Cancer Survivors and Their Bone Marrow Donors

Recorded April 10, 2002

Cindy	Sheryl username: cherryg	Kip username: thriver visit Kip's Web page Read Kip's Story	Richard

Welcome and Participant Introductions

Dick Foley:
Hello, and welcome to the American Cancer Society's Cancer Survivors Network. I'm your host, Dick Foley. Today I will be talking with two cancer survivors and the two bone marrow donors who helped save their lives. As a cancer survivor myself, it's always especially meaningful to me to host these programs such as the one you'll hear today. We're going to be talking about subjects that include donating bone marrow as a relatively painless procedure; the satisfaction that comes from helping others by donating bone marrow; surviving a bone marrow transplant from the survivor's perspective; using visualization and mind-body connections to get through chemo and stem cell transplantation; anonymous donors and cancer survivors meeting for the first time, and what that dynamic is like; and then, how being a donor can literally change your life.

Before starting our discussion of all these topics, let me just take a few moments to introduce our guests today. Our first guest is Cindy from Pennsylvania. Cindy is 44 and single, and we're delighted to have you with us, Cindy. Thanks for joining us.

Cindy:
Thank you very much.

Dick Foley:
I'll share with our audience a little synopsis of your story as a donor. In May of 1998 your sister, Sheryl, was diagnosed with leukemia. Being her only sibling, you were tested as a potential bone marrow donor. You turned out to be a perfect match, and you mentioned that having a perfect match is a pretty rare thing. Stem cells were extracted from your bone marrow and given to your sister. Your surgery lasted a few hours. They extracted stem cells from the marrow in the lab after the surgery, which took a long time. At about 11 that evening, they gave your sister the stem cells in her IV line, and she then went through two rounds of chemo and is now considered cured. The bone marrow you donated literally saved her life, and you mentioned that anyone can donate and that it's easy. So we're looking forward to hearing more about that. Thanks for joining the show today, Cindy.

Cindy:
Thank you.

Dick Foley:
Our next guest is the recipient in this case, and that's Cindy's sister, Sheryl. Sheryl is a cancer survivor who is married, has a son who is 15, and also lives in the state of Pennsylvania. Sheryl, welcome to you.

Sheryl:
Thanks.

Dick Foley:
This all began for you with a five-month period of not feeling very well. You had a cold that just wouldn't go away, and that was unusual for you because you're a very healthy person. You saw a series of doctors looking for an explanation, and one decided to do a blood test. That's how you were diagnosed with leukemia. Initially, you've told us, you spent almost two months in the hospital doing chemotherapy. You lost weight and lost your hair, and when you came home you were very weak. You returned to the hospital for two months for a bone marrow transplant, and fortunately, in your case, your sister proved to be this perfect match. After this transplant you spent four or five months at home to get your strength back, and you've been healthy since. Does that sound pretty accurate?

Sheryl:
It sounds perfect, except for the fact that I actually received Cindy's bone marrow, not just the stem cells.

Dick Foley:
Not just the stem cells, but the marrow itself?

Sheryl:
Right. Right.

Dick Foley:
Thanks for that clarification, and thanks for being with us today.

Sheryl:
Pleasure to be here.

Dick Foley:
Our next guest is Kip. Kip is a cancer survivor from the state of Maine. Kip is divorced, now living with a significant other, and he has two children, a boy and a girl. Kip, welcome to our program.

Kip:

	Kip (left), and his donor, Rick (right)

Thank you.

Dick Foley:
You had been a runner, and in 1996 you noticed you were getting more tired than usual, so you thought you might have mononucleosis, but when you went in for a blood test you were diagnosed with chronic myelogenous leukemia, often called CML. You felt very lucky because you had caught this early. You were treated initially with interferon, but a bone marrow transplant was recommended, and you had that in January of 1997. The bone marrow in your case came from an unrelated registry donor because none of your four siblings was a match. You recently celebrated your five-year anniversary of the bone marrow transplant, and because your immune system is fine, this five-year mark is a very significant one, and as you said, you are way out of the woods. So Kip, welcome back from the woods and thanks for joining us today.

Kip:
Good to be here.

Dick Foley:
Our final guest is Rick, and Rick was the bone marrow donor for Kip. Rick lives in South Carolina, is 49, married, has two children, a boy and a girl, and his children, ironically, are close in age to Kip's children. Rick, we're glad to have you with us as well today.

Rick:
Thank you.

Dick Foley:
You became a bone marrow donor in 1992 while you were in the Navy, during a donor drive on your base. In 1996, when Kip needed a donor, it was discovered that you were a perfect match, much closer than any of Kip's siblings. Though you didn't know who Kip was, you were told that he was about your age and that you had children the same age as well. You began this process by making blood donations, blood that would then be returned to you after the bone marrow donation. The donation was done in an outpatient surgery. You were under anesthesia, but in a couple of hours were recovered enough to walk around, and you drove home the next day. You met Kip a year later. You've stayed in touch, visited, and have now become friends, and we're delighted to have you here as well, Rick.

Rick:
Thank you very much.

The Experience Of Being A Bone Marrow Donor

Dick Foley:
Let's go to this question about donating bone marrow, because I think there is always, in the unknown, that element of fear, but Cindy you say to us that this is not a procedure necessarily to be feared.

Cindy:
Not at all.

Dick Foley:
Tell us how it went for you.

Cindy:
After extensive blood work, it was done on an outpatient basis and I was put completely under anesthesia. Didn't feel a thing, came out, and the only effect that I really did have was some soreness that I could equate to muscle soreness in the back area where the bone marrow was extracted. It was virtually painless, which was quite a surprise to me, and a pleasant one at that.

Dick Foley:
Did you have misgivings going into this? Cindy, that it might be an ordeal for you as well?

Cindy:
I did, and I pushed those thoughts out of my mind because there really was no choice. I had to do it. So I chose not to think about it and just kind of forged ahead, which I did.

Dick Foley:
Yeah, in your case, of course, the recipient of your marrow is a sister.

