Bone Marrow Drives and Donations

A lot of you have had questions about the Bone Marrow Drives and Donation. Hopefully this post will answer some of your questions.

First I am in the works to have a drive set up here in Hawaii. My mother is working with the Philadelphia office to set one up in York. I hope both of these drives will take place toward the end of August. That may be a bit of a rush, however it takes around 8 weeks for the results. The test are done with a mouth swab or simple blood draw.

If you are interested but are not in York or Honolulu, you have a couple options.

1. http://www.marrow.org/ at the top of the page in small blue print is a join now link. You can have a kit sent to you. Now this may cost around $52.00. That is the price of the kit. However my friends Jon and Shayna who are currently in Alaska received there kit and with the funding available through the Seattle office only had to pay about half the cost.

2. http://www.marrow.org/ under DONOR RESOURCES click on how to join. Then click on Join in Person. At this point you have a couple options. You can click on donor registration drive and search for drives in your area or click on contact your local donor center.

The National Foundation for Transplants phone # is 1-800-489-3863 if you have any questions or want to set up a drive in your area.

Now there are over 6 million people on the National Registry at this time. It is a game of numbers. The more people on the registry the better chance I will have as well as someone else of finding a donor and getting some of those happy little stem cells, or luscious thick yummy bone marrow.

Now a lot of the drives are free, however some of the local offices have run out of funding and will charge a fee.

At this time the drive in Hawaii is covered. They have funding for everyone.

The Philly office is out of funding for Caucasians. They have received grant money that will cover around half the cost of each screen. So any one who goes to the drive in York will have to pay $25.oo to $30.00 (if you are white). Sounds odd I know. A person is more likely (much more likely) to be a match if they are of the same ethnic background. Now that is not always the case, but the majority. So each race receives a certain amount of funding at each location. Over half the people on the Registry are white, and local facilities are more likely to go through there funding each year for Caucasians. African Americans only make up 2% of the registry. Asian only make up about 4%. So if you are interested in being on the registry and are black or Asian you may be able to get the mail in kit free. Give your local office a call. Could save someone life or at least give them years.

Some things to know about the process.

You will either have a simple blood test or a mouth swab taken for your HLA testing. HLA is the human leukocyte antigen. 6 proteins on the surface of your white blood cells with be tested for a match.

Once on the registry you will remain on the registry until you turn 61.

If you are a match the registry may ask to take stem cells. Which is a blood draw. You would be asked to take a stem cell growth factor called Filgrastim for a few days before to boost your stem cell production. Or they will ask to take some of your bone marrow. This is done under anesthesia so the donation process will not hurt. You may be a little sore after but not bad. You would not have to travel for either donation process. Collection is usually done locally at a collection center then hand carried (onto a plane) to the recipient.

I had bone marrow drawn once to verify the Oncologist diagnosis of MM. It was not that bad. I was expecting much worse.

If you have any question please let me know or contact the NFT. I hope this has been helpful. I know a lot of you are interested. Thanks Scott

and I was doing so well.

It's been a little over a week since my last post. It was a busy and productive week. I have started the ball rolling on Bone Marrow Drives here in Hawaii and back in York. Your continued support, again has been wonderful. With all the support I have received, positive thoughts and prayers, I may not have to fight all that hard you may beat this disease for me. Mentioning fundraiser has put some of you into a frenzy. Thanks. I will keep everyone posted as to our fundraiser plans and bone marrow drives as soon as we know specifics.



Until yesterday I had been doing much better and feeling much better then I had in months. My pain has continued to improve. I have even been able to tolerate lying down. That does not sound like much, but it is a HUGE IMPROVEMENT for me. I have been sleeping sitting up for a long time. Has kept down on the snoring if I must say. Everything seemed to be going well. Then a couple days ago I went to the ER and had an EKG (heart tracing) done. I had been having occasional palpitation over the last month, however each episode usually lasting no more then a minute or tow. A routine EKG was done over about a week ago and read as normal. Then a couple days ago my palpitations lasted 25 minutes or so, the EKG I had done in the ER was fairly unremarkable. However I will be fitted for and wear a halter monitor (portable heart monitor) for 24 hours next monday. I was o.k with that. It did not bother me or my spirit.



