(from http://www.piratemerch.com)

 In which Josh talks about HSF lectures, the HEAL project introduction and doing a cardiovascular exam in Doctoring Skills. Pirates may be involved.

I’m running out of witty intros, so let’s cut to the chase. 

Our first lecturer this week was Dr. Brayden, who gave us lectures in cardiology. He started his first lecture saying, “Let’s get to the heart of the matter.” He was immediately booed by the class. Jokingly, of course.

Dr. Lewis also returned to give more lectures on lymph nodes and the immune system, and Dr. Hendley came

The highlight of the lectures, however, has to be Dr. Szilva’s lecture on the autonomic nervous system. You may recall that in her first lecture, she transformed into her alter-ego, Anatomy Woman. This time, just as the lecture was supposed to start, she suddenly jumped out from behind the podiuim dressed as a pirate, complete with bandana, eyepatch and sword. (No parrot, though.)

“ARRR! ARE YE READY TO ATTACK THE AUTONOMIC NERVOUS SYSTEM?”

You have not lived until you’ve heard your lecturer ask, “What are the major divisions of the ANS?” in a pirate voice. And as she talks about visceral nerves, she asks, “How does your body know you’ve been stabbed in the back?”

After a few minutes of this, she switched back to her normal voice and attire. “I can’t do this all day, or my voice will go. Also, it’s hard to see with this eyepatch.”

 ***

This week before our MSLG class started, Dr. Rosen gathered us all together to talk about the HEAL project we’ll be working on. At this point, we students were unclear as to what this project was. We knew vaguely that it would be a community health project of some sort, but that was about it.  

In theory, this lecture was supposed to make this project clearer. It didn’t quite work out that way. (I can write that because we’ve had a conversation with him after the fact, and he agreed with us and will improve it next year.)

The best part, however, was when Dr. Rosen encouraged us to make sure to welcome and talk to the social worker students we’d be partnering with. He then started down this conversational line: ”Think of it this way: How do you know when someone is interested in you?” he asks. “They ask you questions. So…”

And at this point, the class lost it and broke out into laughter. To his credit, he somehow got control of the class. 

Some people (not me) found that part of the lecture a tad demeaning, but apparently in years past, the med students haven’t been great about socializing with the students that have come in.

***

Doctoring Skills is definitely making us more like doctors. This week we learned how to use our stethoscopes to listen to hearts and give a cardiovascular exam. Hearing the two main heart sounds/thumps (S1 and S2) is awesome.

We listen to four areas in the heart for murmurs. The pneumonic doctors often use for areas of the heart they listen to is “Apt. M”: Aortic valve, Pulmonary valve, Tricuspid valve and Mitral valve. We also listen to the carotid arteries in the neck, we measure the radial pulse in the arm, and we also examine the dorsalis pedis pulse in the foot.

As for blood pressure, we learn how to use the blood pressure cuff to take measurements, but we don’t spend as much time on it. The rationale is that’s something the nurses will do more often than not. I’d still like to go back and perfect my measuring skills.

After this session, I definitely am more useful as a medical professional.

Josh Pothen (UVM’s Meager Med Student)

Donate $1 to The Meager Med Student!

(Chemotherapy-induced Cognitive impairment) AKA: Chemo Brain

I spoke to a member of Livestrong.org in reference to my recent memory/concentration issues. My info was forwarded to The Cancer Center of Long Island (with whom I am now playing phone tag). Melissa at Livestrong felt very strongly that what I am experiencing is “Chemo Brain.”

From The Mayo Clinic:

Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, cognitive changes or cognitive dysfunction.

Though chemo brain is a widely used term, it’s misleading. It’s not yet clear that chemotherapy is the cause of concentration and memory problems in cancer survivors. And many cancer survivors with memory problems still score well on cognitive tests, leaving doctors wondering whether chemo brain really exists.

Despite the many questions, it’s clear that the memory problems commonly called chemo brain can be a frustrating and debilitating side effect of cancer and its treatment. More study is needed to understand this condition.

I also found in a NY Times article (with my wife’s help) this comment to the following article:

It seems to me odd to talk of chemo brain without reference to specific therapudics. Do all chemotherepudic drugs cause chemo brain? About 25 years ago, I had Hodgkin’s Disease. A course of drugs I took included vast amounts of prednesone, a steroid. It made me temporarily psychotic. –extreme chemo brain. But after that drug was eliminated from my regimen, my recollection (cloudy as it is now of those times long ago) is that the psychosis abated and I returned to near normal, while on other seriously strong drugs. For the cognicenti, MOPP had the steroid and ABVD was alternated with MOP (no more prednesone). So far, I am in remission.

-Bob Roistacher

I received ABVD for Hodgkin’s as well and steroids were pre-administered as well. I was told some Steroids were also in the anti-nausea meds I received. So I’m full of questions. Typically most cases of ”Chemo Brain” being reported are mentioned with primarily Breast Cancer treatment. But it seems a lot more research is needed with this particular side effect. Melissa at Livestrong agrees.

Signs and symptoms of chemo brain may include:

• Being unusually disorganized
• Confusion
• Difficulty concentrating
• Difficulty finding the right word
• Difficulty learning new skills
• Difficulty multitasking
• Fatigue
• Feeling of mental fogginess
• Short attention span
• Short-term memory problems
• Taking longer than usual to complete routine tasks
• Trouble with verbal memory, such as remembering a conversation
• Trouble with visual memory, such as recalling an image or list of words

(I can relate to maybe 7 out of the 13 above…that’s about half)

NYT link: http://well.blogs.nytimes.com/2009/08/11/coping-with-chemo-brain/

The fact that I am 2.5 years out of treatment and just starting to experience this is confounding me. But it is much like my recurring bone pain which neither of my Dr’s will relate to my treatment, it comes and goes on it’s own will. This memory issue appears to be easily traced back to a few innocent occurences this year. As far as I can tell not much further back than that…but just like when I was finally diagnosed it call came together after I recognized the symptoms. Once I knew what they actually were, I could trace them back a full year.

Tomorrow I follow-up with my PCP on new blood work and my BP issues. Hopefully my new weight will lower cholesterol numbers and get me off the BP meds and keep me away from Cholesterol Meds. I will bring up this memory/concentration problem and see what she recommends.