Cindy:
Yes.

Dick Foley:
So there is that kind of additional motivation, if you will, although we'll find out just how different when we talk to Kip and Rick in a little while. The marrow was extracted from the hip joint, is that correct?

Cindy:
Yes.

Dick Foley:
So the soreness you talked about is around the rear, the pelvic region?

Cindy:
Exactly.

Dick Foley:
How long did it last?

Cindy:
It was less than a week--

Dick Foley:
Okay.

Cindy:
--and very manageable.

Dick Foley:
So the bottom line for you, for people to understand, is this is not a big deal.

Cindy:
This is not a big deal, and from someone who is extremely squeamish, I can vouch for that.

Dick Foley:
[laughs] Okay, thanks. Now, Rick, you say you were actually up and walking a couple of hours after the bone marrow harvesting.

Rick:
Yes. They harvested the marrow around 10 in the morning, and after that I slept for several hours, and I believe I was up around 2 or 3 in the afternoon. They told me I couldn't leave and go home until I got up and went to the bathroom by myself.

Dick Foley:
Mm-hmm.

Rick:
So that was the goal that I had to achieve that day in order to leave.

Dick Foley:
And how were those first few steps?

Rick:
Kind of shaky.

Dick Foley:
Mm-hmm.

Rick:
I needed something to hold onto. My wife was there with me to help support me, but overall it wasn't so much from donating the marrow, it was probably just wearing off of the anesthesia--

Dick Foley:
Mm-hmm.

Rick:
--that had me a little bit groggy perhaps.

Dick Foley:
Did you feel, Rick, that the doctors had prepared you well for what you would experience in the marrow harvesting?

Rick:
Oh, yes. Through the entire process they give you every opportunity to back out. They want to make sure when it comes down to the moment of truth that you're not going to back out. So they ensure that you're prepared beforehand by giving you all the details.

Dick Foley:
Because in your case, this is something that you're doing for someone you don't know. It's purely voluntary, and so your motivation arguably is somewhat different than Cindy's.

Rick:
True, but it was one of those deals like you mentioned earlier, when I found out that Kip had a son my son's age and a daughter my [laughs] daughter's age. There but for the grace of God that could have been me on the other end. Once I knew there was a need, there was absolutely no question that I was going to go through with this.

Dick Foley:
Pretty difficult to duck the fact that somebody's life is on the line.

Rick:
That's correct.

Dick Foley:
Cindy, I'm curious to know as well, what were some of the thoughts that might have been spinning through your head as the day approached when you would undergo this bone marrow harvesting?

Cindy:
As I said, I really made a conscious effort not to think and let my imagination get the best of me. I was well prepared by the doctors.

Dick Foley:
Mm-hmm.

Cindy:
This is probably, I would think, close to the most serious undertaking, besides having my tonsils out as a child.

Dick Foley:
Mm-hmm.

Cindy:
And it really was something that I knew I couldn't let get the best of me. So I really didn't; mind over matter.

Dick Foley:
You just sat yourself down and had a good talk with yourself.

Cindy:
Well, yes. I guess there was some of that, too.

Dick Foley:
Mm-hmm.

Cindy:
I also traveled out of state so this could take place at another hospital so the traveling, all of that, kind of helped me to kind of keep my mind off of things.

Dick Foley:
Okay. Rick, was this in fact the second time you had been a marrow donor?

Rick:
No, this was the first time.

Dick Foley:
Okay. You'd signed up some years earlier, but this was the first time you'd been called upon and matched with a leukemia patient?

Rick:
That is correct.

Dick Foley:
What was your motivation? Why did you want your name on a marrow registry?

Rick:
Well, I guess my reasons were selfish at first. As you mentioned earlier, I was in the Service at the time. I'm a career Navy guy. I was in the Navy for 24 years, and the Navy has--or the Services have something that they call "vampire liberty" where if you'll give blood they'll give you the afternoon off. So, at this particular duty station where I was at the time in Virginia, it was either they were collecting blood, or if you would donate the samples, to go in the marrow registry, you could have the rest of the day off. So that was my motivation at the time.

Dick Foley:
I love the name! "vampire liberty!" [laughs]

Rick:
[laughing] Right.

Dick Foley:
Okay. But then, I suspect that that motivation changed once the process became very real.

Rick:
Oh, certainly. Yes. You know, once I got that letter in 1996 from the National Registry--

Dick Foley:
Mm-hmm.

Rick:
--it was like--I mean, basically I had forgotten about it. It had been four years earlier.

Dick Foley:
Right.

Rick:
I was out of the Navy. I had a different life basically. I've started a second career and it was like just dropped out of the sky.

Dick Foley:
Mm-hmm.

Rick:
It was very shocking, nearly. I immediately called or wrote back, I can't remember exactly what action I had to take, but I wanted to get on with it.

Dick Foley:
Mm-hmm.

Rick:
I said, "Let's go!"

Dick Foley:
I'm sure you were projecting that this transplantation for Kip would go well and would be successful. Did you have some thoughts about the impact that this gift you were giving--what that impact would be on Kip and his family?

Rick:
Other than I thought about if my children lost their dad--that their quality of life would be changed significantly for the worse, and I didn't want that to happen to somebody else's children.

Dick Foley:
Mm-hmm.

Rick:
That was my main motivation. That's what entered my mind the most.

Bone Marrow Transplant: The Survivor's Perspective

Dick Foley:
Right. Well, I suspect that's not far from the motivation of most people who choose to be donors. Let's turn to the survivor's perspective. Sheryl, I wonder if you would share with us the first thoughts that spun into your mind when the doctor told you you would need a bone marrow transplant.

Sheryl:
[laughs] I think that from the moment that I was told that I had leukemia I don't think that I really thought about much.

Dick Foley:
Mm-hmm.

Sheryl:
They did tell me right up front, "We do have a cure," and my reaction was, "Okay, I'll take one of those."

Dick Foley:
Right. [laughs]

Sheryl:
And whatever it was that I had to do I would do. They didn't tell me right away that I would need a bone marrow transplant, so I was in the hospital for two months just getting into remission.

