New hyper treatment: Hyperbaric Oxygen Therapy

Although our general course of treatment has been to kill cancer globally in Garrett’s body, the original tumor at the surface of his skin has been one of our choice targets. As I said before, destroying this tumor won’t stop other areas of growth, but it would be a symbolic victory and an improvement to our quality of daily life. The last targeted treatment, hyperthermia, had very few long term risks and offered the possibility of healing this chronic skin deterioration. Since ending that treatment we have not seen the tendency toward healing that we had hoped for, but we don’t know yet that it was a total failure. The changes that happened to this tumor during hyperthermia may still be a good sign, but our previous attempts at treating it with radiation may have gone too far and caused this persistent state of non-healing. Divers out there may be familiar with hyperbaric oxygen therapy (HBO) for decompression sickness, but it is also useful in promoting healing of chronic wounds such as bed sores, diabetic foot sores, and chronic radiation damage.

“Chronic radiation damage is called osteoradionecrosis when the bone is damaged and soft tissue radionecrosis if it is muscle, skin or internal organs which have been damaged by the radiation. Since the 1970’s, surgeons of the head and neck region have come to recognize the value of hyperbaric oxygen treatments in treating damage of the jaw bone due to radiation. Hyperbaric oxygen has had some of its most dramatic successes in treating or preventing damage to the jaw bone as a result of radiation treatments. It has now also been applied to damage of the brain, damage of muscle and other soft tissues of the face and throat, damage to the chest wall, abdomen and pelvis as a result of radiation treatment. Papers in medical journals also report success in treating damage to the bladder and intestines due to radiation. The high dose oxygen provided in the hyperbaric chamber is carried in the patient’s circulation to the site of injury to be available for repair of the damage done by the narrowing and scarring of the blood vessels. Each treatment typically takes one to two hours, and usually 30-40 daily treatments are needed for healing radiation damage.”

These 1-2 hour treatments involve breathing 100% oxygen (about 20% in normal air) in a pressurized chamber so that the oxygen levels in your blood stream reach 10-13 times normal levels. The increased oxygen level in the blood provides support to injured tissue to promote the growth of new blood vessels, purge toxins from the body and enhance the killing of bacteria. In some clinics you can watch TV while getting treatment or sleep, after our consultation at St. Joseph’s we will know better what Garrett’s experience may be like.

Interestingly, HBO is being tested in conjunction with some cancer treatments to heighten cancer cells sensitivity to radiation and chemotherapy and help prevent radionecrosis. It is also being tested out for brain repair after a stroke and body repair after sports injuries.  It seems like another good treatment option with low risks and a bright future for many ailments.

Chemo #5 up and up

At Garrett's chemo appointment this week we got several pieces of good news. One, Garrett’s blood counts were up. It hasn’t been long since his last blood transfusion, but some weeks he’s already feeling low, not this time. Two, he gained 3 lbs over the last two weeks! Adding some extra calories everyday seems to be sticking for the first time in many months. Three, our oncology team referred Garrett to the Hyperbaric Medicine department at St. Joseph’s in Tacoma to consult on the potential for a hyperbaric chamber to promote healing at the skin tumor which has not improved visibly since the end of hyperthermia treatments. We look forward to learning more about hyperbaric medicine and I’ll post more information on it after I do some research this weekend. In two weeks we will also get images of his eyes taken to better determine the source of vision troubles. New treatment options are always welcome, we hope for more good news on the horizon!

Here is Garrett hooked up in the chemo room at the end of this round of treatment.  It was a quiet day in the doctor's office and everything went smoothly.

Uneventfull Eye Doctor Visit

So today I had my much anticipated eye doctor appointment, but other than being told that I had 20/40 vision in my right eye (poor eye sight), we did not get any real answers to the problems that are keeping me from doing a lot of things, most notably working.

For those who don't know or know little about my vision problems, they started a couple of months ago when I was hospitalized for 3 days with really low blood levels. The timing may be a coincidence or not, we don't know. Basically though, the best analogy I can use of whats happening is you know that feeling you get when you accidentally look at the sun and how it feels when you look back away? It's like that but just randomly happens without having looked at any bright lights. I also have been having a lot of trouble just adjusting to different light levels, especially inside artificial light. The other issue is just having trouble reading and writing. I can barely see to even sign my name to endorse a check. Makes it sort of hard to work, especially as most of my job involves writing down numbers, drawing sketches and reading small print blueprints.

