Post Surgical Update

My surgery went well, and without complications. I now have a Hickman catheter sticking out of chest. However I did underestimate the potency of the chemotherapy (Cytoxan) that I received on Saturday Dec. 15th. I was sick for a few days after being dosed. I spent Sunday in the hospital being medicated for nausea and hydrated by IV. I was discharged on Monday, picked up by Ryan List and spent the next 2 days feeling seasick or hungover. I had a few dry heaving episodes that were quite memorable. They only lasted a minute or two each time, but were quite forceful in nature. The first was strong enough to open my surgical incision a little.


It has been a week since my admission and I am feeling much better at this time. Our friends Ryan and Kristy have been a blessing. They have put themselves out on our behalf. I will include a picture of them below. (without permission) The fools have left Serena and I in there home (unsupervised) while they traveled east for the Holidays. What were they thinking?





As my treatment goes or as preparation for my treatment goes. I am now taking Neupogen Shots. Neupogen will help my body produce more white blood cells. City of Hope will harvest them (as stem cells) before they mature. So at this time the worst part of my day our the injections. I have to give myself Lovenox injections (blood thinner) am and pm, and my Neupogen is divided into 2 syringes which I administer in the late afternoon. I also flush both ports of my Hickman Catheter and currently change the dressing 3 times a week.

Back to the Blog

I am back to Blogging. It is 9:47pm (Pacific Standard Time) on December 13th. I do not want to over due it on my return so this blog will be short. Serena and I are in Duarte CA @ the City of Hope Hospital. We have been on Campus since Monday. I am scheduled to have minor surgery tomorrow to have a catheter placed for future treatment. After the out patient surgery I will have a few hours until I am admitted overnight to receive chemotherapy. This is not the heavy duty stuff I will receive just before my transplant. This will help my body mobilize the white blood cells for stem cell collection later in the month. You know with all this typing.... I am gonna have to call it quites for the night. Stay tuned for the post surgical update.


If you want to be sent an e-mail that tells you when I have made a new post to the blog... please let me know. Send me an e-mail letting me know and I will add you to the list. I am unable to view the list so you may get placed on it twice or thrice... if so sorry..... scottcraun@hotmail.com


Have a nice weekend, and Happy Holidays.

No post for 2 weeks? It is a good thing.

It is hard to believe I have not posted a blog in 2 weeks. I am feeling better and better since the start of my chemo. I am no longer on any type of pain medication. I am sleeping well, and have found myself on a routine of going to bed around 9:30 pm and getting up around 6:15am. I have been walking and jogging every morning. Not very far (1.5 - 2 miles) or fast 25-35 minutes, but it is nice to get some form of exercise in everyday. Since I am feeling better (in general) i am not spending as much time in the house or in front of the computer. Hence I have not posted a blog in 2 weeks, and it is a good thing. It is not for a lack of things to report or for the fact that I do not have anything to say (have never be to shy to open my mouth and make a fool of myself).

I can finally tell you about my protein levels. I will start sith the normal level for my abnormal protein is 179. When I was first diagnosed my levels were well over 3000. Close to 20 times the normal level. At the time my oncologist suggested that it was high. Suggested in a way that I took for "wow or ____ they are high!". There are only 3 stages of MM and with all other test being normal and there were a number of them, he classified me as intermittent sage 2. He stated that if any other test would have been abnormal or borderline I would have been classified as stage 3. All because of my friends the M proteins. The most recent protein level drawn showed that my levels had decreased to a little over 500. About 3 times the normal level. What does that mean for me (beside feeling better and not having pain), my doctor will check the levels again in 3 weeks. If the number is within the normal range he will then take another bone marrow sample. If the marrow is clean enough (his words), he will then start the process of getting me set up for City of Hope in Duarte California. It the levels are still above normal we go another month. If the levels are good but the marrow is not, we go another month and re-evaluate again.

