Isobars And Biopsies

In Richmond VA, we got a pretty good amount of snow over the weekend. Areas north of here were projected to receive a dusting and received several inches.

Mark Twain said, "Everybody complains about the weather but nobody does anything about it.”

I took a meterology class in college and while I'm not NOAA certified, I do understand that the whole weather forecasting thing is difficult. Weather systems can seem to be very predictable and then, Kablooie!, they take a different path or they diminish or intensify.

Which brings me to my point.

I read on a medical website that 1 million cancer cells are about the size of a BB (you know, what you shoot out the barrel of a "Red Ryder carbine-action, two hundred shot Range Model air rifle with a compass in the stock and a thing which tells time").

I'm amazed that even though all the testing devices seem pretty technologically advanced, there is room for error in the whole cancer testing and diagnosis process. I'm grateful that my folks nailed it and continue to do so. It can be frustrating as a patient if doctors delay making a decision on treatment pending further testing, but I think I understand why they do.

However, as a patient, you are not a puck on the ice in all of this. You can take ownership and be a part of the team. Although your life may seem to be in the hands of your caregivers, it's still YOUR life. I encourage any patients and their caregivers to take active roles in their diagnosis and treatment and fully understand what is happening. I have yet to meet a doctor or nurse in all of this that wasn't willing to explain or clarify any statements I did not understand.

There are a ton of resources available to assist with questions you may have. For me, in the initial part of all of this, I was overwhelmed with diagnosis, testing schedules, what's next, etc., that I didn't take the time to explore some of those resources. Currently, I'm talking to folks in the profession to figure out ways to help newly diagnosed patients obtain the information in portions that are manageable.

If you are a former patient or caregiver, I'm open to your suggestions.

On another note, we do this cool thing at my church during the Prayer of Concerns where you can say someone's name out loud that you want to have remembered in prayer.

Here are some names I'd like you to remember:
Pat, Susan, Bo, Hunter, Ellie, Hal, and Marc

I Won't Forget To Remember

Was changing my sheets on the bed over the weekend and in the rotation of sheets to put on the bed, the next set of sheets were the sheets that were on my bed when I came home from my hospital stay at MCV.

Not such a big deal you may think. However, when I was "reacquainting" myself with my house after I came home from the hospital, my friend who brought me home was getting a kick out of watching me look at all the cleaning and repairs that had been done at my house by my friends who came to "work day" at my house before I came home from the hospital. After I had walked through the downstairs, my friend said, "Go upstairs and look in your bedroom."

One of the "repairs" that was made was the removal and disposal of my "manly" bed comforter and the purchase of a new comforter and a new set of sheets. Those are the sheets that I put on my bed last night.

It made me smile to know that there were people who not only came in to do a spring cleaning, but did extra things over and beyond. Even now, several months later, I still shake my head in amazement.

There were many kind acts that were directed to me as a result of my recent history that I don't think I have to forget about. The above anecdote is just one of them.

They are a collection of kindness, compassion, teaching moments, and non-prescribed (but essential) medicine.

“Wherever there is a human being, there is an opportunity for a kindness.” - Seneca / Roman philosopher, mid-1st century AD (www.thinkexist.com)

"I Mean When You Got Friends Like Mine"

A friend of mine, who is a cancer survivor, sent me the following suggestions in an e-mail the other day after I asked her about the anxiety phase that happens after you get the "all clear." Thought they were too good not to share.

Distraction – find something to keep your mind off your worries.

Self-talk – reassure yourself that you have done everything that the doctors have advised you of. It’s going to be okay.

Thoughts – when you have thoughts of fear, consciously tell yourself to STOP, and make yourself think of something else.

Reminders – do you have any physical reminders make your cancer experience come to mind? Get rid of them. (mine was those clothes that I can’t wear now that I’m on Tamoxafin—things that are too small. It really felt good to get rid of them!)

Conversation - Nip upsetting conversation about cancer in the bud. You know when you have this screaming from your soul, and you know that others are trying to be “nice”? Answer them politely, and change the subject.

I don’t claim to be an expert, but these are recommended tactics for being at peace after becoming a SURVIVOR! You’ll think about things less the more time lapses between your meeting with the Alien.

I think she done good. I read one of my own blog postings in which I said I talked to my doctor during the time period prior to the stem cell transplant. In that conversation, I told her I was 30 yards out and driving for a score to beat the alien.