Dick Foley:
Mm-hmm.

Sheryl:
And during--I guess after the first month, they decided to test my sister's blood to see if she would be a compatible donor, and I really, I can honestly say, I guess because of all the medications I was taking, I was a little confused and I didn't quite make the connection that I was going to need this bone marrow transplant. But they kind of kept us informed that the process was going on, and Cindy was being--her blood was being tested.

Dick Foley:
Mm-hmm.

Sheryl:
And they came back and they said, "You are really lucky. This is your lucky day. She is a perfect match for you." I really didn't think about the bone marrow transplant until after I got out of the hospital. I came home and I was able to regain some of my strength and I had to start getting stronger so that I could go back in for the bone marrow transplant. That's when it really began to dawn on me that, gee, I was going to have to undergo this and it would be something similar to what I had just undergone.

Dick Foley:
Right. How much did you know about the transplantation procedure?

Sheryl:
I knew absolutely nothing.

Dick Foley:
Oh, you started from zero.

Sheryl:
Yeah. Oh, I really--I had heard, you know. I had read articles in "People Magazine" about this particular person who had a transplant or you would just hear about--I would hear about things.

Dick Foley:
Mm-hmm.

Sheryl:
But I really knew just about nothing about them.

Dick Foley:
And now, you probably know everything about them. [laughs]

Sheryl:
Well, more than I ever really wanted to know!

Dick Foley:
Yeah!

Sheryl:
Absolutely.

Dick Foley:
I understand that!

Sheryl:
I absolutely do. Yeah. I just think it's terrific that there are people like Rick who just go and donate marrow to somebody that they don't even know. That's just such a gift.

Dick Foley:
Yeah. Absolutely. Kip, let me turn to you as the recipient of that gift. When you first heard that you'd become a candidate for a bone marrow transplant, how did you feel? What were your thoughts?

Kip:
Well, it was a month or two--I knew I had an option for a bone marrow transplant right away, but I was actually in a very stressful situation when I was diagnosed. I was actually--had been out of work and on a severance package.

Dick Foley:
Hmm.

Kip:
And literally [laughing] the same day. I was away in Boston accepting a job offer when my wife at the time got a call that there was a 99.9% chance [laughing] I had leukemia.

Dick Foley:
Yikes! Talk about double dose!

Kip:
So I went through, I was going to be moving to Boston and the question of which doctors to use came up. So the first doctor I had really down-played the bone marrow transplant and said, "Well, interferon is a good treatment to start with and many people are surviving long-term." But I quickly found out, especially from the Boston doctors, that bone marrow transplant, at my age if you're looking for a long-term cure, was a good option. I used the Web a lot, to just kind of confirm and connect with some other people who had been through it, and I highly recommend getting in touch with people who have been through this. Because, similar to Sheryl, my attitude very quickly became, with two kids and a wife, I don't care what you throw in between me and those people and my friends and family. I will do anything! If you just give me one shot with my attitude to get--to maintain my life with them.

Dick Foley:
Mmm.

Kip:
If I have to climb Mount Everest, I'll climb Mount Everest. If I have to swim the English Channel, I'll swim the English Channel.

Dick Foley:
Sure.

Kip:
And for me it was a bone marrow transplant. So as soon as I heard about that, I said, "Well, let's do it."

Dick Foley:
Yeah.

Kip:
So by the time the day came to go into the hospital, I was just ready to go. I had met some people and said, "Boy, if they can survive it, I can survive it." So I just--it's interesting, though. I'll never forget the day, it was a very disappointing day that I found out my four siblings didn't match, because I had an 80% chance of one of them matching.

Dick Foley:
Right.

Kip:
But when I did find out that I had a good match, almost instantly, because I'd been in touch with so many people, mostly on the Web looking for donors, I did feel this sense of, "Wow!" I don't know what you call it, survivors' guilt or something, "What about everybody else?"

Dick Foley:
Mm-hmm.

Kip:
And you know, I didn't expect to feel that way, but it's something that happens. I guess that's my message to people who may be listening who are not sure about being a donor, is just think about the people out there, and there's probably thousands of them at any point in time looking for a donor who can't get one. And I bring that up because the other thing my father used to remind me as I started facing the reality of the riskiness of the transplant, which I knew roughly 60% of the people survive what I was going to go through, [laughs], my dad asked me, "Well, how would you feel if you didn't have a donor right now?" And you know, that just woke me up to I'm so lucky to even get a chance to have a bone marrow transplant.

Dick Foley:
It's been my experience that these experiences with cancer do tend to change us in terms of what we think is important and some of our values in life and certainly you've addressed that in the attitudes and thoughts that you've experienced. Sheryl, it probably had to be a source of maybe some extra comfort for you that your donor was your sister and therefore really committed to this process, and in addition was a perfect match. Was it more comforting to you knowing that you were going to receive your sister's bone marrow?

Sheryl:
I never really thought of it that way.

Dick Foley:
Mm-hmm.

Sheryl:
Because I just, like I said, I wasn't even thinking in terms of bone marrow transplant, and then they said to me, "She's a perfect match."

Dick Foley:
Right.

Sheryl:
"She can be your donor." So I just felt extremely, extremely lucky, because the odds were really against my sister being a match. There was only a 25% chance that she would be this perfect match. So after I went through the whole process and I really had a chance to process it emotionally, I realized how incredibly lucky I was, and on the other hand how unfortunate it is for people who do die waiting for a compatible donor.

Dick Foley:
It's not necessarily a roll of the dice, because obviously this matching process is very, very acute in the way that they look at--do they match about six different antigens in the blood?

Kip:
Yes.

Sheryl:
I think now they're doing even more for unrelated donors.

Dick Foley:
Are they?

Kip:
That's the additional match, and then in my case I actually had, I don't know if Richard knows this, this is Kip speaking, I had several good matches, and they keep going deeper and deeper in the blood analysis to find the best of all matches, if you will.