I will not see my Oncologist until January (after my year-end PET scan) unless someone at The Cancer Center of L.I. advises me to get him involved in some form of treatment here.

Here is another article: http://www.nytimes.com/2009/08/04/health/04brod.html?_r=1&em

From that article: 

Nearly every chemotherapy patient experiences short-term problems with memory and concentration. But about 15 percent suffer prolonged effects of what is known medically as chemotherapy-induced cognitive impairment.

The symptoms are remarkably consistent: a mental fogginess that may include problems with memory, word retrieval, concentration, processing numbers, following instructions, multitasking and setting priorities.

In those affected — and doctors at this point have no way of predicting who might be — it is as if the cognitive portion of the brain were barely functioning. Symptoms are most apparent to high-functioning individuals used to juggling the demands of complex jobs or demanding home lives, or both.

and another: http://www.nytimes.com/2009/08/11/health/11brod.html?ref=health

So this shitty adventure with cancer continues to take me along for the ride and it doesn’t seem to be going away anytime soon.

By the way November 4th is exactly 3 years to the day I spotted the swollen lymph node in my neck that changed everything…that will be another “odd” day for me, as will most of this holiday season since so much of it was tainted with exams and scans and needles and Doctor consults etc.

On December 19th I will mark 3 years since I was officially diagnosed. AND I AM STILL HERE!

Late term side effects be damned.

Be well.

I was torn.  Part of me wanted to take Nathaniel out for Trick- or- Treating.  Part of me said, why bother… he’s too little and I don’t have John to enjoy the experience.  I didn’t decide to take him out till after 4 PM.

I thought about last year.  John had wanted to take him out.  I kind of let John make the choice since he was recovering from his surgery on Columbus Day (to remove melanoma from a lymph node).  We didn’t have an official costume to him… just had him in his winter suit that had ears and looked like a little bear.  It didn’t go very well last year… we hadn’t fed him before we left, he probably was too hot, he’d fallen asleep in the car and then we take him into a strange house while he’s sleepy,  and it was too close to his bedtime.  He had a meltdown at the first house.  We used it as a learning opportunity.  Live and learn.

I knew if John was here, he’d want Nathaniel to go see the relatives.

I knew that the aunts would appreciate seeing Nathaniel.

I also had a feeling that once I got out that I’d be glad that I had.

I was right.

We had seen John’s Aunt Marie in the afternoon.  She even helped put together his kitchen that I got for him.  I’m looking for toys that can quietly occupy him while I nap.  Several people told me… all kids love playing with the kitchen sets and it can occupy them for hours!

Nathaniel playing with his kitchen set.

So far it seems to be a winner!  This was a relatively inexpensive one purchased at the dollar store.  I’m hoping it will hold up.

For Halloween I dressed him as a bear.  It was a hand me down costume that he pretty much fits into.  It’s a little small in parts, but others fit him perfectly.  It works and you can’t beat the price.

Nathaniel Bear, October 31, 2009

First, we walked over to see our neighbors… they were thrilled to see the boy.

Then we headed over to see John’s Aunt Linda & Bob & then stopped by to see John’s Aunt Di & Uncle Harold.  Everybody was thrilled to see him and glad that we stopped by.  It was nice to hang out and see everybody.  At the same time there was the heartbreak that John wasn’t there with us.

So many things are twofold… the joy of the moment and heartbreak of the not having John to share and experience the moment.  I can’t even describe how much I miss him.  Love always…

Radiation treatment seems simple. Go into the office every day, 9:15, for fifteen minutes. Lie down on the table. The techs line up the tattooed dots with the laser grid. This big machine moves around to focus on the guts from six different angles, 20-30 seconds per. Done. Can’t feel a thing.

The Big Machine (vertical)

Well, it’s a little more complicated than that if one pays attention to the details. First, the machine is a linear particle accelerator that can generate gamma radiation or direct electron beams. No more radium, cobalt, whatever. Syntho radiation for the modern age. The business end of the machine is half of a very large horizontal tuning fork that can rotate around the plastic table that one lies on. See attached pictures.

The Big Machine (horizontal)

I get shot from six different angles: top, bottom, left, right (all gamma), and then left and right oblique angles (e-beam). For each of the shots, the techs fit a set of lead shields onto the exit face of the accelerator. The first four deep doses are gamma radiation, 18MeV. (That’s eighteen million electron volts, which sounds like a lot, and it is.) For these doses, the lead forms are huge, six to eight inches long (in the direction of the beam), the same wide, and two-plus inches thick. The inside surfaces are carefully machined to shape the beam just so, to match the doctor’s plan from the simulation. Remember the simulation? Every week they take a set of X-ray films, but using the accelerator instead of and X-ray source, to see that the fields being irradiated match the doctor’s drawings. The plates come out very overexposed but the shapes are clear.

The last two doses are done with electron beams, also 18 MeV, rather than gamma (which they call “photon”) radiation. Gamma rays, energetic little buggers, go right through, but e-beam doses are heavily attenuated by flesh, down to half strength at a depth of only two to three inches. These are used by design to shoot the shallow lymph nodes in the inguinal region, left and right. Just in case any cancer cells escaped into the lymphatic system, the doctor treats the lymph nodes.

Each of the doses follows a standard routine. The techs line up the dots with the laser-drawn grid. As a double-check, lights from the accelerator head are projected through the lead masks, and the techs check the alignment with the magic marker (Sharpie) lines they drew on the skin. When they are satisfied with the alignment, they leave the room and the computer closes the radiation door, which is about eight inches of steel and concrete. When the computer is satisfied with the door, it fires the accelerator. Typical doses are between twenty and forty seconds, during which I have to remain very still. Then the door opens, the techs come back, the machine rotates to its next position, and we start all over again.

(I think the linear accelerator uses a target to generate its gamma-level radiation. Well, when I look it up, actually, the gamma range ends at 8MeV, so this is trans-gamma. Is there such a thing? But the radiation is generated by decelerating electrons against a target, so they’re sort of X-rays. But given the energy levels, maybe they’re Cerenkov radiation. Dunno. Wish I’d studied the physics a little harder. When the accelerator is operating in electron beam mode, I guess that the target is out of the way so that the electrons are emitted directly. What kind of barrier do they use to keep the vacuum in that is transparent to high speed electrons? Again, dunno.)

