Re-designing your life plans.

[Manpa]

So now the journey begins, we met with the specialist today and the diagnosis of Polycythemia Vera was confirmed by by the bone marrow biopsy and the JAK2 gene mutation tests. Ultrasound on Friday to check that the spleen is not overly enlarged and to set a baseline for future investigations
Starting today on a tablet form of chemotherapy which is taken everyday to help slow the bone marrow overproduction of red blood cells and to help scarring of the bone marrow. Red blood cells should make up under 45% of your blood volume, Lorraines is at 58% so it puts her at considerable risk of blood clots, strokes and heart attacks. In addition to the chemotherapy, low dose aspirin is to be taken daily, venesection of blood will continue weekly until the red blood cell levels stabilise and hopefully reduce, then maybe fortnightly or monthly thereafter.
This combined with Lorraines Parkinsons means she will be somewhat immunocompromised, so we need to jump on any illness or infection quickly.
We need to constantly monitor bloods on a monthly basis to ensure that there are no signs of myleofibrosis in the bone marrow or any signs of acute myeloid Leukemia.( a rare effect in 5% of Polycythemia patients)
The aspirin and chemotherapy will hopefully help to reduce her symptoms. The cancer is not curable but in his words can be managed to give a reasonable quality of life for hopefully an extended period.
Stay safe everyone and listen to what your body is telling you.
Cheers

 

[Mackka]

Hi Glenn, not often i am lost for words but no words can express my sincere hope that the medication works and Lorraine, yourself and family can continue to have a
long and happy life. Prayers always.
Mackka and Family

 

[Jaros]

We hope the medication and hospital visits go well for Lorraine. Keep strong both of you.
Jack/Carolyn.

 

[Manpa]

Maccka, we are in good hands, the specialist sees 6-10 people a year with PV. He has a great manner and it would appear he welcomes questions and answers in terms easily understood.
I think we have been fortunate to get the diagnosis as early as we have, maybe in someone with no other underlying illness or health problems they may have ignored the symptoms, putting fatigue down to life in general, the itchiness after showers to soap, water temp etc, .
Some patients show no symptoms, the cancer being picked up as part of a full blood screen in a general health check up.
Lorraine showed a few of the signs listed in my earlier posting and our doc was quick to order blood tests. We have been blessed with good children and now grandkids, lived a full and productive life surrounded by family and friends and enjoyed pretty good health until Lorraines Parkinsons diagnosis 11 years ago. We remain positive and will continue to enjoy life, maybe at a little slower pace and knowing that we are still far better off than many in our community.
Thank you for your thoughts and prayers.

 

[reefer]

I have deep respect for you in the face of the adversities that you are both so stoicly staring down mate. I am most respectful of the supporting role you are affording to your dear wife and I sincerely hope that you are both able to procure the absolute best hoped for outcomes, from the journey that you must take in relation to your wife's condition.My own supporting role in the face of my wife's dementia pales in to insignificence in comparison but we do for our loved one, what we know they would have done for us...and in fact still do for us,despite and in the face of their own suffering...It's called True Love...and those of us who are blessed with it know that it never dies.My very fondest Regards to you both...Ross and Robyn. :flowers:

 

[Manpa]

I feel for you Ross, dementia is bloody cruel and with it comes a whole range of problems that you as a loving partner must endure. My dear old mum is 91 and fortunately has all her marbles although she does sometimes find herself searching for a word or repeating a story.
Lorraines mum has dementia and is in residential care in the same facility as her husband (stroke) and there are many days she does not remember him, sadly with her dementia there is also some behavioural changes, anger being an emotion she was never prone to.

Your devotion to your wife certainly does not pale to insignificance in any way, shape or form to mine, as a loving life partner you have chosen the tougher of two roads and more power to you for the courage of your decision.
I have been asked how I am with all this and Ive always maintained Im ok, I am not suffering from anything other than caring and loving my wife. I try to be as positive as possible, as humorous as possible and as accomodating as possible.

My best wishes to you and Robyn in your continuing journey.

Should you ever wish to vent, feel free to give me a call anytime.

 

[reefer]

Geez!...I started out to express some words of positive support for you,Manpa...not really conscious of the need for some in return! Thanks mate....like you I just do what I can when I can.Even now...18mths down the track from her diagnosis,I am constantly adjusting to her condition as it progresses and it is not easy at times...but because of the un-shakeable love we have for each other, we find ways to laugh and live life to the best of our ability..come what may.
That's all we can do really.