Anyway, back to the eye appointment results, the doctors only real results were that he saw some swelling or evidence of pressure against the optic nerve. I think he also said there was some evidence of optic nerve damage but I am not sure if thats exactly what he said. Basically, until he speaks with my oncologist who is familiar with my head tumor positions and is able to review my most recent head MRI, there is nothing he can really diagnose.

Personally from hearing him talk the little bit he was able to explain, I am guessing that it is possible that one of my tumors has either damaged the optic nerve previously, or one of the tumors is currently pushing against the optic nerve, causing the pressure. We just won't know much until he gets to review the MRI.

All in all, a disappointing visit. No real results, with the only probable results not being the best of scenarios. I guess I am just a bit frustrated to not know when or if this problem is going to get resolved. I really want to get back to work and be effective but as it is now its going to be really hard. I actually went to work twice this week for a few hours each day for the first time in 3 months. I basically wanted to check and see what I was capable of and the results weren't all that good. I was able to see better in general than I had anticipated, but it seemed like I was only able to do things at about half speed and the fatigue in my eyes hit fast.

So, I guess for now all I can do is keep the positive thoughts going and hope that when and if the eye doctor reviews the MRI that some good news comes our way. The problem is my next appointment isn't for another month, so it will be more of the waiting game for now.

Change is difficult

We have been on a pretty good roller coaster ride the last few weeks, but we learned so much about how our nation’s employer-based health insurance system works. (It’s top on my list, but I don’t blame you if you are just plain tired of hearing about health care reform, skip this paragraph if you need a break from it all.) We are both so lucky and grateful to have jobs with remarkably supportive employers, especially in this economy, but we see more clearly now how they are impacted by the rising cost of health care and can be penalized for employing those with chronic illnesses. Not only must employers absorb or pass on the rising cost of premiums, when coverage gets too expensive they must cut back benefits, increase employee deductibles or drop it all together. Rising premiums are exacerbated for small companies with group health insurance by the most unjust factor – experience rating. Based on the claims or cost of health services used by employees every year, premiums can rise dramatically for the whole group. It’s clear why we are so lucky, while the other half of employers with 3-9 employees offer no health insurance at all. And worst of all, when you lose your job (or have another change in life circumstance) in this system you also are burdened by losing your health insurance. Bah! Whose idea was this anyway?!

After some ups and downs shopping for potential group plans, we were presented an individual health insurance plan that works for us and keeps Garrett’s claims from affecting his employer’s experience record. While Garrett remains committed to working as much as he physically can, this also means he has a policy he can take with him if he ever has to leave his office. I am so glad that there was any health plan available to him and affordable for us. I wish every person had opportunities for continued coverage when they get disastrously sick, lose their job, want to start their own business, get a divorce or otherwise have life changes that should not preclude them from having health insurance.

Garrett and I carpooled to work this week which was a great accomplishment given his continued vision trouble and ongoing fatigue. No treatments this week, but we are looking forward to an appointment with the eye doctor tomorrow. It has been months since I’ve seen Garrett as giddy as he was today when the Huskies beat Marquette, he seriously did a celebration run through the whole house. Hope UW keeps it up on Saturday against New Mexico...

Refueled

Garrett's blood transfusion (2 red blood cell untis + platelets) went smoothly today, he's feeling tired tonight, but his energy might pick up this weekend.

Since I don't have anything else to post today, here is one of his crowd pleasing childhood photos :)

Health Care Frustrations

I know MaryEllen has blogged about this a couple of times but this post is by Garrett, the sick and emotional Garrett, maybe not the most rational Garrett. I usually would never get involved and waste peoples time by posting this but I have reached my boiling point. Recently my boss has basically had to go in search of new insurance for my company because of the jack in prices that our current insurance company who shall go nameless has given to my boss. Oh yeah, and the biggest issue with the rise in premiums is likely because of one employee, ME.

I have worked there about 6 years now, 3 of which I had never filed a single claim and hadn't seen a doctor for any reason for probably 10-15 years. Boy have I been a huge burden on the insurance company. Well we all know that 3 years ago I had a reversal in fortune and became unexpectedly sick. Great right, thats what insurance is for so when and if you get sick, you have someone to back you and make sure you don't go broke and homeless because you can't afford the astronomical cost of health coverage. I guess I misunderstand the meaning of insurance.

Well lately we have come to learn that my new claims history since becoming stricken with cancer is causing my boss to have to seek new insurance for the entire company because the current insurance company basically does not want to cover me specifically. So basically right now I feel like a giant burden on my boss and my company as a whole. It's horrible that I have to deal with this junk and feel like this on top of everything else I am going through.