So I am feeling better. I am having more and more problems with my digestive system thanks to the meds, however it is a trade off I will gladly accept. I also have a good bit of cramping in my legs (mostly my calfs). I continue to be hot most of the time, and I have started to have a little more neuropathy (side effect of the chemo...) in my toes and feet. I had to through some aww poor Scott stuff in there, I don't want you to know I am doing cartwheels... not yet anyway.

I want to thank Jon (JW). For the past 5 or 6 years from the end of August to the end of November Jon has been house sitting for a couple. Jon asked this couple who Serena and I have met a few times if it would be ok for us to house sit, do to our situation. They had no problem letting us invade there home, and take care of there children (2 black labs). Serena and I will begin our house sitting, and dog walking duties on the 23rd of this month. Thank you Jon. Saving 2-3 months rent will go a long way. Below is a pic of Jon with a pike he caught while spending the summer working and playing in Alaska.

Next I would like to thank Leigh. Leigh is an RN who works at Straub Hospital. I have know Leigh for about a year. Leigh does not specifically work in the ER, she is a STAT Nurse. She carries a pager and is called to help with critical patients in or on all the units. Since she is not an ER Nurse I have not had the chance to see and talk with her as I can with others who work in the ER. That being said everyone in the ER is fond of Leigh. She is good people. You do not have to know her very long to pick up on her kindness, and joy for life (outside of work) yoga, surfing, her dog, dinning out with friends. Now I mention Leigh because she held her 3rd annual kickball tournament 2 weekends ago. She held it as a fundraiser to help with our upcoming medical bills. It was a rainy, sunny, rainy, rainy, muddy day in Manoa Valley. 8 teams entered from various hospitals and friends. Everyone had a blast. People donated time to ref the games, items to raffle off, beer for the thirsty competitors. The games were fun, and I got a chance to see a lot of friends and colleagues that I have not seen since the beginning of the year. Leigh thank you again. It was a great way to spend a Saturday.

Lastly, the day after the kickball tournament Serena and I flew over to Maui to see our friends Derek and Leia. Leia is 39 weeks pregnant. We have not seen them for about 9 months. (Since Leia was 2 weeks pregnant, not that anyone knew at the time). I just want to wish them well and let them know we truly enjoyed our visit.

Take care everyone. I hope you are all doing well.

Back on track

I am starting to feel better again, since the blood clot. It took it's toll on me mentally and physically. The swelling in my arm is finally gone. For the most part the pain has resolved as well. I have some tenderness in the upper part of my arm and the vein that my last IV was in (that became infected) is still rock hard and tender to the touch. I am still limiting what I do with my arm, however I feel my doc. will says it is o.k. to use it as long as it does not hurt when I see him next (this coming Friday). It has been tough mentally because I was feeling so much better just before it happened. The pain in my ribs has all but resolved. It takes a pretty hard sneeze (which i have been doing a lot of lately) to feel any pain. I have been able to sleep lying down, walk for exercise, put my socks and shoes on without thinking about it. The day before I was diagnosed with the clot I was talking to a friend of mine he asked how I was feeling. He said you sound so much better then I had in some time. This is someone I talk to almost every day. My response to him was that " I feel better then I have since I first broke my ribs last November. I think I will have a pretty normal life for the next few months, until I go to California for my treatment. I think I will be able to get back to the gym start stretching again, swim at the beach and maybe even do some hiking." I had not expected to feel that good, maybe again. Or at least until after my radiation, heavy chemo and transplant later this year. So you can imagine feeling bad and having pain for so many months, then finally feeling better, much better, normal even and the next day reality pulls the rug out from under your feet and puts a clot in your arm. That can really bumb you out. So it is not the clot it self that bothered me, but what it meant. If I obtained a clot on Aspirin as my anti-coagulation drug I would have to take something much stronger. And with Coumadin comes it's own risk and side effects. It is a very effective blood thinner, but it is strong and when on coumadin you have to be a little more careful of what you are doing and of your surroundings then you do on Aspirin. On top of that I had to give myself shots of Lovenox twice a day (in the stomach) for almost 2 weeks until the Coumadin started to work and my blood levels became therapeutic. So now that I have recovered from life's most recent swift kick to my balls we are moving forward.