Today is a different story. Today I was diagnosed with a blood clot in my upper left arm. To treat it I was started on heavy duty blood thinners. I had slight pain in the back of my wrist and the bend of my arm 2 or 3 days ago. Very slight. Yesterday morning I noticed the areas were a little red. I actually thought the redness was from me rubbing the sore areas. So I made sure I did not touch my arm for an hour or so to see if the redness would resolve. It did not, so I call and talked with the oncology nurse who in turn talked with the Oncologist. Thinking it was phlebitis because the redness started just above my last IV site, they told me to watch it closely place warm compresses on the areas and call them if it got worse throughout the night. I went to sleep early yesterday. I was tired and feeling run down by yesterday evening (thanks to a day or so of GI problems). When I got up this morning the redness had spread up my arm connecting the too ares. I talked to the oncology team, went to my scheduled acupuncture treatment (second one I have ever had), after my treatment I received a call to come in so the MD. could check my arm. An ultrasound was ordered even though it was still thought to be an infection. It was and is however a clot in the upper part of my left arm. Before I could leave I had to get my new medications (lovenox and coumadin), demonstrate to the RN that I could give myself a shot and set up a follow up appointment for next Tuesday. I am sure it will be another day well spent at Kaiser. Nothing wrong with blogging sarcasm is there.



Needless to say I am bummed. Just a couple days ago I was thinking that with my pain under control I'll be able to live a fairly normal life until I head to California for my treatment. Now another heavy dose of reality.



I thought my next post (this post) was going to be lighthearted and upbeat. Next time. It's only been a couple hours since I left Kaiser. Spent the better part of the morning and some of the afternoon there. Could not wait to leave.



I do have your e-mails to look forward to. I have not check my e-mail for the past 2 days. I usually access the blog through my hotmail account and it looks like there were close to 20 e-mails waiting to be read.... just what I need I am sure.


Thank you again for all your support. e-mails, phone calls, offers to help with any and everything. I am truly blessed to have so many of you looking out for me. Scott


just a day at the beach.

Additional note. It's been about 10 hours since I received the news about the blood clot. & about 9 hours since I left Kaiser. I must say I am feeling much better now that I have had time to digest what has developed. That and catching up on my fluids. With the busy morning I was far behind on my H2O intake for the day. Not to mention having a low grade fever yesterday and last night, so I was sweating all night, and loosing fluids with my stomach upset. Any way I have caught up, and am not feeling run down like I was earlier. Would you believe that I drink about 4 to 5 litters of water per day. If I do not I am in trouble and will start to get dehydrated (headache, feverish,tired, crampy). Back to the point. My arm is still red, has a little swelling, and slight tenderness, but I am not bummed about it like I was. The news really hit me hard today. I was not expecting it... thought it was just a good ol' case of phlebitis. Get me some Keflex (anti-biotic) and fo-get-ta-bout-it. Peace, Love and Aloha.

was going to be a "Quick Hello" 7.12.07

Just want to say hi and let everyone know I am doing well. I am off the chemo this week. 21 days on 7 days off. My body is pleased, it truly enjoys the break from that chemo. I did not realize how it was effecting me. Now that I am off for this week. I have more energy, less cramping, less fatigue, and feel more "clear"... no fog... well not as much fog.

I actually met with the shrink today instead of Monday. All went well. He had just left the hospital after his second grandchild was born. So he was holding his new granddaughter at the hospital just before he came into work. I was the first patient he saw. He truly could have cared less. Nice guy, very personable, but he was on cloud 9 after seeing his new granddaughter. The whole process was a 2 hour waist of time, but he passed me as competent and sees no reason why I should not receive a transplant. Now some board with decide to test me and my brother to see if we are a potential match. If not I will be working on setting up a bone marrow registration drive in York and Honolulu. I will keep everyone posted.

I have an appointment with my Oncologist tomorrow. I will also have a EKG (heart test) do to some palpitation I have been having. Regular rate, not missed beats, but I have been a little tachy sometimes (heart rate over a 100 beats per minute) for no reason. It happen twice after drinking caffeine... A coffee one day and a soda another.. no big deal, however it has since happened a few times while at rest....

After that I will receive my second Chemotherapy infusion. Aredia. This is to help bind calcium to the bones. It is not to bad as Chemo goes. A month ago when I had this treatment it was followed with 3 days of fever, chills, sweats, body aches, bone aches, pallor, weakness, and fatigue. Like having a bad flu for 2 and a half days. I hope to do better with it this time. I will be watching "Children on Men" during the injection. Movie review to follow.

Lastly, I want to mention somethings that may happen. Now this is not set in stone, but a thought that was placed in my head by the social worker on Monday... Please feel free to send me an e-mail if you want to comment on anything I say or plan.... be nosey, not often will someone ask you for your 2 cents. First I am hopeful to make a trip back to York late September early November... I can not pin it down any more precise at this time... many, many, many, factors in play, however when I do come back for a visit I would like to put together a fundraiser. A large number was dropped on us ($) this past Monday. I will not give details unless you really want them. That's good you respect our privacy. You can control your curiosity. but damn $20,000 is a lot of money. Our social worker told us my treatment and so forth may reach that number. All depends on how things go.... She is the one that suggested a fundraiser. I have mentioned this to a few people and will brain storm with them and let everyone know what we come up with. Friends and co-workers here have already started planning something to help Serena and I financially. I have truly been blessed with so many friends and having so many people who care, truly care. As a patient with this desease you are helpless. (not 100%) You take you meds, You eat health, try to get lots of sleep, lean on your friends, talk about it, create a blog, but as friends.......... What can you do...... I know the feeling..... Someone you know is sick or hurt, going through a rough time.... what can you do.... 1.Be there for them. If they ask, come running..... but that is even hard.... your still helpless to help them unless they ask. At these times our power lies in our ability to do one thing GIVE. My friends and hani here in Hawaii have been wonderful. I want to thank them for the love they have shared, patients they have shown me, offers they have genuienly made, "Monte, I will personally cook you the best Haggas you have every tasted once I recover, thank you again for your kindness." and effort they have put forth to help me already. Thank you so much.

