The Next Last Time

The next time I use this piece of luggage, I will be able to say that the last time I used it was for a trip to Ocean Isle Beach, NC from October 21-25. To prove it was there, I took this picture from the balcony of my hotel room with the Atlantic Ocean in the background (a day or so before Hurricane Sandy started affecting the waves).

The last time I used this piece of luggage, prior to the trip to Ocean Isle Beach, was when I loaded it to maximum capacity for my stay at the L'Hotel BMT at MCV in July/August 2009. I didn't really need to use this bag for the trip to Ocean Isle, but I did anyway. All said and done, it was perfect to take along because of all the many storage features it contains and as a result, almost everything fit in it vs. taking multiple smaller pieces of luggage.

The last time I was at Ocean Isle was well before "the alien" came to visit. I had been hankering to go to the beach while I was receiving treatment for "the alien," but just never had the opportunity to get there. Ocean Isle Beach is one of my favorites as it is not so congested and fall is a perfect season to go. And, with a view like the one below (another picture taken from the balcony of my hotel room), how can you resist?

It was great to be there and great to complete another circle that needed to be closed. I've learned it is important to do that.

Didn't draw one in the sand, though.

Let Me Make One Thing Perfectly Clear

Yesterday was the second round of "childhood immunizations." Not a big deal at all. It cracks me up when the nurse says, "Sorry for the sting," before she puts the needle in my arm. I reference the discomfort of regular biopsies, bone marrow biopsies and port removals as discomfort I did not enjoy.

As you can see from the above chart (it is mine and everything), I am halfway completed with the immunizations. Some of you may recall that when you received your polio shot way back when (around the same time period I received mine as a child), the polio vaccine left a scar on you. It doesn't happen anymore. In fact, all of the shots I received yesterday were given in my left arm. As I type this, I can feel where they were given, but no side effects or discomfort.

Also, you may see an influenza vaccine was also given. That is not to replace the annual flu vaccine that is due this year.

5 of the 8 vaccines I will receive in the process will require multiple administrations as you can see from the white boxes.

Here is a "trick of the trade" I have learned. When vaccinations are given, the person giving the vaccine will usually draw the vaccine from the bottle with a larger needle, then remove the needle from the syringe and replace it with another needle that will be used to inject the vaccination. When I received my swine flu vaccine in 2009, the person giving the vaccine used the same needle to withdraw and administer. As a result, the needle "stung" more than usual. When I asked about it, the person told me that the health department where I received my vaccine only used one needle in order to save costs. However, the main benefit to the patient for the "needle switch" is that the needle will not hurt as much because it has not been "dulled" by piercing the membrane in the vaccine bottle. Kind of the same concept as why a dull knife hurts more than a sharp knife when it cuts you.

My biggest complaint, however, is that since I am receiving my childhood vaccinations again, you would think that afterwards I would get some sort of treat for being a good patient.

So begins my campaign against Chronological Bias.

"With Six You Get..."

(Photo credit: Turner Classic Movies)

I had the annual follow up appointment on Friday, August 10 at MCV. When the pre-transplant coordinator saw me sitting in the waiting area, she asked, "Why are you here?" I told her I was there for the annual oil change and tire rotation.

The appointment is the final round of check-ins and exams for now. Six months from now is blood work and check up with regular oncologist and that is it. No scan, bone marrow biopsy or pulmonary function test until a year from now.

Between now and then, I will be going through a regimen of childhood vaccinations. During my appointment, I received 6 vaccinations for Tdap ( Tetanus, Diptheria, Pertussis), Haemophilus Influenzae Type b, Hepatitis B, Meningococal and Polio.

When I asked why the protocol had changed regarding vaccinations for autologous patients,  I received the following answer (and I paraphrase): The stem cell transplant protocol has only been utilized for 30 years. Therefore, as new data is collected, protocols change. In the past, survival rates for the procedure were lower than they are now. As a result, patients were rarely (if ever) at risk for contracting any of the ailments that childhood vaccinations are intended to prevent. Since polio, whooping cough, measles, mumps, etc. still exist in the world due to several reasons, those with immune systems that were severely compromised need to be protected from them. As I said to the doctor, "It would stink to die from cancer, but even more to die from meningitis after you were cured of cancer."

So, there are more vaccinations to receive down the road, but it's OK by me.

RE: The Carolina boys, Bo and Hunter; they are doing well. Bo had his most recent round of testing last week and he remains cancer free. Hunter has his coming up, but in Facebook pictures that his mother posts, he looks great!