The bright side. My pain. It is better. Regardless of the clot and blood thinners. I have been able to walk around the park for exercise. I even tried to jog yesterday. I could literally only jog 100 yards before I had to walk again. Sad but I was glad to do that, and do that without pain. Hopefully by next week I will be able to swim around the ocean a little.

I still do not have the results of my last protein levels. The evil guys that are trying to eat away my bones and attack my body. I feel they are going to be dramatically lower. The reason is my pain. The pain I was having in my ribs was from the lesion the proteins caused. They eat away the bone causing the lesions. Since my pain has resolved, the chemo must be keeping up the good fight which in turn gives my body (ribs) a chance to heal. If the proteins were still causing havoc my ribs would not be able to repair themselves. Pretty good if you ask me.

I finished my second month of Chemo today. So I will be off the medication for the next week. Last time I was off the chemo I felt so much better. I did not realize that I felt that crappy while I was on the meds, until I was off of them. On a daily basis I fell normal. Normal just happens to equal crappy. It is amazing what you can get used to. Aches, pain, being tired with no energy... if it is a daily thing you don't think of it.. you wake up and go about your day. So needless to say I am looking forward to the upcoming week.

I hope everyone has been having a nice summer. I hope everyone is doing well. Take care, don't forget to take some time and relax, enjoy what is important to you. Scott Pic: Lake Labarge, Yukon Territory, Canada.

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.

Numbness 6.30.2007

Hello everyone, it's Saturday morning and I have found some relief from a new pain medication that I started yesterday. I applied a pain patch last night. Fentanyl. It's quite strong. Much stronger then what I have been taking. My pain is a lot more tolerable, still present but the edge is off, mind you I have not had to cough or sneeze yet today. Actually I have not allowed myself to sneeze for quite some time (probably more then 3 months) and my coughs are quite pathetic. I have a feeling my subconscious is constantly reminding the rest of my body that somethings are just not allowed. We'll see how it goes over the next day or so. It may end up being a little strong for me (making me sleepy), if so I'll either be sleep walking or have to get my Doc to write me an Rx at a lower dose. I was able to get a referral to the pain specialist and will see them next week Friday.


The results of my first blood test since starting Chemo where normal. A complete blood count was done. They will be doing a CBC every Monday for the next 8 weeks. Checking for a decrease in my white blood cell count, or signs of anemia.


As side effects go you can add neuropathy to my growing list of side effects. The bottom of my feet become numb after only brief periods of standing, and my ITB band (located on the outside of your thigh from your hip to your knee) often feels light... hard to describe, it is floating sensation very irritating. My sleep has not been the best do to not feeling tired when I should. I seem to sleep o.k. once I fall asleep, but late in the evening into the night after I have felt tired much of the day I no longer seem tired. I have been prescribed sleeping medication, but have been reluctant to take them. Seems silly I know, but my chemo is known to cause blood clots, and if I take a sleeping pill I may not move around much if any while I am asleep for 6-8 hours increasing my chances of developing clots. I do have a plan, but I will need some help from Kaiser.



The plan: Starts by saying Thank you to Kimberly B. Kim is a friend who gave me advice that should have been a no brain-er for me, however it never crossed my mind. Get a referral to P.T. see if they have any assistive devices to help me with my daily living activities, getting dressed, in and out of bed, scratching my butt, also looking into the chance they have bolsters to help my positioning at night along with electronic compression socks that would circulate the blood from my legs while I sleep to decrease the chance of blood clots.. and the big one see if I can get my insurance to help cover the cost of a recliner or hospital bed... if it comes to that. I have an appointment this coming Monday so we will see.


Watch out Lizzy you now have a picture on the Internet. Pictured below is Kahu Wendell Silva who presided over out wedding ceremony. Serena's mom Elizabeth, the Vickster and the newly weds.

