Brothers And Sisters

"Something happened a long time ago in Haiti and people might not want to talk about," Robertson said Tuesday on his 700 Club show. "They were under the heel of the French, you know Napoleon the third and whatever. And they got together and swore a pact to the devil. They said 'We will serve you if you will get us free from the prince.' True story. And so the devil said, 'Ok it's a deal.' And they kicked the French out. The Haitians revolted and got something themselves free. But ever since they have been cursed by one thing after another." - source : David Waters of The Washington Post

So......how does Pat Robertson have first hand knowledge of the devil's communications?

The Previous Day Is Under Review

Here's the thing.

There wasn't a bone marrow biopsy yesterday. My mistake. There will be one soon, but not yesterday.

Still met with the Nurse Practitioner and told her to prepare herself for when it does happen. She had the nerve to tell me, "You are one of the more unique patients we have." She did some diplomacy and said, "We enjoy your visits." Sure.

There was blood work yesterday and for the first time in ages, pretty much all of the blood parts they monitor were normal. Platelets are still below normal, but the Nurse Practitioner said they are the last things to bounce back. However, they are at a level that is considered "normal" at this point in the process. She said my blood work results were a strong indication that my stem cells did come back and do their job.

Yesterday was also potentially my last infusion of anything...ever. They have a bell that they ring in the clinic when someone has their last infusion. I declined it. They understood. I'm not a "bell ringing" kind of guy. They did it for someone else yesterday and we all applauded for them.

See you around...just not as often. I got stuff to tell you. Stuff I've read and heard about treatments/stem cell research, etc. I'll pass it on at least on a weekly basis.

Tomatoes

Fresh ones. I miss them. They'll be back in a few months.

Also, a clever title to get you to read today's post.

Wanted to share this with you from cancer.net

"The one-year relative survival rate (the percentage of people who survive at least one year after the cancer is detected, excluding those who die from other diseases) of people with NHL is 80%. The five-year and 10-year relative survival rates are 65% and 54%, respectively."

I'm sharing this not to ask you for a pity party. Rather, it's to tell you not to be misled by these kind of statistics that you may come across. You see, the 5 year statistic only applies to someone who was diagnosed 5/10 years ago. In addition, the statistics quoted are from 2008. Get it?

With advances in treatment since in the last five years, the five-year survival rates are most likely trending upward. I have confirmed it with the cancer professionals with whom I've discussed it.

I'm just sayin.

Now...on to the bone marrow biopsy and IVIG appt. in a few hours.

If the Nurse Practitioner doesn't laugh today, I'm going to have to let her go.

Bookends And What To Do

Was thinking the other night about what to do about the blog. There really isn't anything to tell you about my process until the next set of scans or I come up with something witty.

Then...yesterday, I "met" two people on-line via a Leukemia and Lymphoma Society connection I have established through LinkedIn. One of the individuals is starting her first round of chemo (this is her blog) on Friday and the other individual has been treated for reoccurring lymphoma for 9 years. We shared some knowledge gained from our experience.

It felt good to share the information. I haven't been to any in-person support groups since I was diagnosed, and I most likely will not. I have an aversion to them that is my own personal opinion and I ask that you respect that, as I will respect anyone who can be helped by attending a support group. I'm more of a "one on one" kind of guy about that stuff. That's all I got to say about that.

In the spirit of sharing information, I will pass this link on to you. It's from cancer.net which is "Oncologist-approved cancer information from the American Society of Clinical Oncology." Knowing what I know now, it's also information that is approved by me - if that means anything to you.

That'll Be Me

Called Virginia Blood Services yesterday to present an idea I had to them. My idea was to ask their permission to allow me to walk into donation centers every so often and personally thank donors while they are in the process of donating. Still working on that concept with them.

However, when you donate blood with Virginia Blood Services, within a few days after your donation, you receive a phone call with a recorded voice thanking you for your donation. The person on the recording is someone who directly benefited from your donation or has a relationship with someone else who has.

