tag:blogger.com,1999:blog-77523756015870439372024-03-05T00:19:51.489-08:00RW Brain TumorThe story of how I came to learn that I had a brain tumor, what is happening with it now, and what we are going to do about it.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.comBlogger97125tag:blogger.com,1999:blog-7752375601587043937.post-73399470268039217792012-12-20T23:50:00.000-08:002012-12-26T23:50:30.131-08:00It has been 18 months since Russell passed away. A lot of people are wondering how we're doing. If you'd like an update on the family head over to my blog <a href="http://www.carissawentworth.blogspot.com/">Welcome to Brighton</a>.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com1tag:blogger.com,1999:blog-7752375601587043937.post-64013294819057634052011-07-21T23:16:00.000-07:002011-07-21T23:22:14.559-07:00FuneralRussell passed away last night after a 7 year battle with cancer. He was always brave and sweet and he will be dearly missed by all his friends and family.<br /><br />The funeral will be held Saturday July 23, 2011 at 11:00 a.m. 100 East Malley Drive, Northglenn, CO 80233. <br /><br />He will be buried in Riverton, Utah at the Riverton City Cemetery on Tuesday July 26th at 11:00 a.m. 12830 S. Redwood Road, Riverton, UT.<br /><br />In lieu of flowers a scholarship fund has been established for his children. Donations can be made to the Russell Wentworth Memorial Fund at any Wells Fargo Bank.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com3tag:blogger.com,1999:blog-7752375601587043937.post-26043243706271912812011-06-20T08:25:00.000-07:002011-06-20T08:32:33.576-07:00Hospice Care CenterThis past weekend I had a couple of falls. No major injuries, just some cuts and bruises, but my left side doesn't really work anymore and it is difficult for my wife to move me around. We checked in to the Hospice Center last night and so far things are ok. My two main complaints are that I'm no longer in charge or my medication, and that the food is only served at specific times and with a specific menu. At my old hospital I had a large selection of foods that were delivered room service style. I could call down any time day or night and order what I wanted. The upside is that there are lots of good restaurants nearby and my wife is willing to get me take out.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com5tag:blogger.com,1999:blog-7752375601587043937.post-50763948085930413062011-06-16T10:00:00.000-07:002011-06-16T10:06:30.507-07:002011.06.15 Shortness of BreathToday I experienced a new symptom: shortness of breath. We were concerned about this so my wife called our Hospice nurse. The nurse told me to take some liquid Oxy and that seemed to help. She also ordered some oxygen to be delivered to the house and came by to check on me. She couldn't find any specific reason for my difficulty in breathing. <br /><br />My mobility and coordination seem to be a little more off. Perhaps I'm just more tired.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com3tag:blogger.com,1999:blog-7752375601587043937.post-33892157657390055282011-05-30T10:17:00.000-07:002011-05-30T10:35:30.875-07:002011.05.30 HospiceWe have stopped Avastin therapy and are focusing on hospice care. Avastin is something to extend one's condititon. The big question is what quality of life am I extending? Chemotherapy isn't helping anything, My vision and physical coordination keep deteriorating. The left side of my body is almost useless. It is all about comfort care right now. I have been able to keep the pain under control. My<a href="http://lds.org"> faith</a> and the love & support of family, friends, and fellow churchgoers keeeps any depression away. I know that the end of this mortality is not actually the end of my existence.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com7tag:blogger.com,1999:blog-7752375601587043937.post-44921671096318208912011-05-20T07:15:00.000-07:002011-05-20T07:36:04.158-07:002011.05.20 Life As A CatThis must be how a cat feels. I need to rest/sleep at least as much as I am awake each day. The steroid dose I am on helps greatly with the headaches. I still have headaches, usually daily though. <br /><br />I love being off chemotherapy. At least I can't blame myself for getting sick. It is nice to know I am not causing any of my fatigue either, like when I used to take thalidomide. Here are a list of all of my current problems: partial paralysis of the left side of my body, loss of almost all of my left visual field, impairment of my coordination so I can't walk well, button my pants or shirts without help, general vision problems (blurry and sometimes double vision).<br /><br />I am grateful I am able to be home with my family right now instead of in some care home.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com2tag:blogger.com,1999:blog-7752375601587043937.post-11287573200959220432011-05-09T20:18:00.000-07:002011-05-09T20:26:04.913-07:002011.05.09 Working From HomeThe fatigue and more painful headaches have made it so that I am trying to do what work I can from home. I also have daily problems with my vision and physical coordination. I wish I could help my wife more with work around the house and running errands. It has been wonderful to have so many of my coworkers bringing us meals to help out.