Wednesday, October 19, 2011

Guest post - Finding the Right Cancer Support Network for You

Recently I was contacted by someone who happened upon my little blog, and who wanted to share some information that some of my readers might find helpful.  David Haas is a guest contributor to the Mesothelioma Cancer Alliance blog and maintains his own blog.  I feel honored that David asked me to post his article.  Here it is:


Finding the Right Cancer Support Network For You

Cancer is not only a threat to one’s body; it’s also a threat to one’s emotional integrity. Family and loved ones can be sympathetic and supportive, but how can they really know what you’re going through? Peer support can be a vital resource for cancer patients. A new form of cancer patient peer support group has emerged in recent years, facilitated by the Internet, that help cancer patient’s support one another. These are online cancer support networks.

Cancer support networks can be formal groups affiliated with hospital and cancer centers, administered by medical cancer specialists; they can be informal networks, put together and managed by survivors; or they can be anything in between.

While some of these groups are geared toward emotional support alone, others are oriented more practically and offer support for both the practical and financial aspects of cancer survival that can sometimes be overwhelming, things like how to find assistance with transportation, food preparation, laundry, cleaning and even childcare if you’re in a situation where you don’t have a support system to help you with those things. Cancer support groups can also point you towards financial resources in case your insurance is inadequate to meet your medical and transportation needs. Cancer support groups can help you find 24 hour cancer support lines and medical information; they can even help you formulate questions to ask your health care providers that will yield the most useful replies.

The results of several research studies suggest that finding the right cancer support group can help patients cope better with all aspects of their disease which can actually help them live longer. Online support groups may be particularly useful for people who live in rural areas or who are immobilized because of their disease. There are even cancer support groups for patients with rare cancers like mesothelioma that can help these patients feel less alone.

How do you find an online cancer support group that’s right for you? Begin with talking to your doctor, your nurses or your hospital social worker. The American Cancer Society (ACS) maintains a registry of literally thousands of cancer support groups nationwide as well as of other cancer advocacy organizations that maintain online support groups. The National Cancer Institute maintains a similar database. Affiliated with the ACS, the Cancer Survivors Network is a sophisticated Internet forum with bulletin boards and live chats. There’s a cancer support network that meets your needs waiting for you to find it.

By: David Haas


To add a little to what David has said, another place where I have found support, as have many other cancer patients and families, is through the Association of Online Cancer Resources. ACOR adminsters over 150 mailing lists in support of people affected many different cancers.  As I have said here before, being on the ACOR list has been wonderful for me; without them I would not have known about HDIL-2, much less had the treatment.  And while it was not ultimately successful, the positive effects of it are likely still taking place in my body.  The people I have met on the list are wonderful; willing to share information and truly caring about other listmembers.

Tuesday, October 11, 2011

The Ballad of Tom and Jerry

Once upon a time there were some little frogs.  African Dwarf frogs they were, though they found themselves, along with a couple dozen other frogs, in a third grade classroom in the United States.  They heard that they were part of some sort of science experiment, and that frightened them.  Fortunately, they weren't forced to wear any makeup, eat 12 times their body weight in aspartame daily, or have tumors grafted onto their wee bodies.  Instead, they were only present in the classroom for "observation".  This observation consisted of the little frogs being placed into small tanks in groups of 2 or 3, and some children looking at them every day, along with feeding them and keeping their tank clean.  All in all, it wasn't too bad a gig.

After a few weeks though, the gig was over.  What would become of these dwarf frogs?  The teacher in the classroom placed them for adoption with some of the students, ones whose parents had signed a form agreeing to take care of them, students who had to explain in writing how they would care for these miniature amphibians.  And so it was that two of these frogs found themselves joining the family of a girl named Rebecca.  Rebecca, you see, loved frogs, had loved them ever since she was a toddler.  When the teacher said that the frogs could be adopted out, Rebecca pleaded with her parents to let her have one.  They agreed, though they would need to purchase a home for the new family member, as well as food.  When the adoption day came, not one but two tiny frogs went home with Rebecca.  African Dwarf Frogs are social frogs, and prefer sharing their home.  Having a buddy in the tank would make their latest transition  much easier.  As soon as they arrived at Rebecca's house, she and her dad set them up in their new tank.  Soon everyone in the family was captivated.

Naming of the pair was a hotly debated subject among Rebecca's family.  Many names were suggested, and just as many were rejected by the adoptive mom.  After watching the frogs chase each other around their watery home, Rebecca settled on Tom and Jerry.  One frog was noticeably larger than the other, so it was easy for the family to distinguish between them.

