Guest Post-David Haas

I was contacted earlier this week about a guest post written by David Haas.  He is passionate about caregivers, cancer fighters and survivors. Since Big Bird and I watched first hand cancer still our Dad away and take the lives of my Aunt Karen (lung cancer) and my Great Aunt Sandy (breast cancer)-I am grateful for people who are "cheerleaders" for caregivers in any respect.

I am excited to share his post on how exercise can improve the lives of those fighting such crippling diseases.

You can learn more about David here.

Exercise Improves Life in All Phases of the Cancer Fight

By: David Haas

Whether you are newly diagnosed, already undergoing treatment or surviving cancer, there have surely been times where you felt like all the fight has already been drained from you. The last thing you could imagine doing is reaching for your last bit of strength to maintain your level of fitness or get a bit of exercise. Research shows, however, that the benefits and payoff of doing just that make it worth the mental and physical effort with rewards that can help save your life.

In fact, in June 2010, the National Cancer Institute released a bulletin entitled "Guidelines Urge Exercise for Cancer Patients, Survivors." This bulletin explains what is currently understood about the benefits of exercise and fitness during cancer treatment and recovery, and what future avenues can be explored with further research.

It had already been determined by clinicians at the University of Pennsylvania that weight lifting and other resistance-type exercise reduced the incidence of lymphedema in breast cancer survivors. Published in the "New England Journal of Medicine" in 2009, this study explained that exercise helps, rather than exacerbates this painful and potentially dangerous swelling of the arms.

The more recent information stresses to doctors and patients that cancer patients at all stages of disease and recovery should be urged to stay or become active. It seems that, in addition to the specific benefit of reduced lymphedema for breast cancer patients and survivors, overall quantity and quality of life may be improved in many types of cancer. They point out, though, that further analysis is required to determine the extent to which progression-free and overall survival are affected. What is known is the positive effect on quality of life. During and after treatment, body image becomes a factor leading to reduced quality of life, and perhaps depression. Exercise significantly improved this variable. Another major benefit addresses changes in body composition. Whether treatments lead to muscle wasting and weakness or weight gain and fat deposition, exercise helps to fight these changes.

The researchers point out that the evidence only supports specific recommendations for breast, colorectal, gynecologic, prostate and blood-based cancers at this point. This is not because exercise will not benefit patients with other types of cancer. It only means that current studies have not included enough data on them to this point. Obviously, recommendations will vary by type of cancer. For example, if surgery has weakened an area of the body, that factor needs to be considered. The same exercises may not have the same benefits for patients who have breast cancer versus someone with lung cancer, mesothelioma, bone cancer and so on.

One of the most important things to come from this study, researcher hope, is to encourage activity and to stress to doctors that cancer patients can, and should, exercise. Patients, oncologists and trainers will hopefully adopt these new recommendations to help cancer patients maximize the quality and perhaps even the quantity of their lives

Holy Moly

No updates in over a year! So sorry!

We lost our father to cancer last December. We were fortunate enough to fulfill his wishes and spread his ashes in the beautiful Red Fish Lake area of Idaho in August.

Big Bird is doing well liver wise. Having some kidney number concerns-but since he broke his arm last month take a dive down his stair case-they are holding off and trying Rapamune again. I am not thrilled with this choice...so I think I may attend my first clinic appointment in a year with him on his next trip.

Big Bird is a healthy weight and looks remarkably better...I can hardly believe he is approaching his 3rd year (or re-birthday as called in transplant circles) next month.

All is good

I have updated in awhile...I guess you could say that is a good thing! All is well in Big Bird's world! Medically speaking anyways. Blood work is good, health is good, liver is good!

On antoher note, I am volunteering for the MDA Lock-Up this year. I am scheduled to be arressted on November 5. Please help me raise my "bail". You can donate online here. I know it is a step away from the liver programs that are dear to my heart-but still a worthy cause.

We are still struggling with out father's cancer. He has stage IV lung cancer with mets to several areas in his body-including the brain. This is just another challange we get to deal with.

FDA Alert

My trusty Yahoo PSC group set in the latest FDA alert. It just happens to be on Rapamune. The anti-rejection medication they had switched Big Bird to back in February. Apparently it has caused issues in kidney patients that were switched from some other anti-rejection to Rapamune.

If you are taking another anti-rejection medication and your doctors want to switch you, PLEASE question them until all your concerns are answered.

You can read the full FDA alert here.

Good News....sad news

Big Bird is getting better. He seems to be responding well to the drug therapy. His blood works has shown improvement each week and the jaundice is going away. He goes back in 2 weeks for more blood work. The transplant team is hopeful that the damage caused to the liver during this rejection will repair itself, but only time will tell us.

On Friday, June 5, I got a phone call my our dad. I realize we have had a very strained relationship with him for several years. But he is still our father. He called to let me know that the doctors have diagnosed him with lung cancer. My aunt, his sister died from lung cancer just 1.5 years ago. I'm still reeling from this news. He was going to see the specialist today and is suppose to call when he has some more news to report.

We learned a new phrase....

So, Big Bird calls me, Monday morning at work, home nurse called clinic, she wasn't comfortable with his symptoms of the Vancomycin treatment. So clinic said-you need to come (wtf??? I so was not prepared for an impromptu trip to SA). But, what does Big Bird do on this 2 hour car ride??? SLEEP...butthead is all I can say!

They run the normal myriad of blood work, chest xray. blah blah blah..... And why yes, that is a lovely shade of YELLOW he is sporting. They say it will stay for 6 months to a year and his bili will go up and down this whole time. Yesterday, his bili was at 17. I asked about the LFT, AST etc., but we all got distracted. She did however say there was some minor improvement.

His lovely pic line for the Vancomycin treatments he has to get at home. Hopefully when we go back to clinic on Friday (yes, for the second time this week) they will take the pic line out. That is gonna make for come completely grotesque and awesome pictures.

It stings a wee bit when they change the dressings. He took it like a trooper. Of course, I encouraged them to go ahead and be mean. ....but they like him there?

Yeah...we were not admitted yesterday! We were very happy. It seems it's a crap shoot whether he gets admitted every time he goes these days. They did say, that this was probably an unnecessary visit, but when it comes to "Mystery" boy, they are being overly cautious.

So, the new phrase you ask, well it is DUCTOPENIC REJECTION. He has chronic rejection, but the rejection is starting/stemming from his bile ducts. I found an article here you can go and read if your interested.

So until next time, this was a day in the life of Big Bird.... I leave you with this bumper sticker as sighted on the way to clinic! It just struck me as funny since I keep asking Heavenly Father why he thinks I have the strength to go through all this on to of dealing with my poor Aukee baby.

And the answer is????.....

Yesterday we got the biopsy results back- Chronic Rejection.

Isn't that a delightful diagnosis to be given???

So, I hop over to the web and find this definition on medscape.com:

"Compared with other vasculzrized organ grafts, chronic liver allograft rejection is uncommon, most likely due to the unique immunologic properties of the liver allograft, the regenerative capacity of the liver, and better recognition and control of acute rejection. The incidence is approximately 1 % to 3%."

Whole article can be found here.


Are you kidding me, 1-3% chance of getting this. Lets hit the home run in rareness yet again...the rare liver disease wasn't enough...let's get more ambiguous with rejection.

The plan is to treat him out patient with immunosuppresent cocktail and hope the rejection will reverse or correct itself. This can take 6 months to 1 year.

I have no idea where this road will lead. I really had thought this journey was over.

So, the plan is to get Big Bird out of hawk and treat at home. At least he has his own place ;-)