I told them how I was a regular platelet donor for 10 years prior to being diagnosed and then after being diagnosed, I was a recipient of platelets, plasma and whole blood. They asked if I would like to do one of the telephone recordings and as of this minute, we are working on the script and I will be making the recording in the next week or so.

I'm kind of tickled about it. It's an activity that will help me stay on the horse for awhile.

Another activity on the horizon....let's just say, "Poor Nurse Practitioner that is doing the bone marrow biopsy on Friday. She can't see what's coming." Just to calm your nerves, it won't be indecent, but will be very funny. As a matter of fact, I'm willing to bet no patient has ever done it before.

"Then The Day After That "

"And the candles in our hands
Will illuminate this land
If not tomorrow
Then the day after that
And the world that gives us pain
That fills our lives with fear
On the day after that
Will disappear
And the war we've fought to win
I promise you, we will win
If not tomorrow
Then the day after that
Or the day after that"
("Kiss of The Spider Woman"/John Kander and Fred Ebb)

So what happens the day after getting relatively good news from the doctor about your condition?

You toss aside some of the things you had been thinking about for awhile. Some of the things that you thought you may have to plan for.

You realize that there is a torrent of energy that was inside of you waiting to be released, but it was being suppressed by what you were focused on.

That to prevent the release of the energy is denying yourself, and the others that share the planet with you, of yourself.

You accept that everything could change again in a few months when you have the next round of tests and scans. However, you don't have to get of the horse until then.

You think of ways to torment the Nurse Practitioner who is going to perform a bone marrow biopsy on you at the end of the week. Remember, however, she's the one with the nasty drill bit-like needle in her hand while you are laying prone on the exam table.

There's other stuff that I'll post when I think of it.

Here's something that came out of yesterday. I was talking to one of the nurses about how I believe there is a gap I've observed in the process when one is diagnosed and then treated for cancer. There is time spent up front consulting with the doctor and other staff who prepare you for the treatment to come.

Then, one day you show up to the infusion room or the hospital for treatment. At that point, you have yet to meet the people who are going to be responsible for infusing poison (in the case of chemo) into your system. You would think that they might be a bit sadistic as they make a living doing exactly that. I'm here to tell you that is not their personality makeup. They are very kind and compassionate people who will do all they can to make it a comfortable experience for the patient.

How do we bridge that gap? I recommend the use of former patients who have established good relationships with the folks in the infusion/treatment areas. The former patient could introduce the new patient to those folks and ease the transition. I've offered myself to the folks at the clinic and the hospital to help with that.

If you as a new patient, or if you as a family member/friend of a new patient have not met the treatment staff in advance of your scheduled treatment, ask if there is a former patient who would be willing to introduce you. I'm making that another one of my missions in life. To establish "transition teams" as SOP for all clinics and hospitals. The thought is now out there. You can have it to use for your benefit.

It's a candle I'm placing in your hand.

"Perhaps I Can Help You With That Hump"

PET scans from last Tuesday have been reviewed (I actually looked at them on the screen. Amazing stuff). The lump that the surgeon noticed a few weeks ago shows no activity and the remaining scar tissue, that was the alien, is slightly smaller in size. The level of activity that was apparent in the November PET scan has reduced minimally - but still has reduced.

At this point, the oncologist with whom I met at MCV is of the opinion that we are in a "watch and wait" mode. What that means is that due to the continual trend of reduction of the size of the scar tissue and reduction of the glowing activity in the scar tissue, we will hold off on any surgery or radiation for now, pending the outcome of future scans and tests that are part of the regular follow up schedule. My next set of scans would occur in February/March.

My next "test" is a bone marrow biopsy that is scheduled for this Friday. The Nurse Practitioner, that administers the biopsy, and I get along just fine during the procedure so I have no anxiety about it at all. It's a difficult procedure for some folks, but I'm good with it.

So....I'm back at it full tilt. I may not even have to get re-immunized. I asked the doctor about it today and he said that autologous stem cell transplant patients typically don't require re-immunizations but that he would confirm if I needed them. Interesting. It makes sense that I wouldn't need them, but I'd rather confirm whether I need them or not.