Dick Foley:
The idea being that the better the match, the higher the rate of success for the transplant.

Kip:
Exactly.

Dick Foley:
Right. Any additional uncertainty, Kip, would you say, because your donor was someone not known to you, or--?

Kip:
You know, that just never occurred to me. [laughing]

Dick Foley:
Right.

Kip:
And the other thing that amazed me was my doctor, who by the way, I found a year after the treatment went to the same college I went to at the same time. I was in Boston, and I knew that I'd heard all the stories. By the time the donor is in surgery, basically the patient is, for all intents and purposes, dead without that marrow.

Dick Foley:
Right.

Kip:
I mean, they've wiped out your whole blood supply. And I said, well--and I knew marrow had come sometimes around the world--

Dick Foley:
Mm-hmm.

Kip:
--and I know that it's transported in person. They won't even put it with the pilot, and I said, "Well, what about blizzards and stuff?" And my doctor in Boston said, "You know, in all these years we have never not gotten the marrow here."

Dick Foley:
Wow.

Kip:
No matter what the weather and the airport delays and that thought never even occurred to me.

Dick Foley:
What kind of thoughts did you have, Kip, about this person that you didn't know, who was donating marrow for you?

Kip:
I'm not even sure I ever would be able to put that into words. [emotional]

Dick Foley:
Yeah.

Kip:
On the one hand I felt like I turned the tables and said, well, if it was me--I mean, how many chances do you get to literally save someone's life, and I'd heard some horror stories about even family members turning each other down, and I understand with the minorities it's a big problem--

Dick Foley:
Hmm.

Kip:
--on the Registry. They have trouble finding matches that agree to go through with it. So, I had learned so much about it that it never really made a difference to me if it was a--I was just so confident that it would happen.

Before And After The Transplant Procedure

Dick Foley:
Sheryl, let me turn back to you as a survivor, and for people who don't understand the transplant procedure, the doctors in preparing you to receive this new marrow, get very aggressive in virtually wiping out your immune system. Can you tell us some of the things you experienced during that time and how you coped with them?

Sheryl:
Okay. I had a few days of intensive chemotherapy.

Dick Foley:
Mm-hmm.

Sheryl:
And a few days of entire, whole body radiation twice a day for three days, and I have to say it was really--it's not something that I would ever recommend to anybody as a fun activity, but it wasn't as bad as I had anticipated it would be. There are a lot of wonderful medications out there. I was really, really afraid of nausea.

Dick Foley:
Mm-hmm.

Sheryl:
I just had pictures of myself just leaning over a tub and just feeling so miserable, and that just was not the case. It really wasn't. I had some waves of nausea, but there were so many good medications that they could give me that that fear really never was realized and, I mean, some of the other things. I mean, it totally wiped my energy out. I had absolutely no energy.

Dick Foley:
Mm-hmm.

Sheryl:
And that took a long time to get back, but I just really focused day by day, you know? And sometimes hour by hour. I'm feeling this right now, but next hour I might not feel that.

Dick Foley:
How long has it been now since your transplant?

Sheryl:
Three and a half years.

Dick Foley:
Three and a half years and counting.

Sheryl:
Yeah. And counting.

Dick Foley:
Right.

Sheryl:
And I have to say congratulations to Kip, because five years I know is a really big milestone.

Dick Foley:
Well, I remember how I looked to my five-year mark, too, and it was indeed a milestone.

Sheryl:
Right.

Dick Foley:
Kip, how about you? Do you recall that period very vividly, and how difficult or easy was it for you?

Kip:
I remember the saying that I'd heard before I went in that everybody has a different experience, and I think that's very important because--especially if you hear of somebody really struggling it doesn't mean that that's going to happen to you. It sounds like I had a little more nausea and actually vomiting, and to this day, though, I think I've developed a phobia for that. [laughs]

Dick Foley:
[laughs]

Kip:
I have a saying, I'd almost prefer pain to nausea, but again, frequently they were able to overcome that with some incredible drugs.

Dick Foley:
Mm-hmm.

Kip:
I had a terrible reaction, this graft versus host disease, which is a sort of a rejection in reverse--

Dick Foley:
Yes.

Kip:
--manifested itself in my mouth, and that's what I mostly remember. I had big problems with my mouth where it just was very, very sore. I remember--I don't remember too much of the six weeks in the hospital, but I do remember the oral pathologist there had heard about me, and she kept coming in and asked permission to take pictures of my tongue and my mouth because there were so many lesions on them.

Dick Foley:
Wow.

Kip:
But frankly, if you have to pick a place to have graft versus host disease, that's probably one of the better places because if it affects your stomach or your skin, I think it can be even worse.

Dick Foley:
So, during that time when you were going through this problem with your mouth, were you able to eat or drink?

Kip:
I really tried. They encouraged you to, because they said if you go on what's called parenteral nutrition, which is IV fluids--

Dick Foley:
Right.

Kip:
--they say it's just that much harder to get your stomach used to food again, and I don't remember exactly, but I frequently would try to eat, and when it wouldn't stay down the nurses finally said, "Look, you don't need to eat now." And I think for a few weeks I was on IV nutrition.

Dick Foley:
Sure. How about long-term effects, Kip, things that might have stayed with you or may still be with you in kind of an aftermath of this process?

Kip:
The only real long-term effect, I mean, I have a saying I tell people, I'm actually in better shape now than I was when I got sick, and it's really true. I think a lot of survivors decide they're going to take [laughs] better care of themselves, but for about a year I had ongoing, pretty serious mouth problems where I was restricted in terms of what I could manage to chew and swallow. I actually went through--it's a very long story--but I actually went through about a nine-month period with a problem they'd never seen in which was I wasn't making any red blood cells.

Dick Foley:
Oh!

Kip:
And normally, either you're making all your cells or nothing, in which case you die, and so this was a rare case where the only thing I wasn't making was red cells. Thanks to a literally miraculous, what I call a paradigm shift in thinking by my own doctor, about nine months afterwards, he figured out the problem and fixed it, so--

Dick Foley:
What had to be changed?

