cranburymom

wow - I would like to give it a try. So nice to know that your pain is gone!!!

Yes - 25 2000's once per week (big jars from Costco) ... I did ask the radiation doc about such a huge amount of a fat soluble - he shook his head and said most people don't get enough. Since then, we've spoken to at least two other individuals whose docs have prescribed the same thing. You all are getting much better care than we have available. Bob's regular oncologist refused to do vitamin testing back in November - and I "know" it's an issue because Bob has a short colon resulting from his first (colorectal) cancer seven years ago AND he has a lifelong intolerance to a compound in most green vegetables - he can only eat green beans, lima beans, lettuce, and uncooked spinach ... AND for the last twenty-five years he has steadfastly refused to take a vitamin at all ... we may go back to the GP and ask for vitamin testing. He's more open now, after 2 primary cancers in eight years. Final note - last meeting with the regular oncologist, he told us that our radiologist was getting "everyone" on the Vitamin D, and the oncologist was thinking of getting on board as well. If you check the reputable websites, there are some early studies.

tmercer, this is very insightful. I noticed some difference among physicians (i.e., Surgeon, ONC, and Radiologist). In my case, my surgeon and raiologist are very supportive to my exercise. They truly encourage me to continue my training. It never occured to me to ask them for supplements. But I will for sure now! Thanks.
My ONC is a different stroy. He is not too interested in hearing my list of supplements or leg cramp issue. He just told me not to do ANY exercise. His reason was ..I will get disappointed with myself on performance. So why should you try. I challenged him on this assumption but in vain. So I became more conservative on communicating my complaints to hm.
I will ask him to refer me to a nutritionist who is familiar with herbal remedies. Interested to find out how he responds to my request.

There's a plethora of snake oil remedies and snake oil salesmen out there. In retrospect, I believe many of our medical folks just don't want us, looking for answers, dumping our money into the coffers of these predators. At the rate science moves, it's probably going to take a couple decades to gather enough evidence and data to support some of these herbal remedy claims.

Sure! my name is makiko.
Happy to chat or help you, if I can.

hugs,

makiko

It is quite a difficult decision. Since we have to pay bill and financial situation is very critical issue, but at the same time, we, cancer patients, should be happy in pursing whatever we really like and believe. Therefore my advice is:

1) If you have to share your mortgage and your children's college cost in the future, and your company keeps you for now, and you are OK with your job, then I agree with your husband and friends... keep your job and reduce the workload depending on your condition.

2) If you do not have to worry about your financial condition very much then think about the option of disability (I heard that you can decline receiving it whenever you are able to go back to work) and find/start something you really want to do.

In my case, I was notified of being laid off before cancer diagnosis, but thanks to the disability based on cancer, the company still keeps me (the lay-off status is on hold). Fortunately I have a good insurance which the company provides and I receive some disability compensation which allows me to pay my living cost and co-payment. I will not be going back to the industry where I used to be since the high-tech industry is so crazy and I am working with people of my son's age. Working in the industry was really exciting but it is not truly my area since I was not really talented (I do not have engineering degree and I overcompensated with my extraordinary efforts)

If I do not recover enough, and have a life of downhill, then I would choose to request social security based on permanent disability and live quietly until I die.

However my true plan is to go back to a normal life as soon as possible and try to find whatever I really enjoy and hopefully make some living out of it.

I have so many thoughts, including questions like - do you like your current job - why or why not? Do you like the field in which you currently work - why or why not? Etc....

I love my job... and I always have. Still, I find myself wanting a change in my work life... and I'm sooooo fortunate to have a job in which I can simply make that happen. So, I'm in the process of changing how it is that I do my job. I'm trying to change the way in which I approach the big decisions about the directions our research will take. And I have even taken on some tasks that are very dear to my heart but not necessarily a key element of my job description. And so on...

So, at the end of the day... Is it possible for you to transform, or partially transform, your current job experience into the job of your dreams? Can take on a specific project or lead up a specific effort that might lead you to a happier place with respect to your job?

If you can somehow do that, it'd be win win, yes? I have no idea what kind of job you have, however... so I have no idea whether this could even be possible. For me, it's not only possible... but realistically achievable... and is even happening right now.