Radiation weeks 4, 5, 6

After the initial effects of the chemo, and before the radiation truck runs me over, I don’t feel so bad. For several weeks in the middle, I work about half-time, from home of course, netted into the computers at work.

The surgery is not fun. The area where one would normally sit has been assaulted with sharp objects, needles, sutures, probably cauterizing. Sitting is impossible. Lying down is hard enough. Recovery takes a solid week. Fortunately, there are lots and lots of good drugs to help one through the pain. I can’t do anything through the drugs except lie there, slack jawed and drooling, staring at the TV. Or the wall. Two friends supply me with a large number of DVDs to help pass the time. I watch many movies that I cannot remember now. As I said, good drugs.

Back to the surgeon for follow-up. Well, everything looks pretty good, he says. Huh? Wait a minute, wait a minute. That’s not the way we read it. The pathology report in my hand says that the underlying muscles and the lymphovascular system are involved. This means lots more treatment. The doctor is skeptical. The path report in his hand doesn’t say this. Puzzlement. Turns out that his records contain only the preliminary pathology report, which says good things. The final report, which luckily we got a copy of from the hospital, says bad things. (Lesson: get a copy of absolutely every piece of paper you can, from every doctor, every lab, every hospital, and study them all.)

Lucky, lucky, lucky. Had we proceeded based on the incorrect preliminary path report, the cancer would still have been there and still growing. And I would be dead in two years.

The lymphovascular system, oops, is the highway system that drains extracellular fluids from tissues. This provides a path that permits cells to move, too. In particular, it allows such nasties as cancerous cells to get away to other parts of the body, to metastasize, which one does not want. So now I have to go thru the whole treatment, chemo and radiation. Oh, goodie.

The official classification is T2-N0-M0: muscle layer involved, no lymph nodes visibly involved, no metastases visible.

Where Was it Hiding?

The obvious question is, If we had found it just a few months earlier, would the surgery have been effective? Would the surgery have got all the cancer? Would the excision have had the “clean margins” that I’m told I should want? This was a case of early detection, to be sure, but still earlier would have been better. At some point in the past, it must have been small and well-defined and easy to remove. But, being so small, would it have been possible to detect? These things start as one rogue cell. Then they get out of hand. When did it cross the line from undetectable to detectable? When did it change from operable to inoperable? From well-defined to diffuse? The surgery got most of it but not all. Almost all, but not all. What’s left is microscopic, but is microscopically bad. Little lethal seeds floating down lymphatic rivers, looking for fertile new homes. We can’t let that happen. And if it’s not feasible to pick them off one by one, it’s time to get out the nuclear weapons.

Sooo…

I’ve had this swollen lymph node in my neck that hasn’t gotten bigger, or smaller, for  a few months now.  I also have these crazy skin rashes that I have always gotten since puberty.

Now, *gulp*, I’m going in for a biopsy.  Worst case scenario is lymphoma.  Depending on if it’s early, I’m OK.  Definitely one of the most treatable cancers on the planet.

The only real problem is that I AM SCARED.  

This sucks.

Kaylee had a great day, and we received some good news.  Kaylee will not need major surgery to do a biopsy on the tumor.  The doctors were able to confirm the cancer in the bone marrow.  We’re still waiting on the results from the lymph node test and full body bone scan.  As of right now we are scheduled to start chemo treatments sometime tomorrow.  It’s a huge relief she won’t have to go through a major surgery and prolong the chemo treatments and recovery.  

We all witnessed kaylee crawl from one bed to another on her own today – not once, but twice.  Just like everything else, she would not let anyone help her.  She fought through the pain and discomfort to prove once again that she will not let this cancer beat her.  We are so proud of her. Hooray Kaylee!

We had lots of visitors today.  Kaylee slept through most of the visits, but we made sure she knew that she had friends stop by.

Well, day 2 has come to and end.  We’re all heading to bed right now.  Kaylee is watching SpongeBob, Carol is on the phone and you know what I’m doing

Until tomorrow… we love you all and wish everyone a good night.  Hugs and kisses from Kaylee

We received another page about 1:45pm from surgery. We met the surgeon; Dr. Stallion in the hallway where he told us that the broviac catheter and the removal of the lymph nodes went well. The lymph nodes were being sent off to the lab for analysis. The 3rd procedure to be done today is the bone marrow biopsy, which is currently underway. Once the biopsy is complete, we’ll meet her back in M20 where she’ll recover from the anesthesia, and eventually we’ll be back in her room in building G71.

We just received a page from surgery; Kaylee is doing well. The broviac catheter was installed, and they were about to do the biopsy on her lymph nodes, and then the bone marrow tests.

I have been wanting to write this all weekend, but haven’t been able to… I will try to now.  This past Friday, I went to the doctor with my grandparents and my great-grandmother, like I have been doing since I changed doctors.  My great-grandmother has lung cancer and chemo doesn’t work for her.  I have known this for months now, but she has had some really good days that gave me hope.  For a while, her cancer hadn’t spread at all.  She told the doctor about this pain she has been having in her side, on her ribcage.  He told her that he would do an X-Ray – that either she had broken a rib or the cancer had spread to her bones.  He said this with much regret and hung his head low.  Our doctor is a very caring man, and I am grateful for the care that he gives us.  After looking at her X-Ray, he informed us that her cancer has spread.  He suggested Hospice to my grandmother, so that my great-gradmother’s pain can be managed.  He also informed us that her time is short, hugged her and told her that he loves her.  She told my family not to be sad, but to be glad that she won’t be in pain, because none of us know how she feels and that she wants to die.  We were eating at a diner at this point and I burst into tears right there.  I told her that we would miss her so much.  My family is very close-knit.  We are always there for one another, in all ways.  The thought of losing my great-grandmother is taking a very painful toll onto us all.  This weekend, I have been crying on and off and feel like a huge cloud of gloom and dread is hanging over my head.  I read a quote that says “Worry doesn’t make tomorrow less painful but takes the joy out of today.”  I can see where that is true, and I do want to spend joyous moments with her until it is her time to go.  But that being said, it is utterly impossible for me not to worry and grieve, because it’s near and it’s inevitable.