Kip:
Actually the problem was--it's a little complicated, but there were some cells left. I switched blood types.

Dick Foley:
Oh!

Kip:
I don't know if the two girls did.

Dick Foley:
Mm-hmm.

Kip:
But Rick and I were different blood types, and they usually don't worry about that because they wipe out your blood supply--

Dick Foley:
Right.

Kip:
--before you get your marrow. It turns out, they had always worried about what they call mismatches, and what my doctor finally decided was, if they've never seen this, I must be making red cells. The problem is not that I'm not making them; I am making them. And if I am making them, something must be killing them. And so it turned out the cells that normally create antibodies that would kill my donor cells, some of those were left over, and so when Richard's bone marrow started producing red blood cells they got killed by a little bit of my leftover immune system.

Dick Foley:
I see.

Kip:
And they eventually filtered that out using something called plasmapheresis.

Dick Foley:
Right.

Kip:
First time it had ever happened though, and there is a great ending to this story, because I've heard since then that they've seen this now a few times, and instead of not knowing what to do they know exactly what to look for.

Dick Foley:
So you were maybe a test case in some ways?

Kip:
Definitely.

Dick Foley:
Yeah. Sheryl, how about you? Long-term effects? Anything you'd like to share with us?

Sheryl:
My white blood count is still a little low.

Dick Foley:
Uh-huh. Even three and a half years out?

Sheryl:
Right. Right. It's not terribly low and they're not terribly concerned, but they're still hoping that it will come back up.

Dick Foley:
Sure.

Sheryl:
But I did manage to get through this winter, I want to knock on wood, without a cold or the flu.

Dick Foley:
Good.

Sheryl:
And aside from being a little tired, a little bit more tired than I used to be, because that totally, I don't know about you, Kip, but this bone marrow transplant just totally wiped me out. It took me a good year until I could kind of get back into carrying on with my life in some fashion.

Kip:
My doctor calls it the most devastating procedure in medicine.

Sheryl:
Hmm.

Dick Foley:
We saw a family friend here in Seattle through it at the Hutchinson Center, and I think that describes it very well. It's a very, very grueling and difficult procedure, and anyone who does get through it, I know, has to be changed for the rest of their lives. How long after your procedures, Sheryl and Kip, did you have to exercise some rather extraordinary precautions in terms of what you ate, where you went, what kind of air you breathed, that sort of thing?

Kip:
Go ahead, Sheryl.

Sheryl:
Okay. Well, I have always been, I always say this is really funny that I ended up with this disease because I've always been somewhat of a germ freak.

Dick Foley:
Mmm.

Sheryl:
And [laughs] it got a lot worse--

Dick Foley:
[laughs]

Sheryl:
--when of course I had reason to fear germs, because in the beginning when you don't have a whole--a full white count, you're more susceptible to infection.

Dick Foley:
Sure.

Sheryl:
So I had my transplant in September, and my first hundred days ended--and those are the most critical days--in December. But I was in the middle of the winter and it was cold and flu season, and I was told to just pretty much stay inside during peak hours. Like, don't go to the mall during a peak hour.

Dick Foley:
Mm-hmm.

Sheryl:
Don't go to a restaurant at dinnertime. Go early. Go to a matinee, don't go to a Saturday evening movie, and I think I did that for--well, well into the summer, until I finally felt comfortable enough to go out and to be with people. As far as special--I really--other than keeping my house clean, they didn't recommend that I do anything special. I wasn't in any special isolation.

Dick Foley:
And no surgical masks when you were out in public?

Sheryl:
Oh yeah. Yeah, in the beginning.

Dick Foley:
In the beginning. Okay. For how long?

Sheryl:
Oh, let's see, maybe the first hundred days.

Dick Foley:
Okay.

Sheryl:
You know, it's so long ago, I'm trying to remember. Yeah, definitely when I went out--I really didn't go out then except to go to the hospitals for checks and so forth.

Dick Foley:
Mm-hmm. Well, I would imagine, Kip, that's a time in your life when you want to do pretty much what the doctors are telling you is the ideal behavior pattern to get yourself better and stronger.

Kip:
Well, it's interesting because I had quite a bit different pieces of advice and regimen, and I know in Boston the doctors are very conservative, but I was told for a year post-transplant I could not be in a public place even with a mask on.

Dick Foley:
Wow!

Sheryl:
Hmm.

Kip:
And so, when I went back to the hospital, I had to have a mask on. The good news--now they would let you be with your family, and the only rule there was the teachers at school had to tell us if anyone in class was sick. I would make sure to keep my distance from the kids, but--and towards the end of the twelve-month period they said, " You can go into a grocery store if it's not too crowded, but you got to have a mask on!"

Dick Foley:
Mm-hmm.

Kip:
I remember the advice of my father at the start of this, which was, "What you need to do is find a doctor that you trust one hundred percent in, and then you do exactly what he tells you."

Dick Foley:
[laughs] Right.

Kip:
That's very good advice.

Dick Foley:
I would have to agree.

Mind Body Spirit Connection And Utilizing Visualization

Dick Foley:
I think that makes a lot of sense. I want to explore with you, Kip, and with Sheryl, this whole idea of attitude, and it's really more than that because the words that we choose to use now are "visualization" and "mind-body-spirit connections" to get us through these very, very difficult and challenging experiences like a bone marrow transplant. How important do you think that was for you, Kip, the mind-body-spirit connection in your experience, and how did you use it?

Kip:
I honestly believe it was one of the most important factors, besides some brilliant doctors and very, very good--a lot of experts on my team. When I was first diagnosed I was one of the most physically fit people you'd ever meet, and I had--what I struggled with was: "How do I think about this? Is everybody sugar-coating things?" All I knew about leukemia the day I got diagnosed was everybody I knew that had it was dead, and so I was very confused for the first couple days. It was sheer blind luck that somebody handed me a book they'd found at a book sale from Bernie Siegel.

Dick Foley:
I know that name.