Just some pic's 6.28.2007

I wanted to let everyone know all is well. I have some updates but it is late and I will post them sometime this weekend. My mom got into town on Wednesday, so we have been catching up. Above is my buddy Stuart I worked with him at Straub Hospital and Clinic... or I should say I worked near him. Never saw him do much work while I was there. Stuart took me out on Lake Wilson the other day for a little fishing. Casting is manageable and tolerable after a good bit of pain medication. We were fishing for peacock bass but struck out. I did have a catfish catch himself while I was baiting my second rod. Hansom bugger. Below are a few pic's from my trip to Alaska last year about this time. We camped out under Denali... Mt. McKinley. The mosquitoes were absolutely brutal. You can see what I wore most of the time. My hat and bandanna are made with insect repellent in the material. I want to thank everyone once again. Your support is wonderfully overwhelming... I pic's are shrunk a little. I think you can click on them and they will open up to there taken size in another window. Not for sure...

Big Changes Short Time 6.24.07

In less then a week my world has completely changed yet again. Since my last posts I have come to a realization and made a very hard decision. In order to give my body the best chance of beating this disease I have decided (with Serena's support) that I will no longer work in the hospital setting. I only worked 2 shifts last week, a 4 hour ER shift and an 8 hours shift in Radiology. Both shifts were easy and without incident, but were very hard on me physically. Just getting up and down reaching across a table and so forth. My fear is that at any time I could "Over do it" wearing myself down or hurting myself worse.

Friday night I tried to sleep lying on my side. It was nice once positioned on the bed. It felt good not sitting up and being off my back (the only way I can sleep). However after just a few minutes I felt a couple of my ribs crunch and my pain has been intense ever since. (2 oxycodone every 4 hours helps... really helps, not to mention the Mojito I had with dinner).... but that is how fragile my ribs have become...

......... back to not working, the reasons why this decision was so difficult to make.... is that I am finally admitting "I can't do this by myself". Like I mentioned in an earlier blog, I have been called stubborn. Even with my Dx. and the prognosis that comes attached I planned to continue working while I received treatment and continue my life without pause. That is no longer possible and I will have to start reaching out for support beyond positive thoughts and prayers.

I want everyone to know it is 9:18 am Sunday morning and what has been typed above is done by a person who feels good. The changes Serena and I will have to make without me working will suck, the fact that it will not be long until I have to sleep in a recliner will suck, the fact that at this time we don't own a recliner and I will have to go "shopping" (shopping... that may be worse then cancer) stinks as well, however it does not depress or distress me. It is just another step in our fight.

On a lighter note I have been taking Chemo for a week without much to write about. Other then having a little fatigue, slight muscle aches, and some not so pleasant but not to bad lower GI statements everything is going well. I will have blood work done on Monday to check for changes in my blood cells. Not the abnormal plasma cells floating around causing havoc (those little shits) but my red and white blood cells. One of the sever side effects of my chemo medication is what it can do to your normal blood cells. besides that my body, actually my skin is often hot, very hot but without me running a fever. When I go to bed and throughout the day I place freezer packs wrapped in a hand towel against my neck, legs or stomach. Also I don't think my deodorant works as well now.. not sure why that is, but that is about all there is to say on my treatment..

On a refreshing side..... I have been know to sample a nice lager, porter or Ale on occasion. Serena and I both enjoy Red wine and would open a bottle once every week or two. I did not drink often or much before I became sick and even less since. Now that being said....... I brewed beer yesterday with my friend Kevin. It is something we had talked about for over a year. It will be a summer ale ready for consumption the beginning of August. Just throwing that tid bit out there so people know I am not confined to the house... it takes me a little longer to get around, but i am still around......

Keep smiling........

Thanks for you response and Support 6.20.06

Thank you everyone. All of the positive thoughts, prayers, and support we have received have been wonderful. I am still not sure how I'll use this blog. As a semi daily journal for myself (as a little release), which in turn keeps everyone else up to date, or an occasional snippet from time to time. The suspense, oh the suspense. As for Serena I am sure she'll throw something up here at sometime. She has been checking the blog when she gets home from work and has read every one's comments.

