Robert & Tara Fight Against Hodgkin's Lymphoma

Merry Christmas!

2009-12-22T19:48:00.001-08:00

It's the Holiday season and I just wanted to post so everyone knows that I am still doing well.

I've been busy with house work and just finished building a nice workshop / storage shed to replace the garage I'm about to loose as we finish it in to accommodate my father, who is now living with us. I hope to have everything squared away by the end of this spring.

Since I've been graduated to 4 month oncology check-ups I still have not seen Dr. Grapski but have a follow up appointment with him in mid Jan.

For the record I am still taking Low Dose Naltrexone without any side effects and I'm still cancer free.

Hope everyone has a Merry Christmas and is looking forward to a New Year!

- RK

Better Late than Never...

2009-09-13T07:29:00.000-07:00

I know it's been almost 6 months since my last post. It's a wonder my high school chums were passing the rumor around that I had passed away. I always thought how funny it is that people think that cancer is an automatic death sentence.

Since Feb. this year Tara and I have made the transition from vegetarian to vegan. In the past 7 months I have dropped 30+ pounds and 2 pant sizes. The amount of energy I have now is incredible.

My last PET scan was in July right before my 28th birthday and it came back clean just like the last. I'm still taking LDN as precautionary measure to prevent any chance of relapse as well as incorporating all the best mother nature has to offer into my diet.

Since March I have taken up the sport of paintball which helped me realize how much bone and muscle mass I have lost since I went through treatment. I have been suffering some lower back pain due to a pinched nerve between my L5 and S1 lower lumbar that is most likely due to some bone deterioration in my vertebrae. Until recent it was even painful to due regular daily activities but now I'm almost recovered enough to hit the gym again. I have to take it easy as my body is still recovering joint, muscle, and bone mass that I lost months ago.

So far I have accomplished to have a very fun summer. Work flew me to Orlando, FL in April to attend WES (which was awesome), in May I helped organize a 48hr paintball scenario game that was a blast, in June I got to attend the semi annual Southeast BMW rally in Smoky Mountains, In July my brother and I had to take a road trip to PA to bring my father home to live with me after he suffered a stroke and lost use of his left leg, and in August work flew me to Houston, TX for a week to attend BES 5.0 training. Last and most recent was our vacation to Emerald Isle, NC where we rented a beach house with 6 of our closest friends for a week.

My next appoint to see Dr. Grapski comes up in a week or two and I have a strong feeling everything is going to be fine. I feel great and can't wait to get back into the gym again!

I am truly blessed.

- RK

Most Recent Checkup and Everything in Between..

2009-03-29T08:06:00.000-07:00

I know its been a while for those of you trying to keep up with me I just had my 2nd checkup with Dr. Grapski since my treatment ended and everything is still good. I have a follow up PET scan schedule for July 1st and I am 99% positive that it will come back clean.

One thing I have started taking since I went into remission is LDN or Low Dose Naltrexone to prevent any chance of relapse. I had to find a doctor in PA to prescribe it to me since not many doctors, including my own oncologist, know enough about it. If you are currently in remission for any kind of cancer I highly suggest you research the possibility of taking it. You can find a wealth of information about it here: www.ldninfo.org

Otherwise work has been great and play time has been even better though I did have to recently sell my favorite play bimmer to pay some medical bills I still have one last play car I hope to restore by the end of this summer. On top of that one of my best friends, Adam, has moved back to Knoxville after finally finishing his time in the Navy. It looks like this summer is going to be a busy one since I have to make up for lost time last year. Between the 48hr scenario paintball game in May, the Southeast BMW rally in June , my birthday in July, and a week on the beach in early September I have plenty to do.

So don't be surprised if I don't blog again until mid July.

- RK

Follow Up Radiation Treatment

2008-12-05T14:06:00.000-08:00

I finished my last radiation treatment yesterday. I had a total of 17 mantle radiation treatments. 14 over my upper chest and 3 extra "booster" treatments directly on the area where the cancer was originally discovered. The only casualty was a section of my goate that was zapped off so I had to shave my chin for the first time in almost 8 years. I feel like I look like I'm 18 years old again.

The only side effects I can really feel are a very sore throat from what I was told is sort of "sunburned" inside and pleurisy. The good news is that my hair is slowly growing back though it is very straight and light brown instead of black.