The Washington Post on Sept 8, 2009 published a story called “A Frightful Week for a Little Girl” in its Medical Mystery section on Kawasaki Disease. This disease is rare and difficult to diagnose given its multitude of symptoms that can be due to something more benign including:

• red eyes
• fever
• rash
• neck mass
• red lips/mouth

However, it is the constellation of symptoms according to guidelines that Kawasaki in children should be considered when there has been an unexplained fever lasting five days, when accompanied by other symptoms including red eyes without discharge, red lips or mouth, a rash and a swollen lymph node in the neck. The red eyes and lips/mouth is the hallmark symptom of something more sinister.

To miss this diagnosis and be without proper treatment within 10 days of symptom onset may result in heart attack, coronary artery aneurysm, and even death.

Read the article here.

This past weekend at the All Points West Festival, which was held at New Jersey’s Liberty State Park, Coldplay performed a somewhat odd but touching version of The Beastie Boys’ “Fight For Your Right.” The song was done in tribute to Adam “MCA” Yauch of The Beastie Boys, who revealed last month that he has been diagnosed with cancer of the preaortic gland any lymph node. The Beastie Boys had been scheduled to be the headliners on the first night of the festival, which was last Friday. Jay-Z filled in for them, and performed his own tribute to the New York City-based trio by covering “No Sleep ‘Til Brooklyn” in his set.

To watch Coldplay’s cover of The Beastie Boys’ “Fight For Your Right,” click below:

I’m not a big fan of Coldplay at all, but doing the cover was a nice gesture on their part. If a decent recording exists from the concert, I hope that Coldplay would consider releasing it as a single to benefit cancer research.

In a You Tube video posted yesterday, Adam “MCA” Yauch of The Beastie Boys revealed that he has been diagnosed with cancer of the preaortic gland and lymph node. Appearing in the video with fellow Beastie Boy Adam “Ad-Rock” Horowitz, Yauch said that the cancer diagnosis would delay the release of their forthcoming album, Hot Sauce Committee, and will also cause the postponement of some scheduled live dates.

In the video, Yauch stated:

“About two months ago I started feeling a lump in my throat, like you feel if you have swollen glands or if you have a cold. I didn’t think it was anything. Then when we were in Europe recently doing promotion I started to think I should talk to my doctor. So I called my doctor when I got back, about two weeks ago.

“He sent a specialist, they did tests and I have a form of cancer in a gland that’s over here (points to his left cheek). It’s in a gland called the preaortic gland and it’s also in the lymph node in that area.

“I’m going to have to have surgery, probably next week (beginning July 27), and then after that have some radiation done in that localized area.”

Yauch also spoke of his optimism about the early diagnosis of his cancer:

“The good news is that they did scans of my whole body and it’s only localized in this one area. It’s not in a place that affects my voice, so that’s nice. That’s convenient.

“It’s a bit of a setback, it’s a pain in the ass, but it’s treatable, in most cases they’re able to completely get rid of it, people don’t have continuing problems with it… if they’ve caught it early. That’s the good news.”

Yauch also apologized to fans for any inconvenience that the missed live dates will cause them.

To watch the video, click below:

To read more about this story, see the articles from NME.com and XFM London.

Powerline A.D. wishes Adam Yauch a full and speedy recovery.

Well at least one was crossed this morning, that being my last infusion of chemo.  Of course it was Gemzar which meant it took the better part of an hour to get into my body but the wait was well worth it.

The attending staff were all there to see me through my last round.  My primary nurse Ann Marie asked that I come back to visit and let them all see how well I was doing.  I gave her a hug, said that I would and I meant it.  Even though all the needle sticks and drugs weren’t the most pleasant thing to go through the staff there was always cheerful and pleasant.  I actually looked forward to seeing them and if being happy and walking out of the infusion room with a bounce in my step is what the other patients need to see then count me in.  I will be back so that all my fellow cancer fighters can see that we really can get through this.

I remember my first day there.  Everyone there seemed so gloomy and down.  Sure, there still are those but I saw something today that warmed my heart.  A man brought his teenage daughter in for a treatment.  She was wearing a hat to cover her bald head but soon had it off and was beaming a gorgeous smile that lit up the whole room.  THAT is the spirit!  She was radiant.  Had I had my camera with me I might have tried to sneak a photo of her, blow it up, frame it and give it to her so that she could see how beautiful she is even without hair.  That smile will melt some guy’s heart in the future and forever capture him to her.

Prior to me getting my infusion we met with Jeremy, my Oncologist.  We are now shifting into what he refers to as a very conservative remission period.  I have a CT scan scheduled for next week.  It’s actually on Marvina’s birthday.  Jeremy thinks we will either see a very small lymph node reflecting the positive effects the chemo had on the cancer or we won’t see anything at all.  It may be that I will need another round of chemo therapy just to finish things off but we will have to wait and see what the pictures show us.  A week after the CT scan is an appointment with Jeremy.  Knowing him though I’m sure I will get a call from him to let me know what the CT does or does not show.  That’s something I really love about Jeremy.  He actually takes time to personally call me with test results and such.  You don’t find many doctors that will do that today.  Most leave those calls to an assistant or nurse or even a computer.  Not Jeremy, he prefers to make those calls himself.

Of course I’m going to ask for a CD of my CT scan to add to my collection.  It’s amazing what I’ve learned to see on those.  I use both a standard X-Ray as well as a CT machine where I work.  While I’m looking for explosives I’ve learned to quickly recognize objects on the images for what they really are.  A hair blow dryer, for example, in an X-Ray or CT looks nothing like what it looks like when you’re holding it in your hand.  So too are the parts of our anatomy.  But once you begin recognizing the parts of you it is easy to zip through the CT slices and see for yourself what is going on inside your body.

We had a slight scheduling overlap, Marvina and I, that prevented her from being there when they unplugged me from what I hope really was the final infusion.  That’s okay though as I suspect she will go with me when I return to visit in the future.  I’m guessing she has her own round of hugs to give out to the staff.