There are tons of more details to this story that would take me 20 minutes and much boredom to type out but needless to say this has all opened my eyes to how big of criminals these insurance companies are. Like one of my good friends told me today, they know what they are doing to people like me and know what they are guilty of and are just trying to dehumanize everything. I am a case number, not a cancer patient.

I still don't believe Obama's ideas are what this country needs and I honestly don't know what the solution is but reform is what America needs. I know I sound like a liberal right now but there is no way we as Americans can allow these insurance companies to keep getting away with, excuse my language this bullshit. I have finally snapped and encourage everybody, whether Republican or Democrat to get involved and knowledgeable. I don't care if the solution is public coverage or privatized, it just CANNOT stay how it is right now.

Sorry for the rant, I have just been pretty emotional about this subject lately because how it is affecting me and a man who has been like a second father and an amazing mentor to me, my boss. It is not fair that he has to get jerked around and ripped off because of my health issues. So please just take a few minutes a day or so and keep up on the current events going on and get involved if you can.

Chemo #4

Another successful dose of chemo today. Garrett’s blood counts were low (he’s been feeling the usual low symptoms) but we went forward with chemo and scheduled a transfusion for this Thursday. Since things aren’t getting better with his vision, we got a recommendation for a local ophthalmologist who is a UW grad so he must be brilliant and cool, go dawgs. We will make an appointment with him next week and hope that he has some ideas for the cause and solution of Garrett’s blurry/light sensitive vision.

There is only one important time and that time is now

Despite your opinion on how this should be done, I want to ask you all to support some kind of change in our health care system sooner rather than later. If you are fortunate enough to work hard, earn your health insurance, access preventative medicine and annual cancer screenings and afford to pay your health care bills, very good for you, you are living the dream! We have been amazingly well supported through Garrett's employer based private insurance, but so many cancer patients and other sick Americans are not that lucky. We are forever grateful for the insurance coverage we have had so far, but built into the system are so many catches, inequities, inefficiencies and flat out disasters that it is not working to support our country's general health or especially those with catastrophic health conditions like cancer.

I will not claim that the proposal out there now is the magical answer to all our health care problems, but trying to do something better is long overdue and it is my wish that we try something new at this point. If it does not work and/or needs adjustments I will be speaking up about it again in the future, as we all should. But I believe the worst thing we can do now is wait longer, fight about it more and let cancer patients continue to reach their lifetime benefit limits, delay diagnosis or treatment, get denied and dropped, or go bankrupt paying for their own care. No matter how you feel about our government's current social assistance programs or the inclusion or exclusion of a government run health insurance option, this is a matter worth moving forward on. And then continuing forward, making changes to it as many times as necessary to improve the health and life of us all, especially those who don't have any choice in the matter of living with cancer.

A simple way to show your support is to sign the American Cancer Society Cancer Action Network's petition to congress. It simply says that you support taking action now, making forward progress without delay.

The week off... almost

Yesterday we had a follow up with our radiation oncologist. He wanted to see Garrett a few weeks after finishing hyperthermia and go over any symptoms lingering from radiation that we did to the skull a few months ago. Garrett has had ongoing issues with vision and headaches, then just this weekend I noticed two spots of hair loss each a few inches wide on the back of his head (in the exit path of the radiation beams). The hair loss is a clear radiation side effect, but with others we can never be exactly sure what is causing them since anemia, iron toxicity, chemo and the concussion could all be contributing factors.

Since what we assume are radiation symptoms have not been getting worse our doctor was not concerned by them and good news was the strangest of all the symptoms has been decreasing in frequency. That symptom is random short term tongue swelling/control that slurs speech, controlled by an area of the brain near to the skull tumor we radiated. Since its occurrence is decreasing our doctor thought the radiation probably did its job on the tumor and swelling around the treatment area is likely diminishing so that the speech trouble would eventually stop completely. The vision issue he was less sure about, if it is a side effect of radiation at all or if it will ever go away. Instead of sending Garrett for more uncomfortable head scans, he said to keep track of symptoms and come back if any one is increasing or becomes too bothersome. We appreciate his reasonable approach to every thing.

They took more photos of Garrett’s skin tumor to document the hyperthermia treatment progress, but we can’t see a big difference on the surface yet. We hope that bleeding is a part of the healthy tissue’s return because that has been an occasional problem over the last few weeks and we are so looking forward to the healing process. No chemo this week, but next week should be dose #4 and we hope that it too is doing a number on the cancer in all areas of his body. The low dose does seem to be catching up with Garrett a little, but maybe he is also getting closer to needing another blood transfusion.

The rest of this week, appointment free, is a little breather but will no doubt fly by as all good breaks in life do.