I have a follow up with my Radiation Oncologist in late Jan. and another PET scan coming up in late Feb. or early March. From what I understand my doctors will be following me very closely for the next 18 months. I ask everyone to continue to pray for me to heal and not to relapse. Once I hit the 5 year mark I am officially considered "cured" though both my Oncologist and Raditiation Oncologist put my success rate at above 90% considering how well I've responded to treatment.

Thanks to everyone that has been praying for me and please continue to keep me in those prayers. Also, if you know someone who needs prayer please do not hesitate to let me know so I can do the same.

Merry Christmas & a Happy New Year!!!

Treatment #8 and Everything in Between Radiation

2008-10-30T21:21:00.000-07:00

I promised that I would not be one of those people that go into remission and never post again because they are better. To be honest treatment #8 was pretty bad. I got sick 3 times in the infusion center and they had to give me two doses of Ativan to calm me down.

I was well again in three days and I never looked back. I have been very active since I have become chemo and cancer free. Most notible was the Southeast Fall BMW Rally in NC I recently attended. I love camping and driving so I got some hard earned time off relaxing in the Blue Ridge Mountains.

I also met my Raditiation Oncologist, Dr. Strike, a couple days ago who seems like a really good doctor. I really like his positive personality and from what I've been told I will be receiving a low dose of radiation that will not be anything close to chemo in terms of side effects. I start treatment on Nov. 5th and should finish up right before Thanksgiving. The idea is this will keep any stray cells from coming back so keep me in your prayers.

In the meantime enjoy this video we made of the rally.

Remission: It's Official! + Treatment #7

2008-09-18T13:16:00.000-07:00

It's official from Dr. Grapski's mouth. I am now considered to be in remission. Thanks to everyone who kept me in their prayers even to those people who don't even know me. God hears and answers prayer but you must truely believe that before you can accept his healing. Overall you must be dilligent and keep your head up high.

I'm by no means the picture perfect Christian but I've always had a strong belief in God and I still talk to Him on a daily basis. I hope if you are reading this and do not have a strong relationship wih HIM that one day you will. It's vital for so many reasons I cannot express. The greatest this about knowing God is that whether or not I survive cancer I win. That truth is my only secret to keeping such a good positive attitude no matter what.

As far as my treatment I am not out of the woods yet as I have to complete my last round of chemo and have some light dosage of radiation to insure I do not relapse. My last chemo treatment will be Oct. 2nd. and I start 15-20 days of radiation treatment around the end of October. I also had my 7th treatment today which I must admit, I lost it right before the nurse was going to stick me. They had to give me Ativan directly into my IV which pretty much knocked the senses out of me.

Now I just have to make it through this weekend and get my car prepped for the Southeast Fall BMW rally and make it to work Monday.

Treatment 6 and Recent PET Scan (Hallelujah!)

2008-09-15T15:19:00.000-07:00

I've been purposely waiting to update my Blog because I knew I had a PET scan coming as well.

As you can see from the picture EVERYTHING is gone! I scanned my PET disk from head to toe. Not one single hot spot (what little red you do see are main arteries). I'm no oncologist but I really hope this means that I will not require radiation treatment.

Praise GOD! Prayer has been answered! I sort of already knew that this scan would be good because I had this overwhelming feeling that I had nothing to worry about. Almost like when you study for hours before a big important test and you know you're going to make an A+.

Since I had to fast before the scan after it was done I stuffed my gut with the worst possible food that I love. Super hot chicken wings and french fries.

As for my last treatment, I will not lie.. It was tough. I got the sickest that I have ever gotten since I started chemo. I wasn't even able to leave the house until Tuesday so I even missed a day of work. I did bounce back very quick. I certainly swear by the Sunrider products I eat now on a daily basis. Once the chemo sickness subsides I feel better and have more energy than I did BEFORE I started these treatments. What's even more amazing is that I have this much energy after completely kicking all caffine and processed sugar products. I even spent this entire past 3 day weekend out n the humid 91 degree heat working on cars and helping a friend move into his new home.

I see Dr. Grapski on Thursday to see what he thinks of the PET scan and where we go from hear.

Treatment #5 - Feelig Better?

2008-08-25T07:14:00.000-07:00

Treatement #5 was just this past Thursday and the Lorezapam helped a little but I still found myself fighting nausea while I was in the infusion center. My chemo treatment went fine and the doctor now says we will do the next PET scan after my 6th treatment.