So folks, if you are diagnosed with cancer and live in the Kansas City area I without reservation highly recommend the “Kansas City Cancer Center.”  They have locations all over the city so there is likely one very near to you.  The facilities are modern, bright and cheerful as are the staff.

Sentinel node biopsy is an effective option for early-stage cervical cancer

Published: 31/05/2009

A prospective multicenter study conducted by researchers in France suggests that the majority of women with early-stage cervical cancer can safely undergo sentinel node (SN) biopsy – a technique in which only one to three lymph nodes are removed to determine whether cancer has spread – in lieu of the traditional, more invasive pelvic lymph node removal. This study, presented at the American Society of Clinical Oncology 2009 meeting, showed that SN biopsy was just as useful as full pelvic lymph node removal for identifying even small amounts of cancer cells that spread to lymph nodes in atypical areas of the pelvis.

“Sentinel node biopsy is a good option for women with cervical cancer because it enables us to remove fewer lymph nodes to get information about cancer spread, and could decrease the risk of complications from surgery, such as lymphedema,” said Dr. Fabrice Lecuru, professor at George Pompidou European Hospital in Paris, and the study’s lead author. “Previous studies have shown that sentinel node biopsy can be used to assess cancer spread in usual areas of the pelvis, but our findings add to this growing body of research by showing that this approach is also effective for identifying cancer spread in less common areas of the pelvis and the abdomen. This approach may become a new standard of care for early-stage cervical cancer.”

Ten to 15 per cent of patients with early-stage cervical cancer experience recurrence. Some are due to lymph nodes that were missed during surgery or because of undetected cancer spread to other lymph nodes. During standard surgery, several pelvic lymph nodes are removed and examined for the presence of cancer cells. During SN biopsy, however, a blue dye and radioactive substance that can be traced with imaging techniques are used to locate the first lymph node (the sentinel node) where cancer cells would travel after leaving the cervix. If this node is free of cancer cells, no other lymph nodes should be removed. Since the removal of lymph nodes may impair lymphatic drainage and cause uncomfortable swelling in the legs called lymphedema, doctors have been assessing SN biopsy (which is routinely used for breast cancer and melanoma patients) to see if it can be used to gauge cervical cancer spread.

Prior studies have shown that SN biopsy can be used in cervical cancer patients to predict cancer spread to lymph nodes in the pelvis most likely to contain cancer cells. But in this study, Dr. Lecuru and his colleagues also evaluated the biopsy of sentinel nodes in atypical areas of the pelvis in 128 women with early-stage cervical cancer who also had full pelvic lymph node removal for comparison. They then analysed sentinel nodes for micrometastastic cancer (0.2 to 2 mm in size) and isolated tumour cells as well as areas of cancer greater than 2 mm (macrometastases).

After analysing these nodes, researchers demonstrated that full pelvic lymph node removal and its associated complications could have been avoided in 81.2 per cent of women. Researchers also found that in nearly 40 per cent of women, SN biopsy alone would have provided additional, important information about patients’ disease; for example, SN biopsy was more useful than routine techniques for showing that lymphatic drainage occurred via unusual pathways to less commonly explored areas of the pelvis or of the abdomen, and for detecting micrometastases or isolated tumour cells.

eCancerMedicalScience

I know I’ve written about this in the past, of how people, sometimes total strangers, find out what you are going through and want to share some story about a friend, acquaintance or family member who is or has gone through something similar.

Today someone came up to me to tell me about their dad who, like me, was diagnosed with bladder cancer.  At the time of the diagnosis, according to this person, their dad was given a choice between having his bladder removed via radical surgery or having chemo therapy.  What they didn’t tell him was how incredibly aggressive this cancer is.  He chose chemo.

About three years later the cancer came back, in the words of this person, with a vengeance.  It had spread throughout his body, particularly following the lymph nodes up the vascular pathway into his chest cavity and presumably on up through his neck and into his brain.  Needless to say none of this is good.  Of course his only option now is radical surgery on steroids, as in removing all the effected lymph nodes and locations where the cancer has taken root.  The prognosis, according to this person, is bad.

Now, I appreciate the occasional person who really wants to impart hope even though I know that the words “Everything is going to be okay” or “You’ll beat this” truly ring hollow.  We don’t know if I’ll beat the cancer or whether it’ll beat me.  I guess what keeps me going is the sense of ambivalence I feel about it.  To put it simply, it either will or it will not kill me.  I don’t know which it will be but I’m not about to fold up and wait for the inevitable.  No, I’m going to go on living my life to it’s fullest.  You know, damn the torpedoes full speed ahead.

Still, I kind of wish people would stop doing that.  It isn’t very helpful.  I do appreciate being asked how I am doing.  It is, after all, about me.  And I really appreciate it when someone offers to pick up some of the load I’m carrying around so that I can rest.  But the others, however well meaning they are, they are not helping.

Today’s anecdote noted above is a classic.  There was no hope there at all.  Dad simply is going to die from his cancer because of a decision he made three years ago.  About all I got out of that, aside from the status of this person’s dad, was to question whether or not I made an error in judgment in years past.  Honestly I don’t know.  I suppose keeping my previous Urologist on board for so long was a biggie given he didn’t find the cancer.  There are other decisions I could question but to do so only submerges me into that pit of self pity I am trying very hard to avoid.

Sure, my life is important to me but my wife, Marvina, hers is more important.  So too is my daughter, my son and my grandchildren.  They come before me.  If I elevate myself above them then they suffer from neglect.  They might not know it but they do.  So I push my concerns regarding my own cancer to the back burner and try focusing on them.  In so doing I’m not cavalierly setting aside my health but rather distracting myself from it by investing the majority of me in them.  Turning inward, for me, is not a good thing.

I am severely tired today.  I went to bed very late last night and got up early this morning.  So my exhaustion isn’t so much a product of the chemo therapy but simply a lack of rest.  I’ll make up for it tonight though.  Tomorrow is the one day of my work week when I start my shift an hour later than normal.  I’ll use that hour to catch up on sleep.

At least I’ll try to.