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com1tag:blogger.com,1999:blog-7752375601587043937.post-40747830298090713612011-04-27T11:44:00.000-07:002011-04-27T11:54:29.820-07:002011.04.27 Fatigue & Minor HeadachesI have been trying to work full-time. My employer initially questioned the wisdom of my attempts to do so, but I want things to be as normal as possible for as long as possible, and, I like my job.<br /><br />Unfortunately, I just couldn't last the day this week. I have had to go home early everyday this week and have had minor headaches yesterday & today.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com1tag:blogger.com,1999:blog-7752375601587043937.post-48193360717290072842011-04-20T01:55:00.000-07:002011-04-20T02:12:46.550-07:002011.04.19 The Beginning of the EndIjust returned from a 10-day trip to Europe where my wife & I celebrated being married for ten years. The trip started off well, but my health deteriorated rapidly. I no longer have full control of the left side of my body. Vision & coordination are impaired. I have to hunt & peck with my right hand now to type. Had an MRI today and the doctor expects the symptoms to only get worse. You know it is bad when the conversation is about you and hospice care is mentioned.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com5tag:blogger.com,1999:blog-7752375601587043937.post-73531303267935534122011-03-23T06:23:00.000-07:002011-03-23T06:28:48.756-07:002011.03.03 Stable & UnchangedI had a MRI scan this morning and when the doctor, my wife, and I viewed it, everything was the same. When everything stays the same when checking on a highly malignant tumor, that is a good thing. I am still hoping for tumor regression some day.<br /><br />I had a hard round of chemo, using Irinotecan and Avastin. My health insurance is giving my doctor and I problems covering treatment with those drugs. We're trying to solve the problem.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com1tag:blogger.com,1999:blog-7752375601587043937.post-50089860824101719802011-01-01T12:19:00.000-08:002011-01-01T12:27:56.836-08:002010.12.29 - Stable & UnchangedWe had another MRI scan today and it appears that there was no change from the last one two months ago. That is good, but still not what I hoped to see on the scan images, which is regression. I had "hard" chemo (CPT11, Navelbine & Avastin). I wasn't feeling good after the CPT11. We might stop using Avastin for a while, but we won't make that decision just yet. My physician recently attended a conference on the use of Avastin and some physicians are questioning whether it is appropriate for continuous use. <br /><br />When there is diffuse tumor progression, like we saw two months ago, the tumor cells are piggybacking the blood supply of healthy cells. The hypothesis is that perhaps if the patient stopped receiving Avastin for a while, the tumor cells would develop their own blood supply and once that took place, chemo might be more effective against the tumor. It is a concept that hasn't been tested.<br /><br />I hope you had a Merry Christmas! I did.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com3tag:blogger.com,1999:blog-7752375601587043937.post-38145582555312109632010-11-08T20:42:00.000-08:002010-11-08T21:09:12.932-08:002010.11.08 - Disease ProgressionMy last MRI scan was on 2010.10.21 and it appeared that there was more disease extending toward the back of my head. It was somewhat diffuse. I had "light" chemo (navelbine and avastin) this past Friday and had a consult with my neurooncologist. He met with other neurologists and neurosurgeons and they all thought that there was progression of the disease. My doctor isn't pleased right now because I have tried many of the drugs available for treatment of Glioblastoma Multiforme and the disease is still progressing. My doctor recently took me off Accutane and added Tamoxifen to my list of chemotherapy agents. Other than cancer, I appear to be healthy and happy. I have a wonderful family, I love my job, and I live in a great place. I think that this whole experience may be to teach me humility. I don't like to ask for help and you can't fight cancer alone. You need doctors, nurses, family, friends, and a belief in God and Jesus Christ.