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May 27, 2018 · We are so much more than our disease.... in MAC & Bronchiectasis

What's everyone got planned for Memorial Day weekend? I finished chemo last month and we are taking a long-postponed trip. We're visiting the Washington DC/Maryland/Virginia for a week. I'm not strong enough to do much walking – and DC is a walking city — but we've been here many times and so some places are easier for me to get to than others. Memorial Day is special in Washington DC.

Dec 22, 2017 · I Don't Want to Talk About my Cancer During the Holidays in Cancer Education Center

jshdma and others –

I’ve learned that with a cancer diagnosis, a positive support system is crucial! I have a circle of friends and didn’t want them to learn from someone other than me about what happened to me. I am rather private about things like this and while I don’t need to expound on my situation to most people, I have learned a ton about limitations, human frailties, and reaching out to others who offer support and help. For several weeks after surgery, I was unable to drive or do much of anything – an anathema for me who was high energy and independent. And I cannot drive each week that I have chemo. Friends have reached out and offered to take the load off my dear husband when he is unavailable.

But as for others who ask about my health, I have the usual answer that I am “OK”. Before a cancer diagnosis, I was ‘Great’ or ‘Just Fine’ …. but obviously looking at me I am somewhat a shell of what I was. I don’t feel the need to say anything more than that, especially to people whom I feel don’t have my interest at heart. Although by opening myself up to some others I know a little bit, I have met a handful of other cancer survivors – very special people – who have commiserated, offered constructive advice, and truly enriched this awful experience. It’s those other people that I can do without! But now I feel I can be all right with just saying I’m “OK” and let it go at that, even with relatives over the holidays, if I don’t feel like discussing things. Nice to be able to do that.

Dec 21, 2017 · I Don't Want to Talk About my Cancer During the Holidays in Cancer Education Center

jshdma, with cancer it’s a different situation and difficult to avoid people’s questions since one’s life is totally disrupted — especially if chemo is involved. Obviously friends and family may ask about severe weight loss and what’s happened to your hair, etc.

Dec 21, 2017 · I Don't Want to Talk About my Cancer During the Holidays in Cancer Education Center

Thanks jshdma. I’m new to the cancer diagnosis and am going to follow how you handle this – by being very select in who I reveal things to. Thank you! Guess it didn’t dawn on me that I had an option, I merely briefly answered people’s questions but am sure tired of it … those who are cancer survivors seem to have a different approach in what they ask me and how they ask it. Guess it’s the old adage about ‘been there’.

Oct 3, 2017 · Remembering KateMN - losing a virtual friend hurts too in MAC & Bronchiectasis

Hello Colleen and everyone,
I took a reprieve from this web board for some months (not due to health reasons).
Ended up having unexpected surgery last week not connected to my lungs or NTM. Upon getting home from hospital, I got a PM from a wonderful person on this blog, telling me about Katherine. Devastating! It will take me awhile to get over this. Katherine was such a unique lady, a real force for all of us taking responsibility for our own care & educating ourselves. I cherish the time I knew her.
Peace and blessings to all.

Jul 26, 2017 · MAI drug resistant?? in MAC & Bronchiectasis

@becky33 – 7 months is not a very long time on the 3 drugs — some determinants for how long it may take to improve are:
1) the extent of your NTM/MAI in your lungs. How disbursed is the disease – one lung or both? What are the extent of your symptoms and how debilitating is the disease?
2) are you taking the 3 drugs every day, or 3 days a week?
3) are the drugs prescribed in the correct dosage — based on height and weight. A 110 lb person would probably have a different dosage than a 150 lb person.
3) besides the drugs, what else are you doing to help your lung condition — lifestyle changes such as exercise to improve lung function, rest, etc.
As @windwalker mentioned, most treatments take a minimum of 12-18 months to show improvement. The expectations of improvement after 6 months is very bold, I think.

That said, my situation is different from most here. I was on the 3 drugs for 9 years. Thankfully, the drugs eliminated my symptoms (I was quite ill and had a very demanding work schedule for years), stabilized my health, but caused other side-effects which came and went. After 4 years, I tried to go off and within 3-4 months got quite ill again. I then took the drugs for 3 days/week instead of each day.

I have found, along with the 3 meds and vision screening, it is important to consider these:
1) check your Vitamin D level – mine was at about 4-5 and very deficient; Vitamin D is somehow associated with lung function and NTM. I take prescription Vitamin D.
2) get plenty of rest … even if you can’t sleep, at least rest.
3) EXERCISE … anything you can do to increase your lung function. My pulmonologist hit me with this ‘exercise thingy’ upon diagnosis. Pilates, Yoga, Walking every other day, aerobics (if you can do it), etc etc. These DO help quite a bit!

NTM/MAC/MAI is a tricky disease . . . it moves around in our lungs, can decrease in one area and pop up someplace else. Best wishes to you.