Monday, November 14, 2011

Benefits of Physical Fitness for the Cancer Patient and Survivor

This is a key topic for me and David Haas generously offered to author this for us.

Coping with cancer and undergoing cancer treatment often creates stress on the body, mind and spirit. However, whether you are a cancer patient, survivor or you have just been diagnosed with cancer, you many find many benefits for your physical and emotional health by being involved in a fitness program.

Up until many years ago cancer patients and survivors were encouraged to take it easy, but studies have shown that exercise may help with treatment, recovery and living a fulfilled life. Some benefits that you may receive with the help of fitness include:

•Building a resistance to tolerate chemotherapy
•Improving strength in bones and joints while building muscle mass
•Boosting mood and self-esteem
•Reducing fatigue and improving sleep
•Maintaining or reducing weight to help fight off cardiovascular diseases and diabetes
•Decreasing the risk of cancer recurrence

You may be wondering what forms of exercises you should engage in as a cancer patient or survivor. There are three main types, namely stretching and flexibility, aerobics and resistance training. However, your fitness program would depend on factors such as the kind of cancer you have, the stage of the cancer and your treatment plan.

Resistance training and weight lifting may not be recommended for some cancers, including breast cancer or bone cancer that affects your skeletal system. However, swimming and maybe yoga are good exercise options. Yoga and Pilates are also recommended if you are undergoing mesothelioma treatment.

You should begin physical activities very soon after diagnosis, especially if you have been sedentary most of your life. Getting the okay from your doctor or medical team is important so that you may participate in exercises that will help rather than harm your treatment and recovery. Beginning slowly and gradually increasing intensity and duration is recommended.

Incorporating a practical fitness routine into your daily life is highly recommended to increase your vitality and aid recovery. The National Cancer Institute’s offers important information on the benefits that you may receive from being physically active during cancer.

David Haas is a good fellow and has his own blog here: 

Fall Weather Means .. Time for a PET Scan?

Most of this year, I have been just holding off on checkup visits and none of my doctors called or contacted me about any maintenance therapy -- except for my guru of pain control, Dr. Isi.

So as my pain began returning, I got a sneaking suspicion that the only news would be the bad kind, so I tried to see how long I could hold out. That didn't go too well and it pulled me down into a really nasty cycle of frustration and sadness. Looking back, I can say my mood started turning negative right at the beginning of July. Then I started really getting upset for most of August. I kept telling myself that I didn't really have any desire to know anything about whatever was going on that was causing my pain to start getting worse again. It just seemed like a dumb question to ask. I figured I knew what was causing the pain without asking. So I didn't.

It took me until the beginning of September to make the phone calls so I could get some blood/urinalysis work; followed by an  MRI and eventually a PET scan.

My oncologist prescribed Revlimid/Dexamethasone right at my first visit for lab works. That was not a bad guess, and the lab results DID show a trend upward in microglobulin beta indicator (back up to 2.15, but lower than the 2.37 I'd had prior to my surgery in August 2010). But when his office called and invited me to come and get the Revlimid (Celgene has committed to a very high level of material control since Revlamid is lenalidomide - a daughter drug of thalidomide, responsible for horrifying birth defects), I postponed -- not because of side effect risks. I postponed because there was NOT ENOUGH rationale to select THIS drug.

Based on my earlier treatments, I have been rewarded when asking for proper lab works to provide a better set of data for analysis / diagnosis. Rewards for me mean (a) proof of what needs treating; (b) baseline data for later comparison subsequent to treatment; (c) sense that I am not being 'practiced upon' -- rather that my treatment is as close to the proper use of a therapy as we can get based on my actual need.

So I insisted on a prescription and reading of an MRI. That was the first negative lab result. The radiologist's findings came back WITHOUT a robust/strong indication of renewed activity in the tumor at the base of my spine. So possibly that tumor had become more active without changing in appearance. It could also possibly mean that the tumor in my sacrum was no longer alone.

The only way I could get an overview of where else the myeloma could be active would be through a PET scan. Have you ever seen one? They're cool. See; about 60% of myeloma likes sugar. Mine does. So if I hold off on eating for a few hours, then get an injection of glucose (fancy sugar syrup for my blood stream) laced with radioisotopes, after just 45 minutes, the radioisotopes will be vacuumed up along with the sugar straight into the ravenously sugar addicted myeloma cells. Then I go and lie down inside a huge white cone that can sense the sprays of energy coming out of the radioisotopes. After a while enough of the rays will have been captured to create a picture. When you look at it after the software has pulled it together into an recognizable image, it looks like a faint outline of my body with gatherings of stars where the radioisotopes are collected and spraying out their tiny energy rays. Brighter clusters show higher glucose uptake. My new picture shows 5 new clusters of myeloma. They're called "lytic lesions" bone tumors for short -- two in my spine, one on the tip of my left shoulder blade, one in a rib right in front of my heart and then one behind my right lung in a rib. The one in my sacrum is all hyped up too.

Suddenly the Revlamid/Dexamethasone prescription was clearly not what is needed. There's just too much going on and it will take more than that to get it back under control. Dr S and I talked it over and we agreed I needed to work with a team that was going to be able to handle the complete range of treatment options -- whether I would try clinical trials or transplants again. So I took myself on a tour to visit the three big hemotology oncology centers: Memorial Sloan Kettering (Basking Ridge, New Jersey), John Theurer Cancer Center (the new name for where I did my double transplant in 2006) and the Cancer Institute of New Jersey/Robert Wood Johnson Medical Center (New Brunswick, NJ).

Since my lab works were fresh, and my symptoms (deep bone pain, fatigue and depression) were significant, it didn't take long for me to get appointments even with these hard-to-schedule Wonder Docs.