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com3tag:blogger.com,1999:blog-7752375601587043937.post-51418152227296530572010-09-09T19:34:00.000-07:002010-09-09T19:50:38.873-07:002010.09.09 - Managing With ChemoMy neurooncologist wanted me to try some older, harder to tolerate, chemotherapy drugs and to take them every two weeks. After the first dose of the old, hard chemo, I was sick for five days. I decided that being sick a third of the time (five out of 14 days) was unacceptable. I wasn't going to live my life feeling that way, that often. We came up with a compromise. I would take the lighter, more recently prescribed, chemo every two weeks or so and the old, hard chemo once a month. <br /><br />My nurse wanted me to try some new anti nausea drug that she hopes will help more. The nausea is the part I like the least. In addition to the nausea, each chemo drug seems to have some effect on my gastrointestinal system, either diarrhea or constipation. <br /><br />The neurooncology portion of the office is having their annual long-term survivor party soon. I am considered a long-term survivor. Hard to believe that having a brain tumor for five years and a malignant and aggressive one for a mere two of those years qualified me as a long-term survivor a year ago. I don't plan to go to the party this year. I don't feel like much of a survivor after having surgery again four months ago and going back to the old, hard chemo. <br /><br />I am able to work full-time and workout. I went running after my last dose of the lighter chemo. My next dose of hard chemo is in one week.<br /><br />P.S. Whoever posts comments to my blog in Chinese, please stop.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com1tag:blogger.com,1999:blog-7752375601587043937.post-80791045615544292062010-08-08T06:39:00.000-07:002010-08-08T06:48:57.061-07:002010.08.08 - Three Months Post OpThe pain is completely gone, the incision is fully healed, but I have a small pocket of fluid between the skull and my scalp on the right side of my head. Both neurosurgeons advised that they must have connected with a ventricle when they went inside the brain in May to remove all of the new tumor tissue. Ventricles are fluid filled areas of the brain that allow cerebral spinal fluid to travel through the brain and spine. When the part of the skull was put back in place after surgery, they were unable to get a tight seal, so there is a small gap between the piece they cut out to do the surgery and the remainder of the skull. The fluid pocket appears to be getting smaller and smaller over time and hardly anyone can tell it is there unless I push on one part and make another part move. I am able to workout again and feel well most of the time. The chemotherapy has side effects, but for the most part, I can cope with most of them.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.comtag:blogger.com,1999:blog-7752375601587043937.post-54455729250289016012010-06-20T12:00:00.000-07:002010-06-20T12:44:20.946-07:0006.20.2010 - Six Weeks Post OpThings still aren't what I wanted them to be. I still have head pain and I still feel a lot of fatigue. My aerobic ability is absolutely shot. I can only do so much until I need to lay down and rest. I am back to work full-time though. Most of what I do at work is sitting and periodic light walking.<br /><br />The head pain is manageable. I take a couple 200mg tablets of Advil and any pain usually leaves within 45 to 60 minutes. I would really like the fatigue to go away. I need to push myself each day until it is gone. I need to sleep more each day and end up going to bed at the same time that children do. <br /><br />The right side of my head still had some swelling, but it is minor. There is no good reason why I should still have head pain. All I want is to feel normal again.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com13tag:blogger.com,1999:blog-7752375601587043937.post-72474418633908060922010-05-22T17:33:00.000-07:002010-05-22T17:52:40.327-07:0005.22.2010 - Two Weeks Post OpI had my third craniotomy of the right temporal lobe and the neurosurgeons removed all of the new growth. It had doubled in size since that MRI on 04/13/2010 where my neurooncologist and I had discovered it. It was still pretty small though. The incision site has healed very well and there is little visible swelling that remains. The surgeons used <a href="http://health.howstuffworks.com/question611.htm">dissolvable stitches</a> instead of staples this time. It looks a lot better post-op than staples did the last two times. I was conscious after surgery really quickly. They released me from the hospital before I should have and I had a lot of seizures at home, which meant I had to return to resolve that issue (adjusting seizure medications). <br /><br />After I was released again, the pain was difficult to manage. I am able to manage the pain now, but did not expect to still be taking strong pain killers so long after surgery. No one seems to know why I have the pain, but at least it is getting better. <br /><br />We saw the neurooncologist yesterday and developed a treatment plan. I will have to get a port, which seemed scarier than it actually is after I learned more about the procedure. <a href="http://en.wikipedia.org/wiki/Port_%28medical%29">A port</a> is a permanent place where I can receive chemotherapy drugs and can have blood drawn from. It is a big deal to get one, but it should reduce the number of future needle sticks that I will have in the future. The time line for when treatment should end is indefinite right now. We will just go from MRI scan to MRI scan and see how I am doing. I will be taking a few different chemotherapy agents and biologics. I received my first dose of chemo that day, something called <a href="http://www.chemocare.com/bio/navelbine.asp">Navelbine</a>.