I have to share this comment from Bo. His mother sent it to me last week. "Bo said to the lady at registration, 'Sometimes I’m glad I got cancer because I got to meet some really awesome people because of it'.  Made me proud and sad at the same time." 

Well done, Mr. Baker.

It's A Wrap

(Photo credit: "Stripes" / Columbia Pictures / 1981)

This round of testing is all done. Visit with the doctor is also done. One thing remaining is the annual oil change and tire rotation at MCV (the official designation is an annual checkup, but how boring is that?).

One thing the folks at MCV did tell me in advance of my appointment is that they have changed their protocol and I will now have to get all of my immunization shots again (i.e. mumps, polio, etc.). Not what I envision when they talk about "second childhood," but anything for an excuse to misbehave some more. I suspect I understand the reasoning behind the change in protocol, but will confirm after I meet with them next Friday.

RE: Bone marrow biopsy this time. I actually got to experience the process twice. The first attempt was unsuccessful due to the fact that the point of access had to be shifted. Reason is that if the same point is accessed, then the sample accessed may not be "old timber" bone marrow, but rather "new growth" bone marrow that regrew after the last sample was retrieved. It is important to collect a sample that has a history of containing cancer vs. a newer growth sample that was never affected. In changing the access point, there was more discomfort as there was more tissue to move through. The kind person performing the procedure made the call to discontinue the procedure and reschedule me to have the procedure done via an X-ray guided process. When I asked why she didn't try the other side, she responded, "I had already put you through enough discomfort, I didn't want to add any more discomfort to your day." Honestly, it wasn't awful. Just some weird discomfort in a weird location.

Second attempt went fine and the doctor performing the biopsy did a great job. I got to meet some more people in the "business." The bone marrow sample he collected was at least 1.5" long and he let me look at it. I consider myself lucky in that I can say I am in a select group of people who have actually seen their bone marrow. I think it is kind of cool to see the "nucleus" of your own body. What others see of me may not be all that, but I do think I have interesting, and very attractive, bone marrow.

The doctor visit was Thursday of this week and the results from all the testing is "all clear." No abnormalities to report. Blood work was all in the normal ranges. Platelets still aren't back to the days before the arrival of the alien, but they probably never will be again. That's the facts, Jack. However, platelet counts can be altered by any number of reasons and not just the history of an alien or the concoctions that kill them.

So that's it for now. Next appointment isn't until February and there will be no more "fun" testing until a year from now.

I just noticed that it was three years ago this very day that I came home from my "summer at the spa." Ain't that just somethin'.

Cool stuff on the horizon for all of us is this. Wonder if they will find any aliens?

Early Morning Drinks At My House Tomorrow

They will be them crazy banana flavored barium sulfate suspension drinks. Today, when I picked them up, they asked me what flavor I would like. Since it is summer and all, I asked if they had any margarita flavored ones. Who knows, maybe one day they will.

The schedule is as follows: Tomorrow - CT scan; Next Monday - Bone Marrow Biopsy; Next Tuesday - Pulmonary Function Test; July 26 - Blood Work and visit with the doc; August 10 - Annual follow up visit with the folks at MCV.

Then....there will be no more barium sulfate ingesting, CT scanning, pulmonary function testing, and bone marrow exploration until next year. I will still have blood work and a doctor visit every six months (poor, poor doctor). I graduate into the once a year testing for all the other stuff after this round. Then, I will only have to go through the complete round of testing in July 2013 and 2014; which will wrap it up and I will have official permission to use the other "C" word. Cured.

Cured bacon is also tasty.

Cringing Curmudgeon

To others, I have expressed my desire to one day be labeled a curmudgeon. Not so much in the miserly definition, but the surly one. Some (primarily those who have known me the longest) have responded, "You don't have to wait. You already are." Some (who haven't known me that long) have responded. "You are too young and too nice."


However, today I am feeling a bit curmudgeonly, especially when I read the news about a certain member of the media associated with a major network morning show. I wish her well and am sure she is a very nice person. I respect her for bringing her situation to light. I would like to respond to some comments I have read in the online CNN article (which appear in green type below).

" I've always been a fighter, and with all of your prayers and support, a winner," Roberts said in an online message Monday."  - Nice comment from her. She is correct about the significance of prayer and support.