Now that being said....do you know what you can do for me, send me an e-mail with your home address. Pass my e-mail onto other friends, family members and acquaintances that we may share. People I have not upset to bad in the past (Mrs Golgen) I'd like to write and or send out invitations to the fundraiser we'll have when I get back to PA. You can also e-mail anytime... will always collect on more support and positive thoughts being passed our way. scottcraun@hotmail.com

Some people have commented on the blog, and I do not have a way to get in touch with you. Either your e-mail has changed. I never had your e-mail or your a stranger who just wanted to say something nice.... Thanks... if we have not exchanged e-mails in some time, please assume I no long have yours. I would like to write and say hi to you as well as make post on the blog, so.... you'll figure it out. Well it is midnight and my eyes are heavy... My spelling and grammar will be especially ripe on this post... Enjoy, you may need to find a 3rd grader to read and translate.

pictured below from one side to the other..... We have Serenas aunt Dibbie, her brother-in-law Davied, Her sister Nanisa, Her mom Elizabeth, Serena, Me, My mother Vicki, and Serenas brother Marcellus.... After putting this pic up without permission, I can pretty much cross myself off the christmas list of my inlaws. They all look good, and we had a wonderful time at our wedding and while everyone was in town, but I am not sure they want there picture on a blog without permission..... maybe I'll tell them i have Cancer and see if they let me off the hook.

Man of small percentages 7.7.07

Let me start by telling my Mom that I love her and it was nice to have her here this past week. Mom was here for a little over a week, and flew home Thursday night.

I continue to be the man of small percentages. (insert joke here) ........ I started on Fentanyl a little over a week ago for pain control. Now my pain is much improved. Like I mentioned in my last post I still have pain, however the edge is off and with the patch I get a continually does of medication. This prevents me from waking up in sever pain and then spending half the day trying to get comfortable. The reason I mentioned the percentages is 3-5% of the people who use the fentanyl patch report having insomnia and or restlessness. I have been applying the patch at night before bed thinking that is when it would be most effective and the most likely to cause drowsiness. This past Monday I was up all night and couldn't figure why. So I started using a sleeping pill on Tuesday and every night since. Then on Thursday night after applying the patch and falling asleep I woke at 1 am. I was wide awake with no chance of returning to sleep. Even though I had taken a sleeping pill 4 and a half hours before. That is when I called the company that makes Fentanyl and found out about the insomnia. The insomnia has only been bad the first night of each new patch. I do not always get full nights sleep on the other nights but I have been getting more then 6 hours each night.

The past couple days I have felt better then I have in some time. I can not explain how I feel or how I feel that is better then how I felt previously. I seem to have a little more energy without really having more energy. That being said I feel asleep on the couch today (sitting up watching TV) for a couple hours and did not realize I was tired, however when Serena got home and I woke up I did not feel drowsy or fatigued. I walked around the park yesterday and this evening. That is the first time I have been able to walk (exercise) for quite some time. Probably over 2 months.

Tomorrow will be my last dose of my first cycle of Revlimid (chemo). I did not receive a call from my Oncologist regarding my weekly blood draws this week. I would usually call to find out but left it be this week. I figured I would get a call if anything was abnormal. I will have more labs on Monday. Along with counselling from a social worker and a Psychiatrist. It is protocol to be evaluated mentally before undergoing heavy chemo, radiation, and transplantation to make sure I am "capable" (insert second joke here) of understanding what I will go through and handle the actual treatment. So on Monday 8:30 am Hawaii Time I will be getting treatment and evaluation that most of you have always thought I needed.

Lastly I met up with Physical Therapy this past week. They were not able to help me what so ever. I am not looking for any bad karma so I'll leave it at that. I took a couple pictures on my walk tonight. For those of you who know Hawaii no description is necessary. Seen in the picture is Diamond Head. It is not called that because of it's shape, but how it appear to sparkle when viewed by British Seamen in the 1700. Serena and I live near the base of Diamond Head across from Kapiolani Park where the picture was taken from.