Today I received my third from the (hopefully) last chemo infusion.  This was the Gemzar only week for me and now I have two weeks off before I begin my last cycle and receive my next to the last infusion.  I am getting an extra week off because of the Memorial Day holiday.  I’ll be available but they won’t.

Isn’t it interesting that the health care industry, while not shutting down entirely, pairs back on its staffing and services rendered during holidays?  It’s interesting to me because I’m unaware of any illness or health condition that takes a break during holidays.  Generally they seem to keep eating away at our bodies without concern to what day of the week it is or, for that matter, what month or year it is.

I guess I shouldn’t be too overly concerned about the extra week off.  I mean I am concerned, for me, but at the same time I am not.  Makes no sense huh?  Look, the world tells us we have to drink X number of glasses of water each day, that depending on our age and general condition we should limit our daily caloric consumption to X calories a day.  We should eat at least good meals a day and yes that includes breakfast.  Alternately we could eat multiple healthy snack sized meals throughout the day.  We should have X number of servings of fruit, X number of vegetable servings, X amount of this, X amount of that, the list seems endless.

If you are like me you’ve probably broken one or more of the “recommended” rules.  You might have skipped a meal, or two or, gasp, an entire day.  You might not have drank the requisite amount of water for the day.  You may have gone over on your caloric intake.  You may be a bad bad person, like me.  So skipping a week during chemo may not, as the doctor said, be a big deal at all.  I don’t know.  All’s well that ends well right?  I guess I’ll reserve any annoyance for the unexpected possibility that they need to do another round of chemo just to finish the tumor off.  Another round needed because of all the starting and stopping and week skipping that was done during the last half of my total chemo therapy.  We’ll see.

For now I’m going to do the countdown thing and stick to it.  I have two more infusions to suck up.  The first will be the combination of Carboplatin and Gemzar, the last will be the Gemzar by itself.  Then for an as yet determined amount of time I’ll do nothing other than let the chemo finish cooking in my system.  I imagine after some period of time they’ll have me back in for another CT scan to look and see if the tumor is gone and that no other tumors have popped up.  I doubt the later has happened as the chemo isn’t targeted only to the tumor in question but makes its way throughout my body.

I guess we could come full circle on this and inquire whether or not our insurance company will pay for a PET scan of my body.  They refused to at the very beginning for the most bizarre reasons.  They say I have bladder cancer which is true.  They say that Urologist generally don’t exhaust other means of determining whether there is cancer present, means such as performing an endoscopic examination of my urinary tract including my bladder.  That I don’t have a bladder, that the urinary tract in question is an artificial one constructed by a surgeon, that the cancer, while pathologically identical to the original cancer they removed from my body back in 2004, has migrated to my lymphatic system and is now present in a lymph node, doesn’t matter to the insurance company.  But what are we going to do about it?  We argued with them and lost.  I’m not sure I have the energy, desire or resources to hire an attorney to go after them over a procedure that only cost $2,000 or so to perform.  If they’d prefer to pay for a more expensive CT scan well okay then, go for it.

I am very tired right now.  I was equally tired yesterday.  I don’t know what’s going on with me that is making me tired.  I know that I usually get tired three or four days after receiving a double chemo (Carboplatin and Gemzar).  I was also nauseous the day I received it last week.  That both the nausea and exhaustion has lasted into the next week’s treatment is a first for me.  Maybe it’s because of the starting and stopping I’ve gone through over the past month or two.  Maybe the cumulative effect of chemo is simply catching up with me.  I don’t know.

I just know that I only have two more scheduled infusions left for me and that I want to get them behind me.  I want to be “normal” again.  I want my food and drink to not taste funny or bad.  Most of all I want to not worry so much about all of this.  I want to relax and not feel that I have to will myself to keep moving.  I just want to be normal again.

Tanning salons are a big rage but there’s a danger to being a ‘tanning salon junkie’ as you will see.  The 25 year old daughter of my wife’s co-worker was recently diagnosed with a Clark level 4 melanoma.  She’s a tanning salon regular.  She noticed that she had a blemish on her face but didn’t really think it was much to be concerned about.  She’d had her share of blemishes,  so she really didn’t give it much thought.  Her long awaited vacation to Mexico was on the horizon and she didn’t want to bother trying to get a doctor’s appointment, it was probably nothing…

When she returned home, the blemish had gotten larger and she became alarmed.  She made an appointment with her doctor who had her see an oncologist.  The bad news was that she had contracted skin cancer.  Last Friday she had the surgery to remove the melanoma.  Unfortunately there is also the chance that it could have infected her lymph nodes.

I never did ‘get it’ about tanning.  I’ve been pasty white all my life with sometimes brief occurrences of red skin from sunburn only to go back to being pasty white in a few days.  My oldest daughter, who is also 25, is a tanning salon regular, too.  She even briefly worked at a tanning salon and was always thrilled to show me the big ‘bargains’ she got on tanning oils that always smelled like fermented yak cheese and cost a week’s pay.  And, she tells me, tanning is beneficial to your mental health; tanning releases serotonin and makes you feel better!  Don’t they make drugs that do the same thing?  Me, I’d rather have a Martini (Beefeater on the rocks with queen olives, please!).

We went on a cruise that took us to Cozumel, Mexico last March.  I developed sun poisoning on both arms and the tops of my ears.  The sun was magnifying glass intense and being from a Northern clime, my skin wasn’t ready for the UV radiation bomb it took.  Like a dope, I didn’t bother to put on sunscreen until my wife nagged me to slather some on.  But by then it was too late.  My arms became covered with reddened, fluid filled bumps within hours.  They looked like red warts and itched like a zillion mosquito bites.  It took nearly 2 weeks for them to heal and for me to go out in public wearing a short sleeved shirt.

I got the news today that the daughter is cancer free and it didn’t spread to the lymph nodes.  The downside is that she’ll have to take tests every 2 years to make sure that it hasn’t come back.  Small price to pay for a young woman but a large worry for the future.  I just hope my ‘tan-happy’ daughter will learn a lesson from this episode in life.  I know I did.

]]> http://leakycreek.wordpress.com/2009/08/20/philly-livestrong-challenge-coming-up/ Thu, 20 Aug 2009 13:13:29 +0000 Mary K. Smith http://leakycreek.wordpress.com/2009/08/20/philly-livestrong-challenge-coming-up/

John giving Nathaniel a kiss after completing the 2008 Philly LiveStrong Challenge.