Kip:
I started reading it, and I would call it almost a [laughing] miraculous transformation in about two hours.

Dick Foley:
Was it "Love, Medicine and Miracles" that you read?

Kip:
Yes.

Dick Foley:
Yeah.

Kip:
Basically, Bernie gave me a way to think about this which was, not only is it okay to fight, but there's a lot of evidence out there that if you decide to fight it can actually affect the outcome of your disease, no matter what you have.

Dick Foley:
Now, were you getting this advice from anybody besides this author?

Kip:
Well, not really. I kind of immersed myself in his books, and that was enough to send me on my way and be convinced that if you fight this thing you can actually affect the outcome of it. And there is nothing to be embarrassed about in terms of wanting to fight because I know people with--I knew right away, like Sheryl did, I had a pretty good chance of getting through this thing.

Dick Foley:
Mm-hmm.

Kip:
I know I feel sorry for people who have diseases with much less chance statistically, because I hope they don't worry that people are going to kind of look down at them if they decide to fight. That's the last thing anybody ought to worry about.

Dick Foley:
Now, when you say, "decide to fight," tell me what you mean by that.

Kip:
[laughing] That's a very good question.

Dick Foley:
Mm-hmm.

Kip:
I think it meant first of all, I was very fortunate. I can't remember the name of the drug I was on, but I had the luxury of waiting. All they recommended was that you have the transplant within a year.

Dick Foley:
Mm-hmm.

Kip:
I decided to wait until after Christmas--I was diagnosed in March--at least share what might have been a last Christmas with my family. There was a wonderful drug that's basically just a band-aid, but that controlled your white cell counts, and I felt great, so I decided the best thing I could do was, I was always very physically active, and I decided the best thing I could do was just stay in shape right up until the night I went into the hospital. So I was realistic about my odds, but I had studied the mind-body effects so much and talked to some other survivors who were into it, and it--I don't remember actually looking on the Web or getting a lot of other books besides Bernie's.

Dick Foley:
Mm-hmm.

Kip:
I'm very high on him.

Dick Foley:
But you stayed in good physical condition and you felt that was a contributing factor?

Kip:
Yes.

Dick Foley:
How about diet?

Kip:
I had always watched my diet pretty carefully and so there weren't any restrictions that I remember before the transplant.

Dick Foley:
Okay. Sheryl, let me turn this question to you, because I know in your case the process of visualization was connected, at least in time, to something of a dramatic turn-around in your case.

Sheryl:
I thought so.

Dick Foley:
Mm-hmm.

Sheryl:
Absolutely. I just would like to say that starting out I was also in fabulous physical shape and my diet was terrific, and even my husband said, "I never thought anything like this would happen to you. You do everything right. You exercise, you eat well. How could this happen?" I stayed positive through the whole thing--

Dick Foley:
Mm-hmm.

Sheryl:
--because initially my doctor said, "We have a cure." He didn't mention "if we can find a bone marrow donor for you and if you survive the bone marrow transplant," so I really thought I was getting cured. I really did.

Dick Foley:
That's a powerful word, isn't it?

Sheryl:
Absolutely. Like I said, "I'll have one of those."

Dick Foley:
[laughing] Mm-hmm.

Sheryl:
I was in the hospital for a month. The induction chemo didn't put me into remission that first time. I was feeling pretty well. I had a second round and that one did make me a lot sicker, and they were waiting and waiting and waiting every day for my white counts to come back, and they weren't coming back, and finally I was reaching the period of time, at the very end of the bell curve, as to when it's normal for patients to, for their white counts to come up, and it wasn't--I wasn't doing anything. My counts weren't doing anything, and I was really getting tired of being in the hospital. I had at the time an 11-year-old son who was home, who hadn't seen his mother at home for two months.

Dick Foley:
Hmm.

Sheryl:
He went to school one day, and when he came home his mother was in the hospital. I thought, "I have to get out of here. What can I do?" I remembered a book that I had read to my son when he was a little boy about Louis Pasteur and how he invented the rabies vaccine. They were explaining to the little boy that they gave this very first vaccine to that there were little soldiers in the vaccine and they were going to inject the soldiers into his blood stream and kill all the rabies germs.

Dick Foley:
Hmm.

Sheryl:
And I just--that one night I remember I said to my husband, "I'm doing this! I'm going to visualize that there are little soldiers in my blood stream and they are fighting all of the cancer and they're going to enable my white counts to blossom." And my husband, who I think would have thought at any other time that I was absolutely out of my mind, decided that he was going to do this with me, too.

Dick Foley:
Hmm.

Sheryl:
We did this visualization. And someone had told me also, think of yourself just bathing in green light, because green is the color of health.

Dick Foley:
Hmm.

Sheryl:
I don't know if that's true or not, and I envisioned myself being bathed in green light, and the very next day my counts came back.

Dick Foley:
Wow.

Sheryl:
I have no idea if my visualization had any impact on it. I kind of like to think that it did, and I think from just hearing me tell the story you can tell that I'm not the kind of person that would have put a lot of stock in this--

Dick Foley:
Right.

Sheryl:
--initially. But, gee, they weren't coming back and I really was wishing for them to come back every day, and finally they did the next day after I did that.

Dick Foley:
Well it sounds as though the fact that your husband got on board with you and was very supportive of that process and actually joined you in it, provided some additional support, a level of support that was a bit extraordinary.

Sheryl:
It was. He was wonderfully on board in every, every way, I have to say, before that, and I think that's really so important to have a really good support system. I was truly blessed in that respect, too.

Dick Foley:
I'd love to hear, Sheryl, both from you and from Kip, about other resources or places people might go if they want to learn more about visualization and mind-body-spirit. Of course, Bernie Siegel would be a beginning point for you, Kip. What else?

Kip:
Actually, I don't know of too many others--I just relied on the Web so much.

Dick Foley:
Mm-hmm.