So, for now I just want to say thank you again, and please feel free to pass on the e-mails I have sent to other friends and old school chums whom you may still be in contact with..... It's nice to hear from everyone, and a pleasant surprise to hear from people you've been out of contact with for so long...

For some reason, the saddest part of my day is when I read e-mails and comments from everyone. I am not sure why I get so chocked up and teary eyed. It's not like you have posted your pictures on the e-mails.... :) But it does. I guess all the love and support is a daily reality check that I need to remind me that my body is in a fight for it's life. I have been called stubborn once or twice over the years. Hard to believe I know. First off have you ever heard of a man being stubborn? I must be a trend setter.... Any who Serena told me that now is a time that my stubbornest may really come in handy to help me put this disease in it's place. sorry off the subject there, back to the point. After I read your e-mails, get chocked up, shed a few tears and blow my nose I feel great emotionally, recharged. So if you plan on sending more it maybe a good investment idea to buy stock in Kleenex or Puffs first. Thanks again. Scott

Side effects? 6.18.07

A few months after I had moved to Hawaii (Feb 2000) my roommate Joe introduced me to a friend of his that he grew up with from the Island of Kauai. "Scott this is chemo" I thought he was B.S. ing me. I never met someone named Kimo however it is a fairly common name in this part of the world.

On Friday I was introduced to another type of Chemo.... I received my first IV dose of a Chemo medication called Aredia (Brand Name). The purpose of this med is to bind Calcium to my bones. In hopes to make my ribs and sternum stronger. I have had multiple rib fractures over the past 6 months and currently have 8 lesions. 5 on my ribs and 3 on my sternum. The lesion constantly hurt, some days and times more then others. These lesions are caused by abnormal proteins in my blood that eat away the bone causing pain and weakening the bone. For 2 days after my injection I did have fever, body aches, and malaise... felt like to flu, however it has passed and now I am on to bigger and better drugs.

Today Monday June 18th I started my "heavy hitter" a Chemo medication called Revlimid. I will be taking it in one month cycles (one pill a day for 21 days with a week off) for the next 4-6 months. I will have weekly blood draws for the first 8 weeks of treatment, do to the side effects this medication often causes (Anemia, Neutorpienia, and Blood Clots, not to forget the likely event of kidney failure that is common when proteins levels are extremely high like yours truly.) I took my first dose about 5 hours ago, and to the best of my knowledge I have not turned green or sprouted another arm so, so far so good. Along with the Revlimid I will be taking a high does of steroids which I have been told will have me bouncing off the walls or keep me awake, along with Aspirin to fight against Blood Clots. The Steroid (dexamethasone) will be taken once a week (every Monday) and the Aspirin on Daily... and again so far so good.

As many of you have seen the the picture above before you are aware that it is not me as a result from side effects of my meds... oh if it was.... we would be in for a heck of a party with the money received from that law suit..... it is however a pic from Waimanu Valley (Big Island) in it is the worlds most renown snipe hunter telling a tale late at night around a camp fire..... a tale of a hunt... a snipe hunt... the most dangerous snipe hunt never before recorded or documented... with the only living survivor telling the tale of the hunt.... a hunt that went wrong.... horribly wrong.... and a story of a that hunt.... a story that ended in blood shed and tick bites.... blood shed from tick bits.... horrible tick bits that left scars on the great snipe hunter... deep scars...

The Blog Begins 6.18.07

Just giving this blog thing a chance. Want to check how user friendly it is in hopes to keep people posted about how things are going.

If this works you'll see a pic of me by the Golden Gate. Serena and I took a long weekend there about a month ago. It was a week or so before my offical diagnoses. However my diagnoses was not a complete shocker... I was pretty certain of what the Hematologist/Oncologist was going to say before I got the official Dx.

Serena and I had wanted to go to San Fran. for sometime and we knew if we did not get away when we did it may be some time before we got another chance.