and fear, Truly, I appreciate what you’re going through. I’ve been a long term caregiver and the stress can be overwhelming. Even when you’ve had a break from the intensity, there is always the underlying feeling that ‘what if ‘we’ have to go through that again’…it’s emotionally draining!
I hope this isn’t overstepping, but do you have any other family or friends for support to talk with? Have you spoken with your son about what you’re feeling? Getting his perspective might be really helpful for you.
Would you consider seeking the advice of your family physician, a counselor or clergy to help talk you through your past trauma? I just want you to be able to see the light around you again.
Years ago I came across this little piece. It brought me immeasurable clarity. (Author unknown)
“Fear does not stop death. It stops life
And worrying does not take away tomorrow’s troubles.
It takes away today’s peace.”
Anytime you want to take, I’m here for you. We can work through this together. ☺️