Kip:
And I still do as the first, my first knee-jerk reaction to anything, because I've never not found incredible resources there. Bernie has a lot of books out now and some of them go beyond--they're kind of general advice on how to live your life regardless of whether or not you're fighting a disease, but there's--I just felt flooded. There's more out there than I would ever want to look at when I went on the Web and just started looking for--you know, if you go to his website he'll recommend a lot of other books.

Dick Foley:
Sure.

Kip:
So, one thing leads to another. And the other thing I--listening to Sheryl, I want to make sure people who listen in--a lot of people say, "Oh, well, you know. Those people just had miracles." And this mind-body thing, it's my understanding now that in just about every single medical school in the country it's a mandatory course for first year medical students.

Dick Foley:
Hmm.

Kip:
I mean, they don't understand how it works but there's no doubt that it does work.

Dick Foley:
Well, I think there have been AMA-sponsored trials, too, looking at the difference that prayer makes--

Kip:
[laughs] I've heard about that.

Dick Foley:
--in the course of an illness, and so there's a lot of attention being paid to this, far too much for it to be ignored. Any other resources, Sheryl, that you can mention for visualization techniques?

Sheryl:
A wonderful resource for me, and this is while I was having my induction chemo before I got into remission, the hospital where I was had somebody who had just previously gone through what I was about to go through come into my room and talk to me--

Dick Foley:
Aaahh.

Sheryl:
--and tell me what to expect. I felt truly blessed that I had the most wonderful woman, a young woman who had just undergone this chemo, and she had just this fabulous spirit. She was a terrific person, and she came into my room and she said, "You know, it's doable. It's not so bad. I got through it. Look at me. Here I am." It really calmed me down. It really made me feel, "Gee, she's standing. She's walking around. She's not bent over the toilet vomiting. I can do this." That was so helpful to me, and after I came home from the hospital I did try to get in touch with as many different people as I could who had undergone a bone marrow transplant. Right now I'm very, very involved in my local chapter of the Leukemia and Lymphoma Society.

Dick Foley:
Mm-hmm.

Sheryl:
They have a lot of wonderful services. One of them is a patient service that is a first connection. It's called First Connection, and I'm a First Connection volunteer. All the First Connection volunteers' information is put into a central database. Then throughout the country, if a person who is in need of a bone marrow transplant has any questions or they want to talk to somebody who has already gone through it, they can be hooked up to somebody who is similar in age, sex, married/not married, children, pretty similar circumstances, so that they can talk to somebody who has been through it. I know it was just so incredibly helpful for me that I want to do everything that I can to help other people through it.

Dick Foley:
Well, I'm glad to hear you say that.

Sheryl:
Yeah.

The Unique Relationship Between Donor And Survivor

Dick Foley:
Let's talk about donors and cancer survivors, in the case of Kip, you and Rick meeting for the first time, and I'm wondering, Kip, what motivated you to contact Rick, and how important was it for you to have this contact with him?

Kip:
[laughs] It was very important. I would have been very disappointed, to say the least, if I had never gotten the chance to know who he was, and our first contact was by phone.

Dick Foley:
Uh-huh.

Kip:
And then it didn't take me long to decide that I wanted to meet him. And Rick, I don't remember when I found out, it probably wasn't until I talked to you, I think, that I realized you had two kids similar ages, but I wasn't in any rush to do it because we both had families and schedules and schools.

Rick:
Right.

Kip:
But we did end up arranging for him to fly up to Boston with his whole family and meet just about all of my family, which is a large number. [laughs]

Dick Foley:
[laughs] Now there's a general guideline, I don't know that it's hard and fast, but a guideline that suggests this contact be delayed for a year or so after the transplant. Can you explain that, either of you?

Rick:
This is Rick speaking. It's my understanding this is not general. It is definitely hard and fast.

Dick Foley:
Oh, it is?

Rick:
The Red Cross will allow correspondence, but it's completely anonymous.

Kip:
Oh, that's right.

Rick:
If I wanted to talk to Kip, I would send a letter to the Red Cross and they would forward it to him, but my name or address or phone number would not be on it and vice versa. I would receive correspondence back from him.

Dick Foley:
Help us understand the reason for that.

Rick:
Well, this is Rick again, and I was told, and Kip may have a different feel on this, but what the Red Cross told me was that should the recipient die, pass away, they did not want the donors to feel responsible.

Dick Foley:
Oh.

Rick:
That they didn't do everything they could have possibly done to help. So they didn't want to put us on a guilt trip.

Dick Foley:
Sure.

Rick:
I guess they just didn't want it to be too personal a thing for us.

Dick Foley:
Mm-hmm.

Rick:
They wanted it to be an anonymous thing. It was also mentioned--I found this kind of farfetched--but it was also mentioned that perhaps the family of the recipient, if the recipient should pass away, somehow, not being in a right state of mind because they just lost a loved one, they might hold the donor somewhat responsible.

Dick Foley:
I see.

Rick:
Now like I said, that sounds a little farfetched, but I guess that's possible.

Kip:
I also think, because this happened with us, there was a point in my recovery where there was a chance they were going to have to go take more marrow--

Dick Foley:
Oh!

Kip:
--and re-inject it, because they couldn't figure out why I wasn't making red cells. And I know they worry if Rick found out that if I was some person that he found objectionable in some way--that that second go-round somebody might turn you down.

Dick Foley:
So there is some protection really for both parties in this anonymity for the first several months after a transplant.

Kip:
We heard it was a very strict rule for a year.

Dick Foley:
I see.

Kip:
Yeah.

Dick Foley:
Okay. Did you have any hesitation, Kip, about contacting Rick and meeting him?

Kip:
My only worry was if I would pass out or break down in tears.

Dick Foley:
Yeah. [laughs]

Kip:
Because I had seen examples of, frequently the TV stations will show up and stuff, and it can be quite an event.

Dick Foley:
Yes.

Kip:
But Rick and I chose the low-key approach, and I'll tell you though, I met him at Logan Airport, and walking down the corridor, not knowing what he looked like or anything, it's a moment you'll never forget.

Dick Foley:
Can you tell us about it? Can you tell us about those feelings, and then Kip, maybe we'll turn to you as well, or Rick?