My next post will give the details of what I got out of those interviews. Meanwhile, I'd like to pass along a few pointers from a guest blogger David Haas who has some information on Physical Fitness for Cancer Patients. He has an excellent blog and offered to help me out with some key information. Please take a look and then check out his other articles too.

- that's all for now, MjK

Thursday, July 07, 2011

Birthday Week

Today is the birthday of the Loving Lovely Gracious Gorgeous Woman who is my wife. If you have a moment, please send a Happy Birthday to Femi today - we're having the time of our lives. A difficult time in a lot of ways. But we HAVE this time and we acknowledge that every day - we know our time is precious and dear.

So, we're going to have some extra fancy meals, and we will light and blow out teeny tiny candles. Great, huh? We'll bring family and friends close so we can look in each others eyes and hug and hold hands. We'll pray together to give thanks - Big Thanks - and ask that the blessings keep on coming. We sure couldn't do without them.

To my readers, whenever you find this. Thank you for the good words and the great energy you send our way. We really do need it and for sure we appreciate it. Keep it coming!

Time to wrap a present.. gotta run!

Tuesday, June 07, 2011

It's a Hard Knock Life

Thanks to Marie Taylor, I am updating my status today. Once again, Marie - Thanks for asking!

My attentions have been elsewhere since writing about my amazement at the Radiation Treatment process.

Thanks to Great People in My Life

It's amazing the wonderful folks who've reached out to wish me well and give good words of support. Especially my wife who has long ago gone so far "Above and Beyond" that she may be spending part of each day somewhere on the Moon!

So, How Goes The Good Fight?

Essentially, I have resolved myself to admit that the pain in my back was caused by a tumor of Multiple Myeloma. My oncologist and neuro surgeon both described it as a plasmacytoma (a lump caused by a mass of extra blood plasma cells). And that means my cancer had returned. I had a relapse.

Even just writing that makes me so sad because I had firmly believed I had it totally whipped back in '06. Seeing myself in some kind of a war that will be fought as a series of battles is truly intimidating. It scares me. I am really frightened by what that means for my future. I don't want to fight with anything. It's not a good fight. It's not fair - I didn't want it and I still don't and it really is a lousy thing to go through.

That's how it goes. I wouldn't wish it on an enemy.

So Today -- Here's How It Goes

Right now, I am fighting back from my second go around with my cancer. You can read about my radiation treatments in my previous post. It continued through the entire month of October. In November I exercised, ate well and asked to go back to work at the Defense Logistics Agency - Philadelphia. (Do you all know that my 'day job' is as an Oracle Database Administrator?
It is.-) On December 6th, I was on station and performing my duties as tasked (translation: 'back at work').

So; I did get some relief, but not all that much. I was on pain medication still and it wasn't doing its job too well. In hindsight it looks like I was alternatively too cautious/too slow to increase pain relief early enough and too optimistic/too quick to interrupt/skip pain relief in the early days. However accurately I try to explain my attitude as a patient, for sure I was getting a lot of pain from the tumor. When early in my radiation treatment, I had started to get relief, I was hoping the speed of the relief would at least just continue. But it didn't continue to reduce in intensity or even to respond very quickly at all. It sort of flat-lined.

My oncologist said that he believed the tumor would eventually respond to the radiation. None of my lab work showed any cancer activity. All of my metabolic indicators showed that I was healthy. The question was how to handle the pain.

On the second to last working day of 2010, I was told by my oncologist that I would do better at home than continuing to attend work. Fortunately my disability insurance gave us partial income and we moved forward.

Spell Relief: I-S-I-D-R-O

Dr Juan 'Pete' Isidro at Hoboken University Medical Center in Hoboken, NJ (Frank Sinatra's home town!) took a special interest in me and he has been my my Anesthesiologist/Master of Pain Management since the beginning of this battle. Once it was clear that I needed to really get a handle on pain as the one treatable condition; He has been in contact a few times a week to make sure I am okay.

Somehow; over a longer period of time, the pain has gradually subsided. And over the past two months I have been pushing very hard to get off of the several medications it took to keep the pain down/handle pain spikes. This past month, I have been maintaining with just one (very strong) medication four times a day - 4am, 10am, 4pm, 10pm. I want to go back to work.

On Friday, I believe it is possible that my Master of Pain Management, Dr Isidro, will lay out a plan for weaning me down from this one.

Pain Meds - Smain Peds!

Ha! Did they ever tell me this would be a walk in the park? No; They Did Not. So you can only begin to imagine if you have not done it yourself what it means to use a medication powerful enough to stop the pain signal from your back / not allow it to get to the brain WHILE allowing you to walk around and be with your family. That is a tricky medication with oodles of biological implications. Then there is also, "The Process of Getting Off." Reducing the number of different pain medications and the quantity of medication has been very challenging too -- once we get them high enough to address the pain, then my health regenerates without the stress of the pain, and the pain subsides. Then I have to get to the point where I feel ready to ask for help reducing the medication to a lower level; (you DO actually know this one -- it's just like 'Apply - Rinse - Repeat').

At one point my pain meds were high enough to stop a full grown horse in its tracks. But my pain was so high, that such a large amount of medication did not stop me -- just allowed me to get on with my dailiy life -- albeit in a bit of a wobbly condition! Maybe there could have been other ways to do it. I do not know. That was the way it got done by me and my healthcare team.

Today Is A New Day

My employer (a Defense Contractor called, Salient Federal Solutions) says they are trying to speak with the department (J6PS) that has contracted for my services as an IT Hired Gun, but they have not been able to reach anyone able/empowered to welcome me back to work. So I am in limbo -- no disability benefits, no income and no one on the phone!

{ Little Orphan Annie's song, "It's A Hard Knock Life" just began playing in the background here... just for me... %~) } Anyway ...

That's My Story And I Am Sticking To It!

- Mark