<br /><br />My neurooncologist also thought I would be appropriate for an experimental clinical trial of a <a href="http://www.cnn.com/2010/HEALTH/03/04/vaccine.brain.cancer/index.html">brain tumor vaccine</a>. We will see if he can get me into that program.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com0tag:blogger.com,1999:blog-7752375601587043937.post-62577934848555188632010-04-24T08:18:00.000-07:002010-04-24T08:20:22.047-07:0004.23.2010 - Surgery Is ScheduledIt has been scheduled. I will have surgery in two weeks. Both neurosurgeons believe this will be a relatively simple procedure and the area of new growth is small and appears to be contained.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com0tag:blogger.com,1999:blog-7752375601587043937.post-10650562247355788422010-04-13T16:54:00.000-07:002010-04-14T17:01:32.851-07:0004.13.2010 - New Tumor Growth :(I had another MRI today and unlike all of the other ones in the last two and a half years, my neurooncologist saw new tumor growth. I was disappointed. He is actively working on a plan, which may include restarting Avastin and use of the Gamma Knife, which is radiosurgery. When will this tumor just go away? Cancer can't kill me. This is just one more battle in the war and I will be victorious.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com5tag:blogger.com,1999:blog-7752375601587043937.post-88245510422828849402010-03-14T18:35:00.000-07:002010-03-14T18:41:50.362-07:0003.14.2010 - Seizure Control Sans Side EffectsFor the past week and a half, I have been using Vimpat in addition to Keppra. The Lyrica was cut out of the plan at least a week or so before that after it caused my feet to swell, which was a very bad side effect according to <a href="http://www.drugs.com">Drugs.com</a>. It has been working well. My health has been good overall, though I haven't been able to run. I ran a few times a week ago and my knees hurt. I have been trying to focus on weight lifting instead.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com2tag:blogger.com,1999:blog-7752375601587043937.post-6655286183099987552010-02-20T09:11:00.000-08:002010-02-20T09:26:41.699-08:0002.19.2010 - Seizure Control With Side EffectsI saw my neurooncologist today after my MRI scan and the tumor was still stable and unchanged, which is great. I started another five-day round of Temodar, an oral chemotherapy agent and will be doing that monthly. The plan now is to continue with that until October, which will be three years post-diagnosis. I had to stop taking Avastin because it was causing me to have high blood pressure. He wanted me on either Temodar or Avastin until the three-year mark. On 01.25.2010, I saw a seizure specialist and she took me off Lamictal and put me on Lyrica. I now take Keppra and Lyrica. I haven't had seizures since then, but Lyrica can cause weight gain and I have been slowly gaining weight. That side effect really sucks! I talked to my neurooncologist about it and he said there are other drugs that could work without that side effect. Let's see how much weight I gain before I object to the effect.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com1tag:blogger.com,1999:blog-7752375601587043937.post-49499444116222539302009-12-31T18:44:00.000-08:002009-12-31T18:52:11.879-08:0012.31.2009 - Looking Forward To No SeizuresI am looking forward to a year of no seizures. We are still adjusting the anti-convulsant medication and the addition of Lamictal has helped. I had my last appointment with my neurooncologist for the year. <br /><br />Avastin seemed to be a drug free of side effects, but that may not be the case. My blood pressure has been elevated the last couple of visits to the doctor's office and I am usually someone with textbook pressure - 120/80. I never have high blood pressure. I asked my chemo nurse whether any of the drugs I was taking can elevate blood pressure and she immediately replied "Avastin." I will now have to take my blood pressure a couple times a day for a couple weeks and see if this elevation is going to be a regular thing. If so, I could either continue taking Avastin and possibly take drugs to lower my blood pressure or stop taking Avastin.<br /><br />My blood counts were all good. I have a five-day round of oral chemotherapy with Temodar to begin this evening. It's never fun, but it's not that painful either. I like to eat at night and you have to take Temodar on an empty stomach. It's only five days though.<br /><br />Having no more seizures is one of my goals for the new year. It's not like I have control over it though.