Oh gee. I love each of your answer and truly appreicate your feedback. Based on what you all said, I see more options than a challenge.
I appreciate my job, my manager, and the company. I work for the company that find cure for serious diseases including cancer. My manager hired a short-term consultant to help my work and I enjoy working with my colleagues - they are GREAT people. It is, as you can imagine, a high pressure job - not so forgiving for any mistake (well, we can't as our ultimate customers are patients like us!).

This experience (cancer) really shaked me up and elevated me to a different level. Quite often, I hear that my gut is telling me I should be doing something else.

Yes I have to pay bills, and yes I should be working as long as I can (considering what our economy is at)...and I should be on my knees to thank my boss and the company.

Like Leepenn said, I already have everything in me. I do not need to lead a large team, or start selling my jewelries, or become a monk to find "it". It should be in me already.
This feeling may pass - feel being responsible for following my heart...

I am taking a deep breath and being open-minded. So I WILL be ready to welcome new opportunities.

I will report back in a while - hope to see you then!

Love and hugs,

cranburymom

I believe you are right in discussing every detail with your doctor, otherwise how your doctor knows accurately about you?
My chemo was postponed since the blood test results concerned my doctor.
BTW I contacted Nana san. We talked over phone. We live very closely so I hope we can meet in the near future.

Oh man - I'm so sorry... How are you doing now? If your hemoglobin is super duper low (I hit that)... Just move as you feel able. RUN WALK is always an option... Run for a short tiny bit... walk it off... repeat. Definitely don't over do it - you'll just pay for that later.

First and foremost, you have to be ready to be TIRED. You'll get out of breath much faster than you're used to. You won't be able to go as far. But, anything you do will help you be less tired in general.

So, I would say head out and plan to walk run.... Start with walking. When you feel warmed up, do a 1 min jog... return to walking. See how you feel.... Then, if that felt good, consider a 2 min jog.... Just run little experiments to see how you will do with small increments... and grow your increments...

DO NOT look at this as training so much as maintenance. I had the attitude that I wanted to keep as much as I could - as much cardio and as much muscle mass as I possibly could. I did pretty well, but I sure did lose a lot.

But, when my hemoglobin was down in the neighborhood of 8 - and even slightly lower - well... you just slow down. One flight of stairs would require a small break before moving on.

But, in my opinion and the opinion of the health care team I was with, don't stop moving unless you absolutely have to....

Riding a bike is awesome because you can coast when you need a little break. Use your easy easy gears for hills... You'll feel those for sure!

No matter what - don't push your pace too hard. Just go as hard or easy as you feel like it... but not as hard as if you were training for a race. If you head out, and then you head home minutes later... that's okay! I would say that around 9 times out of 10, moving helped me feel better. About 1 time out of 10, I just realized I needed a bit-o-rest.

Does that help?

I was told not to have a full massage until about 8 weeks after finishing chemo due to the toxin release. I love massage therapy and feel it does play an important role in healing. Instead, I have been going to rest and restore yoga. You get into very comfortable positions and stay there for a while. They also sometimes do reiki during the class which I really believe in.

My cancer journey has taught me that I have to modify my life slightly and find enjoyment and happiness in new things. For everything I have had to give up during my journey, I have found an alternative that has helped fill that gap. Try some new ways to relax and restore!

I also heard to be careful with massage while on chemo.
Sorry you had a bad experience with it...

Thank you all!
Great to hear the similar experience, and the relevant information. With this I do not need to feel that I am getting crazy or something.
I Love Reiki!
My husband signed up to become Reiki master. I decided to go with him. I will let you know how it goes.

hugs,

cranburymom

Hi
How are you feeling? Hope you are feeling well.
It would be great if you can introduce Nana san to me.
Thank you.

Hi Makiko san
I have connected with Nana san. Both of you are so great and courageous :-) Excited to get to know both of you.

yes - according to my Japanese colleagues (doctors). From what we understand based on the limited sampling (n=2 docs, so please take this as one option) and a peer-reviewed journal, Taxotere doing was 20-35% less.
Also my current regimen, TCH (Taxotere-Carboplatin-Herceptin) is not widely used there due to the worse side-effects than others. I can send you more info, if you wish to exchange email.

hope you are not having a constellation of side-effects like me.

hugs,

cranburymom, makiko