A look back on my LIVESTRONG Challenge
Posted on Tuesday, December 02 @ 21:09:15 EST   [ Edit | Delete ]
Topic: John P Smith II

First of all, I want to apologize for taking so long to write this final summary of my LIVESTRONG Challenge experience, which took place August 24th near Philadelphia. As you may remember, the LIVESTRONG Challenge is the Lance Armstrong Foundation’s signature fundraising event inspired by the hope, courage and perseverance of Lance and the nearly 12 million Americans affected by cancer. Each year thousands of people take the Challenge, uniting individuals to stand together to fight cancer. This was my first year participating, and I chose to ride the 100 mile option. It was both a personal challenge and a way to honor those affected by cancer.

I learned of the LIVESTRONG Challenge last year, in the aftermath of my surgery to remove the malignant melanoma from my chest and as I was becoming very interested in cycling. It seemed like the perfect opportunity to take my new found love and use it, not only as a way to show cancer that it cannot defeat me, but to honor the memory of my parents- both of whom I lost to cancer, and to do something to help eliminate this terrible disease from the face of the Earth.

So I registered in January 2008 and sent out my first round of emails to friends, family, and coworkers. The response was tremendous and by the end of the month I was well on my way to my fundraising goal. As the year went by, I continued to send out updates of my progress as I worked on building up my cycling endurance, and the donations kept coming.

It was my goal not just to finish the Challenge, but to do so strongly and in a reasonable time. My first ride of the season was on March 23rd and I did my best to ride as often as possible. I rode into work each shift along the B&A Trail, from Glen Burnie to Annapolis which would take about an hour and each week I tried to get in a longer ride that I had the week before.

I was doing pretty good until July when cycling took a back seat as the birth of our son Nathaniel approached. As Mary got closer to her due date, I quit riding the bike into work in case I needed to make a fast getaway. Prior to the day of the Challenge the only ride I had on my bike in two months was 80 miles on August 9th as I participated in the Kent County Lions Club’s “Ride to See” which took me from Galena to Rock Hall and back.

The lack of riding made would make it a tough ride, but I was determined not to quit and vowed that no matter what, I was going to do what I had promised everyone. Looking back, I think it made the whole experience that much more rewarding for me. I battled cramps for the last half of the ride and there were many times when I thought I wouldn’t be able to continue. I stopped frequently to catch my breath & stretch. I cried. I cursed myself. I pedaled on…

You can see the data captured by my Garmin cycling computer at the following link: http://trail.motionbased.com/trail/invitation/email/accept.mb?senderPk.pkValue=145659&unitSystemPkValue=2&episodePk.pkValue=6613791

The support for the race was tremendous. There were police officers at all the intersections and the rest stops were well staffed. Many of the residents were out and cheering, and one gentleman was offering free repairs. It just so happened that the first time I had to stop because of the cramps was just down from his house. Before I knew it, he was there asking if everything was okay. It meant a lot. Like the day before, when we went to pick up my registration packet, and I stepped up to the volunteer who asked for my name to check me in. I told her, she looked down on her sheet, found my name, scanned across, and let out a warhoop of “Twenty-Eight Hundred Dollars!!” which was followed by the cheers of all of the other volunteers there. I had to smile.

That’s right. I reached, and exceeded, my fundraising goal of $2,500. The response from my friends and family was remarkable. Many people chose to give a lot more than I thought they would. To those of you who donated, I thank you very much for understanding how important this cause & event are to me and greatly appreciate your contribution. Donors can expect a gift package in the near future as a token of my appreciation. To those who were unable to donate, your words of encouragement and well wishes served as motivation to get me out on the bike and helped strengthen my desire to do the absolute best I could in completing the Challenge.

You can see who donated and check my final total at last year’s fundraising page: http://philly08.livestrong.org/johnpsmith2 [MKS comment - link no longer active]

With all of the stops, the ride took me over eight hours. Not exactly what I was shooting for… I finished just before the cutoff time, which served as my sole motivation in the last 18 miles. I pushed myself unbelievably hard to make sure that I finished under my own power and wasn’t picked up by the “broom wagon.” As I passed people I shouted words of encouragement to them. I stopped only briefly, just before coming onto the campus of the Montgomery County Community College, which hosted the event, so I could call Mary and let her know that I was almost to the finish line so she could be sure and see me.

Mary had her own adventure that day and we asked an awful lot from Nathaniel, who was just over a month old at the time, but seemed to tolerate the long, warm day well up until the ride home. It was a long day for us all, but well worth the effort– Not just our effort, but the efforts of all those involved.

Participation at the Philly Challenge was astounding as nearly 5,000 participants and more than 700 volunteers came out and raised just shy of $3 million. Because of the fundraising efforts of all participants in each of the four Challenge locations of Portland, San Jose, Philadelphia, and Austin, the 2008 LIVESTRONG Challenge Series saw 17,772 participants contribute over $9.7 million to the fight against cancer!

The net proceeds raised by LIVESTRONG Challenge participants directly benefit the Lance Armstrong Foundation and serve to support their mission to help inspire & empower cancer survivors to live life on their own terms, and help contribute toward cancer prevention, research and access to screening and care, hopefully making life better for the more than 12 million Americans currently stricken with cancer.

If you’d like more information on the Challenge or the Lance Armstrong Foundation you can visit their websites at http://www.livestrongchallenge.org/ and http://www.livestrong.org/.

Registration for next year’s event opened today, and I just finished signing up.

This year I won’t be asking anyone for donations, I think it’s too much to ask with the state of the economy. I have toyed with the idea of getting a bike store to donate a bicycle to raffle off though, so we’ll see how that turns out. This year it is more about a personal goal. I need something to focus on and take my mind off what I have learned since August.

It seems that cancer can’t get enough of me.

In September, less than a month after the Challenge I went to my oncologist for a routine follow-up just like I had done every three months since the surgery. If everything was clear, I would get to come every four months. It wasn’t. As he always does, Dr. Elias checked my groin, armpits, and neck to feel for swelling in my lymph nodes. This time he thought he felt a lump under my right arm. He wanted me to come back in two weeks, so he could check again.