"Then a few weeks ago, during a rather unpleasant procedure to extract bone marrow for testing, I received word that I would interview President Obama the next day," Roberts said. "The combination of landing the biggest interview of my career and having a drill in my back.." - This is the kind of dramatic statement that can hinder others from wanting to undergo a bone marrow biopsy. While it isn't the most pleasant of experiences, it isn't the worst thing that can happen in life (I've had 7 since November 2008 and am scheduled for 3 more between now and July 2014) and is a very critical diagnostic procedure to determine the extent of the disease. There is a drilling process involved, but it does not require an industrial 20 volt variable speed reversing drill with impact driving capabilities. Trust me, it's no walk in the park for the person who had to administer it. They understand that it can be uncomfortable, and they do all they can to make sure the patient is comfortable throughout the procedure. As for me, I do not experience prolonged discomfort throughout the procedure, but rather, a few times of discomfort  that are equivalent in discomfort to hitting your funny bone. For myself, prior to my first bone marrow biopsy, the worst part was imagining what was going to happen vs. what actually happened.


It can be brought on by chemotherapy and radiation, treatments that Roberts underwent after her breast cancer diagnosis. "Sometimes the treatment for cancer can cause other serious medical problems," She said - Note the second word in the statement, "can." It is likely that her previous treatments could have lead to her current condition, but I would like her to state, if knowing what she knows now and she had to do it all over again, what direction would she take with her treatment? I know that the possibility exists that I may face some "benefits" from my treatments down the road. However, at the time of my diagnosis, I felt so lousy, I was willing to do whatever it took to feel better. In an ideal world, chemotherapy and radiation treatments would not exist. The immune system would attack and end cancer in the body. Making broad statements that, yet again could steer someone away from adding quality time to their life is borderline irresponsible for someone in a position of responsibility to report facts to the public. I understand the emotion involved when someone is diagnosed with a catastrophic illness. However, when you are in a position that your statements can be distributed to the masses, measure your words carefully or keep them entirely in the bucket.


While information found online about MDS can be "some scary stuff," Roberts said her doctors told her it doesn't apply to her. "They say I'm younger and fitter than most people who confront this disease and will be cured." - Geez already. You work for a news organization and you went online? Don't you have medical talking heads on staff? Please tell me you went to legitimate sources. And the whole "younger and fitter" stuff is good news for you, but what about older folks? What would be your recommendation for them?


That search is conducted largely through the National Marrow Donor Program, which maintains a registry of bone-marrow donors. Sally-Ann Roberts said her sister is hoping to draw attention to the registry and encourage people to join."It's very simple to be part of the registry," she said. "I just had a swab, a cheek swab, and they test that and that's how they determine that." - Thank you. Something good can come out of all this if you say these kind of things. And just to help you out, the legitimate web site to learn more about marrow donations is: www.marrow.org

I will never minimize the impact of a medical diagnosis on someone else, no matter whether the diagnosis is a common cold or life threatening illness. However, as someone who enjoys live theater, I choose to experience drama while gazing at a stage.

Was It Just Me That Heard That?

Tonight, I saw a commercial on TV for a cancer treatment center that I will not name here. I consider myself somewhat knowledgeable of what they speak. I wonder how much of what they present in their commercial is lost on the general public. I would suspect that due to the saturation of their commercials, should someone be diagnosed with a form of cancer, if that particular facility is not available in their area, they may consider that facility for a second opinion.

However, one part of their commercial jumped out at me, causing me to follow up. They mention that on their website, you can find survival rates for various cancers. I checked it out. Some are listed on their website (and that part of their website is not necessarily easy to find) and a large amount of them are not. Mine was not. I did peruse the stomach cancer link and noted that the statistics are only of their patients and the time period is from 2000-2005.

That doesn't work for me. That is a period of 7-12 years ago. Too much has happened in cancer research since then.

I recently spoke to someone who was about to begin chemotherapy and radiation treatments for throat cancer. I advised him to 1) stay off the internet except for sites recommended by his doctor; 2) do not read published material that has a copyright date of more than 2-3 years in the past as things are changing that quickly; 3) do not concern yourself about how someone else reacted to treatments that may be similar to yours as the treatment process may not be personalized to the individual, but since there are enough variables in physical makeup between each patient, "portion sizes" and reactions will vary by patient.

I was once annoyed (and still am) by what cancer does to the individual. But what troubles me even more these days is what individuals, who listen to erroneous information, allow cancer to do themselves.

"We're just knocked out. 
We heard about the sell out. 
You gotta get an album out. 
You owe it to the people. 
We're so happy we can hardly count. 
Everybody else is just green, 
Have you seen the chart? 
It's a helluva start, 
It could be made into a monster 
If we all pull together as a team. 
And did we tell you the name of the game, boy, 
We call it 'riding the gravy train' " - Roger Waters