Tired .. really tired

It is getting really tough to deal with the complete lack of energy. 

Even after sleeping a full night, it is like you are moving up hill through molasses. Weird. 

Climbing the stairs is exhausting and even something simple like shaving the head is now a chore. 

Things still need to get done around the house so time to suck it up and just deal with it.

Pain .. its whats for dinner

and breakfast, and lunch.

What started my even getting diagnosed with MDS was I thought I had arthritis. Getting older I guess but best to check it out. The counts alarmed my primary care and off we started into the wonderful world of oncology.

Every time I would go in to see the oncologist, Id say "my hands really hurt and it is now in place X" or "it is still in my hands but it is now moving between X and Y".

We went through a good part of the alphabet of places before I was finally given something to help control it. The best way to describe the pain is like a really bad tooth ache combined with something trying to burst out of your joints. The movie "Aliens" comes to mind.

I stll get woken up from the pain and it takes forever for the meds to kick in but it is sort of easing somewhat. Discovered I need to shift the times when i take the pills so they last through the night. Last night was not a pleasant experience.. We found place H (the hips) and place K (the knees) along with the usual fingers (F?). Not good last night at all.

Dana Farber visit update

The visits I had today were to confirm diagnosis and determine choices/options.

The specialist states that my MDS will likely turn into acute leukemia within 2 years.

I can be given low level chemo drugs like Vidaxa to help keep my current counts relatively stable but it is a short term solution at best. Eventually the disease will overcome the benefits of the chemo then a match is a must. Also, the drugs dont work for everyone so who knows.

We are still determining whether to take the drug route. It will depend on how long it takes to find a match.

If a match is found soon, there isn't much of a need to do the Vidaxa.

Once a match is determined, I will be in the hospital for about 40 days between the chemo to kill all bone marrow, do the transplant, and recovery.

I go home after that but am effectively in isolation for a year because the immune system needs to rebuild.

Hopefully my work will allow me to work from home during this period.

Long day today.

Aplastic Anemia & MDS International Foundation News Letter

http://www.industrymailout.com/Industry/View.aspx?id=266043&q=302274370&qz=02a105

For anyone who wants it - a book on MDS

 Call Audrey Hassan at the MDS Foundation (800) MDS-0839. Ask her to send you the book "100 Questions & Answers About Myelodysplastic Syndromes" By Jason Gotlib, MD, MS & Lenn Fetcher, RN, BSN.

Why CT scans and Oprah were never meant to be mixed.

Well that was special.

Chug down two bottles of a barium mix and wait.. for an hour.

I understand the reason for the wait but did they really have to force feed me Oprah babbling about and with soap stars?

Oprah. No means no!

Stomach is doing somersaults. Hope it is just the barium doing it.

What MDS is.. and is not.. a good FAQ

Finally.. A concise breakdown on MDS.

Lots out there from Google searches but this puts everything into a nice summary.

http://www.marrowforums.org/mds.html

New to MDS.. Knowing what questions to ask

One of the things I am most concerned about is in asking the right questions. The doctors are not exactly hiding things but they don't want to overwhelm with detail either. One of the message board members pointed me to the following list of questions to ask. Going to use this for sure!

A friend also mentioned keeping a notebook for any questions/answers you might have. I think this is a great idea.

CT scan today

I will be getting the CT scan today. This is to check for spleen enlargement and possible problems with the liver. There is a concern that there could be retention of iron which is a typical response from MDS. Hope, but don't expect, to hear something today. I most likely will get the results next week from either my current oncologist or the new one I am seeing at Dana Farber.

Found another forum for MDS

It can be found at http://forums.marrowforums.org

Sorry.. Fixed the link.

Benzine and jet fuel

I've been doing some web searches and there is no reported evidence that exposure to JP-4 can cause long term health problems.

I have had had direct skin exposure to the fuel and breathed it in as jet exhaust.

How there can possibly be no link?

The very same searches say that exposure to 100 parts per million can cause problems.

Will be investigating this further as part of the seminar on May 14th.

There is a specific talk for veterans.

Attending Living with Aplastic Anemia, MDS or PNH on May 14th

WHEN:
Saturday, May 14, 2011
8:30 am – 5:00 pm

NOTE: On-site check-in will begin at 7:30 am. Breakfast and lunch are complimentary for registrants.

WHERE:
Westin Waltham-Boston
70 Third Avenue
Waltham, MA 02451
(781) 290-5600

http://boston2011.aamds.org/Markslist/donorpro/displaySite.do?siteIdCode=4HPPZNW0

A community forum for patients and family living with MDS

Just joined a forum specific to patients and family of MDS.

Hopefully connecting with others experiencing this will give insight to treatment, medications, side-effects, etc.

Definitely don't want information overload but other patient and family experiences will be helpful.

For anyone who also wants to use the forum, it can be found at http://www.mds-foundation.org/forums/ubbthreads.php?ubb=cfrm

A moment of reflection - pluses to getting MDS

Should I get chemo, that will be a really easy way to drop the weight I have always meant to. 

No need to exercise. Boooyah!

I also get a free pass from changing the cat litter or cleaning up dog messes. I am truly sad about that one.

Being the match

Never heard or even thought about it before but I highly encourage all who can to get marrow typed through the  National Marrow Donor program . I've given blood and am listed as an organ donor but this is something else worth considering. A lot of people are waiting for a match that could save their lives and relatives are not always viable.

An additional lesson from this is that it is very hard for relatives over-seas to get typed into the US National Marrow Donor program. They can get typed and added to the national database for that country but it doesnt mesh with other country databases.

Perhaps the various databases should be merged so that more people could be helped. Just a thought.

CT scan scheduled. Finally

I was finally able to get an appointment for a CT scan on April 5th. Took a bit of doing to get it scheduled. For some reason, Harvard Pilgrim was refusing to authorize the test until one of their pet doctors talked to mine. Lets get with the program people.

Getting the news - or how a nurse should be fired

On April 30th, my wife and I went in for the results of my bone marrow test.

While waiting for the doctor, the nurse took vitals. This includes weight, blood pressure and other stuff. Interestingly the nurse mentions that they need to keep close track of the weight because I will be getting chemo. Niiiiice.. I am informed I have cancer by a careless comment.

My wife and I caught the comment immediately and looked at each other. Well I guess that settles that.

On the upside, we got to stew on that for about half an hour while we waited for the doctor to come in.

Can we say wired for sound at this point?