I've finally shaved my head and just recently this past weekend got a sunburn on it. I'm still growing facial hair but my eyebrows are starting to thin out some. Tara says the baldness looks good on me but I do not intend to keep this look any longer than I have to.

As far as I can tell everything is going well. All the affected lymph nodes are no longer swollen and are back to normal size. The only one you can feel is the size of a pea. My hope is that the treatment is going so well that there will be no need for radiation.

The odd thing is that my energy and recovery rate from chemo is getting shorter. After my 4th treatment it only took me 3 days before I felt normal again and this past treatment only really affected my stomach but I have better energy levels. I've found prayer to make a huge difference in my recovery rates. Everyday I pray for healing and quick recovery the better I feel. I also started to double up on the Sunrider nutritional products and I can consume them even when I have terrible nausea. I now swear by the NuPlus herbal food they sell as well as the Quinary I mix in with my shakes. Its one of God's answers to my prayers.

To anyone else out there fighting cancer, no matter what your prognosis is my best advice to you is keep a super positive attitude no matter what. No matter how bad you feel. I'm the kind of person that does not believe on giving up so no matter how bad things get I fight. Partially because I'm a poor loser and partially because I'm strong willed. In the end you have to decide to live and then you have to do everything in your power to achieve that. I firmly believe that is why my treatment is going so well. I meet people all the time that have no idea I have cancer because I do everything I can to continue living like a normal human being.

Treatment #4

2008-08-09T16:49:00.000-07:00

Thank God I'm halfway there.

This has been by far the worst treatment yet. The fatigue and nausea are the worst I've experienced yet. My nausea started before I even got my chemo infusion. Now that my brain associates the infusion center with getting poison the smell and sight of the infusion center makes me extremely nauseated. Luckily the doctor prescribed some Ativan to help with the nausea before my next round.

Soon I should be getting my 2nd PET scan to see how much of the cancer has been killed off.

Sorry this is a short post but in all honesty I'm drained. For those of you praying for me please ask God to give me more energy and a quick rebound. I've gotten so behind on everything around the house I feel like I'll never catch back up.

Treatment #3

2008-07-25T13:08:00.000-07:00

I got my 3rd round of chemo Thursday and my Nuelasta shot today. The good news is that my CBC came back with much better numbers. Mainly my WBC count was up to 9.2 as opposed to 2.4 before the previous treatment. Also my Lymphocyte count was up and back into normal ranges even better than what they were before my 1st treatment.

I think the real difference is that I've been eating the Sunrider products atleast twice a day. Mainly Alpha 20C and the Quarinary with the NuPlus herbal food. I recovered from my last treatment much faster as well. Instead of taking 7 days to recover I was feeling normal by late Wednesday. I thank God for the wealth of nutritional information and people he has provided to help me through this.

I also thank God for the tremendous amount of support I've received from family, friends, and co-workers. I am so blessed to have a job that has such a supportive team of co-workers. I'm 100% convinced that God placed me in my current position to make sure I had the proper support I needed to get us through this. I can't even imagine the amount of stress I would be under if I were still working for Alcoa's corporate office.

Wednesday I got a boost of support in the form of a phone call from my old boss Dr. Abidi at UT. I've always respected him and it made me feel good to know he and the rest of the IRIS team had me in their thoughts as well. Friends from http://www.r3vlimited.com/ and Genmay.com unexpectedly donated a total of $850 that has already come in handy to paid the medical expenses that insurance will not cover. I receive random emails from members, old friends, and calls from family. It's times like these you realize how easily you take for granted the people who care for you. This is especially true for my loving wife Tara. She's been going to great lengths to understand my situtation and completely change our diet and lifestyle to reduce her risk of cancer and hopefully keep me in remission for a long long time once this is over. She also makes the best all natural vegetable soup ever and has been very helpful around the house where I have been slacking on these chemo weekends.

Today is a struggle as I know the aftermath of my treatment will soon rear it's ugly face as soon as the steroids wear off. My stomach is the only thing that really give me trouble, I almost feel as if I'm pregnant. Craving something one minute and then not being hungry for anything the next. My best friend Adam is coming to hang out with me tomorrow and hopefully I will feel good enough to get out and buy some new hats. I already buzzed my hair last weekend but now my hair is so thin that I will probably be shaving it completely off this weekend to avoid the mess of hair I keep leaving on my pillow and in the shower drain.

