Regine's Book (10 page)

I manage to get through it because I know it will grow back. Sooner or later.

But I wonder:

Would you date a person who had no hair?

Would you have enough courage to support your friend if she or he got sick?

What's more important: how you look or who you are?

A lot of these questions have simple answers, but for some people it's actually not that obvious, and that's why I ask.

Regine's post and her questions generated 96 comments. Included here is a selection of those comments, including some of Regine's replies:

Completing two subjects in three months sounds insanely tough, but you're tough, too—so it wouldn't surprise me if you were able to manage it. Otherwise, this thing about hair…My roommate had beautiful black hair with awesome curls when we met. But after a few years he got alopecia areata, that is, he lost his hair in large clumps, and eventually also lost his eyebrows and some of his eyelashes.

He was obviously crushed when he found out that his hair wouldn't ever grow back. It's also kind of weird when he meets old acquaintances who don't recognize him anymore, because he looks so different. But for me at least, it doesn't matter. He's the same, so what difference does his hair make?

—
Else

One of my girlfriends got leukemia, and she had a really tough time with it, with lots of hospital stays, etc. It was right in the middle of the second semester of our senior year, when everyone was super preoccupied with school stress and graduation. I visited her at the hospital a few times, but it was a long trip and I didn't have enough money to travel to Oslo very often, so we mostly just texted. But now that she's basically recovered and is trying to readjust to normal life, it feels more difficult to connect with her. It's as if the whole period of her illness
is lying between us like a chasm, and I don't really know what to do. I don't know if I'm allowed to ask about her disease, or if it's something she'd rather put behind her.

I understand that it's frustrating when people seem “scared,” but I'm not so sure it's just the hair. I think the lost hair is a symbol for the fact that you've been through hell, and people are reminded of that when they see you. For some people it's probably a kind of elephant in the room—something that no one talks about because they don't exactly know what to say or do. We Norwegians are just so afraid of conflict. I think it would help if you took some initiative. Maybe talk a bit about your experiences throughout the illness, and try to make it less threatening. Say what you said in the previous post—that you're optimistic, that you've got a positive outlook, that there's so much you want to do, and ask if they want to come with. Then you'll probably see them visit more. ☺

—
Heidi

Yes, but now I'm back home and the worst of it is behind me. I'm not going through a difficult period, so I don't understand why it's so difficult to know what to say. It's still not an excuse.

—
Regine

I stood by my best friend during her whole illness. There were times when she looked like hell (for lack of a better word). It was difficult to see her like that, obviously—so helpless against the almost constant pain. But what did that matter? She was someone I really, really cared about. At the same time, there was nothing I could do to help. Sometimes she couldn't do anything except just lie there. I tend to scrutinize people pretty carefully when I first meet them, but I try not to let those superficial judgments—whatever they might be—stop me from getting to know that person better.

For a lot of people the changes to your appearance won't be the most difficult thing to handle. The challenge for a lot of them will be finding the right words to use with someone who is going/has gone through something so serious.

—
Anonymous

Good entry! In my family there's a condition called alopecia areata. You lose some or all of your hair. If I got it I wouldn't care, though, even though my hair is my best feature. If someone teases me about cutting it or shaving it off, I take it really seriously and get really scared. But I know that if it really comes down to it and I do lose my hair, I'll just have to keep living my life, and try not to care too much about what other people say or what they think.

Because just like everyone always says, it's what's inside that counts!

I asked my boyfriend what he would do if I lost my hair. He said, “What would I do? It's not your hair that I love, it's you!”

And I would definitely have supported my friend if she'd gotten sick. If they're your friends, you should support them, no matter what!

You're an amazing girl, Regine! ☺

—
Stine Merete

Stine Merete: You're so brave for not caring about it! It's important not to worry about it either; it may not even happen.

Your boyfriend sounds great, too—he accepts you as you are.☺ You're lucky.

—
Regine

Wednesday, March 25, 2009

T
here was an article in the local newspaper about how there's a real shortage of blood donors. I skimmed the article and didn't catch everything because I was pretty busy that morning. Later in the day, though, my grandma told me that I was mentioned in the article, so I had to check it out. This is what it said:

Domino Effect

When cancer patient Regine Stokke blogged about her illness and agreed to talk to the newspaper about her experiences, the hospital was rewarded with an immediate response: More people began to register [as blood donors].