They lived on Rebecca's family's kitchen table and life was good.  They swam, they rested, they observed Rebecca and her family while the family observed them.  But then Black Monday struck.  That evening, Rebecca's sister noticed Tom floating on his back, not at the surface, but closer to the bottom of the tank.  Distraught, Rebecca lovingly fished his lifeless body out of the tank.  She wanted to bury him in the yard, but her parents insisted on a burial at sea instead.  So Rebecca took Tom's body into the bathroom, locked herself in, and held a private service for him.  Rebecca was very sad about Tom.  She asked why did he have to die?  Her parents couldn't give her an answer, so they just comforted her as well as they could.

The next day, when Rebecca came home from school, she found Jerry lying at the bottom of the tank.  In a panic, she called her mother and left her two increasingly sorrowful messages, before reaching her mother on the phone.  Jerry had joined Tom over the Rainbow Bridge.  Rebecca was heartbroken.  Her parents told her that once she felt better, they could get more frogs, or maybe some fish, which improved her mood.

Goodbye, Tom and Jerry.  We're sorry to lose you; you fascinated and entertained us.  Thank you for letting us share our home with you, however briefly.  Your time here was so short that we never had the chance to even take your pictures.

Tuesday, October 04, 2011

Still kickin'

Finally done with leg ulcer healing time, which means it's back to Sutent time.  Last Thursday I was officially discharged from wound care and took my first capsule of cycle 9.  Since I had been off treatment since late July, Dr. Rini wanted me to be scanned again so that the next scans would be compared to now, rather than where I was two months ago.  The rationale is that in the last two months we expected progression of the cancer.  I was a bit nervous about what they would find, though I am no longer nervous at all about the scans themselves.  It's interesting to learn that what I once thought I couldn't tolerate, is now just a minor event in my life.  I had my first MRI scan in 2005 when they still didn't know what lurked in my kidney.  It was brief, only 10-20 minutes or so, because of my pregnancy at the time.  But to me, it was an eternity and I felt very trapped in the tube.  Once it was decided in 2009 that I should have MRI scans of my abdomen and pelvis rather than CT scans, I had mixed feelings.  I still felt anxious about being confined to that narrow, loud tube, anxious enough that Dr. Rini gave me a prescription for Xanax to take prior to scan appointments.  On the flip side, no more CTs below the chest means I no longer have to drink the oh so flavorful and delightfully slimy Redicat contrast drink.  I am now able to go into the MRI without drug help and for the first time last week, was relaxed almost to the point of sleep while in the tube.  I can't in fact sleep in there because I have to hold my breath during several images.  Now, the only rough patch in the scan procedure is getting the IV inserted; my veins are too shy for the average nurse or tech to find easily.

Back to last week's scans.  The results were as follows:

CT of chest  - detail of lungs
RESPIRATORY SYSTEM: Multiple bilateral pulmonary nodules, many of which have decreased in size. For example, 2-mm nodule in the entry site of the right upper lobe (SP 145) previously measured 4 mm. Additional interval decrease of 8-mm poorly marginated right lower lobe nodular opacity (SP 50), previously measuring 10 mm. No new pulmonary nodule, parenchymal consolidation or foci of cavitation.

In plain text - I have multiple little dots in my lungs.  Many have shrunk, including one going from 4mm to 2mm and one from 10mm to 8mm.  No new dots seen.  Bottom line:


OK, that is great news, and surprising given my time off treatment.

My abdominal and pelvic MRIs are read and reported together.  Here are the Cliff's notes:

Previously identified ring enhancing lesion in hepatic segment VIII (series 21, image 36) is stable in size measuring 1.2 x 0.9 cm, but demonstrates increased central enhancement. Additionally, there is a new hyperenhancing lesion in hepatic segment VI, which measures 1.1 x 1.1 cm (series 21, image 70). 

This is a good news/bad news scenario.  Bad news - there is a new spot in my liver, joining the one that remains.  In truth, this could be a lot worse, considering that I had four of these spots prior to starting Sutent.  Good news - I'm told that the "increased central enhancement" of that tumor can mean that it is dying off.

The spleen, right kidney and right adrenal gland are unremarkable. There is no hydroureteronephrosis. A small splenule just distal to the pancreatic tail is unchanged.Previously described L2 vertebral body hemangioma is unchanged. No new osseous lesions are identified. 

This is the spinal thing that they saw earlier this year.  I am having a lumbar MRI and seeing the neurosurgeon next week for a 3 month follow up to hopefully confirm that it is just a hemangioma.

Pelvis:The previously identified pelvic omental nodule is stable in size, measuring 1.7 x 1.4 cm (series 8, image 46). There is no new pelvic mass oradenopathy. 

So, the one spot in the pelvis is still there, still stable, and most importantly, has no tumor friends that have joined it.

Wow.  This was better news than I could have hoped for.  Well, in truth, I could hope that everything just disappeared since July, but I know better than to hang my hat on that hope.  Clearly though, Sutent was still kicking some cancer ass even while I spent my summer letting my leg heal, and getting very sluggish as a result.  I need exercise!

So that is the latest medical update.  Like I said in the title, I'm still kickin'...