I was worried, but not overly worried because when I reached under my arm I couldn’t feel anything. I kept feeling under my arm as the days went by. The weekend before we were due back to the doctor’s office Mary & I were watching an episode of “House.” The fictional doctor was diagnosing a patient in Antarctica via webcam. He was guiding her through a procedure when she felt a lump under her skin. Mary wondered if I could feel anything… I scoffed and said “No!” knowing I had just felt under my arm a couple days before. I reached under my arm again, but this time I could feel something. And not only could I feel it, but when I raised my arms over my head, I could see it, the size of a walnut.

We returned to the doctor on October 8th. It was a short visit. He told me that he was sure that it was my melanoma that had spread. They asked me when I wanted to schedule the lymphadenectomy. I answered ‘the sooner the better.’ They booked me for the morning of the 13th and sent me to the hospital’s lab for blood work, then up the road for a PET/CT scan. It was a long day. Nathaniel is a remarkable baby. He was sooo good…

The surgery went well. The doctor said that the PET/CT scan was clear except for the one area, and that it looked like it was just one lymph node that was affected. I wondered why it spread when my original Sentinel Lymph Node biopsies were clear. He explained that the test sometimes fail to show anything even though it was there. They’re working on a better test, using Stem Cells. They added my case to the list of ones to retest. With any luck, my misfortune will help someone in the future.

I went back to him on the 22nd and everything was healing well. I’ve continued to heal well and will return to work on December 8th. It will be good to get back. The plus side is that I’ve gotten to spend some wonderful time with my son.

Hopefully this will be the end of it… Melanoma is the deadliest skin cancer. If it is caught early, before it gets too big, then removing it typically solves the problem. If it goes too long, gets too big and spreads then survival rates go down dramatically- 25-60% (5yr) for Stage III, which is what I am now. There are no approved treatments beyond surgery. Chemo/Radiation are not effective…

They offered me the biotherapy Clinical Trial again. The last time I decided not to do it. The trial lasts two years. For the first year I would have to give myself daily injections of medication that is meant to boost my immune system. Three times a month I would have to get blood drawn so they can track the results. Each month I would have to go to the doctor’s office to get injected with a vaccine that was made from my own tumor. The idea is to teach my immune system to fight and kill the cancer cells. It sounds good in theory. I dread having to do it. The side effects are supposed to be minimal, tolerable, and a whole bunch of other things. I feel great right now. Even the mildest side effect, the feeling of being “run down,” would make me feel worse than I do right now, and I despise having to feel “sick.”

I worry how it will affect my desire to do the things I want to do, if it’ll make me feel like not riding my bike, if it will adversely affect my ability to do my job. I don’t want to ask my co-workers to pick up my slack. I don’t want them to have to cover for me. I don’t exactly have the type of job where I can just “take a break” if I feel like I need one, as the clinical trial nurse suggests, and I don’t want that type of job either. In short, I don’t want cancer directly or indirectly through the treatment of it, to run my life and it tears my insides out to think that it is going to.

Nor do I want cancer to make Nathaniel grow up without a Dad, and that fear trumps all the others. So I’m going to do the trial anyway because it’s the best option I’ve got. I’m going to stop frequently and catch my breath. I’m going to cry. I’m going to curse myself. And I’m going to pedal on…

Thanks again for your generosity this past year and understanding how important this cause and event are to me. Together we made a difference! I’ll be sure to keep in touch and let you know how things go in 2009.

And again, in John’s words, from his 2009 Philly LiveStrong page

Unite with me in the cancer fight and support my fundraising efforts

I learned of the LIVESTRONG Challenge during the latter part of 2007, in the aftermath of my surgery to remove a malignant melanoma from my chest and as I was becoming very interested in cycling. It seemed like the perfect opportunity to take my new found love and use it, not only as a way to show cancer that it cannot defeat me, but to honor the memory of my parents- both of whom I lost to cancer, and to do something to help eliminate this terrible disease from the face of the Earth.Although I was too late for that year’s Challenge, I registered in January for the 2008 edition and sent out my first round of emails to friends, family, and coworkers.The response from my friends and family was remarkable and I exceeded my fundraising goal of $2500. Not bad for a first timer, if I do say so myself. The birth of my son made cycling take a back seat for a while and I wasn’t as prepared for the Challenge as I would have liked. The lack of riding made it a tough ride, but I was determined not to quit and vowed that no matter what, I was going to do what I had promised everyone. Looking back, I think it made the whole experience that much more rewarding for me. I battled cramps for the last half of the ride and there were many times when I thought I wouldn’t be able to continue. I stopped frequently to catch my breath & stretch. I cried. I cursed myself. I pedaled on… Little did I know, that I was doing it while cancer was again growing in my body. In September, less than a month after the Challenge I went to my oncologist for a routine follow-up just like I had done every three months since the surgery. If everything was clear, I would get to come every four months. It wasn’t. My melanoma had spread and I had a lymphadenectomy in October. Since then my cancer has progressed despite treatment with a clinical trial. I now have tumors in my lung, liver, kidney, and bones in addition to lymph nodes in my neck & groin. My doctor has put me off work and told me not to exert my legs. The tumor in my pelvis will probably make sitting on a bike impossible. I underwent surgery at the National Cancer Institute but they found additional tumors which precluded their recommended treatment and am now undergoing high-dose IL-2 treatments at Johns Hopkins. My hope to be healed & better in time for the Challenge in August. I doubt I will be able to ride the 100 miles I’ve signed up for, but hope that some of my friends will ride or walk for me. Check out TEAM SMITTY to see who has committed to helping me out!

 

So… a few days before the challenge, TEAM SMITTY is up to 24 members & has raised at least $6566 (I don’t believe the money from the Stan & Joe’s fundraiser has been added yet.)  All I can say is JOHN WOULD BE SO PROUD!

I’m just a little shy of my $500 fundraising goal, but hopefully I can get there.

Well, that’s it for now… Nathaniel wants up, the horses need to eat…

(hopefully, I can add some more links in later, but I need to get kiddo up) *edited to add links 13:40 AM 8-21*