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com3tag:blogger.com,1999:blog-7752375601587043937.post-42529781977545562892009-12-20T14:15:00.000-08:002009-12-20T14:23:05.779-08:0012.15.2009 - A Day in the Emergency RoomMy wife and I spent all of 12.15.2009 in the emergency room. I woke up and had a partial seizure and then a migraine headache. I have been having more migraine headaches recently. My prescribed pain medication didn't do the trick. It had been two hours with no pain relief. My doctor wanted me to come to the emergency room as soon as possible. We found people to watch our children and my wife took me to the emergency room at the hospital that my doctor is affiliated with. We have a hospital only three miles away, but that isn't the one my doctor is affiliated with. <br /><br />Service in the emergency room was SLOW. I guess only those people spurting blood out or who came in via ambulance get fast service. My migraine headache was finally gone after five hours had passed from the time I took the oral pain medication that morning. A MRI scan revealed that the tumor was stable and unchanged. We are trying to work on dealing with the seizures and adjusting medications until I don't have any more break through seizures.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com0tag:blogger.com,1999:blog-7752375601587043937.post-77107085267678145502009-11-11T15:33:00.000-08:002009-11-11T15:38:02.259-08:0011.11.2009 - Good Scan, Yet Had A SeizureI had a MRI today and the scan went well. No new growth and things would seem to be going well, but I had a seizure recently and that set me back a bit. The doctor adjusted my medication in response to it and I now I can't drive for a while. It is very frustrating to be prevented from driving. This tumor is making me angry. I am sick and tired of problems from this. Why is this thing in my life anyway? What am I supposed to learn from this experience? I think it is time for someone else to take a turn with the evil tumor and give me a break from it for the remainder of my life.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com1tag:blogger.com,1999:blog-7752375601587043937.post-71213496457200837542009-10-28T06:26:00.000-07:002009-10-28T06:35:15.675-07:0010.26.2009 - A Bad NightSince stopping intravenous chemotherapy, I have still continued with oral chemotherapy consisting of Temodar for five nights every three weeks or so. The last of the five nights from this most recent round was Sunday night and it didn't go so well. Usually, I just experience discomfort from the constipation that Temodar causes and the inability to eat in the evening, which I often do. You are supposed to take Temodar on an empty stomach and wait a couple hours after eating before you take it.<br /><br />Sunday night, I ate a decent size dinner and then a little later took my evening pills. I always take Levetiraceta (generic Keppra) each day to prevent seizures and I take my nightly dose with Ondansetron (generic Zofran) on the nights that I have to take Temodar to prevent nausea, which almost never happens (the nausea). I took the Temodar when I meant to take the other pills and then when it was time for bed and I probably would have had an empty stomach, I took the other pills.<br /><br />At 0200 hours, I woke up and felt sick. I hoped it would pass, but it didn't. I went to the bathroom and perched myself over the toilet and vomited. I didn't think that this small error would cause that to happen. I am tired of all these drugs and perhaps it is time to stop taking Temodar. When I went to the doctor's office on Wednesday, 10.21.2009, and had IV Avastin and started nightly Temodar, my blood counts were lower than was expected but okay to proceed. The next visit will be a consult with the doctor an a MRI. How much more chemotherapy, even oral chemo, can my body take?Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com0tag:blogger.com,1999:blog-7752375601587043937.post-50743260705922493622009-09-09T17:17:00.000-07:002009-09-09T17:26:24.587-07:0009.09.2009 - The End of IV ChemoYes, it is real this time...it is the end of intravenous chemotherapy for me. I had a MRI scan of my brain this morning, as I usually do every eight weeks and the scan showed no new growth or activity in the residual tumor tissue. After I have the scan each time, I always see my neurooncologist and we discuss treatment and where to go from here. <br /><br />He invited me to do eight more weeks of chemo to bring me to the end of October, but I declined. He invited me to try etopicide in oral form, but I declined. I said I was willing to continue taking temodar and he was perfectly alright with that. The present plan is to do my five-day temodar regimen every three weeks accompanied by one 30-minute avastin session at his office. Avastin is not chemotherapy. It doesn't make me sick, it doesn't make me drowsy, it just helps slow the growth of rapid growth cells.<br /><br />I was doing five-day temodar sessions each time I had intravenous chemotherapy, which was usually every four to six weeks. Temodar is taken orally before bed. I will need to go into his office to have my blood counts checked every week and a half and we'll see if doing it at three-week intervals works out.<br /><br />Both Carissa and I carefully considered this decision and prayed a lot about it and we feel it is the right decision. Haven't I done enough chemotherapy? I think so. I should miss less work, feel better, be able to grow my hair back, and spend less time with a needle in my arm.Russell and Carissahttp://www.blogger.com/profile/07533083290707155258noreply@blogger.com1