Now it's off to Firehouse Subs before I completely loose my appetite for the day. I leave you with this mandatory MCR video about cancer. I know it doesn't reflect my current situation but it definately made me think of how I can use this situation to help others.

Round 2.... Where's the WBCs?

2008-07-11T17:10:00.001-07:00

Today was round 2 of my ABVD chemo regiment.

Note to self: Do not fast before a ABVD chemo treatment.

Chemo treatment wasn't too bad but my GRA# and WBC was almost too low for me to get treatment. So tomorrow I have to go to Fort Sanders Regional to get a Nuelasta shot to boost my immune system. On a good note my Lymphocite count and RBC were either up or barely effected.

My sister sent me some cool books for my b-day and I've already completely read "The Cancer Survior Plan" which most importantly says Adriamycin patients definately need food in their belly cause it's so harsh on the digestive system.

The book also explains links to cancer and its reoccurance to patients with Metabolic Syndrome & Insulin Resistance. Much of what it ties into and the diet it suggests are both very similar to what is suggested in the Acid/Alkaline pH book I've already read but for different reasons. In short, it says the reason Americans are more prone to getting cancer is because we indulge in junk foods and it's catching up to us. Our bodies are built for survival BUT since our culture has taught us indulge in junk foods over time our body begins to lose the balance it needs to keep itself in check because it's main source of nutrients over a long period of time is essentially the equlivent of putting regular fuel in a car designed to run on premium. Sure you can drive on it but eventually it breaks down more often and at lower mileage intervals than a car runs on premium.

As for myself, I cannot pinpoint the exact reason I have this cancer. In many cases where young adults are involved it can be a combo of a genetic trigger set off by a major viral infection such as Hep. A, B, or C, HIV, Mono, etc. Such as my luck I had Hep. A food poisoning about 3-4 years ago and Hodgkin's usually show up 2.5yrs-4yrs after that major infection. Between that and my careless eating habits, past smoking habit, social drinking, inconsistent excise routines and poor sleep habits I'm sure I've run my body through metabolic hell.

Most importantly I hope my diet changes can help for me to recover from the chemo side effects faster but the drawback is that I've lost 10lbs in 30days. Dr. Grapski didn't like that. Chemo might have played a small roll but I also think my first initial fast and dramatic change in diet is partly to blame as well. Here's to praying this round is no where as near as rough as the first.

Last, my b-day was yesterday and I got some awesome Guitar Hero jammy pants from Tara. I wore them to chemo today to brighten up everyone's day. Enjoy the pics.

The First Round

2008-06-29T06:43:00.000-07:00

The first round of treatment was actually on June, 27th 2008.

I had decided to go on a water only fast 2 days before my first chemotherapy treatment based on some online reading I did about the subject. The idea is that your healthy cells go into a shielded state once they have been starved for 48+ hours. The cancer cells don't have the same programming that healthy cells do so less healthy cells get killed in the toxic chemical onslaught.

What I didn't know was that a 48hr water fast would also make my body to begin filtering out its own toxins so the 2 days before I was enduring low energy and bouts of stomach cramps & nausea though the day of my chemo treatment I actually felt pretty good.

After waiting a few hours my treatment started at about 11AM. First with some Decadron & Alloxi to help with nausea and then on with the chemo. First was Adriamycin which they nickname Big Red because of its color. Next was Bleomycin and then a small baggie of Velban. Last was Dacarbazine which came in a big baggie and took the longest to go through. Probably about 2hrs total and it burns a little at your IV site. Everyone at in the chemo center was very nice and accomodating and our nurse, Susan, was very quick to answer any of our questions.

Once I got home everything was fine for about 2 hours. I continued to fast because I wanted to make sure my body had passed most of the chemo before I ate any food and brought down my cellular shield. Well, I started to get some horrid stomach and lower intestinal cramps unlike I had ever had in my life. I was a little nauseated but at first resisted the urge to vomit to keep fluids down. Finally I let myself run to the bathroom to vomit. Mostly green / yellow bile and stomach acid. After a few bouts with the toilet bowl I was finally able to settle in to watch a movie and eat some soup & crackers.

Today and yesterday I've mostly been lounging around the house trying to restore my energy. Things are starting to taste a bit off and my appetite is weak. My mother came over yesterday to show me how to properly use the Sunrider products she bought for me. They seem to be a pretty good quality health product so I hope it can help rebuild my T-Cell, RBC, and WBC counts before the next treatment.

How it all began...