Kip:
I held it together. I mean, I was surprised, and so did my wife.

Dick Foley:
Mm-hmm.

Kip:
I guess we had all the kids there, and I guess in a public setting like an airport there is an incentive to do that. I think if we had met in some other setting, it might not have been as subdued as it was.

Dick Foley:
Sure.

Kip:
But I just said I felt like I had no idea what I was going to do when I saw him, and thank God, I held it together.

Dick Foley:
Had you rehearsed any kind of a speech, or do you remember what you said to Rick?

Kip:
I don't. I think I just said, "Hi," and gave him a big hug.

Dick Foley:
Yeah. What was that moment like for you, Rick?

Rick:
It was--what Kip said was pretty accurate. We deliberately wished to keep it pretty low-key, and Kip and his family generously flew my entire family from Charlotte, North Carolina, up to Boston.

Dick Foley:
Hmm.

Rick:
I'd seen the thing on TV before, with TV cameras and presenting bouquets of roses and whatnot, and all this hugging and crying and gnashing of teeth and whatnot, and it just wasn't like that. It was just a little hug or a good handshake, and it was like we were friends.

Dick Foley:
Mm-hmm.

Rick:
You know, it was almost as if we were a couple guys who knew each other who hadn't seen each other for a few years and we were just getting back together.

Kip:
But a lot goes unsaid.

Dick Foley:
Exactly. Just knowing that there is this bond between you that is really pretty unique in the world. Cindy, in your case of course, your experience was with a sister. Can you describe what it has meant for you having been the donor for Sheryl?

Cindy:
It was, as I said earlier, the kind of thing that I just really found myself going through the motions without much thought behind it. The impact of it all really didn't hit me until much, much later, and it's quite--it's quite a feeling, and my colleagues remind me of it even to this day.

Dick Foley:
Mm-hmm.

Cindy:
I think they helped me realize the impact of it all.

Dick Foley:
Has it changed your relationship with your sister?

Cindy:
Absolutely. Absolutely.

Dick Foley:
Can you describe that change at all?

Cindy:
Well, we have a bond like we certainly never did before, and I think that it's brought us so much closer and it's, I think it's quite amazing.

Dick Foley:
Sheryl, did you remember trying in some way to express your gratitude to your sister for this extraordinary gift?

Sheryl:
I have, yes, on different occasions, but words just can't express. I mean, I owe her my life!

Dick Foley:
Mmm.

Sheryl:
I would not be here if it was not for her. And I can just liken it to like having a child. You know, when my husband and I had our child and we have this something together. Cindy and I have something together. We both have the same bone marrow.

Dick Foley:
Mm-hmm.

Sheryl:
We are just more kin than we were before.

Cindy:
Mm-hmm.

Dick Foley:
Rick, would you say--I know we hear cancer patients and cancer survivors tell us that the experience of having been diagnosed with cancer and then going through sometimes incredible treatment such as we're hearing about today has really profoundly changed their lives. Has your life changed in that way as a result of being a donor?

Rick:
I would have to say no.

Dick Foley:
Mm-hmm.

Rick:
I felt like I was doing, or that I did do something that anyone would do. From the point of view of the donor, I didn't do anything special.

Dick Foley:
Mm-hmm.

Rick:
I did what everyone should do. And that's pretty much the way I feel to this day. I can understand how the recipients feel, you know more emotional about it, but to the donor it's just like, yeah, that's something I got to do.

Dick Foley:
Right.

Rick:
I got to go help somebody.

Dick Foley:
Why don't we try to get to anything that we may have left out of our discussion, because I suspect there are going to be people out there who may be future donors who may have thought about it, those who may never have thought about it. Particularly Sheryl, you and Kip, or I'm sorry, Cindy and Rick. What would you say to those people who might want to join this growing cadre of donors?

Rick:
This is Rick speaking, and to any potential donors out there, it's basically a painless procedure. It's cost-free. [laughs] The Red Cross center that I had to go to donate blood and have all the testing and whatnot done was up in Charlotte, and then when I actually made the donation, that was in Winston-Salem, about 100 miles, and I kept track of every mile and the Red Cross paid me back. My employer gave me the time off with pay. That was very decent of them, so it was--it didn't cost me a penny, and the great feeling of satisfaction you get. Wonderful feeling of having helped somebody.

Dick Foley:
Kip, have you had any experience such as Sheryl talked about, and that is to be called upon to chat with others who may go through what you went through?

Kip:
Yes. I'm not formally on the list that my hospital uses--

Dick Foley:
Mm-hmm.

Kip:
--but I stayed active on some of the online forums, and just through my network of friends over the years I have talked to quite a few people who are facing not just something that requires a bone marrow transplant, but all types of cancer, and it's very rewarding to help these people. If you're familiar with Lance Armstrong, if you read his books, he basically said all he really wants to do with the rest of his life is help other cancer patients.

Dick Foley:
Right.

Kip:
So I feel the same way. If I could make a living doing that--

Dick Foley:
[laughs] Right!

Kip:
--I'd do it!

Dick Foley:
We hear physicians say from time to time, say that a good patient is a well-informed patient, and you've all talked about the Web and about the reading that you have done and resources that you have found that way. I would suggest that all of you are resources as well, and for people to speak with or even listen to the four of you, has been very helpful and supportive in anything that they may be facing. So I want to thank all of you for being so open with your stories and sharing them with us today. And to our audience, I would say that I hope this discussion has helped you with some of the issues that may be part of your life. Again, we express our gratitude to Cindy and to Sheryl, to Kip and to Rick for their willingness to share their stories as they have, their thoughts and feelings, and literally part of their lives with us today, and I hope their experiences will help you think about and talk about your own concerns in ways that are indeed healing. I encourage you to listen to other discussions we have available on the website at www.cancer.org and on the phone by calling 1-877-333-HOPE. That's 1-877-333-HOPE. For the American Cancer Society's Cancer Survivors Network, I'm Dick Foley, wishing each of you a great day today and every day.

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