Sometimes I forget I called a Quarterback sneak at the goal line. In this case, it's probably even OK to run up the score.

This May Seem Late In Coming

I'll admit, I'm more of a "gut feeling" kind of guy. Haven't kept track over the years, but I'm sure it gets me in trouble more often than not. I have made decisions since October 2008 that relied on my trust of various doctors and nurses. They and I have called it right.

Below, is more information than I have shared about stem cell transplants in the past. I didn't process all of this information before I had the transplant. However, I would have made the same decision if I had processed it.

I spoke to a Specialty Case Manager at my insurance company the other day and reviewed this information with her. She told me I was correct in my perception of it but she verified that the allogenic transplant was, as she called it, "Messy." She then said, "Greg, don't be letting it occupy your mind right now. Enjoy the day you are in. That's why you made the decision you did."

Autologous stem cell transplant: This kind of transplant is mainly used to treat lymphomas and multiple myeloma, although it is sometimes used for other cancers. In this type of transplant, you are your own donor, using stem cells from either your bone marrow or circulating blood. Your stem cells are removed before treatment through a process called harvesting, and then frozen. After you have received high doses of chemotherapy, radiation, or both, the stem cells are thawed and given back to you.

An advantage of autologous stem cell transplant is that you are getting your own cells back, so there is no risk that your immune system will reject the transplant or that the transplanted cells will attack your own body.

A possible disadvantage (I was letting this part get to me) is that cancer cells may be harvested along with the stem cells and then reinfused back into the body. Doctors sometimes treat the cells first with anticancer drugs or other therapies to reduce the number of cancerous cells that may be present. This is called purging.

Allogeneic stem cell transplant: This type of transplant is commonly used to treat leukemias and other bone marrow disorders. Here, the stem cells come not from the patient, but from a donor whose tissue type best matches the patient. The donor is most often a family member, usually a brother or sister, but if you do not have a good match in the family, one can often be found from the general public through a national registry. A newer source of stem cells is blood taken from the placenta and umbilical cord of newborns. This blood contains a relatively high number of stem cells. Still, the numbers are often too low for adults, so this source of stem cells is used mostly in children.

An advantage of allogeneic stem cell transplant is that the donor stem cells produce their own immune cells, which may help destroy any cancer cells that remain after high-dose treatment. Another possible advantage is that the donor can often be recalled if needed to donate more stem cells. Stem cells from healthy donors are also free of cancer cells.

But there are several possible drawbacks to allogeneic stem cell transplant as well. The transplant, also known as a graft, may not "take" – that is, the donor cells may be more likely to die or be destroyed by the patient’s immune system before settling in the bone marrow. Another possibility is that the donor cells will create new immune cells that attack the recipient’s body – a condition known as graft-versus-host disease. There is also a very small risk of certain infections from the donor cells (although donors are always tested beforehand to minimize this risk).

Source: American Cancer Society website

To summarize: Autologous transplant = higher risk of relapse. Allogenic transplant = less chance of relapse, but harder time getting "rebooted" due to the graft vs. host possibility.

I'm not sure of the relapse odds statistics, but I do know that the autologous transplant is the preferred option. In addition, it's not a "let's take a chance" and hope there are no cancer cells in the stem cells that are extracted from your body. That's the purpose of the bone marrow biopsy that I had in May - to examine it and look for cancerous cell activity. I was clean.

One moves on.

The Script

This is a preview for you of the script I will be recording for Virgina Blood Services.
Thought I would share it with you.

Hi, this is Greg Frazee. I’m calling to say thank you to the person in your house who recently gave blood with Virginia Blood Services. Like yourself, I was a regular whole blood and platelet donor. I considered my donations as my contribution to the fight against cancer as my platelets were often directly matched to a cancer patient. In October 2008, I was diagnosed with stage 4 Non-Hodgkin’s Lymphoma. During my year long treatment, I often received whole blood, platelets, and plasma donations. As a result of my cancer diagnosis, I regret that I will never be able to donate blood products again, but I would like to encourage you to spread the message to those who can donate. Currently, I am in complete remission and am grateful for donors like yourself that continue to donate. I sincerely thank you for your gift.

Another thing I want to share. In church today the pastor, who was assisting the Senior Pastor with the service, offered up these words in prayer.

"Help us to know that no tragedy is a sign of you administering justice."

Amen.

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.