2008-06-28T05:44:00.001-07:00

It all started on March 26th, 2008 when upon returning from some IT training in Raleigh, NC I discovered a lymph node in the left clavicular region of my shoulder had notted up to about the size of a marble. Knowing that my grandfather had Lymphoma (no one in the family seems to remember which kind) I knew that I needed to have it checked out ASAP.

March 28th, 2008 I had a visit with my family doctor Dr. Murff. He found an additional swollen lymph node that I had not and then gave my a prescription for Augmention (850mg twice daily for 10 days) with the explannation that it was probably an infection. After 7 days my lymph nodes were still the same size and I could feel additional discomfort in other lymph nodes in the left side of my neck. I immediately went back to visit Dr. Murff and asked for some testing to be done.

Dr. Murff explained that he was still not alarmed and that it is common for lymph nodes to swell for extended periods of time. To ease my mind he ordered a CDC blood test and a chest xray. Both came back good. He then also referred me to a surgeon to make the decision of whether to biopsy any of the lymph nodes.

April, 18th 2008 I finally had my appointment with Dr. Kropilak my surgeon. He too was convinced that the swollen lymph nodes were to small to biopsy. To make sure that it was necessary he requested I see an oncologist first. He then referred me to Dr. Grapski at the Thompson Cancer Survival Center.

I didn't get in to see Dr. Grapski until May 4th, 2008. This was the first appointment that Tara started coming with my to support me and help calm my anxiety. Dr. Grapski is a great onocologist from what we have gathered especially with working with the type of cancer I have. At our first appointment I expressed my concern for the fact that Thyroid cancer and Hodgkin's runs in my family though just like Dr. Murff he first suspected possibly just an infection but mentioned that he did not like the placement of the swollen nodes. He gave me a prescription for a Z pack and told me to return in 30 days if the swollen lymph nodes did not reduce in size. (In Dr. Grapski's defense he did offer to go ahead and request a PET scan or biopsy instead but we opted out since I was unsymptomatic of Hodgkin's at the time.)

On June 4th 2008 I returned to see Dr. Grapski to let him know the 2nd round of antibotics did not work and that 4th small lymph node in the same area had become affected. He immediately ordered the biopsy from Dr. Kropilak.

On June 11th, 2008 Dr. Kropilak performed the biopsy to remove the largest lymph node in my left superclavicular region of my shoulder. It probably measured slightly larger than an inch in size. I was in an out within 3 hours and everyone at the surgical center was great. Once my surgery was finished Dr. Kropilak told Tara that the tissue was slightly harder than he ancipated but that the node was still swollen as if it was infected with Cat Scratch Fever. He then promsed to follow up with us once he got the results of the biopsy which would be in 2-3 days.

June 13th, 2008 - I'm riding around with my best friend Josh around 4:30 in the afternoon. I first get a call from a nurse working with Dr. Grapski who tells me they don't have the results yet but they wanted to go ahead and schedule an appointment for me first thing Monday morning. I immediately knew something was not right. 5 minutes later Dr. Kropilak calls me in person to break the news. In his own words he said "It looks like you were right and we were wrong, you do have Hodgkin's Lymphoma of the Nodular Sclerosis type." At first it was a terrible shock I broke down and cried like I hadn't cried in years. My friend Josh gave me a big hug and cried with me. Once I regained my composure I called all my closest family and friends to break the news. I have found that talking about it with other has been the most theraputic method for me to keep my chin up.

June 16th - 20th became a week of test after test to help stage my cancer and create a baseline of vital signs before I started taking chemotherapy. First it was a PET scan to stage my cancer and a PFT and MUGA scan to create a baseline for my heart and lung function, then blood was taken multiple to measure hemoglobin.

June 24th 2008 - Back to Dr. Grapski's office to find ouy my offical staging and treatment. From what he found in my PET scan he says it's Stage IIa Hodgkin's Lymphoma because it's still generally locallized in my shoulder areas and some had began to migrate south into lymph nodes in the chest area between my heart and lungs.. My treatment will be ABVD Chemotherapy every other Friday for 4 months for a total of 8 rounds then will follow up with Radiation therapy to catch anything left floating around. I was excited to hear that it would be only 4 months but I could tell Tara was dissapointed because she wanted it to be Stage Ia. After I reassured her that Stage IIa is not a bad diagnosis and things could have been much worse she was fine.

Now that you know the background the real blog begins.