It's crazy to think that people had registered as blood donors after I told my story! That's great. I couldn't help feeling proud when I read that. Registering as a blood donor is so important. A lot of people have accidents and lose large quantities of blood, and every day more and more people are diagnosed with cancer. Blood donors help make it possible for people to survive both traumatic accidents and cancer. Maybe some people don't realize this, but blood transfusions are an important aspect of cancer treatment, if I can put it that way. Chemo destroys not only the malignant cells but the healthy cells as well, which makes your blood count drop, along with your blood platelets. And blood platelets are important as a means of controlling bleeding.

You can register as a bone marrow donor when you sign up to donate blood; but when you register as a blood donor, you don't automatically become a bone marrow donor, too. You have to eventually check another box on the same form, and I encourage everyone to do it. Even though most people succeed in finding a donor, there are still a lot of people out there who have to wait anxiously to get the help they need,
maybe because one of their parents is overseas, or for some other reason. People with rare tissue types (the determining factor in finding a bone marrow donor) sometimes have to wait a long time before they eventually find a donor, and in some cases, they don't ever find one. If you have a serious disease, this is a critical issue. These individuals need new bone marrow to survive, and in most cases they need it as soon as possible. The longer you wait, the more chemo cycles you have to go through to keep the disease under control.

Maybe you don't know what being a donor entails? Maybe it seems kind of scary to you? But the fact is, being a bone marrow donor is simple. Here's some more information.

Do you want to donate bone marrow?

Only blood donors can sign up, so contact your blood bank. As a volunteer donor, your tissue type must first be determined. This procedure is similar to a normal blood test. After your tissue type is determined, you will be registered in the bone marrow registry database. When a person needs a bone marrow transplant, they will identify a person with as similar a tissue type as possible. Blood type is not relevant. Stem cells are first harvested from the donor in connection with the transplant, not before. The number of people that are chosen to give stem cells is about one to two per thousand a year.

You can withdraw as a donor at any time before the patient's treatment begins. A reason for withdrawing is not required.

Stem cells can be harvested from your bone marrow and from your blood.

How do I give stem cells from my bone marrow?

How is bone marrow harvested?

The harvesting of bone marrow is carried out at a hospital experienced in harvesting bone marrow. The bone marrow donor is under
complete anesthesia. After that a needle is inserted in the back of the pelvic bone on both sides. The bone marrow, which looks like blood, is removed with the needle and collected in a blood bag. Only a small amount of the donor's bone marrow is removed, and it is used within a few weeks. The harvesting takes about an hour. The donor may return home the next day.

Does the donor need pretreatment?

No, there is no special pretreatment. However, the donor must start fasting at midnight the evening before the harvest.

Is it painful to donate bone marrow?

All donors feel some pain and tenderness around the hip bones for some days after the harvesting. One should be a bit careful with heavy lifting and strenuous physical activity for a week. There will be only very small scars, if any scarring occurs at all.

Is it dangerous to donate blood marrow?

If you are healthy, there is very little risk associated with bone marrow harvesting, and complications are rare. The donor will always undergo a thorough physical exam before the harvesting and will be given a detailed explanation of all aspects of donating bone marrow.

How do I donate stem cells from blood?

How can stem cells be found in blood?

Normally, stem cells are found in the bone marrow, but in some situations stem cells can also be found in blood after special treatment. In this case, the donor receives a shot with what is known as stem cell growth factor each morning for four to five days, which stimulates stem cells to flow into the blood stream. A stem cell growth factor
called G-CSF is currently being used. G-CSF is a substance normally found in the body that stimulates stem cells. When enough stem cells have flowed into the blood stream after the G-CSF treatment, the stem cell harvesting is started. The stem cells return to the bone marrow shortly after treatment with G-CSF ends.

How are stem cells harvested from blood?

Stem cells from blood are harvested with the help of a apheresis machine. The procedure is carried out at a hospital with significant expertise in the use of such machines. The blood is withdrawn in a manner similar to blood donation. It is then centrifuged in the apheresis machine in such a way that the stem cells can be removed. The blood is then returned to the donor's body. The procedure takes a few hours, and may be repeated the next day to yield enough stem cells. Just a small portion of the stem cells are removed, and these are used within a short time.

Is it painful or dangerous to donate stem cells from blood?

It is not much more uncomfortable than giving blood and the risks are very small. As the procedure takes some hours, you may become a bit tired. The blood circulation and blood values are monitored carefully, and the apheresis is stopped if the donor feels unwell.

Is there any discomfort or danger linked with G-CSF injections?

Little risk is associated with daily shots of G-CSF. Almost everyone gets side effects in the form of bone or muscle pains. Many become fatigued, and some also get a bit of fever and/or headache. The discomfort can be alleviated with Paracet or stronger medications. Most people can continue to work during the G-CSF treatment, while others take a few days off from work. Everyone is given a thorough physical examination and informational session before the treatment.