It 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 Welcome to Brighton.

Funeral

Russell 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.

The funeral will be held Saturday July 23, 2011 at 11:00 a.m. 100 East Malley Drive, Northglenn, CO 80233.

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.

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.

Hospice Care Center

This 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.

2011.06.15 Shortness of Breath

Today 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.

My mobility and coordination seem to be a little more off. Perhaps I'm just more tired.

2011.05.30 Hospice

We 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 faith 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.

2011.05.20 Life As A Cat

This 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.

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).

I am grateful I am able to be home with my family right now instead of in some care home.

2011.05.09 Working From Home

The 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.

2011.04.27 Fatigue & Minor Headaches

I 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.

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.

2011.04.19 The Beginning of the End

Ijust 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.

2011.03.03 Stable & Unchanged

I 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.

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.

2010.12.29 - Stable & Unchanged

We 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.

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.

I hope you had a Merry Christmas! I did.

2010.11.08 - Disease Progression

My 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.

2010.09.09 - Managing With Chemo

My 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.

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.

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.

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.

P.S. Whoever posts comments to my blog in Chinese, please stop.

2010.08.08 - Three Months Post Op

The 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.

06.20.2010 - Six Weeks Post Op

Things 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.

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.

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.

05.22.2010 - Two Weeks Post Op

I 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 dissolvable stitches 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).

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.

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 port 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 Navelbine.

My neurooncologist also thought I would be appropriate for an experimental clinical trial of a brain tumor vaccine. We will see if he can get me into that program.

04.23.2010 - Surgery Is Scheduled

It 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.

04.13.2010 - 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.

03.14.2010 - Seizure Control Sans Side Effects

For 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 Drugs.com. 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.

02.19.2010 - Seizure Control With Side Effects

I 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.